Re: [cml 2] New drug on the horizon

2007-01-31 20:47:11

Hi Cheryl-Anne,
I responded to this article on Jerry's list....to me this sounds like
drug company hype....the type of thing written for stockholders.
A number of us (myself, Jerry Mayfield and others I know) were on triple
therapy in the old days...inf, ara-c and HHT (via catheter at that time...I
think it is in pill form now)........and the results of this combo were
nothing spectacular. This was in 1999 at MDACC. Also, I know at least one
person who did Gleevec and HHT at Hammersmith in the UK recently....and I
believe stopped because of bad side effects.
So this is not really a new drug, and I don't remember anyone thinking it
was really impressive.
Nancy C.

Re: Zavie -- a number request

2007-01-31 10:05:59

I posted a picture of our family -- Ben was 3 days shy of his 1st
birthday when Stew was diagnosed, and Meredith was born 2 weeks before
Stew's tests that proved to be CCR. Quite a bit packed into these past
18 months!
Amy

Re: Edema

2007-01-31 09:38:46

Did not notice it much when I flew a year ago to Seattle. But I do
have to get out and walk stretch about every hour and a half when we
are driving. Same with work, If I do not do a walk about every hour
or so my legs tend to swell, become numb, and just plain old stiff.
Richard H.

Edema

2007-01-30 23:55:39

Hi all,
I am here in Kansas. I have noticed that when I fly, my legs tend to swell.
Does anyone else have this problem? Or is it just me? My flight was
uneventful. I am at my son's apartment. He had to go back to work. It just
gives me time to unwind and check e mails.
Shelley

chat tonight

2007-01-30 21:02:17

Hi Everyone,
Zavie (who normally runs the Tuesday evening chat) is away on vacation
so instead of chatting on the messenger like we usually do, tonight
we'll try the chat room that is connected with this website.
To join, all you have to do is click on the "chat" icon at the left of
the screen on the home page.
Hope to see you there,
Tracey
PS chatting begins at 9pm eastern, 6pm pacific.

Bcr-Abl sensitivity to IM at diagnosis

2007-01-30 15:30:11

Hello friends,
I'm back from a trip to France with my family, which was lovely despite
broiling hot weather and a newly expanded waistline that reflects all the
great French food I consumed! I'm just beginning to catch up on CML posts -
and probably won't get to all of them.
The following abstract from Blood is really interesting. These researchers
from Down Under studied the in vitro (in the test tube, that is, not in the
patient) sensitivity to Gleevec of Bcr-Abl taken from cells from newly
diagnosed CML patients. They found that the dose of IM required to cut the
Bcr-Abl enzyme's activity in half (IC = "inhibitory concentration;" the
IC50imatinib is the concentration of IM at which 50% of the Bcr-Abl activity
was suppressed) was strongly correlated with time to a 2 log reduction in
qPCR at 2 months, and to 3 log reduction at 12 months.
This result isn't really surprising, but it's nice to see it confirmed.
Also, once other CML drugs are approved, in vitro IC50 testing may be a
useful way of deciding who should be on what drug.
Best wishes to all,
Richard R

Re: [cml 2] vacation-Shelley

2007-01-30 12:23:37

Shelley, please enjoy your vacation and let us know how it went! - Lynne A.

New drug on the horizon

2007-01-30 08:16:27

This drug Ceflatonin is actually homoharringtonine or HHT. I was wondering
if any of the list members going to MD Anderson have come across this trial
drug or if we know anyone who is in the trial. From what I understand HHT
goes after a number of pathways including regulating apoptosis and
angiogenesis. This might be interesting since we all know it will take a
combination of drugs to "cure" CML.
Happy reading!
Cheers,
Cheryl-Anne
ChemGenex and Stragen Pharma Create Alliance to Accelerate Clinical
Development and Commercialization of Ceflatonin(R)
Monday June 27, 7:00 pm ET
MELBOURNE, Australia, and MENLO PARK, Calif. and GENEVA, June 27
/PRNewswire-FirstCall/ -- ChemGenex Pharmaceuticals Limited (ASX: CXS,
Nasdaq: CXSP), based in Melbourne, Australia and Menlo Park, California,
U.S.A., and Stragen Pharma S.A., based in Geneva, Switzerland, today
announced an international alliance to accelerate the clinical development
of ChemGenex's lead anti-cancer therapeutic, Ceflatonin®.
Ceflatonin® is currently in a Phase 2 Clinical Trial at the M.D. Anderson
Cancer Center in Houston, Texas treating chronic myeloid leukemia (CML)
patients who are resistant to Gleevec®. In addition to CML, Ceflatonin® has
established clinical activity in other hematological malignancies (blood
cell cancers) including myelodysplastic syndrome (MDS) and acute myeloid
leukemia (AML).
ChemGenex and Stragen will combine their respective strengths to pursue
clinical approval of Ceflatonin® in the US, Europe, Australia and other
territories. ChemGenex provides expertise in drug development and clinical
trial management while Stragen offers GMP manufacturing, distribution, and
marketing expertise.
Stragen has a patented manufacturing process for a semi-synthetic highly
purified form of homoharringtonine, the active molecule in Ceflatonin® and
has patented a suite of derivative molecules of homoharringtonine. ChemGenex
will exclusively license the global rights to Stragen's manufacturing
process and novel analogues under the terms of the alliance.
Under the terms of the alliance ChemGenex will be responsible for the global
clinical development of Ceflatonin®, as well as registration and marketing
in North America and Asia-Pacific. Stragen will be responsible for drug
production and global supply, as well as facilitating regulatory approvals
within Europe. In addition, ChemGenex will engage Stragen's established
European clinical network to accelerate the development of Ceflatonin®. Once
Ceflatonin® is approved in Europe, the alliance partners will market the
product under the ChemGenex brand. The eventual profit split of sales in
this territory will be shared ChemGenex 49%, Stragen 51%.
"The alliance with Stragen is a great opportunity for both companies to
capitalize on our respective strengths and to accelerate the development of
Ceflatonin® as a potential new therapy for chronic and acute leukemia," said
Greg Collier, Ph.D., chief executive officer and managing director of
ChemGenex Pharmaceuticals. "This alliance expands ChemGenex's global
presence and gives us an outstanding partner with whom to progress
regulatory approval and eventual marketing of Ceflatonin® in Europe."
"We are very pleased to be able to partner with ChemGenex on the development
of this promising anticancer drug," said Jean-Luc Tetard, president of
Stragen Pharma. "Stragen's manufacturing capabilities and established
European drug distribution and marketing network, combined with ChemGenex's
strong clinical development and pharmaceutical marketing capabilities make
this an ideal partnership for the development and commercialization of
Ceflatonin®."
Stratégie de Communication Med Summit Inc/Sommets Médical
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Re: [cml 2] Zavie -- a number request

2007-01-29 20:02:15

Congratulations on all your good news......2 things to be really happy about.
Best wishes,
Nancy C.

Zavie -- a number request

2007-01-29 13:37:08

May was a really great month for our household -- Stew's latest
results from MDACC were all clear Ph+ wise. Also, his PCR results
decreased from 0.72 to 0.11. Zavie, could Stew join your list?
Our other big news is that our daughter was born May 3rd ... she's
healthy and an absolute delight.
Amy
wife of Stew
diagnosed 11/03
CCR 5/05

Stem Cell Harvest Decision

2007-01-29 11:54:36

Hi all. I hope this finds everyone doing well! I continue to keep
you all in my thoughts and prayers. It was great to see Gregg's
good news and I know we are all buoyed by this!
After much thinking, pondering, mulling and perusing - I've decided
to go with the stem cell harvest in early August (August 2 - 11).
Dr. DeLima (Gregg and Dane's dr.) will be doing it for me and I have
utmost respect and confidence in him. I will have to be off the
Gleevec for two weeks - which makes me a bit nervous - then four days
on Neupogen - then hopefully a three day PB harvest. Of course
there is some amount of intrepidation . . . but I think I've worked
through most of my anxiety.
Larry plans to bring his laptop with him and he'll work while I am
there. We also hope to visit some of the sights in Houston as well
as take a side trip to Galveston - with it's quaint houses and water
views. I believe it's about an hour and 1/2 from Houston. We'll
rent a car so we can do some 'fun' things.
I don't have any results yet from my 6/14 visit to MDA. Hopefully
I'll get the results in a few weeks and let everyone know how I am
doing. While I was there, there is lots of positive expectations
from the AMN trial that my dr. (Dr. Giles) is heading up. So there's
lots of exciting things 'in the pipe'. Not to mention lots of hope.
Sending my love to all of you,
Barbara

Re: [cml 2] Dane's Digital Moments 6/27

2007-01-29 05:55:21

Dane, your photos are wonderful, of a terrible tradegy. My prayers go to the
family. Debra
Dane <dane714@...
morning. We awoke to sirens and lights.
Link to pictures: http://www.fototime.com/inv/0EB8224ED786D48
No one seriously hurt, husband singed his arm on the way out. All 4 dogs got
out too. Too close for comfort. The firefighters attacked the house from the
rear, and the flames just moved forward at amazing speed.

Re: [cml 2] First BMB in 1 1/2 years

2007-01-28 18:46:51

Hi Susan,
Thanks for sharing all this expert opinion from Dr. Goldman.
The experts agree..........bmbs once a year..........grit your teeth and
endure it
or if you doc is that bad, find someone else to do it.
And anyone can get a blood sample to a cancer center for a QPCR.
You are right about educating our doctors about the correct 'standard of care'.
Thanks for posting this,
Nancy C.

