CML

I'm a member of this group but I don't receive any email!!

Hello Barbara,
It is really nice to have you here. Welcome aboard.
Cheers,
Cheryl

Hi, all. Tommy had his central line placed today. That was uneventful.
Fairview Hospital is in a beautiful setting in Minneapolis. The staff
is very helpful. Chemo (Cytoxan) starts tomorrow and goes for two days.
One day off and then four days of radiation (twice a day). His
transplant will take place on May 4th. Hoping for the best.
Barb Neddo,
Mom to Tom, 16, dx CML 8/04,
BMT 5/04/05
http://www.caringbridge.org/wi/tomneddo

Just want to let you know I had an MRI, waiting for the results.
I had a vascular doppler to ck circulation and it is ok.Skin color is
ok. I know I have arthritis in my joints, but this isn't just in my
joints.It seems to be in the muscles and bone. Dr. ckd me for
fybromyialga (if there is such a thing) and he does'nt seem to think
it's that so they set me up for the MRI. I will let you know the
results when I get them back should be Friday.
Zavie, you ask me about my last bmb.I had one last Aug. I'm
getting one done on Monday. My Blood count went up again. The Dr.
thinks I might becoming immune to the Gleevec. He upped it to 800mg.
All the testing should tell me something.
Thank all of you for your responses. As usual your still like
family. When I get the results back I'll keep you informed.
Eagledove(Kay)
dx 6-98
wbc 15 Gleevec 800mg

Thanks very much for the kinds words. Feeling and dealing better
with the shocky news. The re-introduction of Gleevec or possibly
BMS options are in the wings.
Now just waiting to see what the effect of the reduction of anti-
GVHD meds causes. That's the name of the game it seems.
By the way...going through the panhandle and drawing an opion about
Texas is like spending the day in Newark and drawing an opinion
about New England.

Hi Barb,
Glad you are here....this is the happening CML place!
You will find lots of old friends here, including Richard R.
On this list, there are no censors, no scolding, no banning.
We are just all here to get healthy together.
Maui Nanc

Hi all. Just wanted to drop a note and let you all know I joined the
CML2 list.
I hope this finds everyone doing well!
Sending my best to all.
Love,
Barbara Heathcote
Raleigh, NC

yes, I do have back pain from time to time, but the pain always goes
off after a few days

sensitive especially in your back while lying on bed?? maybe because cml or
gleevec??

Kay,
I was DX almost a year ago (11 May) and I still have severe leg pain. I
think I am the exception to the rule. When first put on Gleevec the pain was so
severe I would sit in the floor and fight the pain waiting on the 4 hours to be
up so I could take more pain meds. Eventually the constant pain stopped and
now the pain depends on the amount and type of physical activity I perform. I
know your pain all to well. I take percocet when regular OTC meds dont work
and I eat 500mg of magnisium a day. I suggest you talk to your ONC and work
on possible solutions. Many times it's just hit and miss, trial and error
until you find what works for you. Sorry for your hurt and hope you find
something soon to help!
Smile,
Michael Herring

do some of you experience sensitive back? I mean, feeling your bones very
sensitive especially in your back while lying on bed?? maybe because cml or
gleevec??

Hi Cheryl,
Thanks for bringing this to our attention. I share your excitement about
this trial, along with your reasons for it. Since we'll never be able to
measure zero CML, an endpoint of stopping all drugs is the one we must
ultimately get to. Who better than to try it first than Dr. D, and what
better drug combo: there's by far the most experience with IM and IFN, plus
we know that they work in entirely different ways - which is always a plus
when you're dealing with combinations.
My one reservation, which may be outmoded, is that so many patients on both
drugs at once seemed to bottom out with their blood counts. I know you can
support the marrow with white and red cell growth factors (not so with
platelets, because platelet growth factor is considered too toxic); however,
it concerns me a little that the combination DOES seem so marrow
suppressive. It would be OK if this is just because the body's own growth
factors are being switched off, but do we know that the combo is not
outright toxic to the marrow? And if it is, are we pretty sure the toxicity
isn't lasting in some way? The answers to this may be known, but I sure
don't know them!
As to whether I'd enter this trial, I might, but not that enthusiastically.
IFN didn't make me as sick as it did some folks, but the cumulative side
effects wore me down in the end and I'd hate to evoke them once again. I'm
not a candidate anyway though because a) I'm way farther out than 6 months
from dx, and b) I'm already PCRU!
Cheers,
Richard

Day 76 brings my first setback since the BMT process began.
I received the results of my second biopsy today. It showed that I am now 100%
donor cells (good) but my BCR-ABL level is up to 13.5 (not good).
In comparison, my first biopsy came back 99% donor cells and a BCR-ABL level of
1.0.
Dr. DeLima explained to me that the anti-GVHD drug tacrolimus also reduces the
donor cells' ability to fight the leukemia, so now my tacrolimus dose will be
decreased.
The plan is to induce a small amount of GVHD in order to achieve Graft Vs
Leukemia. Graft Vs Leukemia can start to bring the BCR-ABL level back down.
Dr. DeLima has also mentioned the possibility of bringing Gleevec back into the
mix, but I have my doubts about this because I have already shown a resistance
to the drug. I talked with him as well as with my research onc about replacing
the use of Gleevec with one of the newer BMS or AMN107 drugs to knock out the
BCR-ABL and give my new immune system a helping hand.
He thought enough of the idea to email my research onc to get his opinion. I
sent my research onc a similar email and expect to hear back from him soon.
In the meantime, any chance of going home early is now gone, as my test results
were not optimum. I will be here for at least another month, possibly longer.
The good news is that as of this writing, I should still be allowed to go home
on weekends.
As of this writing, I am still only in clinic two days a week, and I am still
off home infusions unless my magnesium levels drop lower than they are.
So I wait....three more weeks until another biopsy, one more week to get those
results.
Tick....tock.....tick....tock, etc.
Not the best day I've had since this thing began.
Dane

Hello Kay,
I haven't read all the replies you've received yet, so I may be
asking all the same questions.
How would you describe the pain in your legs. Does it feel like
bone pain or is it a general ache in the legs? How is the skin
color of your legs? Have you noticed any circulation problems?
Have you been active, i.e. walking. Staying in one position for
long periods can cause a lot of problems. Like everything in life
too much of anything isn't good. If you have been sitting for too
long it is just as bad as standing in one place for too long.
Have you spoken to your doctor about this pain? If it isn't a bone
pain or a cramp pain than I would suggest perhaps an ultrasound of
the lower limbs to rule out any circulatory problems.
And now for the disclaimer: I am not a doctor, do not even play one
on TV. This is just a suggestion of things to think about and speak
to your treating physician about.
Hope it helps,
Cheers,
Cheryl-Anne

Hi Richard I am glad to hear about your good news.
You may remember that I too went through the same situation but mine was
caused by using a different lab. After getting a positive from Labcorp which
(I had never used before) I also had my annual BMBA scheduled a few weeks
after. By then I had stopped worrying myself for the same reasons as you.
Even though I know technically and medically it's not a good enough reason,
I just had that feeling that something was wrong with the results Labcorp
provided. (Or could it be that psychologically I am determined to be well?)
Well my QPCR they did at the time of my BMBA was Negative!
Although I had believed it was going to be negative, I know what you mean
when you said it was a relief...
Shorlty after receiving the results I also had an appointment with Moffitt
Cancer Center located here in Tampa, I gave the head doctor there all the
results I had from my primary Onc, and he suggested that I not use Labcorp
any more. He also said that Moffitt stopped using Labcorp almost a year and
a half ago because of the same reasons.
Thanks for sharing & listening Richard!
Lisa
Dx 5-24-2000
Hyd/arc/interferon
Gleevec 400 mgs 6-2001
8-2001 PCRU & HOLDING
I got a little piece of good news myself. My November and February qPCR's
seemed to be showing an increase in BCR-ABL, after a year of negativity.
However, I didn't really believe these results, partly because MSK's lab has
only been doing qPCR's for a relatively short time, and also because, I
don't know, I just felt so well (I know this is not a rational reason for
optimism, but there you are). Anyway, I leaned on them a bit and they ran
the test really carefully this time, and it came back negative once again. I
quit worrying about all this a month or so ago, but still it's a relief.
Warm wishes,
Richard R
---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.859 / Virus Database: 585 - Release Date: 2/14/2005

Hi Kay,
I have to wonder if this is bone pain. If so, then all I personally know about
are drugs such as oxycodone. In my opinion, you should talk to your onc and see
what he recommends for pain. I hope someone else has other ideas. I've had
bone pain (which was fleeting, thank goodness) and it's excruciating. I could
barely walk and couldn't drive. This was at the beginning of Gleevec (IM)
treatment when lots of leukemia cells were getting killed off and moving out of
the system.
Let us know what you find out about the cause and treatment. So sorry you're in
pain.
Warmly,
Susan L

