CML

Hi.I'm Joy.I'm a 40 year old wife and mother.I was just diagnosed with
CML last week.I am still coming to terms with the news but I've made up
my mind to fight this with all I have in me.i would like to hear about
other people with the same illness and how they deal with it and about
other people's experiences with it.I look forward to meeting other
group members very soon.Thank you for having me as part of the group.

Dear Kathie
I have been on Coumadin since 2000 due to two pulmonary embolisms that I had.
I was diagnoised with CML June 06 and am on 400mgs of Gleevec. I take 5 mgs
of coumadin every night except for Tues & Thurs. Then I only take 21/2 mgs. I
am monitored by my internist and oncologist. I have blood tests every 4 wks to
make sure the coumadin is at the right level. The only thing I have found is
that I am colder than I ever was. I am also 74 years old. I guess the
combination of Coumadin and Gleevec is the reason. Other than that I seem to be
okay.
Hope this helps.
Ceil
NYC<BR
http://www.aol.com.</HTML

Greetings Friends!
I will be relocating to Dallas in a few months and would appreciate
referrals to top-notch oncologists in that area.
I have been on 400 mg of Gleevec since December 1 with great results
and want my relocation to be seamless.
Thanks in advance.
Wayne

Dear Listmates:
I am writing to seek the counsel of any of you who have had bouts of
atrial fib or who have had to take blood thinners. I was just
released from the hospital after a bout with atrial fib. My heart
has returned to sinus rhythm on its own accord, but now the
hospitalist has recommended that I take a low dose (2 mgs) of
Coumadin to guard against possible clots forming should I return to
atrial fib. Everything I have read says that Coumadin should not be
taken with Gleevec as Gleevec accelerates the effects of Coumadin.
And I had a gastro bleed last year that put me in the hospital
needing two units of packed red blood cells. As a result my dose of
Gleevec was lowered from 800 mgs. to 600 mgs.
Is there anyone out there on Coumadin. If so would you mind sharing
your dosage, how long you have been on the drug, how often your INR
levels are monitored, and what if any side effects you have
experienced.
In addition to taking 600 mgs. of Gleevec I also take 40,000 units of
ProCrit weekly. I have been zero by PCR since July of 2005, having
been diagnosed 12/03.
Please feel free to respond to me off list if you prefer.
Thanks for the help.
Kathie formerly in Kentucky, now in Naples.

I have complained about this for years now. The same symptoms. Cycle
changes, severe PMS symptoms, especially the night sweats. I hate it!
My ONC and my primary did testing and said my hormone levels were a bit
higher than they should be at my age_ now 42!
But finally last year I started getting my period 3 times a month and
demanded a sonogram because they could not do a pap test considering I could
not get a good 10 days without bleeding.
The sonogram did show that I had cyst on my ovaries and my PCP said to leave
it alone. The end of December I got my cycle again and it didn't end until I
went to the gynecologist and I demanded a D&C. I had that done February 14th
and so far so good.
But the other symptoms are still there ladies. Especially the night sweats!
And they always start a week before my cycle.
The good news is that they biopsy the lining of the uterus when the do the
D&C and that came back fine.
Regardless of what Dr's say I believe I have all the menopause symptoms and
I believe its due to CML or Gleevec.
It started about a year after treatment began and my first year was the
interferon and ARC.
Hopefully one day they will think its worth researching further to see why
we women have these same symptoms.
Lisa Martinez

Hi Jennifer,
I've heard that Effexor is a great drug for all the reasons you've
listed (and more) but I was under the impression that it interacted
with Gleevec. I checked
http://www.drugs.com/drug_interactions.html
and it says that there's a moderate drug interaction between the
two. Did your doctor discuss this at all?
Take care,
Tracey