Cancer drug may fight smallpox, study suggests

2007-01-28 14:23:59

Hi Group,
Cheryl-Anne mentioned the substance of this article in a previous
post, but this one just hit the newswires in California...
Warm Regards,
Kristin

First BMB in 1 1/2 years

2007-01-28 09:09:54

Hi All,
Since I got word 2 weeks ago that I had 3 interphase cells in my FISH, I have
had a quantitative PCR (no results yet), lots of other tests as part of a
research project at NIH and today a BMB. I should know a lot in a week or so
where I stand. I repeat something I said a week ago. Dr. John Goldman, well
regarded as a CML expert in the UK is doing CML research at NIH and he said
quantitative PCRs are essential and that Europe is 10 years ahead of the U.S. in
doing them. Start nagging! They can only be read at certain labs and they're
all different but still worth the effort.
Also, four years into CML I was being told that as long as I had regular FISH
that I wouldn't need BMBs. I knew that was wrong and once again the patient
knew more than the doc. Don't get lazy about your testing. Nag, nag, nag.
Susan L

Possible new use for Gleevec?

2007-01-28 05:05:09

Cancer Drug Slows Poxvirus in Mice
Mice given a relatively new cancer drug can survive an otherwise lethal dose
of vaccinia virus, a relative of smallpox virus, report scientists supported
by the National Institute of Allergy and Infectious Diseases (NIAID), part
of the National Institutes of Health. The findings, say the investigators,
suggest that Gleevec or similar drugs might be useful in preventing adverse
side effects of smallpox vaccine. The classic smallpox vaccine is made from
live, weakened vaccinia virus and is not recommended for people with
compromised immunity, except in emergency situations where they may have
been exposed to smallpox virus.
This study helps illuminate the cellular machinery used by poxviruses to
exit infected cells, and also provides new support for the concept of
treating viral infections by targeting specific host cell molecules rather
than the viruses themselves, says NIAID Director Anthony S. Fauci, M.D.
The senior author of the paper, published online this week in the journal
Nature Medicine, is Daniel Kalman, Ph.D., of Emory University School of
Medicine in Atlanta.
Like all viruses, poxviruses co-opt various cellular molecules and processes
to enter a cell, replicate and then spread to uninfected cells. Using lab-
grown cells, Dr. Kalman and his colleagues identified specific cell proteins
vaccinia uses to detach from an infected cell and move toward an uninfected
cell. The proteins, members of the Abl-family (pronounced able) of
tyrosine kinases, are well known to cancer investigators because mutation of
one family member, Abl, causes a rare form of cancer known as chronic
myelogenous leukemia (CML). Gleevec inhibits Abl-family tyrosine kinases and
has proved very useful in treating CML.
To learn whether Gleevec could prevent or lessen vaccinias ability to
spread in a living organism, the researchers treated mice with either saline
solution or with Gleevec at a dose equivalent to that given to humans being
treated for CML. Next, they exposed the mice to ordinarily lethal amounts of
vaccinia. All of the Gleevec-treated mice survived, while 70 percent of the
untreated mice died.
This finding, if confirmed in additional animal model studies, suggests that
Gleevec might play a role in addressing a public health emergency in the
event of a smallpox outbreak, Dr. Kalman says. Specifically, Gleevec might
be useful as a preventive against adverse effects of smallpox vaccine,
enabling clinicians to use the vaccine even in people who otherwise could
not take it. Given for a short period, Gleevec theoretically could hamper
the cell-to-cell spread of virus and allow the bodys immune system to mount
a successful defense, he explains. Experiments to test whether Gleevec might
work against smallpox virus as well as against vaccinia virus are now being
planned, Dr. Kalman says. The approach of fighting disease by targeting
drugs to cellular molecules rather than to disease agents themselves may be
applicable to a wide variety of pathogenic microorganisms, he says.
Routine vaccinations for smallpox ended in this country in the early 1970s,
and the World Health Organization declared smallpox eradicated in 1980.
Nevertheless, concern remains that smallpox virus could be unleashed through
an act of bioterror. For this reason, scientists are working to better
understand the mechanisms of smallpox disease and to develop new and
improved smallpox treatments and vaccines.
NIAID is a component of the National Institutes of Health, an agency of the
U.S. Department of Health and Human Services. NIAID supports basic and
applied research to prevent, diagnose and treat infectious diseases such as
HIV/AIDS and other sexually transmitted infections, influenza, tuberculosis,
malaria and illness from potential agents of bioterrorism. NIAID also
supports research on transplantation and immune-related illnesses, including
autoimmune disorders, asthma and allergies.
News releases, fact sheets and other NIAID-related materials are available
on the NIAID Web site at http://www.niaid.nih.gov.
The National Institutes of Health (NIH) The Nation's Medical Research
Agency is comprised of 27 Institutes and Centers and is a component of the
U. S. Department of Health and Human Services. It is the primary Federal
agency for conducting and supporting basic, clinical, and translational
medical research, and investigates the causes, treatments, and cures for
both common and rare diseases. For more information about NIH and its
programs, visit www.nih.gov.

vacation

2007-01-27 21:45:27

I will be leaving for Kansas City,Ks on Tuesday. If anyone lives nesr there and
would like to meet up, please e mail me at: ornurse954@.... Hope to see
someone there.
Shelley

Dane's Digital Moments 6/27

2007-01-27 17:24:12

A house two doors down from us burned down this morning. We awoke to sirens and
lights.
Link to pictures: http://www.fototime.com/inv/0EB8224ED786D48
No one seriously hurt, husband singed his arm on the way out. All 4 dogs got
out too. Too close for comfort. The firefighters attacked the house from the
rear, and the flames just moved forward at amazing speed.

Re: [cml 2] More from the Conference in Ireland

2007-01-27 06:08:01

Thank you Suzan and Cheryl, you are both great. God Bless.
Teresa T

More from the Conference in Ireland

2007-01-27 06:03:18

Hello Everyone,
Suzan McNamara and I have been busy working on our notes since our return
from the New Horizons conference in Dublin, Ireland.
Saturday, June 18th was quite busy and exciting with lectures from Dr.
Laurie Letvak, Head, Global Medical Affairs, Novartis and Dr. Francis Giles
of MDACC. Contrary to what we thought, Dr. Giles's talk was different from
the one he gave just before the conference on the LLS teleconference call.
We are uploading two files with the notes from both of the lectures on
Saturday morning.
We will be finishing up summarizing the workshops in a very short time.
Good reading, and do not hesitate to ask us any questions on our notes.
Cheers
or as they say in Gaelic
Slainte (pronounced slawn-che)
Suzan and Cheryl-Anne

Aging Well/WSJ

2007-01-26 19:23:56

Aging Well
Older patients may have to fight to get the right care
By KELLY GREENE
Staff Reporter of THE WALL STREET JOURNAL
June 20, 2005; Page R5
When 66-year-old John Rowe was diagnosed with leukemia five years ago,
he started researching cures -- and hitting brick walls.
First, Mr. Rowe's oncologist told him that the death rate was too high
for people over 50 to attempt a bone-marrow transplant. Next, he was
told that he shouldn't take Interferon, a proven cancer treatment that
could lead to remission, because it would make him feel like he had a
perpetual case of the flu.
Finally, when he pressed the oncologist about a clinical trial for
Gleevec, which at the time was still an experimental cancer drug,
"this young doctor looked me in the eye and said, 'Look, Mr. Rowe, you
don't understand. That drug is in short supply, there's high demand,
and they aren't going to waste it on you.' "
So, on his own, Mr. Rowe, a Census Bureau retiree, snared the last
spot in a clinical trial for Gleevec in nearby Baltimore, and in one
year was in remission. Today, he's still cancer-free. "Age isn't just
chronological," he says. "Attitude has a lot to do with it."
The evidence is piling up that many doctors share the age bias that
Mr. Rowe experienced -- despite the fact that many older patients with
serious illnesses respond well to treatment. Research shows that older
patients aren't being steered toward the medical screening and
preventive care they should get, even though Medicare would pay for
much of it. And detected illnesses often go untreated.
To make matters worse, research also suggests that many older patients
share their doctors' bias, believing that aches and pains are an
irreversible part of aging.
"There is a lot of withholding of aggressive medical treatment for
people, based not on the evidence of whether they will benefit or not
but by the perception of the physician that they're too old to
benefit," says Daniel Perry, executive director of the Alliance for
Aging Research, an advocacy group in Washington.
Adds Stephanie Studenski, a geriatrician and professor at the
University of Pittsburgh: "Chronological age is a poor reflection of
life expectancy and ability to tolerate treatments. There are
85-year-olds who might seriously consider aggressive treatment and
there are 65-year-olds who might not. But we know there's a widespread
relationship between age and whether someone is offered these options."
Going Undetected
Nine of every 10 adults over age 65 go without appropriate screenings
and immunizations, according to the Centers for Disease Control and
Prevention in Atlanta, and one in three older adults don't get flu
shots. Even fewer get pneumonia vaccines.
At least one in four people who are 65 or older have enough of a
hearing impairment to affect their ability to work or drive -- but the
majority of older people aren't assessed for hearing loss, according
to a 2003 study led by Seattle researchers.
And a study four years ago of 200,000 women age 50 or older found that
40% had osteopina, 11% had suffered from fractures since age 45, and
7% had full-blown osteoporosis -- but none of them knew it because
their doctors hadn't identified the problems.
But getting a health problem diagnosed doesn't guarantee it will be
get treated. Heart disease is the No. 1 killer of people who are 65
and older. Still, more than a third of doctors consider high blood
pressure to be a normal part of aging, according to a 2002 study by
University of South Carolina. Other researchers have found that nearly
half of Americans age 50 and older don't realize they have
hypertension, and that half of the hospitalizations of Medicare
beneficiaries with chronic heart failure are preventable.
Less than half of people 50 or older have received one of the two most
common types of colorectal screenings, despite the fact that colon
cancer is second only to lung cancer as a cause of cancer-related
deaths, according to the American Cancer Society. And just over half
of 4,768 colon-cancer patients in the 65-plus age group, diagnosed
between 1992 and 1996, received chemotherapy -- despite the fact that
it was "significantly associated with reduced mortality in older
patients," according to a 2002 study by Columbia University researchers.
Similarly, a study released in March found that older and younger
breast-cancer patients showed similar reductions in cancer recurrence,
and death, from chemotherapy -- even though chemotherapy is
"frequently not offered" to otherwise healthy older women. Of the 146
ovarian-cancer patients studied at the Memorial Sloan-Kettering Cancer
Center in New York, only 17% over age 65 received aggressive
treatment, compared with 46% of their younger counterparts.
Little has been done to recognize or treat older patients with chronic
depression as well. Older people are disproportionately likely to die
by suicide, with white men age 85 and older the most likely to do so,
according to the American Association for Geriatric Psychiatry. Mr.
Perry of the Alliance for Aging Research says that nearly 40% of older
adults who commit suicide do so within a week of seeing their
physicians, showing that doctors aren't recognizing depression in
these patients.
Sometimes a doctor's reluctance to medicate an older patient is simply
based on a lack of evidence that it will work. From 1991 to 2000, 40%
of clinical trials excluded people over age 75, according to the
International Longevity Center in New York. And a study of nearly
29,000 cancer patients in drug trials from 1995 to 2002 found that
only 36% were 65 or older -- compared with 60% of cancer patients overall.
Many doctors also lack the geriatric training that might help them
better weigh whether a patient should undergo treatment. Only about
10% of U.S. medical schools require course work or rotations in
geriatric medicine, according to the Alliance for Aging Research.
Taking Control
But there are some strategies for older patients who want their health
problems treated more aggressively.
Robin Kornhaber, senior vice president of patient services for the
Leukemia and Lymphoma Society in White Plains, N.Y., suggests two
tactics that patients with any illness could employ:
First, get a comprehensive geriatric assessment, preferably by a
geriatrician, to help your specialist assess the sort of treatment you
could withstand and ways you could shore up your body to help. For
example, "if nutrition is the issue, you could get meals brought in,"
she says.
Second, "it's really important to have a partner in your care," to
help you ask doctors questions and understand the answers, she says.
"You need someone there who can clearly hear what's going on, take
notes and talk through these things with you and other members of the
family." (You can get the society's "Toolkit for Older Adults with
Cancer and Their Caregivers" by calling 800-955-4572.)
What if you are the partner, and you're frustrated that your loved one
is refusing treatment? "It's important to try to keep that
conversation going and draw out what it is that's concerning that
older adult," says Dr. Studenski, the geriatrician. "Maybe they tried
a blood-pressure pill and felt very dizzy on it. Or maybe their
diuretic made them have to rush to the bathroom, or kept them up at
night." With those real-life concerns out in the open, she says, the
doctor can try to find a more comfortable alternative.
--Ms. Greene is a staff reporter in The Wall Street Journal Atlanta
bureau.
Write to Kelly Greene at kelly.greene@...