I have been experiencing severe pain in my legs. I am on 600mg of
gleevec daily. These are not the leg cramps, had those too. Sometimes
it's so bad I can't hardly walk. Has anyone else experienced this?
I was on this support group aout 1 1/2 yr. ago and got off the
web. So Glad to see you are all still here.
DX 6-98
interferon
hydrea
now 600mg Gleevec
wbc 6 and holding. Due for bmb end of May
Thanks Nancy, I got here ok!
Eagledove 605 (Kay Peace)

HI Cheryl,
This is awsome news!!! Does this actually mean what i think it may mean???? A
possible cure around the horizon!!! Even if it isn't it is very promising and
they are sure to find a cure soon!!! I agree if it is Dr. Drucker then it looks
even better!!!
Hoping all is well with you!!
Take care.
Love Penny
Cheryl-Anne Simoneau <cheryl.simoneau@...
Hello All,
I noticed the clinical trial information posted below on the Asian List and
I would like to have some discussion about it.
The trial is being conducted by Dr. B. Druker and it involves combining IFN
and IM. The interesting part is that depending on the response, IFN is
dropped after the first year and if a molecular remission is achieved and
held (PCRU) for two years based on bone marrow testing, IM is also dropped.
Obviously this is quite appealing to me, as I tolerated IFN so well. The
thought of a clinical trial being designed to reach an "end point" of no
further medications is incredibly exciting; particularly so because Dr. D.
is the PI.
So, below is the information on the trial. My questions are:
If you could enroll in this trial, would you?
Is there anyone among us who is on this trial?
What are any drawbacks that someone should think about with regards to this
trial?
Any general comments and your kind insight would be most helpful to me.
Warm wishes to everyone,
Cheryl-Anne
Imatinib Mesylate and Interferon Alfa in Treating Patients With
Chronic Myelogenous Leukemia
This study is currently recruiting patients.
Sponsors and Collaborators: Oregon Health and Science University
National Cancer Institute (NCI)
Information provided by: National Cancer Institute (NCI)
Purpose
RATIONALE: Imatinib mesylate and interferon alfa may interfere with
the growth of the cancer cells. Combining imatinib mesylate with
interferon alfa may kill more cancer cells.
PURPOSE: Phase II trial to study the effectiveness of combining
imatinib mesylate with interferon alfa in treating patients who have
chronic myelogenous leukemia.
Condition Treatment or Intervention Phase
relapsing chronic myelogenous leukemia
chronic phase chronic myelogenous leukemia
Philadelphia chromosome positive chronic myelogenous leukemia
Drug: imatinib mesylate
Drug: interferon alfa
Procedure: biological response modifier therapy
Procedure: cytokine therapy
Procedure: enzyme inhibitor therapy
Procedure: interferon therapy
Procedure: protein tyrosine kinase inhibitor therapy
Phase II
MedlinePlus related topics: Leukemia, Adult Acute; Leukemia, Adult
Chronic; Leukemia, Childhood
Study Type: Interventional
Study Design: Treatment
Official Title: Phase II Study of Imatinib Mesylate and Interferon
alfa in Patients With Chronic Phase Chronic Myelogenous Leukemia
Further Study Details:
OBJECTIVES:
Determine the maximum tolerated dose of interferon alfa administered
with imatinib mesylate in patients with chronic phase chronic
myelogenous leukemia. (Phase I closed to accrual as of 7/9/03.)
Determine the safety and tolerability of this regimen in this patient
population.
Determine the complete, major, and minor cytogenetic response rates
and complete hematologic response rate in patients after 6 and 12
months of treatment with this regimen.
Determine the molecular response (reverse transcriptase-polymerase
chain reaction for bcr-abl) rate in patients who have a complete
cytogenetic response after 6 and 12 months of treatment with this
regimen.
Determine the pharmacokinetics of this regimen in these patients.
OUTLINE: This is a dose-escalation, multicenter study.
Patients receive oral imatinib mesylate once daily beginning on day 1
and interferon alfa (IFN-A) subcutaneously once daily or 3 times
weekly beginning on day 14. Courses repeat every 35 days for up to 1
year in the absence of disease progression or unacceptable toxicity.
After completion of 1 year of therapy, patients may receive
additional therapy, provided that the patient is benefiting from
imatinib mesylate. IFN-A is discontinued in patients who achieve a
molecular remission that is confirmed on 2 successive bone marrow
samples. Imatinib mesylate is discontinued in patients who achieve
and maintain a molecular remission for 2 years. Sequential dose
escalation of IFN-A is followed by sequential dose escalation of
imatinib mesylate. Cohorts of 3-6 patients receive escalating doses
of IFN-A and then imatinib mesylate until the maximum tolerated dose
(MTD) of the combination is determined. The MTD is defined as the
dose preceding that at which 2 of 6 patients experience dose-limiting
toxicity.
Phase II: Patients receive imatinib mesylate and IFN-A as in phase I
at the established MTD. Patients are followed for 30 days.
PROJECTED ACCRUAL: Approximately 3-15 patients will be accrued for
the phase I portion of this study. (Phase I closed to accrual as of
7/9/03.) A total of 40 patients will be accrued for the phase II
portion of the study within 3-4 months.
Eligibility
Ages Eligible for Study: 18 Years and above, Genders Eligible for
Study: Both
Criteria
DISEASE CHARACTERISTICS:
Cytogenetically confirmed chronic myelogenous leukemia (CML)
Less than 15% blasts in peripheral blood or bone marrow
Less than 30% blasts and promyelocytes in peripheral blood or bone
marrow
Less than 20% basophils in blood or bone marrow
Platelet count at least 100,000/mm^3
No leukemia beyond bone marrow, blood, liver, or spleen
No chloroma
Philadelphia (Ph) chromosome-positive CML in chronic phase
Newly diagnosed Ph chromosome-positive CML in chronic phase
Initial diagnosis within 6 months of study
No prior therapy for CML except hydroxyurea and/or anagrelide
hydrochloride
No identified sibling donors where allogeneic stem cell
transplantation is elected as first-line therapy
PATIENT CHARACTERISTICS: Age:
18 and over
Performance status:
ECOG 0-2
Life expectancy:
Not specified
Hematopoietic:
See Disease Characteristics
Hepatic:
Bilirubin no greater than 1.5 times upper limit of normal (ULN)
AST or ALT no greater than 2 times ULN
Renal:
Creatinine no greater than 1.5 times ULN
Cardiovascular:
No New York Heart Association class III or IV heart disease
Other:
Not pregnant or nursing
Negative pregnancy test
Fertile patients must use 2 methods of effective barrier
contraception during and for at least 3 months after study
participation
No other serious uncontrolled medical condition
No autoimmune disease
No prior noncompliance to medical regimens or potential unreliability
No prior grade 3 or greater non-hematologic toxicity due to prior
interferon (phase I [closed to accrual as of 7/9/03])
PRIOR CONCURRENT THERAPY: Biologic therapy:
See Disease Characteristics
No prior bone marrow or peripheral blood stem cell transplantation
At least 2 weeks since prior interferon alfa (phase I [closed to
accrual as of 7/9/03])
Chemotherapy:
See Disease Characteristics
At least 6 weeks since prior busulfan (phase I [closed to accrual as
of 7/9/03] )
At least 2 weeks since prior cytarabine (phase I [closed to accrual
as of 7/9/03])
No concurrent chemotherapy
Concurrent hydroxyurea allowed during the first 3 months of study
Endocrine therapy:
Not specified
Radiotherapy:
Not specified
Surgery:
Not specified
Other:
At least 4 weeks since prior investigational agents other than
imatinib mesylate (phase I [closed to accrual as of 7/9/03])
No concurrent grapefruit juice
Concurrent anagrelide hydrochloride allowed during the first 3 months
of study
Location and Contact Information
Please refer to this study by ClinicalTrials.gov identifier
NCT00015847
Illinois
Robert H. Lurie Comprehensive Cancer Center at Northwestern
University, Chicago, Illinois, 60611, United States; Recruiting
Martin Stuart Tallman, MD 312-695-4540
Oregon
Cancer Institute at Oregon Health and Science University,
Portland, Oregon, 97239, United States; Recruiting
Brian Jay Druker, MD 503-494-5596
Study chairs or principal investigators
Brian Jay Druker, MD, Study Chair, Oregon Health and Science
University
More Information
Clinical trial summary from the National Cancer Institute's PDQR
database
Study ID Numbers: CDR0000068443; OHSU-6263; NCI-2794; NCT00015847
Record last reviewed: March 2005
Last Updated: March 10, 2005