Lynn-
I wanted to update since seeing my oncologist after the OBGYN. My
oncologist stated that she normally recommends anyone with a history of cancer
and
needing some sort of HRT for menopausal side effects to go onto Clonidine or
Effexor. She states that they tend to take away the sweats, hot flashes, mood
swings as well as heart palpitations/racing that goes along with it as well.
I started Effexor. I have only been on it 4 days but I have to say, I have
not had any hot flashes, maybe one very mild one, and it has curved my
appetite as well. I do feel better thus far but she states it will take 10-14
days
to get the full effect if it will work for me.
i just wanted to throw that info out to anyone who may benefit from it. Of
course, ask your doctor what will work best for you with your health. I am
hoping this medication give me some sort of relief. It is known as an
antidepressant so it will help stabilize sleep and mood as well. Sometimes I
think
those are a cause from the side effects of being menopausal with no hormones
in me.
Hope this helps-
Jennifer 35
CML 5/13/05
Gleevec 800mg
Wife and mother of 3 (11,8,6)
************************************** See what's free at http://www.aol.com.

Thank you for your note. My PCR was from my BMB at MDACC. It is the same
lab as all of my previous ones so the base lines and computations are
correct.. I have an appointment with my local oncologist to review the results
this
week.
I really appreciate you input and data. I will address this quickly, just
as you advise.
Matt
Florida
DX March 2005
************************************** See what's free at http://www.aol.com.

Hey Group. . .
CONGRATS Lisa! ! ! Now I know why you haven't been posting, . .ENJOY your
SURVIVAL ! ! !
Ora, I talked with my Bro and as always . . . I am in Xtra prayer for you guys
now. Had I known back in 2004, I, having no options. . . would've taken the
gold, I also took the Procrit; and now I have CAD and 2 stents. . .I AM A
SURVIVOR. . .I AIN'T FINISHED YET ! ! !
Each of us made the decision, and we are SURVIVING. I have added numerous
Chronic Diseases. . .I AM SURVIVING. We are the Pioneers for the Brother &
Sister Survivors to follow us, as Dorothy, Zavie, Nancy, etc., were for us
during the trials. They showed Gleevec did what it was researched and developed
to do.We are showing the 'side effects/outcomes' of Gleevec treatment. We are
statistics to them. . .and individuals in our battle of this disease. Many years
ago, I had a friend in elementary to high school who had a 'rare' form of
Leukemia. Thinking back, I believe she had our bug. She, like Skip; had a PCP
who involved self to patient's survival. . . Skip may have been better off than
having specialists (someone posted). Our Specialists are learning through us and
we are surviving longer through research and development. My school friend
survived from age 6 - mid 40s and like I will be. . .her Leukemia was secondary
to heart disease.
"Every day is a Gift from GOD" (my daughter gave me a cross with the
inscription in early 2004) and I embrace every day . . . from my morbid
diagnosis in 2003 to today. My children don't think of me as sick anymore. . .
and I don't either. (I have 20+ Chronic Illnesses).
I take all my meds and begin my day. Dang, I can't roller skate anymore
because I am afraid I will fracture another one of these dying bones 'hehe', no
more Ortho surgery's for me. I've gotten over my 'fear' of flying due to
terrorists and my 'fear' of these 'crazy' drivers (accidents being the initial
cause of my overall diseases). Whenever my son/anyone calls. . .my bags packed
and I go (where-ever/whenever). I am giving up my 'vanity' and beginning to use
the scooter I purchased over a year ago. The COPD, Heart, and fatigue from our
bug make its use necessary. After running track, now one flight of stairs to my
daughter's apartment is too much for me (I know she's glad 'hehehe'). Enough
babbling. . .
ALL are in my prayers. . .as always. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

I just found this on my computer and thought I'd send it along. Sounds
interesting, wish the doctors would approve it for us. Lynne A.
************************************** See what's free at http://www.aol.com.