RE: Joan PCR

2007-01-26 15:22:41

Joan,
I AM SO HAPPY FOR YOU!!!
Keep the faith!
Lisa M
Tampa Fl
Dx 5-2000
Interferon/arc/hydrea
Gleevec 400 6-2001
8-2001 PCRU
Zavie's Club# 111
Message: 3
Date: Thu, 23 Jun 2005 19:32:05 -0000
From: "cellphonejoan" <joanfporter@...
Subject: pcr results
Hi all,
I received my 1st pcr results on my visit to the Dr. today.
The test read No BCR/ABL mRNA transcripts were detected.(Normalized
ratio = 0) My Dr. is pleased. He said I am at a molecular remission. I
am very happy. I hope this is right.
Joan P. in Jacksonville,Fl
dx'd 7/03
Gleevec 400 mg 8/03
Zavie's #662

Re: Still PCR Negative

2007-01-26 13:42:46

Hello Linda,
It's go good to hear from you! I remember putting your name on my
website when we only had about 20 names in the 'Zero Club'. Congrats
on your 'still zero'.
(One of these days I'm going to get a t-shirt made that says 'Still
Zero' - ha!)
Take Care,
Gale

basophils/Amy/A related question

2007-01-26 03:38:12

Hi Tracey and Susan,
Just to clarify this a bit--when you have interphase FISH done it is
done on interphase cells only. It only looks at cells in the interphase
cell cycle. Among those cells it looks to see what percent are normal
and what percent have the bcr-abl gene. So the 3% is really not how
many were in the interphase cycle it's how many were cml vs. normal
cells. Susan--there is always a false positive number for a FISH test
so you should ask what that number is at your lab. The false positive
is typically 1%-7% or so and if you are at or below the false positive
number for the lab you are considered negative (or at best they don't
really know for sure whether or not they have found any cml cells). I
hope this helps.
Best wishes,
Dorothy

Still PCR Negative

2007-01-26 00:45:25

Hi,
I haven't posted in a long time. Just thought I'd let you all know
that I am still PCR Negative. My side effects remain with me, but am
still happy to be on Gleevec in spite of the nuisances.
It is so exciting to hear about the BMS drug and know the new drug in
the pipeline will probably be available soon for the people that
Gleevec is no longer working. When it is approved or if I ever
qualify, I too will probably be changing to BMS.
Linda in CA, it's good to hear you are doing well. Congratulations on
being a new grandma. I do not have your email address anymore, and
can't read your email address on line, so if you have time, send me an
email Linda.
I still read most of the posts, I just don't post often.
Hugs from WY,
Linda B.

Aloe Vera Juice

2007-01-25 18:21:04

Hi All,
I wanted to share something that I've tried recently to help with the
upset stomach with Gleevec. I've started drinking a couple of
tablespoons of Aloe Vera juice in a big glass of water about 15 minutes
prior to eating lunch. Then I eat and take my Gleevec. I can usually
take all 400mgs at once (4 caplets) now, even if I eat a light lunch.
The Aloe Juice is tasteless and goes down easy.
Take Care,
Gale

Re: Back From Alaska

2007-01-25 10:25:31

What a great experience Gale. Thanks for sharing it with us and doing
it for us!
Tracey

Re: [cml 2] Back From Alaska

2007-01-25 05:02:46

What a moving story, Gale. I can't believe you raised $5.3 million! And had a
wonderful time to boot. Thank you for telling us all about it. I'll look at
the photos after I've written this thank you note.
Good for you!
Susan L (Glad you left a little of me on the trail to a cure)

Back From Alaska

2007-01-25 03:09:09

Hello All,
I've just uploaded 4 photos of our Alaska event. It was the most
memorable race & vacation!
The weather was great - slightly warm, even for this Texas gal -
except on race day. The temperature dropped to 60 degrees, the wind
and rain kicked up and we were wet the entire 13.1 miles. It was
actually much better to run/walk in the cooler weather than in the
heat, so it worked out fine. We beat our time from two years ago by
12 minutes on a much harder trail. There were lots and lots of long
up and down hills, with the last hill at mile 12 (named 'insult
hill') the real killer. We don't have hills in Dallas like the ones
in Alaska. But one foot in front of the other got us to the finish!
(As it does in so many things in life, ey?)
The jacket was a real hit! I had the opportunity to meet some 'old
timers' who'd been racing with TNT for over 10 years. When I showed
them the jacket (all 78 names) and personally thanked them for
helping so many people, most of them teared up. To quote one TNT
coach I met at mile 5: 'You make all of this REAL for me.'
The photo opportunities abounded.
I hope you don't mind, but I left some of you in Anchorage on the
Tony Knowles Coastal highway. Of the 78 names, some were on the
back, some on the sleeves. Those of you on my sleeves really got a
workout, with the wind and rain (Zavie - you were on my shoulder and
it didn't phase you a bit - guess you're used to these short
sprints!). The felt names stayed pinned onto my jacket, but the
colored trim began dropping off at about the 6.5 turnabout point.
So, the entire trail has little colored trim strips now ... a little
memento left for the moose and bald eagles to ponder.
Overall, it was a very emotional race for me. As I was approaching
the mile 6.5 turnaround, I looked up and saw about 20 purple shirts
(TNT colors) running toward me at full speed. I kept thinking - God,
I'm so glad they're here now. If there had been no purple shirts
here in years past, I'm not sure where I would be today. Gleevec
might have taken longer to develop, to get FDA approved, and for me,
another few months might have made a life/death difference. I
thought about my interferon days, when I could hardly lift my head
off the couch and someone else had to prepare my meals (which I
rarely ate), and how much better life is taking Gleevec. Never in a
million years did I dream that I would be running/walking a 1/2
marathon, but there I was.
I thought about Hunter, my 10 year old friend in Missouri with ALL, I
thought about CML grandmothers who now get to hold their
grandchildren because of Gleevec, I thought about Dane and his BMT, I
thought about all of you in your thirties, now able to go about your
life because of Gleevec. And I thought of all of you in the BMS and
AMN trials. Hopefully, the $5.3 MILLION collectively raised for the
Anchorage event will go a long, long way to helping all of us.
It was an absolutely incredible experience. Thank you all for
carrying me through!
Love to All,
Gale Bacon
- Living Well With Leukemia

Re: [cml 2] Alkaline vs Acid foods

2007-01-24 09:58:46

Hey Nancy.......
Reading the acid/alkaline post with interest ! I will have to try
this out...........
But, I am wondering, and I know you are right,....how can lemon
juice be alkaline ?? Seems impossible? If I drank lemonade right
now, I would probably have heartburn up to my eyes! Is that because
some lemon skin get into lemonade?
Just curious......it's just so weird!
Thanks.....Cathy