Hello All,
I noticed the clinical trial information posted below on the Asian List and
I would like to have some discussion about it.
The trial is being conducted by Dr. B. Druker and it involves combining IFN
and IM. The interesting part is that depending on the response, IFN is
dropped after the first year and if a molecular remission is achieved and
held (PCRU) for two years based on bone marrow testing, IM is also dropped.
Obviously this is quite appealing to me, as I tolerated IFN so well. The
thought of a clinical trial being designed to reach an "end point" of no
further medications is incredibly exciting; particularly so because Dr. D.
is the PI.
So, below is the information on the trial. My questions are:
If you could enroll in this trial, would you?
Is there anyone among us who is on this trial?
What are any drawbacks that someone should think about with regards to this
trial?
Any general comments and your kind insight would be most helpful to me.
Warm wishes to everyone,
Cheryl-Anne
Imatinib Mesylate and Interferon Alfa in Treating Patients With
Chronic Myelogenous Leukemia
This study is currently recruiting patients.
Sponsors and Collaborators: Oregon Health and Science University
National Cancer Institute (NCI)
Information provided by: National Cancer Institute (NCI)
Purpose
RATIONALE: Imatinib mesylate and interferon alfa may interfere with
the growth of the cancer cells. Combining imatinib mesylate with
interferon alfa may kill more cancer cells.
PURPOSE: Phase II trial to study the effectiveness of combining
imatinib mesylate with interferon alfa in treating patients who have
chronic myelogenous leukemia.
Condition Treatment or Intervention Phase
relapsing chronic myelogenous leukemia
chronic phase chronic myelogenous leukemia
Philadelphia chromosome positive chronic myelogenous leukemia
Drug: imatinib mesylate
Drug: interferon alfa
Procedure: biological response modifier therapy
Procedure: cytokine therapy
Procedure: enzyme inhibitor therapy
Procedure: interferon therapy
Procedure: protein tyrosine kinase inhibitor therapy
Phase II
MedlinePlus related topics: Leukemia, Adult Acute; Leukemia, Adult
Chronic; Leukemia, Childhood
Study Type: Interventional
Study Design: Treatment
Official Title: Phase II Study of Imatinib Mesylate and Interferon
alfa in Patients With Chronic Phase Chronic Myelogenous Leukemia
Further Study Details:
OBJECTIVES:
Determine the maximum tolerated dose of interferon alfa administered
with imatinib mesylate in patients with chronic phase chronic
myelogenous leukemia. (Phase I closed to accrual as of 7/9/03.)
Determine the safety and tolerability of this regimen in this patient
population.
Determine the complete, major, and minor cytogenetic response rates
and complete hematologic response rate in patients after 6 and 12
months of treatment with this regimen.
Determine the molecular response (reverse transcriptase-polymerase
chain reaction for bcr-abl) rate in patients who have a complete
cytogenetic response after 6 and 12 months of treatment with this
regimen.
Determine the pharmacokinetics of this regimen in these patients.
OUTLINE: This is a dose-escalation, multicenter study.
Patients receive oral imatinib mesylate once daily beginning on day 1
and interferon alfa (IFN-A) subcutaneously once daily or 3 times
weekly beginning on day 14. Courses repeat every 35 days for up to 1
year in the absence of disease progression or unacceptable toxicity.
After completion of 1 year of therapy, patients may receive
additional therapy, provided that the patient is benefiting from
imatinib mesylate. IFN-A is discontinued in patients who achieve a
molecular remission that is confirmed on 2 successive bone marrow
samples. Imatinib mesylate is discontinued in patients who achieve
and maintain a molecular remission for 2 years. Sequential dose
escalation of IFN-A is followed by sequential dose escalation of
imatinib mesylate. Cohorts of 3-6 patients receive escalating doses
of IFN-A and then imatinib mesylate until the maximum tolerated dose
(MTD) of the combination is determined. The MTD is defined as the
dose preceding that at which 2 of 6 patients experience dose-limiting
toxicity.
Phase II: Patients receive imatinib mesylate and IFN-A as in phase I
at the established MTD. Patients are followed for 30 days.
PROJECTED ACCRUAL: Approximately 3-15 patients will be accrued for
the phase I portion of this study. (Phase I closed to accrual as of
7/9/03.) A total of 40 patients will be accrued for the phase II
portion of the study within 3-4 months.
Eligibility
Ages Eligible for Study: 18 Years and above, Genders Eligible for
Study: Both
Criteria
DISEASE CHARACTERISTICS:
Cytogenetically confirmed chronic myelogenous leukemia (CML)
Less than 15% blasts in peripheral blood or bone marrow
Less than 30% blasts and promyelocytes in peripheral blood or bone
marrow
Less than 20% basophils in blood or bone marrow
Platelet count at least 100,000/mm^3
No leukemia beyond bone marrow, blood, liver, or spleen
No chloroma
Philadelphia (Ph) chromosome-positive CML in chronic phase
Newly diagnosed Ph chromosome-positive CML in chronic phase
Initial diagnosis within 6 months of study
No prior therapy for CML except hydroxyurea and/or anagrelide
hydrochloride
No identified sibling donors where allogeneic stem cell
transplantation is elected as first-line therapy
PATIENT CHARACTERISTICS: Age:
18 and over
Performance status:
ECOG 0-2
Life expectancy:
Not specified
Hematopoietic:
See Disease Characteristics
Hepatic:
Bilirubin no greater than 1.5 times upper limit of normal (ULN)
AST or ALT no greater than 2 times ULN
Renal:
Creatinine no greater than 1.5 times ULN
Cardiovascular:
No New York Heart Association class III or IV heart disease
Other:
Not pregnant or nursing
Negative pregnancy test
Fertile patients must use 2 methods of effective barrier
contraception during and for at least 3 months after study
participation
No other serious uncontrolled medical condition
No autoimmune disease
No prior noncompliance to medical regimens or potential unreliability
No prior grade 3 or greater non-hematologic toxicity due to prior
interferon (phase I [closed to accrual as of 7/9/03])
PRIOR CONCURRENT THERAPY: Biologic therapy:
See Disease Characteristics
No prior bone marrow or peripheral blood stem cell transplantation
At least 2 weeks since prior interferon alfa (phase I [closed to
accrual as of 7/9/03])
Chemotherapy:
See Disease Characteristics
At least 6 weeks since prior busulfan (phase I [closed to accrual as
of 7/9/03] )
At least 2 weeks since prior cytarabine (phase I [closed to accrual
as of 7/9/03])
No concurrent chemotherapy
Concurrent hydroxyurea allowed during the first 3 months of study
Endocrine therapy:
Not specified
Radiotherapy:
Not specified
Surgery:
Not specified
Other:
At least 4 weeks since prior investigational agents other than
imatinib mesylate (phase I [closed to accrual as of 7/9/03])
No concurrent grapefruit juice
Concurrent anagrelide hydrochloride allowed during the first 3 months
of study
Location and Contact Information
Please refer to this study by ClinicalTrials.gov identifier
NCT00015847
Illinois
Robert H. Lurie Comprehensive Cancer Center at Northwestern
University, Chicago, Illinois, 60611, United States; Recruiting
Martin Stuart Tallman, MD 312-695-4540
Oregon
Cancer Institute at Oregon Health and Science University,
Portland, Oregon, 97239, United States; Recruiting
Brian Jay Druker, MD 503-494-5596
Study chairs or principal investigators
Brian Jay Druker, MD, Study Chair, Oregon Health and Science
University
More Information
Clinical trial summary from the National Cancer Institute's PDQR
database
Study ID Numbers: CDR0000068443; OHSU-6263; NCI-2794; NCT00015847
Record last reviewed: March 2005
Last Updated: March 10, 2005

http://www.fototime.com/EA65A0188F6C577/orig.jpg
Where Oreos come from.

Richard: It was such great news to hear that all your worry about the past
test turned out to be for nothing! Once again nothing is the best
news--zero all the way!
Margot

It's actually a pretty old antibiotic (one generation removed from
tetracycline), and not quite as effective as Larium, but nearly so.
Yours,
Richard R

Thanks to every one of you who responded to my post. I am still a
little unnerved by all of this, but I have confidence in Dr. Talpaz at
MDACC and Dr. Forman at COH. I am sure that they will have a
recommendation for me after the holidays.
And I have confidence in you all as a support group, too! I appreciate
your warm concern more than I can say.
Love,
Kristin

Dear Kristin,
I'd think an increase in IM would be a good idea given these numbers - plus
testing for mutation (Charles Sawyers lab at UCLA does this; I don't know
who else does) perhaps. I'm really sorry to hear of the increase - though
with all the new drugs coming along, it's a far less ominous finding than it
would have been even a year ago.
Love to you,
Richard R

Hi Kristin,
Certainly a consideration to go to 600mg. I'm seeing Dr. Saheebi at
City of Hope on Friday after being on 600mg for the last month for
the
same reason. I'm not real nuts about the extra dosage and if I can
get on a lowering trend I'd like to go back to 400. Keep a close eye
on things and keep us posted.
Take care,
Lisa Perry
dx 5/03