Gleevec usage prior to transplant -link not working

2007-01-24 04:57:13

Sorry, all. The link wouldn't work so I copied and pasted the whole
thing.
Barb
Conference Coverage
Stem Cell Transplants for Chronic Myeloid Leukemia (CML) EBMT 2004
Date: March 28-31, 2004
Location: Barcelona, Spain
Author: C. D. Buckner, MD
Introduction
The European Group for Bone Marrow Transplantation (EBMT) held the 30th
annual meeting in Barcelona from March 28-31 2004. At this meeting
there were several presentations about the outcomes of patients
receiving allogeneic stem cell transplants for CML. All the transplant
centers have observed a 50% or greater reduction in the number of
patients transplanted for CML in the chronic phase since the
introduction of Gleevec® in 2000. Dr. John Goldman of Hammersmith
Hospital, who is considered to be the worlds experts on CML, delivered
an opening address outlining the status of allogeneic stem cell
transplantation in the Gleevec® era.
Summary of Opening Lecture: Allogeneic Stem Cell Transplantation for
CML in the Imatinib Era by John Goldman
Dr. Goldman stated that Gleevec® has become the initial treatment of
choice for newly diagnosed patients with CML since the publication of
the IRIS study comparing Gleevec® to interferon and cytarabine.1-3
Current data suggests that 97% of newly diagnosed patients with CML
will achieve a complete hematological remission, 87% will have a major
cytogenetic reduction and 76% will have a complete cytogenetic
remission following Gleevec® treatment. Seventy-nine percent of the 553
patients entered on this trial are still receiving first-line therapy
with Gleevec®. Dr. Goldman stated that progression-free survival
following Gleevec® treatment depends on the log reduction of BCR-ABL.
Those with a 3 log reduction have a 100% PFS at 30 months compared to
93% for a 2 log reduction and 81% for a 1 log reduction. Despite these
results, Dr. Goldman stated that it is still too early to determine if
single agent Gleevec® will prolong overall survival compared with the
best available non-transplant therapy. He also stated that it is
unlikely that patients will be cured with Gleevec® since only 5% have
become PCR negative.
At the present time, most transplant centers have seen a 50-75%
reduction in the number of transplants for chronic phase CML over the
past 4 years because patients have opted for Gleevec® rather than a
transplant. The issue of timing of transplantation for patients with a
stem cell donor were discussed. There were 2 options presented with the
first being related to response to Gleevec®. In this option, patients
with a suitable donor are transplanted if they do not achieve a
complete hematologic response with 3 months of Gleevec® if they are
predominantly PH positive at 6 months or still have
metaphases at 12 months. In option one, patients would also be
transplanted if they had loss of a previous hematologic or cytogenetic
response or had a 1 log increase in BCR-ABL transcripts in a patients
who had achieved a complete cytogenetic response. The second option is
to transplant patients in chronic phase up to age 45 years who have a
sibling donor or up to the age of 35 years in those with a molecularly
matched unrelated donor as initial treatment. Dr. Goldman would also
use predictive models for success of Gleevec® versus success of
transplant. He presented data showing that the Sokal score, developed
in the busulfan era, also predicted for response to Gleevec®. Patients
at low risk on the Sokal score had a 94% PFS at 30 months, intermediate
risk and 88% PFS while high risk patients had an 80% PFS. There are
also predictive factors for success or failure of allogeneic
transplants. In registry data (EBMT and IBMTR), transplant related
mortality for patients 45 years of age or under is 15% but can be
higher with the presence of one or more adverse risk factors, such as
increasing time from diagnosis to transplant, a female donor,
increasing age and CMV positivity. Patients without any of these risk
factors would have a decreased treatment related mortality.
Effects of Gleevec® on Transplant Related Mortality
There is emerging evidence that Gleevec® can affect transplant related
mortality (TRM) and Dr. Goldman recommended at least 30 days between
discontinuing Gleevec® and transplant, citing deaths from
hepatotoxicity and a possible interaction with Tylenol and Gleevec®. In
a separate presentation from Hamburg, Dr. Zander reported that
treatment related mortality was 74% among 21 patients who had received
Gleevec® before transplant with an even higher rate for those receiving
Gleevec® within 15 days of transplant.4 In this study TRM in 21
patients who had received Gleevec® was compared to 23 control patients
who had not received Gleevec®. Treatment related mortality was 74% in
the Gleevec® compared to 40% in the control group while overall
survival was 16% in the Gleevec® group and 48% in the control group.
The major causes of increased TRM were severe GVHD and liver problems.
Treatment related mortality for those receiving Gleevec® within 15 days
was 80%.
Risk Factors and Outcomes of Allogeneic Stem Cell Transplants for CML
Researchers from Spain reported outcomes of over 1000 allogeneic
transplants for CML.5 The EBMT score is based on the cumulative number
of previously reported major pretransplant risk factors:
histocompatibility, stage of disease at time of transplantation, age
and sex of donor and recipient, and time from diagnosis to
transplantation.6 One of the major findings of this study was an
overall improvement for transplants performed after 1995. They observed
that patients in chronic phase less than two years from diagnosis and
less than 40 years old who were transplanted from an HLA matched donor
had a DFS of almost 80%.
Survival After Relapse of CML
There are a variety of treatments available for patients with CML who
relapse after an allogeneic transplant, including Gleevec®, interferon,
donor lymphocyte infusions and even a second transplant. Researchers
from Spain reported a 63% survival at 5 years for 106 patients
relapsing after an allogeneic stem cell transplant for CML in chronic
phase.7 They also reported a 20% 5 year survival of 20% in patients
transplanted for more advanced disease. The average time to relapse was
15 months and almost half the patients had only a molecular or
cytogenetic relapse. The most frequent treatments were interferon and
donor lymphocyte infusions. Factors that were associated with improved
survival were increased time from transplant to relapse and a
cytogenetic relapse.
In Summary
Patients with newly diagnosed CML will probably be treated initially
with Gleevec® and allogeneic stem cell transplantation reserved for
failures. At the present time virtually all patients will have a donor
when one includes siblings, unrelated donors and umbilical cord blood.
For younger patients a conventional stem cell transplant with
myeloablative conditioning is probably the treatment of choice but the
impact of Gleevec® on outcome is yet to be determined. Researchers are
currently trying to extend the age at which successful transplants can
be carried out by using non-marrow ablative regimens. Whether or not
this approach will be successful remains to be determined.
References
1. Hughes TP, Kaeda J, Branford S, et al. Frequency of Major Molecular
Responses to Imatinib or Interferon Alfa plus Cytarabine in Newly
Diagnosed Chronic Myeloid Leukemia. New England Journal of Medicine.
2003;349:1423-1432.
2. O'Brien SG, Guilhot F, Larson RA, et al. Imatinib compared with
interferon and low-dose cytarabine for newly diagnosed chronic-phase
chronic myeloid leukemia. New England Journal of Medicine.
2003;348:994-1004.
3. Lowenberg Bob, Perspective: Minimal Residual Disease in Chronic
Myeloid Leukemia. New England Journal of Medicine. 2003;349:1399-1401.
4. Zander A, Zabelina T, Renges H, et al. Pre-Treatment with Glivec
Increases Transplant-Related Mortality after Transplantation. Bone
Marrow Transplant. 2004;33, supplement 1:S60, abstract O352.
5. A Risk Factor Approach for Selecting Patients with Chronic Myeloid
Leukemia for Allogeneic SCT: A Model Based on the EBMT Score Applied to
the Spanish Registry. Bone Marrow Transplant. 2004;33, supplement
1:S60, abstract O354.
6. Gratwohl A, Hermans J, Goldman JM, et al. Risk assessment for
patients with chronic myeloid leukaemia before allogeneic blood or
marrow transplantation. Chronic Leukemia Working Party of the European
Group for Blood and Marrow Transplantation. Lancet. 1998;352:1087-92.
7. Martinez C, Gomez-Garcia de Soria V, Tomas JF, et al. Relapse Of
Chronic Myeloid Leukemia after Allogeneic Stem Cell Transplantation:
Outcome and Prognostic Factors. Bone Marrow Transplant. 2004;33,
supplement 1:S60, abstract O354.
http://www.caringbridge.org/wi/tomneddo

Gleevec Usage Prior to Transplant and Transplant Related Mortality

2007-01-23 23:10:05

I remember someone asking about Gleevec before transplant. I couldn't
remember which group posted the question, so I am posting this
information to all groups, excuse the repetition. This is an article
specifically about CML and stem cell transplants. There is also
discussion about taking Gleevec prior to transplant. The advice given
is to stop Gleevec usage 30 days prior to transplant because of liver
toxicity. Wish I would've read this sooner.
Here is a brief snippet of the article and the website:
Conference Coverage
Stem Cell Transplants for Chronic Myeloid Leukemia (CML) EBMT 2004
Date: March 28-31, 2004
Location: Barcelona, Spain
Author: C. D. Buckner, MD
Introduction
The European Group for Bone Marrow Transplantation (EBMT) held the 30th
annual meeting in Barcelona from March 28-31 2004. At this meeting
there were several presentations about the outcomes of patients
receiving allogeneic stem cell transplants for CML. All the transplant
centers have observed a 50% or greater reduction in the number of
patients transplanted for CML in the chronic phase since the
introduction of Gleevec® in 2000. Dr. John Goldman of Hammersmith
Hospital, who is considered to be the worlds experts on CML, delivered
an opening address outlining the status of allogeneic stem cell
transplantation in the Gleevec® era.
http://professional.cancerconsultants.com/conference_ebmt_2004.aspx?
id=30036
Barb Neddo,
Mom to Tom,
dx CML 8/04, MUD BMT 05/05/05
http://www.caringbridge.org/wi/tomneddo

Re: [cml 2] pcr results

2007-01-23 22:37:44

Great report card Joan!!
In case you are not familiar with all the terms.....this is what people call
PCRU ( PCR Undetectable)
Congrats,
Nancy C.