Hello Kristin,
Sorry about your increase, but I have heard through the grapevine
that MDACC like other places have had the odd troubles with their
PCR testing. So, I would be inclined to be re-tested and speak to
your doctor there. However, that being said since this is a trend
that started in 2003 I tend to agree with Giora and honestly, if it
were me I would probably consider an increase to 600 mg.
Enjoy your passover holidays,
Warmly,
Cheryl-Anne

Dane,
I never think that it is possible, and then you post
an even better picture than you did the last time. You
have such an awesome eye for a picture!!
We are going to be in Houston for my appt on Wed. May
4th. Maybe we can meet up at some point. My husband
and I will be in town Tuesday evening and leave early
Thursday morning.
I have been following your progress with your
transplant and think that you are doing a wonderful
job. I am so proud of you!!
Talk soon,
Trisha--age 41
Parsons, KS
dx 9/99

http://www.fototime.com/00FB22F64F3B605/orig.jpg
Longhorn in the Wildflowers

Hello Jennifer,
I would LOVE to meet you in Anchorage. We're staying at the Ramada Inn
at 115 East 3rd Avenue. The number there is (907)272.7561. We're
checking in on the evening of Wednesday 6/15, late, around 9:30pm AK
time. We'll also be at the Victory party Saturday night!
Let me know if you'd like to meet up!
I know what you mean about a 'life changing experience'! My husband
and I did the White Rock Marathon (1/2) in Dallas and now we're hooked!
Take Care,
Gale Bacon

Hi Kristin,
I would certainly ask your onc about an increase....not sure who is your
primary now....maybe Talpaz. Sometimes he seems a bit conservative to me in
some of the advise he has given others (maybe not???)......so you have
several opinions you could get. I would e-mail Dr. Druker for his
opinion.....but this is more than the 3-fold increase, and I would think
you either increase your dose now, or do another pcr in a month or so and
see if there was an error.
I will tell you another thing Dr. D would say to you...."this is not panic
time"......but I know that it is hard to not worry about this.
love,
Maui Nanc

Hi Group,
I just got my latest PCR from MDACC and I have increased from .04 to .3, and
quite honestly I am freaking out about this. I started increasing in
December 2003 and stabilized in the last year only to jump up again. Two
years ago I was at .0022. I am taking 400 mg Gleevec and I am wondering
whether an increased dose would help. Any ideas?
Kristin
Dx 3-25-01

Hi Endrias,
All except the Larium or Doxycycline are shots, not pills, and they're no
problem with IM (Gleevec). Neither are the pills though, for that matter. A
lot of people have bad emotional reactions to Larium though - it's my
impression that it's much higher than what the package inserts report. Two
friends of mine have gone quite crazy while they were on it (though they
became normal again when they stopped).
Best,
Richard R

Hey Dane,
I continue to be impressed by your spirit - and your SUCCESS with the
transplant. Keep those uplifting messages coming! (plus the great photos).
I got a little piece of good news myself. My November and February qPCR's
seemed to be showing an increase in BCR-ABL, after a year of negativity.
However, I didn't really believe these results, partly because MSK's lab has
only been doing qPCR's for a relatively short time, and also because, I
don't know, I just felt so well (I know this is not a rational reason for
optimism, but there you are). Anyway, I leaned on them a bit and they ran
the test really carefully this time, and it came back negative once again. I
quit worrying about all this a month or so ago, but still it's a relief.
Warm wishes,
Richard R

Hey all....just completed day 72 and still feeling fine.
They are starting to ween me off the IV fluids as of today.
I only go to the clinic on Mondays and Thurdsay now, on the other days, I have
been doing home IV infusions.
Now they want to try no home infusions on the off days. I have to drink a
minimum of 64oz of water per day.
Tomorrow will be the first day off IV fluids since the CVC was installed over
100 days ago. I consider it a big step towards going home!
Still awaiting results from my last BMB taken last Monday.
Regards and Prayers
Dane
www.caringbridge.org/tx/dane

Hello everybody,
I was Dxed 7/02 and have been taking 400mg Gleevec and am PCRU.Other
than CML no other problems and blood counts are all ok. I am
planning to travel to Ethiopia and I was advised by the travel
clinic to do the following vaccines. If anyone had taken these pills
while on Gleevec please let me know. Thank you
-Hep. A
-Polio booster
-Typhoid
-Meningitis
-Yellow Fever (Live vaccine)
-and either Larium or Dosycycline for Malaria
I have also e-mailed my onc. but it might take her a while to
research.
Endrias A

Hello Margot,
He's almost as amazing as Dr. Druker <big grin
For those of you who don't know - the Team in Training
running/walking marathons are staffed by VOLUNTEER policemen and
women who route traffic, assist EM personnel, and keep the
participants SAFE during the event. They also use their vacation
time to volunteer. So, if you participate - please take the time to
say 'thank you'.
As an aside - my husband and I are still training for the Midnight
Mayors Marathon in Anchorage, AK on June 18th. I printed out the
elevation map and the last mile is a killer. It's about an 8% grade
UPHILL for a little over half a mile, then it plateaus but still
climbs at about a 5% grade for the last 1/2 mile.... Ugggg! No wonder
it's called INSULT Hill! (I'm getting so excited about Alaska
though - a new place to explore.)
I heard a beautiful story about this hill...
Every race year, there's a women who stands on this hill with a sign
that says: "I have Leukemia and I thank you!"
One marathoner said that reading this sign gave her the strength to
keep on going until the end!
Guess there's a lot of people we need to thank ...
Take Care Everyone,
Gale Bacon

Hi:
Those of you who have been on this or any other list to which I am
subscribed will recognize the name of Dr. Koller, my MD Anderson
hematologist. In the past three years, he has been the first and only
hematologist from Houston who has participated in the Houston Police Bicycle
Relay Team for two years in a row. Last year he found out that he had a
large tumor on one of his kidneys and had to have it removed. Consequently,
he missed the bicycle relay of 2004.
The Houston Police Department has participated in this relay for the last 23
years and by now has collected more than 1 million dollars in contributions
for the Leukemia & Lymphoma Society. Each member of the police department
uses his/her own vacation time for this purpose. It is an amazing effort to
collect funds to help leukemia patients.
I just found out that this year, just a year after having had this serious
operation, Dr. Koller is once a again a member of the Houston Police Bicycle
Relay for 2005. The relay starts May 28 in Houston, Texas, and ends on June
3 at Lake Tahoe, California. This is a distance of 2310 miles--as Dr.
Koller puts it, "2310 miles closer to the cure".
His letter indicates that people have asked him why not do something for
people with kidney cancer; however, he "truly believes that leukemia
research represents a window into all cancers. That what we can learn from
discovering and treating leukemia problems will be applicable to all cancers
" For this reason, he is once again riding for leukemia.
I just wanted you all to know that there are very dedicated people in this
world who spend their own time and money for a worthy cause that will
benefit not only leukemia patients, but patients of every other type of
cancer as well.
For that reason I would like to urge all of you to make a contribution in
any amount you can afford for this purpose. If you can contribute, please
make your check out to the Leukemia & Lymphoma Society and send it to the
following address:
Charles A. Koller, MD
MD Anderson Cancer Center--Box 428
1515 Holcombe Blvd.
Houston, TX 77030-4009
I want to thank all of you in advance who are able to contribute to this
worthy cause.
Margot

The file upload is not working as well as I planned. I will upload it to my
company website and provide access through there.
I'll provide the link when it is available. Hopefully it will be up and
running soon.
Cheers,
Cheryl-Anne

Hello All,
I am uploading a new file in the file section that can play on Microsoft
Windows media players. The file is a news clip that aired recently in
Montreal on an update about Suzan McNamara.
As most of you know, I had put together the FACT (Future Approaches to
Cancer Treatment) here in Montreal which was co-chaired by the two top
universities in Montreal, McGill and Universite de Montreal. The conference
generated a good deal of media attention for many reasons. However, I did
get a chance to tell one of the reporters that the REAL story was not about
me a cancer patient organizing this unique type of conference, but more
about the wonderful person we all know as Suzan McNamara who lead the
petition to expand the clinical drug trials for Gleevec back in the fall of
1999. With out which, I doubted I would have survived long enough and in
such good health to organize this cancer conference. So, they asked if they
could do an update with Suzan and Suzan was happy to agree.
Suzan plays a very vital role in helping the CML community here in Montreal
and we are in regular contact. She is very busy now with her work on her
PhD, but I keep her up to date on all the latest going on's.
I should also tell you that Suzan recently went on a trip to New York City
to shoot a commercial for Novartis on Gleevec. It should air during a "Meet
the Press" program in the Washington D.C. area.
Enjoy the video - and stay tuned for more news!
Cheers,
Cheryl-Anne