pcr results

2007-01-23 15:37:32

Hi all,
I received my 1st pcr results on my visit to the Dr. today.
The test read No BCR/ABL mRNA transcripts were detected.(Normalized
ratio = 0) My Dr. is pleased. He said I am at a molecular remission. I
am very happy. I hope this is right.
Joan P. in Jacksonville,Fl
dx'd 7/03
Gleevec 400 mg 8/03
Zavie's #662

Re: [cml 2] Hi from Linda in Ca

2007-01-23 07:17:54

Hi Linda,
I have recently been wondering where the heck you were???? glad you found
this list. Happy Grandma-hood!
Maui Nanc

Hi from Linda in Ca

2007-01-23 04:44:53

Hello;
Boy, the time has flown since i made my move back to the beach on
Feb 12th. I had a grandson born (1st)on April 30.
My hard drive went south for the winter and I am still working on
recovering data and addresses.
I see once again that if you close your eyes everything changes. We
have a new support group here and so much more that I have missed!
I am very well, for those who know me, and for those who don't,
hello to you.
My former identity was lindabones...I am now linda_in_ca
Hoping all is well for everyone. I still need to find doctors here
in Orange County but I am seeing Dr Sawyers and doing PCR at UCLA
every 3 months. Holding negative.
Looking forward to hearing from anyone who would like to fill me in
on anything...whew, it's been 4 months already!
xxx Linda in Ca

Alkaline vs Acid foods

2007-01-23 00:33:56

Hey Nancy!
Thanks for your insight regarding alkaline and acid foods and the
correlation of increased side effects from Gleevec and the foods we
eat.
I went snooping on the net and came across this dandy little guide of
alkaline foods and acidic foods.
Here is the link...
http://www.alkaline-diet-guide.com/alkaline_food.htm
It's very interesting. I am a healthy eater, but many of the items
that I have been trying to eat on the regular basis, ie: salmon,
lentils, beans, oats, turkey, etc.. are indeed acid foods. Who knew!
Why the heck can't our Dr's help us out on these things? When I ask
him why I'm having increased side effects, like substantial weight
gain, fatigue, and diarrhea, he just shrugs his shoulders with no
clue what to say. Grrrrrrrrrrr. All he said was... hmmmm, try
Weight Watchers... UGG. Do you think W.W's would have an Diarrhea
Diet? lol :-)
Well, I'm going to try some things out on this alkaline list and see
how I feel. It's difficult to stay with it completely, but if I
incorporate more items from the list into my diet, maybe things will
begin to change and improve. It certainly can't hurt!
Thanks again. I'll give it a whirl!
Lynn (Snickersunny)

Re: [cml 2] Fwd: Tracking Therapy in CML

2007-01-22 10:56:35

Could you just send the link as I can not read it in that fashion.
Thanks
Tanya
George, dx 7/20/04
400 mg Gleevec
PCRU by Fish qPCR .0019
Zavie Club #834
At 04:24 AM 6/23/2005, Shelley Orenstein intelligently penned
Could you just send the link as I can not read it in that fashion.
Thanks
Tanya
George, dx 7/20/04
400 mg Gleevec
PCRU by Fish qPCR .0019
Zavie Club #834

Fwd: Tracking Therapy in CML

2007-01-22 10:33:59

Thought that some of the newbies might like listening to this.
Shelley
Leukemia Update <healthupdate@...
From: "Leukemia Update" <healthupdate@...
To: ornurse954@...
Subject: Tracking Therapy in CML
Date: Wed, 22 Jun 2005 13:49:06 -0700
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underline;}A.elink:hover{FONT-SIZE: 12px;COLOR: #000022;FONT-FAMILY: Arial,
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none;}A.Copyright:hover{font-family: Arial, Helvetica, sans-serif;font-size:
10px;font-weight: normal;color: #BBBBBB;text-decoration: none;} June 22,
2005Leukemia Update On top the of various treatment options for chronic
myeloid leukemia (CML), there are many additional tests that can be done to
track a patients progress. Learn about these tests and how they can help guide
treatment.Monitoring Therapy in Chronic Myeloid LeukemiaA wide range of
laboratory tests are used to monitor a patient's response to therapy for chronic
myeloid leukemia. Listen to experts explain the tests and their range of
sensitivity.--
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Shelley

basophils/Amy/A related question

2007-01-22 08:58:50

Amy, Thank you also for the hyperlink. Some of it is above my noggin but it was
helpful.
Susan

basophils/Amy/A related question

2007-01-21 20:19:06

Thanks, Amy. I'm still baffled but am getting a BMB Monday and am waiting for
results of a qpcr done last week. All that information together should be
helpful.
Susan L

basophils/Amy/A related question

2007-01-21 13:53:16

Hi Susan,
From what I understand (and remember from biology class), the
term "interphase cells" refers to a particular part of the cell
cycle.....in other words it describes a part of the life of a cell
as it divides through the various stages....Gap 0, Gap 1, Synthesis
and Gap 2 are all part of the interphase cycle. Whereas a basophil
is a particular type of cell.
You would know what percentage of basophils you had from a simple
CBC but you would need to have a FISH to see how many cells are in
the interphase cycle...I'm not sure what percentage are supposed to
be in the interphase cycle so I can't tell you if 3% is high or low
or normal...sorry.
Tracey

basophils/Amy/A related question

2007-01-21 12:36:00

Thanks Tracey,
I've always had a zero fish so this was considered to be a significant increase.
I also asked Dr. Goldman about it but he didn't say anything about changing to a
trial drug either. I'm seeing him again Sept. 2nd though. He also performed a
qpcr so that information will be helpful, too. Also, I'm getting a BMB next
Monday.
Thanks!
Susan

basophils/Amy/A related question

2007-01-21 01:19:49

Ok. Last week I was told that I had 3% interphase cells. Is that the same as
basophils? My doc upped my dosage from 600 mg Gleevec to 800 mg where I was
before.
Susan L.

basophils/Amy/A related question

2007-01-21 01:18:19

Interphase cells are on a much more cytogenic level than Basophils,
from what I read. I asked Dr. K about the increase in Gleevec and he
said he would rather go to one one trial medications. Due to the side
effects. Basophils are one of the components of the WBC, and show up in
a CBC/Differential.
http://www.funpecrp.com.br/gmr/year2002/vol2-1/gmr0013_full_text.htm
This is where I read about interphase cells.

Re: basophils/Amy

2007-01-20 21:54:04

Hi Amy,
Did Dr. K say that there were any other signs that were concerning
other than the basophil increase? Do you know what your absolute
basophil count was (as opposed to the percentage count)?
My last test showed my basophils have also gone up. Our lab reports
don't show the percentages so I had to calculate it myself using the
absolute count. I figured it out to be 2.9%. Previous to that, it
was always in the 0%-1% range. I mentioned it to my doctor the last
time I saw him but he didn't say much. Now you have me wondering.
Did Dr. K say that there could be any other explaination for the
increase?
Lets hope we can both breath easier soon,
Tracey

Re: Back From MDACC

2007-01-20 07:22:45

Hi Amy,
Sorry to hear about the changes in your counts after 2 years on
Gleevec. I hope the biopsy results come back in your favor.
I'm curious as to what kind of side effects you are going through?
If you wouldn't mind sharing?
It seems like the longer I am on Gleevec, the harder and more severe
the side effects. I've been on it 1 1/2 years, and it's getting
tough sometimes.
My Onc doesn't seem to be concerned about the side effects as long as
I'm PCRU. So, I feel like I'm banging my head against the wall on
this one. Whoopee,, I'm PCRU and feel like crap! That basically
sums it up.
I'm on 400 mg too, and I'm very grateful for Gleevec.. Don't get me
wrong. I just wonder how bad the side effects need to get before a
Dr. decides a patient is intolerant? Is there any kind of guideline
to monitor the number of Gleevec side effects and when to start
looking into alternatives, such as the new BMS and AMN?
I may have to wait a very long time before I can switch over. I'm
grateful that I have had excellent results on Gleevec,, and it really
saved my life. But looking long term (isn't it nice we can do that
now)....I need to find something that will help me feel alive again.
Sincerely, Lynn (Snickersunny)

ging Stem Cells Linked to Leukemia in Elderly

2007-01-20 03:52:23

Aging Stem Cells Linked to Leukemia in Elderly
TUESDAY, June 21 (HealthDay News) -- Aging stem cells may be behind an
increased risk of infection and leukemia in older people, according to
a Stanford University School of Medicine study.
The report appears in this week's issue of the Proceedings of the
National Academy of Sciences.
The Stanford team found that in older mice, bone marrow stem cells
that create new blood cells produce fewer immune cells. That means the
bodies of older mice are less able to fight infection.
As well as producing fewer immune cells, the aging blood-forming stem
cells use genes known to be involved in leukemia -- cancers that
affect blood cells. This may be one reason why older people have an
increased risk of developing certain kinds of leukemia, the study
authors said.
The findings provide more evidence that aging stem cells or stem cells
responding to conditions in an aging body may be the source of a
number of age-related health problems.
"Aging results in a diminished capacity of the body to maintain tissue
and organ function. Since we know the cells mediating this maintenance
are stem cells, it doesn't take a great leap of faith to think that
stem cells are at the heart of that failure," study co-author and
postdoctoral scholar Derrick Rossi said in a prepared statement.
The researchers said this finding could lead to ways to improve immune
function or prevent leukemia in older people.

Great News

2007-01-19 22:07:14

That is great news Judy...im so happy for you...you deserve a good
break...and enjoy some of the summer weather they are having compared
to us down here in SA....well done.

PCR test

2007-01-19 12:10:55

Hi all,
I just got my latest PCR results. Undetectable in one million! I feel much
better as they said that I was slightly detectable last time. I see everyone's
notes, but sometimes find it hard to reply as I am quite busy. I do keep up
with all the news. My mom is having an angiogram on Thurdsday. If all goes
well I will be leaving for Kansas City, KS on Tuesday. Anyone in that area,
please e mail me at: ornurse954@.... Maybe we cna get together while I
am there.
I will be in Portland, Or. from August 20 thru the 26. Will anyone be there?
If so, let me know.
Shelley

New Horizons Conference in Ireland

2007-01-19 09:19:53

Hello All,
As most of you know, Suzan McNamara and I were part of the contingent of
patients to participate in the patient conference in Ireland. I have
uploaded a word document of our report (the first part) and we will be
finishing up the second report about the workshops by this evening.
Suzan and I were very happy to be warmly greeted by so many people that
we've met on line but never met in person. A big thank you to Giora for
saving seats for us for breakfast and in the meeting halls. Giora is a
wonderful, genuine and caring human being, we are all so fortunate to have
him with us and especially the CMLers of Israel who he works so hard for.
We also met Sandy Craine and her partner David, what a lovely couple. Sandy
and David and Elizabeth work so well together to run CML Support UK. Sandy
looks absolutely fabulous just 4 months shy of her 2nd anniversary of her
SCT, she is an inspiration to so many and we thoroughly enjoyed the sessions
she chaired and the sessions presented by David. We are looking forward to
seeing Elizabeth at this event next year and we can hardly wait to meet her.
We wish her a speedy and complete recovery from her SCT.
We also attended a workshop presented by Jan Geissler of Germany. Jan and
his wife do a terrific job of running Germany's most visited Leukemia
website and Jan is so active in the European Cancer and Leukemia community.
He has a lot of energy and insight and we are so grateful to him for sharing
his talents with us and offering us great tips on running an on-line CML
community. We look forward to working with Jan, Sandy and Giora and the
representatives from many other countries in the near future.
There were also members from Poland, Czech Republic, Portugal, France,
Bulgaria, Brazil, Croatia, Hungary, the Netherlands, Italy, Serbia and
Montenegro, and the USA.
The conference ran from Friday afternoon to Sunday at lunch time and there
is so much to report about.
Enjoy the first part of our report and more to follow later this evening.
Cheers,
Cheryl-Anne and Suzan

Back From MDACC

2007-01-19 05:17:00

Hey everyone! I'm home. I had my appointment with Dr. Kantarjian
yesterday and my BMA. Not the best experience to date. Two dry bma
draws, didn't start my visit off right. Third one worked, now w/o my
shedding some tears <I just hate that
because my Basophils are now at 2% from 0, which he said 'COULD' mean
my phillies are coming back or are up. I should have the BMA results
in two weeks and we will decide at that time which course to take. He
gave me a couple of options........1. We could raise my dose on
Gleevec, as I only take 400mg, and have for the last two years. He is
concerned about the increased side effects, since I have a difficult
time now. 2. I could go on the Phase II trail of BMS 3. AMN107
Trial. Now with either of the last two options I have to be in Houston
for a minimum of 1 month, and then be there once monthly there after.
I can do that. Anyway thats my news and my choices. I don't know much
about the AMN107, except that it is by Novartis. Anyone have more
details? Thanks for listening!
Amy B.

Re: Judy

2007-01-18 19:59:30

Whoo Hoo Judy! Very good news indeed. I'm so glad that you aren't
having those lung difficulties anymore. Have a great time in
Queensland!
Tracey

Re: [cml 2] Digest Number 103

2007-01-18 12:52:45

Hi all
I have some good news to share, I had my results from my last lot of tests
today. The quantative pcr result is now 0.03% this has dropped from 85% at
relapse last June, and 1% in January this year. My oncologist is very pleased
with reduction. The marrow test failed, but he feels it is not necessary to
repeat at this stage as the other test was so good. He says I have now had a 2
log reduction twice, is this true, I feel really well again, and have not had a
recurrence of the lung difficulties i had when I relapsed. So I'm going to
Queensland here in Australia for a few days on my own to gather my thoughts and
decide what to do now!!!
Judy Telford Melbourne Australia

Back from Ireland to a news article about Suzan McNamara

2007-01-18 11:03:35

Hi Everyone,
Suzan and I were at the New Horizons in Cancer treatment conference in
Ireland and will be providing an update in the next post. Here's a nice
article that appeared in today's Montreal Gazette.
Cheers,
Cheryl-Anne
Motivation is in her blood now
Suzan McNamara refused to die from leukemia. She campaigned until she got
into clinical trials of a promising new drug that would keep her alive.
Today, she is back in the laboratory - this time as a scientist
Monday, June 20, 2005
Suzan McNamara spends hours holed up in a research lab, just like other
science students studying for a doctorate.
In her case, though, the work is not only close to her heart but her health.
McNamara does leukemia research at the Jewish General Hospital's Lady Davis
Institute for Medical Research.
Fit from bicycling to work every day, and with a wavy mop of hair stretching
down her back, her appearance contrasts sharply with how she looked five
years ago.
Then, seriously ill from chronic myelogenous leukemia or CML, McNamara said:
"I was basically on my last limb." In January 2000, she took part in a
clinical trial in Oregon for a new ground-breaking drug that ultimately
restored her to good health.
Most patients who go through this kind of health ordeal want to get away
from it once things settle down, said Pierre Laneuville, a hematologist at
the Royal Victoria Hospital, who has treated McNamara.
But for McNamara, the new lease on life meant a new career path, where
leukemia has become a focal point. In the lab, she is researching resistance
to the standard treatment of acute promyelocytic leukemia.
When she worked as an office manager prior to her illness, McNamara wanted
to go into science "because I wanted to find meaning to a 9-5 job."
"Then after this happened, it was like, without a doubt, this is what I have
to do."
McNamara learned she had CML in 1998, when she was 31. "From the day I was
diagnosed, I didn't have any hope - no hope. But it didn't mean that I gave
up," said McNamara, a McGill University student.
The Swiss pharmaceutical company Novartis AG is familiar with her tenacious
streak. In 1999, with her health slipping, McNamara learned of a new drug
that was showing extremely promising results in preliminary tests. She
launched a petition on the Internet, calling on the company to boost
production of the drug, which was later named Gleevec, and expand its
clinical trials.
She hoped to get 500 signatures; within three weeks, 4,000 people had signed
the petition. Publications like the New York Times credited patient activism
- and McNamara's petition - with playing a key role in getting Novartis to
increase production.
McNamara got into a clinical trial in Oregon. Before she left her friends
threw her a party. Everybody had a stricken look on their face, McNamara
said, like when somebody is dying "and they're going to Mexico to take some
crazy medication."
McNamara started responding to Gleevec, which blocks an abnormal enzyme. By
then she was convinced she would live.
"I was coming back to an empty slate ... starting my life over again. And it
is just the most amazing feeling in the world."
She switched into molecular biology at Concordia University for her bachelor
of science degree. Then she got into an experimental medicine program at
McGill that allowed her to fast track straight to a PhD with five years of
research.
Cancer research - leukemia if possible - was her goal. "It's hard work and
it's low pay and you have to have your heart into it," she said.
McNamara has put herself through school with "a lot of loans and credit
cards." Her boyfriend also helped her. This year, she received a scholarship
from the Fonds de recherche en sante du Quebec. "I feel like I should be
here now, I got a scholarship," McNamara said, smiling.
Her doctor, Jaroslav Prchal, the director of the oncology department at St.
Mary's Hospital, says he believes it is wise for patients to maintain a bit
of distance from their disease and not try to be their own doctor.
Yet he suggested McNamara has managed to do both. "She is closer than most
people (to her disease) but at the same time she has enough insight into the
whole thing that she does not make her own decisions," Prchal said.
Novartis has sent McNamara to various events. They flew her to Ireland last
Wednesday for a CML patient support group meeting. They also flew her to New
York recently to do a television commercial and magazine ad for the company.
(In return, Novartis made a donation to a charity of her choice.)
McNamara conceded that being in the spotlight has been difficult. This is,
after all, a woman who has scolded friends for baking her a birthday cake
because she didn't want to be the centre of attention. Because it is such a
big drug, McNamara said she wants people to know about it. "But then when I
get the attention, I'm like, 'OK, that's enough.'"
Now 38, McNamara feels healthy and undergoes testing every six months to
make sure the leukemia remains in check. (She still has residual leukemia
that is only detected on sensitive tests.) Laneuville said they don't think
Gleevec can eliminate the disease completely.
"We think you can reduce it to a level where it doesn't cause problems ...
so it becomes a chronic disease that people can live well with."
McNamara expects to obtain her PhD in December 2007. "At first you're like,
'Oh my God, I'm probably not going to cure cancer,' " McNamara said, wryly.
You learn quickly, she said, that you will only contribute "the tiniest
piece of the puzzle."
"That's how they got to a picture of my disease," she added. "I might
publish one paper that has one key for the next person to go a further step.
That's important."