More interesting news!
Cheers,
Cheryl-Anne
Next-era targeted therapy overcoming Gleevec's shortcomings
Anaheim, Calif. -- Though Gleevec has shown "wonder drug" capabilities for
treating chronic myelogenous leukemia and other cancers, experience in
treating patients has revealed some shortcomings. In some cases, patients
have undergone relapse after building a resistance to the drug. For others
with advanced disease, the drug has failed to produce durable remissions.
However, a molecular understanding of resistance has rapidly led to a new
generation of drugs that might prove more effective than Gleevec.
Two studies presented here at the 96th Annual Meeting of the American
Association for Cancer Research report that a new compound, known as AMN107,
may one day offer a more potent alternative for treating patients with
acquired Gleevec resistance and others with advanced CML.
As originally conceived, Gleevec works in CML patients by selectively
deactivating Bcr-Abl, the abnormal tyrosine kinase protein that triggers
rapid growth of leukemic cells. Gleevec was hailed as the first approved
drug to directly inhibit the activity of an enzyme known to cause
uncontrolled cell growth, and it has been highly successful for many
patients.
Scientists soon recognized, however, that some patients develop mutations in
the Bcr-Abl protein that drastically reduce Gleevec's effectiveness.
AMN107 Holds Promise for Treating Gleevec-Resistant Leukemia According to
Oregon Scientists: Abstract 5282
To overcome resistance to Gleevec, scientists are designing new compounds
that bind tighter to the intended target, the Bcr-Abl protein. One such
candidate drug is AMN107, synthesized by Novartis Pharmaceuticals in Basel,
Switzerland, and characterized in collaboration with investigators at the
Dana Farber Cancer Institute.
In essence, AMN107 retains half the chemical makeup of Gleevec, while the
other half was engineered to assure a tighter link to Bcr-Abl, thus
increasing potency and potentially overcoming resistance due to mutations in
Bcr-Abl.
As a test, scientists at the Oregon Health and Science University in
Portland compared the potency of the new compound against Gleevec using a
panel of cell lines expressing 16 different Gleevec-resistant, mutant
versions of Bcr-Abl.
Their results, reported during the AACR Annual Meeting, showed that AMN107
was at least 20 times more potent than Gleevec against most of the resistant
mutants.
"Our findings show that 15 of the 16 mutants would be predicted to be
sensitive to AMN107, while one mutant remains insensitive that would require
a different, as yet undiscovered, inhibitor," said Thomas O'Hare, a research
specialist in Gleevec pioneer Brian Druker's laboratory at the Oregon Health
and Science University Cancer Institute.
"These data indicate that AMN107 is a highly active Bcr-Abl inhibitor that
may have clinical utility in patients with Gleevec-refractory CML.
"In this study, we also investigated the other leading clinical candidate
for treating Gleevec-refractory CML, a Bristol-Myers Squibb compound called
BMS-354825. The results were equally impressive.
"This is great news for patients. We believe that having several safe and
effective drugs available is the key to controlling acquired drug resistance
in CML."
AMN107 Rescues Gleevec-Resistant Patients in Clinical Trial Conducted by
Researchers at UT M. D. Anderson: Abstract 3971
AMN107 appears to effectively rescue patients with chronic myeloid leukemia
(CML) who did not respond to targeted therapy with Gleevec, according to
researchers from The University of Texas M. D. Anderson Cancer Center.
The researchers report that more than 70 percent of advanced CML patients in
an international study have shown a response to the drug, AMN107, and that
patients with the early form of the disease have responded at a rate of more
than 90 percent.
"If you can take a pill and rescue people who failed the current standard of
care, that is remarkable," says the study leader, Francis Giles, M.D., a
professor of medicine in the Department of Leukemia at M. D. Anderson Cancer
Center. The study, which includes researchers and patients at the University
of Frankfurt in Germany, is still ongoing.
The researchers note that the response rate in over 100 patients enrolled in
the clinical trial to date continues to improve, as doses are rapidly
increased. The first patients began treatment at 50 milligrams, but now all
are taking 400 milligrams twice a day "and we have certainly not reached a
dose-limiting toxicity," Giles say. "The drug is very safe, and we are
seeing a response that improves daily."
Giles stresses that the "vast majority" of CML patients do very well on
Gleevec, and that AMN107 was designed to treat the 10 percent of patients
who do not respond, either because of a known mutation that Gleevec does not
treat, or because the cancer has advanced to the point where other mutations
in the cancer arise.
He adds, however, that M. D. Anderson Cancer Center will soon launch a
series of studies testing use of AMN107 as the first therapy used by CML
patients, whether they have the early chronic stage, advanced "accelerated"
and terminal "blast" stages of the disease.
"We are not looking to replace use of Gleevec, but to see how AMN107 can fit
into the treatment picture," says Giles. "My guess is that patients will
benefit from both agents." The study is being funded by Novartis, which
manufacturers both AMN107 and Gleevec. Giles presented first results of the
therapy in a fewer number of patients last December at the annual meeting of
the American Society of Hematology.
AMN107 is a refinement of Gleevec because it binds more tightly on to the
Bcr-Abl enzyme that pushes bone marrow stem cells to continually grow. The
new agent also latches on to Gleevec-resistant, mutated versions of Bcr-Abl
that cause resistance in some Gleevec users, Giles says. But the study also
is demonstrating that not all patients, especially those in more advanced
stages, benefit from AMN107, probably because they have developed new
mutations, he says.
The high level of responses seen to date are classified as hematologic,
which is defined as a return to normal blood counts, but increasing numbers
of "cytogenetic" responses are also being seen, which is the elimination of
cells with the so-called Philadelphia chromosome, which produces the
cancer-causing Bcr-Abl kinase. Researchers also are monitoring the number of
"molecular major responses," defined as a complete absence of all molecular
abnormalities and a return to a normal status. "We now are beginning to see
the number of cytogenetic responses climb, as well as molecular major
responses," Giles says.
He added that the potential success of AMN107 represents a "phenomenal rate"
of drug development since Gleevec was introduced in 1999. "We have been able
to take the knowledge of how Gleevec works - where exactly it binds to
Bcr-Abl - and tweak it to be as much as 30 to 100 times more potent."
It also represents a new era of medical treatment "in which the integration
between preclinical researchers and clinical oncologists is seamless," Giles
says. "I don't work in a lab. I spend all my time with patients. But
clinicians are now using molecular endpoints every day and in every way to
direct our therapy and to design protocols. It is incredibly exciting."

Hello Folks,
This is NEW information on how CML cells DO NOT crowd out healthy cells, as
was long thought to be the case, but actually kill them. While this sounds
like it is bad news, it is good news as it sheds new light into this area
and paves the way for science to work on the compound that can be used
adjunctively with IM to reverse this action.
Best,
Cheryl-Anne
CML found to wield 'death factor' that kills normal blood marrow cells
ANAHEIM - Based on surprising results from animal experiments, researchers
at The University of Texas M. D. Anderson Cancer Center have revamped common
beliefs about how chronic myeloid leukemia (CML) functions within bone
marrow - a discovery they hope may some day lead to additional therapeutic
strategies.
In a study presented at the annual meeting of the American Association for
Cancer Research (AACR), they found that CML does not "crowd out" normal
blood cells in the bone marrow, as has long been thought, but actually kills
those healthy cells through use of a unique cell "death factor."
Those destructive proteins, known as lipocalin 24p3, work to promote the
development of leukemia by giving the cancer room to grow and spread, making
it easier to invade the bone marrow and spleen, say the researchers.
Because they also show in this study that blocking the protein with an
antibody in mouse cell experiments will restrain the ability of the cell
death protein to kill normal bone marrow cells, the researchers suggest that
a therapy that could disable 24p3 might prove useful to CML patients when
combined with traditional treatment, such as with Gleevec.
"We don't yet have a therapy that can be tested in humans, but our hope is
that this work can lead to development of such a one-two punch," says the
study's principal investigator, Ralph Arlinghaus, Ph.D., a professor and
chair of the Department of Molecular Pathology.
In the least, the research demonstrates that CML is much craftier than had
been suspected, he says. Before this study, no one knew that the 24p3 mouse
protein (known in humans as neutrophil gelatinase-associated lipocalin, or
NGAL) had any involvement in leukemia, Arlinghaus says.
The protein is a normal component of cells and is believed to have a variety
of functions. But the "BCR-ABL oncoprotein (encoded by the Philadelphia
chromosome, a translocation of genetic material responsible for most CML)
appears to hijack 24p3 and change it structurally to become a cell killer,"
he says.
The secreted proteins appear to destroy bone marrow stem cells responsible
for producing red blood cells as well as platelets, but leukemia cells are
believed to be resistant to the effects of 24p3, the researchers found.
"This provides an understanding of how Philadelphia chromosome-positive
cells can overcome and grow effectively in a crowded marrow environment,"
Arlinghaus says.
"The disease may begin with a single translocation, but with the death
factor helping to continuously clear the way, the leukemia cells can take
over the entire marrow," he says. "And when you block the protein, leukemia
cells have a hard time growing in the marrow. The goal now is to study this
active process further in human leukemia cells.
###
The study, funded by a grant from the National Cancer Institute, will be
presented by its first author at AACR by Hui Lin, research investigator in
the Department of Molecular Pathology.