Re: [cml 2] Mendy Kerner

2007-01-18 07:30:39

Thanks for sharing that Kristin. I love the memorials they've created for Mendy
-- especially the large turtle in the garden!
Be well, friend.
Susan L

Dane's Digital Moments 6/19

2007-01-17 22:05:10

http://www.mavican.nu/phpbb/viewtopic.php?t=52359
A Photoshopped Father's Day Card from my Son (cracked me up)

Mendy Kerner

2007-01-17 19:54:10

For those of you old timers who knew, loved or admired Melinda Kerner,
and her brave battle with CML, her husband has posted again on her
Caringbridge site.
http://www2.caringbridge.org/ca/kerner/index.htm
Life goes on and we will not forget our brave CML warriors.
Love,
Kristin

Re: for Sharman

2007-01-17 07:05:25

Sharman,
I am also a patient of Dr. Talpaz's. His correct email address:
MTalpaz@...
Good luck and God Bless,
Kristin

for Sharman

2007-01-17 02:27:34

Sharman,
I got another Talpaz e-mail for you to try, but this person also says
it can be hard to get through at times?????
Mtalpaz@mdanderson
She also suggested that you contact Jerry Mayfield who has the BMS
discussion on his website.
jerry@...
I also meant to comment on one thing that you mentioned to Lisa.....
yes, the present trials are scheduled to close at all sites at the
end of the month, on June 30th.......and then we don't know how long
it will be until the next trials open. So you want to make sure with
Dr. Talpaz (who would know for sure) if there is any way you can get
into these trials.
Try to call on Monday and see if you can talk to him or get him to
call you back.
Nancy C.

address- Sharman

2007-01-16 20:22:39

Lisa...I am finally getting to answer your email. Thank you.
I waited for the BMS trial to begin in Denver. I went to see a Dr. Matous.
He seemed very considerate.
But, I sent him the email that I found on this site where BMS in effect
answered to the petition, and he said BMS would not take me on a
"compassionate" basis.
Now, if that was the doctor, or, BMS talking, I don't know.
I am trying to get in touch w/Dr. Talpaz, as I have seen him before , and ,
his research nurse is so informative.
I believe Talpaz would take me in a heartbeat to the trial there in
Houston...but, I went to Houston last fall. I have BC/BS federal. For 1 day
of consultation, labs, a BMB, and an exray, and the next day a visit w/Dr.
Talpaz my ins. was charged over $16,000.00 ! And I had a $1,000.00 co-pay! I
can't afford that! I mean, all the time in motels, and even though I can
take Angel flight, it it expensive! Plus I have to find a place for my two
kids!
I just need to see if I can get on the trial in Denver in the future, now, I
guess...aren't they closing the trial soon?
Thanks,
Sharman Denison

Dane's Digital moments 6/18

2007-01-16 15:51:11

http://www.mavican.nu/phpbb/viewtopic.php?t=52329
Nice to be back with my kids.

New Gleevec Tablet

2007-01-16 04:31:04

Hello Everyone,
Just a quick question about my husband's most recent bottle of Gleevec tablets.
We use a mail order pharmacy that gives him a 3-month supply of 400mg tablets.
The old ones were a brownish orange color and one side had "NVR" printed on it
and "SL" printed on the other side.
They were not scored. The new ones are scored and say "400" on one side and
"SL" twice on the other. He's not really concerned that the new ones are the
wrong drug, but we couldn't find a picture that matched these tablets on
Novartis's website or any other website. Just curious whether anyone else has
gotten these tablets.
Adrienne

Re: [cml 2] New Gleevec Tablet

2007-01-16 04:10:08

Hi Adrienne,
Yes, the look of the 400mg pill has changed and it is now scored. Now that
the dose is usually 400mg, 600mg or 800mg....this works better.
Before the folks taking 600mg were often having to get the 100mg pills or 2
separate Rxs for some 400's and some 100's......so now they just pop
one pill in half.
Nancy C.

John Goldman Appointment

2007-01-15 21:10:06

Today I had the opportunity to be examined by John Goldman, formerly of
Hammersmith Hospital in London, a physician very well regarded there for his
knowledge of CML, and now a Researcher at NIH in Bethesda for a year.
A friend in the UK recommended I meet with him for a second opinion and told me
how to get in touch with him. I'm very glad I did. I had lots of blood drawn
and one draw was for a qpcr or PCR-RT as some of you know it. My numbers cam e
back respectably and I'll find out about the pcr in a couple of weeks. Dr.
Goldman and a fello working with him were very thorough about my history and I
learned several things I want to pass along to you.
First, there's a new German paper (sorry, no names) that reports that people who
take a long time to reach CCR have as good a survivability rate as people who
reach it quickly.
Secondly, part of his mission here is to meet with heme/oncs around the country
and really push the necessity for PCR-RTs instead of FISH which so many doctors
depend upon. He said they're 10 years behind Europe in this.
It was Dr. Goldman who strategized an enormously complicated case of a friend of
mine (Elizabeth Rees) who is now recovering quite nicely from a BMT from her
mother's marrow. This is after having gone through a year of hell when her
counts dropped to literally zero and no one could figure out what was going on
with her. It turns out that CML was just masking MDS and AML and those were the
diseases that she needed to be fighting. Lots of chemo almost did her in but
she made it through and I give Dr. Goldman and his fellow physicians at
Hammersmith loads of credit. Of course, Elizabeth is as tough as they come,
too!
I'm seeeing Dr. Goldman again in 8 weeks and happy to be doing so. Having the
team at NIH Research is not a bad deal!
All for now.
Susan L

MDACC

2007-01-15 14:25:05

Hey everyone. I'm off to Houston for my MD Anderson visit. If anyone
is there look me up, I'll be at the Rotary House....Amy Buckner! Take
care and see you all next week!
Amy B

Re: [cml 2] MDACC

2007-01-15 13:31:54

Good luck for excellent results, Amy!
Best,
Susan L

Questions about IM/Anti-Malarial drugs and vaccines

2007-01-15 01:22:15

Hi All,
I am planning on going to Tanzania next year to fulfill my dream of
climbing Mt. Kilimanjaro. I am going to ask my dr. but wanted to
ask the list to see if anyone had some info.
Richard if your reading perhaps you can help with some info?
Cheryl, If I remember correctly you knew of other cmler planning to
go to kili.
Is there any information that shows whether taking IM and any of the
anti-malarial drugs is an issue?
Same with the Yellow Fever Vaccine?
I had the Typhoid, Menigitis and Hep-A vaccines in 2000 before I
went to Nepal. I know that the Hep-A vaccine is good for 10 years
at least but I can't find any info on the others. Any one know how
long they are effective?
Thanks, Sharon

Re: [cml 2] Questions about IM/Anti-Malarial drugs and vaccines

2007-01-14 23:12:26

I have gone to Central America three times since CML Dx and I have had all
of those vaccines with no repercussions. I do take Quinine for muscle cramps
and I know in the PDR it says you cannot take Quinine pills with Gleevec but
I do take the tonic water, which also helps for malaria.
Levaquin is in the Quinilone family, a super broad spectrum antibiotic that
I just took for 5 days for my bronchitis and I fear that it may be the culprit
but I am not sure, for my recent problems. I do know that there is something
you can bring with you for prophylaxis, ask your doctor what can be taken
with Gleevec.
My doctor said that my vaccines were good for 5 years but for the malaria I
think you have to take something with you every time? Are you sure you are
going to infested areas? I suppose, if y ou are going to the interior you
will be, on the coastal regions it is not too worrisome. HAve a wonderful trip
and I hope Richard answers your post, as I don't know the answers to your last
question. - Lynne A.

Re: [cml 2] off to dublin

2007-01-14 10:48:36

Have a good trip.
Teresa T

Hello from Dane

2007-01-14 10:44:49

Hello all...have not posted much, as I don't have much news, but have been
lurking a little.
I am around 130 days post transplant now and feeling great.
The marrow and blood samples I gave on the 18th were retested and still came up
inconclusive as to my donor cell percentage. My BCR/ABL has tumbled down to
0.08 however, which is very promising.
I have been weaning off the Prograff....now down to .5 milligrams every other
day. As of this writing no outward signs of GVHD.
Still taking 600mgs of Gleevec per day, so it is not certain if it is the
Gleevec, GVL, or both that is reducing the BCR/ABL.....either way I'm happy
about it.
Blood counts have been all normal, my trough prograff level had reached the
targeted 2.0 before this latest dose reduction. Seeing as I am cutting the
prograff does in half, I imagine I will reach a trough level of 1.0 for the
next step of the weaning process.
Really been enjoying being back at home! Have felt good enough to take the RV
out a couple of times since I've been back.
Not sure what's in store for me ahead as they reduce the prograff, but I am
enjoying life as best I can, day by day.
Regards and Prayers
Dane Tessler

Re: [cml 2] Hello to the group

2007-01-14 05:59:55

Harnony,
I have lost weight and the GI problems on Weight wathcers. Just by doing this,
I have lost almost 30 pounds, and do not spend hours in the bathrrom. If I go
off the diet, and eat a lot of sweets, then I am back to the loo.
Shelley
harmonygeorge <harmonygeorge@...
This is Harmony, diagnosed in 2000. Gleevec trial 106 at OHSU from
November 2000. Very good results, some side effects. I am getting
back to the group after a long absence. Zavie 'made' me do it!
Anyway, I'm looking forward to hearing how some old friends are doing.
I am particularly interested in hearing how others have successfully
lost those extra pounds and what you have done to manage the GI
problems.

RE: address- Sharman

2007-01-13 21:42:00

Sharman,
I am sorry you have to go through so much for so long you really have been a
warrior and I think sometimes we forget that it's ok to get sick and tired
sometimes.
If I remember correctly we did just recently sign the petition to get
Bristol Myers Squib to address the criteria of allowing people who need to
be in BMS trial in the trial as well as expanding it.
I would hope that qualifies you. If not I suggest that you let us know. That
would be our follow up opportunity!
I could not locate Talpaz's e-mail address on line but I did find the
criteria's for the BMS trial listed under find a trial by Doctor and then
looked under Talpaz's name where there are links to the BMS trial
criteria's.
Let us know how things go.
Lisa M
Message: 14
Date: Thu, 16 Jun 2005 08:33:10 -0600
From: "Sharman Denison" <nofences@...
Subject: address
Hi...I have been a patient of M. Talpaz in the past and have just recently
tried to email him at the address I have. The mail was sent back to me! Does
anyone have his current address? I would appreciate it. I am one of those
folks who," fell through the cracks", of the BMS trial. I waited, and waited
for the trial to come to Denver so it would be closer, and lo and behold
after a BMB shoed I have 12,000 blast cells and not 15,000 blast cells, I
did not meet the criteria. I am trying to email M. Talpaz to see what he or
his research nurse suggest. I am so frustrated...and tired of being sick and
tired! My WBC is 70,000, my Hemoglobin is at 9.4 and I feel horrible each
day , mostly from the Gleevec. Talpaz understood how much I hated to
Gleevec, but, my other doctors say I should up my dose? What, and become
comatose? This CML was discovered in my back in '93...I am truly a miracle!
That's what they say! Having lived through 3 "blast" crisis. But, I will
tell you this, "miracle" is getting tired. Tired of the system, and of
conventional medicine.
Sorry...I rarely write and I didn't want to just complain! I guess I am
pretty lucky.
Well, does anyone have M. Talpaz email address?
Thanks,
Sharman Denison

Re: [cml 2] address

2007-01-13 13:22:59

Hi Sharman,
Here is one to try for Talpaz:
motalpaz@...
I hope he has some ideas for you. I have another friend who is falling
through the cracks in this present trial.....and she has been told by a
trial center in Pittsburgh that an expanded access trial should start in
late July or early August.
Sharman, go out and beat the fence or something for your frustration....
then come back as the CML warrior that you are.
The BMS Petition was written for folks like you....lots of people care.
Nancy C.

address

2007-01-13 11:54:37

Hi...I have been a patient of M. Talpaz in the past and have just recently tried
to email him at the address I have. The mail was sent back to me! Does anyone
have his current address? I would appreciate it.
I am one of those folks who," fell through the cracks", of the BMS trial.
I waited, and waited for the trial to come to Denver so it would be closer, and
lo and behold after a BMB shoed I have 12,000 blast cells and not 15,000 blast
cells, I did not meet the criteria.
I am trying to email M. Talpaz to see what he or his research nurse suggest.
I am so frustrated...and tired of being sick and tired! My WBC is 70,000, my
Hemoglobin is at 9.4 and I feel horrible each day , mostly from the Gleevec.
Talpaz understood how much I hated to Gleevec, but, my other doctors say I
should up my dose? What, and become comatose?
This CML was discovered in my back in '93...I am truly a miracle! That's what
they say! Having lived through 3 "blast" crisis. But, I will tell you this,
"miracle" is getting tired. Tired of the system, and of conventional medicine.
Sorry...I rarely write and I didn't want to just complain! I guess I am pretty
lucky.
Well, does anyone have M. Talpaz email address?
Thanks,
Sharman Denison

off to dublin

2007-01-12 22:45:35

i will be off the lists for few days. i am leaving now to dublin to the yearly
cml and gist patients summit. i look forward to spend a beatifull weekend with
many friends including sandy crain, jan, zavie and his wife ida, cheril and
susan from canada, norman from the life raft group and many others. there will
be many new participants especially from the eastern countries of europe
including hungary, polans, estonia, check, slovania and more.
i will miss this year elizabeth who is recovering from her bmt. i wish her great
health soon.
shalom
giora

Hello to the group

2007-01-12 18:31:25

This is Harmony, diagnosed in 2000. Gleevec trial 106 at OHSU from
November 2000. Very good results, some side effects. I am getting
back to the group after a long absence. Zavie 'made' me do it!
Anyway, I'm looking forward to hearing how some old friends are doing.
I am particularly interested in hearing how others have successfully
lost those extra pounds and what you have done to manage the GI
problems.

My MDAnderson Visit and my visit with Gregg Belnap - List member

2007-01-12 10:09:37

Hi all. After a very long day I returned from MDAnderson last
evening around 1 AM. All is all it was a good visit. And I got to
see Gregg Belnap! As many of you may know, Gregg is currently
undergoing a transplant at MDA. He was dx with both CML and AML and
headed to transplant sometime in April. He is currently in an
outpatient Ambulatory Transfusion Center - getting his IV supplements
daily and that is where we visited. I told him that everyone is
continuing to pray for him and we all keep in him our thoughts.
Gregg is doing quite well! He looks great and had just gotten some
dinner when I saw him so he's eating again! He had a recent BMB but
no results as of yet. Hopefully he'll be getting GREAT results. He
is a real trooper. And he so much appreciates the prayers and
thoughts!
As for my visit, it was good. My bmb was a little bit difficult. I
must have gotten someone in training . . . Yikes. She couldn't get
the needle into the bone after a LONG time. I started to get
nauseous and thought I was going to faint. It was probably just
anxiety. When the girl couldn't get into the bone, another lady came
in to the room and finished the biopsy. I am sore to say the least
but all in all they did a good job.
For those of you who go to MDAnderson and have the priviledge of
having Jensie do your bmbs, you are in for a surprise. I went with
full expectations that she'd be doing my bmb and I was looking
forward to seeing her. However, she retired in April! You can
imagine my disappointment (Although it's great she was able to retire
and enjoy life). For those of you who do know Jensie, she has magic
hands and MDAnderson won't be the same without her special touch and
spirit.
Dr. Giles and I had a good discussion. I broached the subject of
adding some PEG interferon to my mix but he nixed that immediately.
We did talk a little about the AMN trial and should I need that, I
could move over to that if I find myself needing to. As I said to
him, my current logic is 'If it ain't broke, don't fix it'. So
hopefully I will remain on a stable path.
I also spoke to Dr. DeLima - the transplant specialist - as well as
my leukemia specialist about doing a 'Harvest and Hold' (Sounds
like 'cheeseburga - cheeseburga') After much thought and
intrepidation - and after LOTS of questions about the use of GCSF - I
will likely be doing the harvest in early to mid July. I'll continue
to keep you all posted on the direction I head. Their thoughts were
that this couldn't hurt and is only an additional insurance policy
to 'turn the clock back' if I ever needed it. My biggest concern
is the GCSF and it's potential of bringing the quiescent cells out of
their 'slumber'. Dr. DeLima said that to date he has not had any
problems with this but of course said there is a first time for
everything but the risk is relatively minimal. All in all, this is
my difficult decision to make and I'd love to hear from my CML Family
regarding your thoughts on this.
Again, it was a good but quick visit. I am exhausted from doing it
in two days. I guess I just don't have the energy I once have!
Visiting Gregg was truly an honor and I know he so much appreciates
all the prayers and good wishes.
Hope this finds you all doing well. You all remain in my thoughts!
Sending hugs and love,
Barbara Heathcote

Re: [cml 2] The Finished Product

2007-01-12 07:46:14

Gale,
Looks fantastic! Run well and strong.
Adrienne
Gale <divergal@...
Hi all,
Just a quick note to let you know I've posted a picture of
the 'finished' Alaska jacket. Enjoy and when I get back there will be
lots of pictures!
(I'll have to find the tune to go with the Alaska song lyrics...)
Thank you everyone for your names, kind words of encouragement and
inspiration!
Signing off for a week,
Gale Bacon

Song Trivia (off topic)

2007-01-11 23:51:23

In case some of you are wondering just how old us ol' timers are that
remember this song.....here's a clue. And, how can you go wrong when
it was a song for 'the Duke'?
The Singing Fisherman
He was born John Gale Horton in Los Angeles, California, on April 3,
1925. He was raised as a member of a sharecropping family who had
moved to Tyler Texas in search of work. His mother taught him how to
play the guitar, and he also demonstrated his athletic ability by
winning basketball scholarships to Baylor University and then to the
University of Seattle. Before he completed his degree, however, his
interest in fishing led him to Alaska, where he worked in that
industry.
Johnny Horton began his singing career in 1950 on KXLA in Pasadena.
Soon he appeared on KLAC, performing on Cliffie Stone's Hometown
Jamboree. Because of his talent for fishing he became known as "The
Singing Fisherman." He made his first recordings for Cormac in 1951
and then for Fabor Robison's Abbott Records. Later, he went to Dot
and then to Mercury, with little success.
In 1953, Johnny married Hank William's widow, Billy Jean. Through her
efforts, both with money and encouragement, he was able to better
himself. As a result of his growing reputation, he became one of the
leading artists on the Louisiana Hayride in 1955. He took on Tillman
Franks as his manager in 1956, and his first hit came on Columbia
with the song "Honky Tonk Man" (a major hit for Dwight Yoakam in
1986). This was quickly followed with the song "I'm a One Woman Man"
(recorded by George Jones in 1989). At this time, Johnny made many
appearances throughout the United States, including the Grand Ole
Opry. He also had his own radio show in Tyler, Texas, on KLIV. More
hit songs followed in 1957, such as I'm Coming Home, The Woman I
Need, and All Grown Up. Despite his success, Johnny was still looking
for a signature sound, and also his first Number One Hit.
He achieved both in 1959, with the release of the song "When It's
Springtime in Alaska (It's Forty Below)." Saga songs such as this
became his forte, and when he next released Jimmy Driftwood's "The
Battle of New Orleans," he became a household name in Country Music.
This song was a big hit both on the country and pop charts, and
became the biggest song of 1959. It even became a moderate hit in the
UK, where it was banned on the BBC for its mentioning "the bloody
British." This song was followed by a string of hits,
including "Johnny Reb" and "Sink the Bismark." The title song to the
John Wayne movie, North to Alaska, would prove to be Johnny's last
hit while he was alive.
The Skyline Club in Austin was the last place he, like Hank Williams,
performed at. Amidst an atmosphere supposedly filled with
premonitions of his death, after this show he left by car with
Tillman Franks and Tommy Tomlinson, his bass player. Tragically,
early on the morning of November 5, 1960, Johnny Horton was killed
when a drunk driver hit his car head on near Milano, Texas. The other
passengers suffered serious injuries and eventually recovered. The
driver of the other vehicle, James Davis (age 19) also died. Johnny
was buried in Hillcrest Cemetery in Bossier City, Lousiana.
During the years after his death, Johnny Horton remained quite
popular. Hits continued to be released posthumously during the
early 1960's, such as "Sleepy Eyed John" and the re