.

Hi Ula:
Welcome to our group.
I too had to take a short Gleevec vacation after starting it. I was
kind of upset when the doctor told me to stop Gleevec but I got over
that. He told me that my bone marrow needed a chance to recover and
start producing the red blood cells and white blood cells, etc that
the leukemic and platelets had crowded out. My platelet count was
really high when I was diagnosed.
He watched my bloodwork very closely and I believe I went in every
week or every other week until it recovered.
Mary K

Hi Ula,
I haven't seen this often but I will tell you what my Onc did for me.
As you can tell by now it's quite common for the counts to stabilize and
then get close to too low.... but that will all even out.
In my case ( almost 4 years ago) when my counts did the initial drop to
almost too low, my Onc agreed that instead of going off of Gleevec
completely we dropped it to 300 mgs one day then 2oo mgs the next for a
couple of weeks. Then I went to 400 and 300 for a couple more weeks until it
stabilized and no problems since thank God! ( also he was checking my CBC's
twice a week during that time)
Lisa M
Tampa Fl
Dx 5-2000
Int/hyd/arc
6-2001 Gleevec
8-2001 PCRU
---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.859 / Virus Database: 585 - Release Date: 2/14/2005

Hi,
I haven't posted in a while, so welcome to the group no one wanted to belong to,
but a great group it is. Yes your WBC is low but i think the ONC should have
waited maybe alittle bit longer so that the WBC can regulate itself. When i was
first diagnosed in March 2003, my doctor explained to me that my WBC can get low
but will regulate itself for my WBC did go to to 1.7 and then went back to 2
then 3...it fluctuates now from 3-5....maybe you should call yoru doctor. I do
know though that if your WBC stays very low on gleevec after a period of time
they may want to try something else...
Take care and let us know!!!
Penny
Ula <cosmicgoddess1@...
Hello everyone,
I am on Gleevec since 29th of March and had my first Bloodsample taken
on 4th April. My Onco told me the following day that my Bloodcount is
normal.
I had another Bloodsample taken on 18th April and received a phonecall
from my Onco asking me to stop taking Gleevec until 26th April. He
asks for a Bloodsample on that day and to see him.
He explained that my current white bloodcount is to low, only 1.5
He says not to worry, that my bloodcells only need to recuperate for
the time being.
Has anyone else from the Group been advised from their Onco to stop
Gleevec for some time?
I dont have any more information at this stage but will ask my Onco
for some copies of the tests done so far.
Thank you for listening ;-)
"Newbie" Ula

Hello everyone,
I am on Gleevec since 29th of March and had my first Bloodsample taken
on 4th April. My Onco told me the following day that my Bloodcount is
normal.
I had another Bloodsample taken on 18th April and received a phonecall
from my Onco asking me to stop taking Gleevec until 26th April. He
asks for a Bloodsample on that day and to see him.
He explained that my current white bloodcount is to low, only 1.5
He says not to worry, that my bloodcells only need to recuperate for
the time being.
Has anyone else from the Group been advised from their Onco to stop
Gleevec for some time?
I dont have any more information at this stage but will ask my Onco
for some copies of the tests done so far.
Thank you for listening ;-)
"Newbie" Ula

Happy Birthday Shelly. I hope you have many, many more to come and
hope you did something special to celebrate. My birthday used to be
just another day but it has become a very important day to celebrate
now. Best Wishes, Love, Peace, Hope & Prayers, Pat

Hello RIchard,
I have access to quite a few articles in the PDF format that I could
send along to you. They are quite recent. I am swamped lately and
haven't gotten to them. I'll send them along to you.
Cheers,
Cheryl-Anne

http://www.fototime.com/4E8B23B27FB69C7/orig.jpg
Corrals of Color, Route 362, Whitehall, Texas

Happy Birthday Shelly!
Lisa M
Tampa Fl
---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.859 / Virus Database: 585 - Release Date: 2/14/2005

Hi Kristin,
Thank you for the update on grapefruit/drug interactions. As a
person who takes medication for other medical problems, as well as
CML, I know first hand how important it is to avoid grapefruit in
any form. Thanks again for the update.
John

Hi Folks,
I have some time in the next couple of weeks, and would like to devote a bit
of it to the benefit of this group. If any of you knows of recent articles
of interest to the CML community, but which require a bit of interpretation
for the lay reader, please send them along and I'll be glad to have a go.
I'm keeping my eye on "Blood," which is the only journal I currently get,
and the latest issue has a couple of articles worth working on, but other
than Blood I no longer have my finger very much on the pulse of CML
research. I imagine some of you do, and I'll be glad to team up with you on
getting the word out - whatever that word is!
Hoping you're all well - and having as nice weather as we have here in New
England (finally).
Richard R

Happy Birthday to you, Shelley!!!! I hope you have a WONDERFUL day and let
me know what you did for your birthday celebration! Love, LynneA

Alternative Fuel
http://www.fototime.com/952F714AD3AEC42/orig.jpg

Kristin,
Thanks for always being a source of good information for
the group.....I am glad that you are active on your
computer!
Nancy C.

Web Site Gives Info on Grapefruit/Drug Interactions
SUNDAY, April 17 (HealthDay News) -- As documented in a number of studies
released since the 1980s, grapefruit and grapefruit juice can dangerously
interact with common prescription medications. Now, cautionary information
about grapefruit-drug interactions is available on a Web site,
DrugInteractionCenter.org.
The site provides consumers and health professionals with a comprehensive
database of grapefruit-drug interactions. It also includes supporting
scientific literature on such interactions.
A 2002 survey found that 80 percent of doctors and more than 50 percent of
pharmacists lacked adequate information about how grapefruit juice can
affect certain drugs. Grapefruit juice is one of the most common sources of
food-drug interactions.
"Since there is a lot of inaccurate and out-of-date information on Web
sites, we developed DrugInteractionCenter.org to provide healthcare
professionals with a credible source on grapefruit-drug interactions, which
they also can recommend to interested patients," Hartmut Derendorf,
co-director of the University of Florida's (UF) Center for Food-Drug
Interaction Research and Education, said in a prepared statement.
"Drug interactions with grapefruit are one of the most commonly
misunderstood food-drug interactions. While certain prescription drugs
interact with grapefruit juice, most do not," said Derendorf, a professor at
UF's College of Pharmacy.
Grapefruit juice inhibits the CYP3A4 enzyme, which metabolizes certain
drugs. This interference by grapefruit juice may enhance the body's
absorption of these drugs, resulting in side effects.
More information
Here's where you can find DrugInteractionCenter.org.

Hi Christine,
I lost all your new info. Somehow. I like to blame the polterveists who have
clearly taken over my home.
Please send it to me privately at loewen1@.... I want to get in touch and
find out what's going on with the move, the trial, etc.
Love and hope,
Susan L

Hi Everyone,
I hope all the confusion didn't cause everyone to leave! I was asked
by a couple of people if the name could be changed so the group would
be easier to locate in a search. I didn't think it could, so I was
playing around with the tools and found that I could do it. I actually
changed it and meant to change it back. GLEEVEC moment.......I
FORGOT! I'm so sorry for all the confusion and would like everyone's
input on the name and possible changes. Again I am sorry for the
sudden loss of access and any inconvience it may have caused.
Goofy Gleevec Girl
AMY

Another test

Testing

Hello,
The moderator of the cml2 group has changed the group's name.
This means that both the group's email address and the group home page
location have changed.
The group email address:

Hello Cammy,
Sorry you are having trouble with nausea, while I am not on 600mg I
can relate to how it feels.
Since you are moving to 6 X 100mg pills you can try splitting the
dose, taking 3 in the morning and 3 in the pm. Sometimes with the
nausea feeling it isn't how much you eat but what you eat. I have
found that taking Gleevec with V8 works wonders. I also have a
juicer and juice quite a bit and it works very well. I seem to go
through cycles of what works best. My latest cycle is my homemade
juice in the morning which consists of 2 apples, 1 carrot and 1
orange. I try to use only organic fruits and vegetables when I
juice, but they can be quite expensive sometimes, now that spring is
here the prices will come down a bit;
or peanut butter on 12 grain bread with banana - no nausea, and I
feel great. Homemade juice is the best because it is so thick and
pulpy and much more fresh than the store bought kind. My schedule is
incredibly hectic in the morning, juicing doesn't add much time to
my morning routine - it is very doable.
My homemade V8 recipe for one serving is 1 carrot, 1 celery, 1 small
raw beet, parsley and sometimes I use a tomato.
Both of these juice recipes work wonders against the nausea feeling.
Hope this helps, keep us posted if you find something that works for
you. Good luck on you PCR hope you have improved results.
Cheers,
Cheryl-Anne

Thank you Lisa!
lmperry04 <lmperry04@...
Really appreciate the advice on the blood work-up. I'm seeing my
doctor on the 28th and will ask about each of these.
Thanks for being so helpful to many of us Tracey!
Lisa Perry

Really appreciate the advice on the blood work-up. I'm seeing my
doctor on the 28th and will ask about each of these.
Thanks for being so helpful to many of us Tracey!
Lisa Perry

Sorry Richard its my Alzheimers.
Judy T

The best wildflower field I have found yet..
http://www.mavican.nu/phpbb/viewtopic.php?t=50576
Whitehall Texas

Hi Cammy,
Why not talk to Dr. Soiffer and ask him if you can continue with the 400 mg
dose as long as your counts are not going higher than 4% and you are stable
without the side effects.
So what if you don't get to Zero. As long as the CML remains chronic and you
have a good Quality of Life, you are doing as well as those who are at Zero.
There are many patients for whom it has taken over 3 years at the 400 mg
dose to get to Zero.
Zavie

Hello All
I thought this column in today's Montreal Gazette was worthy of sharing.
On the subject of aging....
Happy reading,
Cheers,
Cheryl-Anne
Ommm my! I'm old
MIKE BOONE
The Gazette
April 15, 2005
Satori, in Zen, is sudden awareness - the ah-ha! moment that a Buddhist
scholar called "the sudden flashing into consciousness of a new truth
hitherto undreamed of," a "sort of mental catastrophe taking place all at
once."
There are many satori on the path to enlightenment. I had one a while ago on
the 211 bus.
Not the ideal setting for a transcendent experience. I wasn't wearing
saffron-coloured robes. My fellow strap-hangers weren't leaning on banyan
trees.
But the moment, when it occurred, had the satorial force of a lightning
bolt.
First, the back story:
One of my colleagues - whom I won't identify, but his initials are William
Marsden - was telling a few of us about an embarrassing incident that had
occurred during his morning commute. A young woman had offered him her seat
on the bus.
We let him have it with the full arsenal: jokes about the sweet bird of
youth having flown, sexual dysfunction, "senior moments."
The best Bill could do for a comeback was point out he'd been wearing a wool
hat - this happened in late winter - which may have accentuated a false
impression of infirmity.
Flash forward to the very next morning on the inbound 211. You know what's
coming - and I wasn't wearing a hat.
I was standing near a CEGEP student (this was pre-strike) perusing her
chemistry textbook. Looking up from molecular diagrams as we pulled into the
Dorval Circle, she asked me what time it was.
Something about the way I said "9:15" must have motivated her to ask another
question:
"Would you like to sit down?"
"Where's the hidden camera?" I wondered. "Will this end up on
www.hoistbymyownpetard.com? Did Marsden set me up?"
"You don't understand," I wanted to say. "It's 1967. I'm 19 years old. When
the bus reaches downtown, how about we go blow a jay and listen to Sgt.
Pepper's Lonely Hearts Club Band?"
But on this Magical Misery Tour, enlightenment pre-empted delusion. The
hitherto undreamed of, mentally catastrophic reality was I looked like
someone who needed to take a load off.
After satori, "you no longer see the world in the same way, you have a
different perception of life." There is "a sense of the beyond, arriving at
a destination."
When we arrived at Lionel Groulx metro, I stepped aside to let the young
girl go out the back door of the 211.
The old guy had to disembark at the front - to get the transfer I'd
forgotten to ask for.
Next stop: those "memory care and assisted living" apartments I hear
advertised on the radio. Sensible walking shoes. And a good seat at the
mall.
In her New York Times column this week, Maureen Dowd pointed out "despite
boomers' zealous attempts to stop time - with fitness and anti-aging
products, with cosmetic enhancements by needle, laser and knife - time has
caught up."
Strive, then, toward Zen-like acceptance of aging. Grin and bear it (but
don't bare it.)
It's said that after satori, you see things more clearly (albeit, in my
case, through bi-focals.)
And you get a seat on the bus.
Stratégie de Communication Med Summit Inc/Sommets Médical
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Last November I went to my Onc at Dana Farber, Dr Soiffer, I was
still at 4% so he upped my gleevic to 600mg. Not only did it cause me
more stomache cramps but taking a half of a 400mg pill caused me to
vomit twice a day, before I went to bed and when I woke up. Not fun.
So here is the dilema. I am going to mail order prescriptions for my
gleevic. It will cost one co-payment for a 3 month supply. I was
taking 2-100mg tabs and 1-400mg tab, 2 prescriptions. The problem is
I now am going to be taking 6-100mg tabs. This way it is just 1
prescription. Is anyone else taking 6 pills?
I also take the whole 600 at night with food. I have tried the
morning, the lunch time and the dinner time mode. But each one caused
so much nausea, I was done for the day. And it was not that I didn't
eat enough, the scale showed that it was MORE than ample!!! This way
I sleep through the crappy feeling. But now I am worried about the
new dosing schedule. Not looking forward to anymore discomforts!
thanks,
Cammy
dx 10/03
400mg till 11/04 (4%Phillies)
600 present
waiting for PCR

Hi Susan,
I just got the okay from my medical insurance to UP my protonix. I get
HORRIBLE abdominal cramps, and they got worse after upping my gleevic
to 600. If I miss a day of the protonix I feel a bit crampy and crappy
but if I forget 2 days I cannot move.
I too am taking Procrit shots and am hovering around 10.5 on the hemo
scale. I added a tablespoon of Black Strap molasses this month. I am
trying an experiment. I want off as many drugs as possible.
I am glad that you are feeling better and your counts are up.
Cammy

Hello All,
I have placed two new files in the files section. The first is the Canadian
formulary document for Gleevec, section H -Interactions should be of
interest and help to some on this list.
The second file is from Mednet in the UK and it is some information on
diuretics that I found interesting. The issue of edema has been well
covered here, and hopefully this document will add to the learning
experience.
Of further note on the edema discussion thread:
I have had a few difficult bouts with edema and have been helped by all the
suggestions given on this list and others. I can add something new, which I
hinted at not too long ago. Since the fall I have occasionally used support
hose and find that it has been quite helpful. Dr. L. suggested to give it a
try to help "push out" excess fluid from the tissues so that the diuretics
would be more effective. Support hose that offers "light compression"
therapy is usually prescribed and although they can be quite expensive,
they can be claimed on certain health plans, so it might be worth it to see
if this might help you.
As I do take Lasix, I monitor my electrolytes, eat the right foods (mostly)
and make sure to take potassium and magnesium supplements.
Hope this helps,
Cheryl-Anne

Hi Everyone,
Not so long ago I reported here (or it may have been pre-CML2) that I had cut my
monthly med costs by using a daily double dose of OTC Prilosec instead of
prescription Protonix to stop bleeding from 2 stomach ulcers which were causing
low Hgb and Hct through loss of blood. Procrit wasn't working because it just
bled out.
Then, about 3 weeks ago the counts started dropping again and, sure enough,
there was blood in my stool samples. A nurse practitioner told me that Protonix
is much more of a healing element than any of the OTC anti-acids. So, I went
back to Protonix and today, 12 samples taken over 2 weeks showed that I have
stopped bleeding and my Hgb and Hct were significantly higher helped there by
the Procrit shot of 2 weeks ago.
So, if you ever have internal bleeding due to Gleevec (IM) or any other reason,
just know that the OTC stuff may work for normal acid reflux but NOT for ulcers.
I made a suggestion (sanctioned by my onc, btw) before enough time had passed
for the true results to show up in lab tests. Just wanted to clear that up. In
this case, the nurse knew better than the doc. ;--)
Susan L

Hi Lisa,
The chemistry screen includes a bunch of tests that aren't on the
CBC. They include liver function, kidney function and electrolytes
amoung others but those are the ones that I would insist on.
In terms of liver function, they include: ALT, AST, LDH, ALP and
bilirubin. Kidney function include: creatinine and urea. And the
electrolytes include: potassium, sodium, chloride, phosphorus,
magnesium and calcium.
Especially if you're taking supplements, I think it's imperitive that
you have your electrolytes checked to make sure you aren't getting too
much.
Hope that helps,
Tracey

What does a chem screen look at? I too only see my doctor every 3
months for a cbc and to check the kidneys only at my insistance. Any
other routine tests you might suggest other than fish and pcr?
Thanks,
Lisa Perry
dx 5/03

The search for the perfect field of wildflowers continues...
http://www.fototime.com/BAA2E9220C59CA4/orig.jpg

Just a note to say I am now 64 days post transplant and feeling fine. They have
me down to two days a week in the clinic, the other days on my own doing home
transfusions which are a piece of cake. I am enjoying the freedom and doing a
lot of exploring out in the countryside outside of Houston. I figure I'm safest
away from the crowds and out in the country, so I spend a lot of time getting
lost and then trying to find my way back home. which is something I've been
doing ever since I moved to Texas.
Had the privilege of meeting Hertz-Nurtle (Avis) today at the Rotary House for
lunch. Such a vibrant, interesting woman with great true to life stories always
on the tip of her tongue. She kept us spellbound at the table for well over an
hour. Thank you Avis!
My counts remain unchanged. Constantly low on magnesium, still trying to find
a happy balance between doses of magnesium and immodium...not sure there is one.
The only thing I am getting via IV is saline and magnesium supplements. I time
my days and travels by distances between bathrooms, and the scariest thing I
have to do is occasionally use a public bathroom. I must look pretty funny
donning gloves and mask before entering a public bathroom as if I were a doctor
entering an OR. I do get some strange looks from people.
Slightly low on the hemogloben around 10 or 11 o the average, but that is where
I was for most of my years on Gleevec.
My second post BMT biopsy is scheduled for the 18th with the results coming
around 10 days later. Until then it's watching out for kooties while I hurry up
and wait. I do think I am getting another weekend furlough to go see my kids
this weekend, so we are excited about that.
Hope this note finds everyone doing well.
Regards and Prayers, DT

Hi Judy,
I don't think I had a kidney problem - or if I did, then my Alzheimers is
acting up again because I can't remember it!
Unless you're addressing this to a different Richard....
Cheers,
Richard R

Is anyone going to OHSU in August? I need to make an appointment. I would love
to make it to coincide with someone to meet up with them.
Shelley

Hi Judy,
I agree with Tracey. 3 months between blood tests seems longer than most
cml experts
would have their patients go. Once a patient is stable, Dr. Druker likes a
cbc every month
and a chem screen every other month. Seems like an inexpensive way to stay
on top of
things.
Nancy C.

Hi Ursula
Welcome to the group. I see we are from the same city, sorry we had to meet
like this, but you will find this group a great souce of information and
support. If you like, maybe we could meet and compare diseases, or just have
coffee, it is good to finally meet some one else near by who is taking glivec
and dealing with cml
Judy T

Hi Richard
Good to hear from you again, how is the kidney problem going, I have been
thinking of you and wondering what is happening
Judy T

Hi all
I'm just checking in too. I am missing the chats with Zavie and co because I
am so well I have been doing some work. Wow that feels good, i am very tired
tonigh, but finally feel like"normal" what ever that is. I am only having a
blood test every 3 months from my oncologist, is this enough. My counts are
very normal now, but given I had so much trouble at the start, should I have
them more often. I am not going back to full time teaching, and am seeing an
independent team of doctors starting tomorrow to assess this. My docs say I
shouldn't work with children because my immune system isn't working well. I am
very suseptible to chest infections, so it will be interesting to see what this
team of experts say. Has anyone else been through this type of assessment
Judy Telford

9:00 PM Eastern Time on YM

Hi Ursula,
Welcome to the club that nobody really wants to be a member of.
There are other Aussies on this list. I have cc'd all the Aussies in my
directory. Please excuse the intrusion.
You might want to join us for chat this evening. 9:00 PM here but 11:00 AM
in Melbourne.
Zavie
It won't be long and you will be able to decipher the stuff in my signature.
Zavie Miller (age 66)
Ottawa, Canada, dxd 8/99
INF 10/99 to 2/00, CHF
Gleevec since 4/01 (400 mg)
CCR 9/01 # 102 in Zero Club
PCRU 5/02
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-282-0204

Hi Lisa,
Thanks for sharing your experience. I also starting taking calcium
and magnesium. I somehow thought that I never needed any
supplements because I ate properly but I didn't factor in the fact
that Gleevec can deplete us of our electrolytes so now I'm taking
them.
I have definately noticed a difference in the muscle cramps. They
are much reduced since the supplement....not sure if it's the
calcium or the magnesium or both but either way, it's definately
made a difference.
I think my concentration has improved also but I haven't had any
situations to really test it. Maybe I'll try a new recipe soon and
see how well I can follow it :)
Congratulations on your PCR! I think I'm giving up on PCR's here.
Despite the attempts that have been made to standardize the testing
in Canada, there are still serious problems with them and in
particular with their interpretations so unfortunately I'll have to
rely on the old fashioned BMB until they can get their act
together...... if that's even possible <sigh
who have access to reputable testing!
Take care,
Tracey
PS how much calcium, magnesium and potassium are you taking?

Hi all,
I had been diagnosed with CML on March 1th and are taking Glivec
(Gleevec) since March 29th.
Before Glivec I was on Hydrea which helped but were not satisfactory
enough.
Since I'm on Glivec my first Bloodtest showed a great improvement and
so far I have not experienced any problems.
It's still early days ;)
wishing all of you the best of health.
Ursula in Melbourne Australia

Had a nice visit from Jerry Mayfield in the day clinic today. Lucky he caught
me, as I am only going to the clinic two days a week now. On the free days I do
the home infusions.
Jerry looked great and was in high spirits, as he continues to receive good news
on his progress in his BMS protocol.
He had a little time this visit, so we had a chance to exchange war stories and
a few laughs.
My mother is up visiting so she had a chance to meet him too.
Today is day 62 for me and still doing fine. Just the same magnesium
defficiency and slight edema in the legs.
The lease on our apartment is up at the end of the month, so I will be moving
into the Rotary House for the remainder of my stay.
Regards and prayers
Dane
www.caringbridge.org/tx/dane

While were on the subject of edema, potassium, and magnesium...
Just thought I would share that I went to my visit at Moffitt the other day
and explained to the doctor there that I had added the potassium, magnesium
and calcium supplements to my diet. I expected a negative response; because
in a discussion previously he said don't take anything but a daily multi
vitamin. He was actually ok with it and agreed that I should take them for
about a month and let him know if I notice any changes.
If not he mentioned some antidepressant that he would like to try which
would also help with the deficiencies. I don't know which one he was
referring to.
One night a few weeks ago I was eating very salty Barbecue corn chips (I
know, I know, but I had a craving and needed to get rid of it:)
The next day I woke up with my eyes so huge. I am use to the extra puffiness
buy this was really drastic so I took a water pill. (moduretic)My Onc gave
them to me a while back but I only take a half here and there.
This particular day I took it I had horrible feet cramps all night. The
worst I had in a long time. The pain was almost intolerable.
That day I purchase the potassium, magnesium and calcium.
No problems since.
And Tracey, FYI, I actually notice that my concentration has been better.
With the exception of trying got put my granddaughter in the trunk of my car
last night:) I was under a lot of stress trying to get dinner done, kids
picked up from baseball practice and off to take a friend luggage I was
loaning.
I took my 4 year old granddaughter with me and barely made it on time to my
friends. When we were returning to my car I had opened the door to put my
granddaughter in her car seat but I also had a small piece of luggage to put
in the trunk. Needless to say I put the luggage in the car seat and then
started to lift my granddaughter up to put her in the open trunk?
She turned to look at me and all I could we could do was laugh.
But she made sure to warn me that she would have to let her mom and dad know
I tried to put her in the trunk.
Lastly, at my appointment I discussed the different PCR results from the
different labs and Dr List at Moffitt said that based on my result history,
he has noted on my chart that I have achieved a 5 log reduction and he asked
me not to use the local Lab corp here any more.
(that was nice to hear)
Lisa
Tampa Fl
5-2000
hyd/int/arc
6-2001 400 mgs Gleevec
8-2001 PCRU
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Hey, friends,
I've been SERIOUSLY absent from the list for the past couple of busy weeks.
I'm just checking in now to say hi - not much else.
Maine is finally gorgeous, with the last of the snow melted (just in the
last few days), flowers emerging, and the air warm with promise. TS Eliot
wrote that "April is the cruelest month, mixing memory with desire," and I
know what he means - but I'll take it!
Love,
Richard R

Hi.
In addition to adding potassium through natural nutrients there are other
nutrients that work well as natural diuretics including watermelon and dark
greens.
Susan L

http://www.mavican.nu/phpbb/viewtopic.php?t=50444
Art in the Park
City Hall, Downtown Houston

Hi Nancy,
The fluid retention around the eyes (peri-orbital swelling) is most
likely Gleevec related. This is one of the notable side effects of
Gleevec and many people experience it. I also have recently had
below normal potassium and I've been supplementing with 595mg's of
potassium daily (it's also good for the heart.) If your doctor is
reluctant to prescribe a diuretic, then I'd ask him about taking
potassium. Sodium & potassium work together in your body to hold or
relieve you of water. It sounds like potassium would help with your
edema. Bananas and oranges are a good source of natural potassium.
Sometimes I've had sudden fluid retention and it was due to eating a
high salt meal. (I love Mexican food!) It took a few days to go away.
Have you had any muscle or finger/toe cramping? If so, then
calcium/magnesium helps with that.
Regards,
Gale Bacon
zero club #112
400mgs Gleevec