Hi D,
Edema of the eye tissue is what you have and one remedy is lasix which is a
prescription drug. Ask your doctor. This is a very common side effect for
CMLers.
Best of luck,
Susan

I was wondering if any females have needed hormone replacement therapy since
being dx with CML. I saw a doctor today who doesn't want to put me on
anything because of my history with CML yet being 35 and post hysterectomy, I
suffer from every menopausal symptom. I was wondering if I started HRT maybe I
would feel alive again. I know my Gleevec contributes to my lack of most
things but I believe the menopausal stuff plays into things as well. I had a
complete hysterectomy at age 29.
Has anyone run across this? Does anyone know any studies? Any guidance
would be helpful. I do see my oncologist tomorrow morning and will ask the
question as well.
Thanks for any input.
Jennifer 35
CML 5/13/05
Gleevec 800mg
wife and mother of 3 (11,8,6).
************************************** See what's free at http://www.aol.com.

[I'm posting this again because my last email apparently didn't go through.
Another note I sent in response to Laura came through with her original
note, but not my reply! I agree with Tracey, there's something odd going on
here!]
Hi Matt,
Was your latest PCR from serum or marrow? Either way I recommend you get it
tested again right away. If the last one was from blood, I'd ask for a BMA
this time, with marrow exam and cytogenetics as well as PCR to look for
morphological and chromosomal changes. If the change is real, you should
also request mutation testing and a second opinion on changing to one of the
newer drugs.
I don't mean to alarm you, but if your latest PCR is real you have
experienced a 2 log increase in your CML load, which quite a lot more than
what one would expect from a dosage reduction alone. And in the unlikely
event that you are accelerating rather then just developing some minor
resistance to Gleevec, then time is of the essence.
Good luck,
Richard R

Hey Matt-
Wow, sorry to hear about the PCR resulsts. Quite an increase. I was just
considering lowering my Gleevec from 800mg to 600mg or 400mg just to have
better symptoms. If I might ask, what are your intolerabilities that you have
to
take the breaks for? Do you see improvements during the breaks? Are they
talking about switching drugs?
I have had good results with Gleevec although I feel like I cant function
through the side effects. I see my oncologist this next week as well as a
transplant doctor follow up appointment.
I guess my question is when is the right time to switch meds if you are
responding well but have such horrific side effects..........
What has the doctor recommended for you since the jump up?
Jennifer 35
CML 5/13/05
Gleevec 800mg
Wife and mother of 3 (11,8,6)
************************************** See what's free at http://www.aol.com.

Hi Jane,
As others have pointed out, Dr. Talpaz is one of the leading experts in
CML so you have nothing to worry about there.
I've never had any sedation with any of my bone marrow biopsies and
I've never had any issues with them either. I know some people have
horror stories to tell but mine have all been fine. It all depends on
the person doing it I guess. The worst of it is when they actually
draw the marrow out. If they pull too fast on the needle, it feels
like they're sucking the marrow up from the toes but it's all over in
30 seconds. I'd rather have 20 bone marrow biopsies than go through
another labour and delivery :)
Let us know how your appointment goes tomorrow,
Tracey
dx Jan 2002

Jane-
You have no worries with Dr. Talpaz. I have heard he is one of the best.
Definitely on top of CML.
From a patient who has had a bone marrow without sedation, I would NEVER
have one without it again. This of course was my opinion. I had a horrific
experience and would never consider it again. I swore I would never have
another one. I have since had 4 others, with mild sedation of valium and I
don't
even remember them. Of course, I switched doctors after the first one and now
see a specialist in Dr. Drukers office. (Dr. Mauro). I think it all depends
on the skill of the doctor but you will be in great hands with Dr. Talpaz.
The betterthe CML doctor, the better their technique for the biopsy.
Best wishes and think positive!
Hugs-
Jennifer 35
CML 5/13/05
Gleevec 800mg
Wife and mother of 3 (11,8,6)
************************************** See what's free at http://www.aol.com.

Jane,
I have not visited with Dr Talpaz, but I would say
from what I know, that he is one of the top CML
experts in the world and from what I have read from
Jerry Mayfield - a great guy too!
You cant pass the chance to be seen by somebody with
that dual set of credentials. I see Dr Drucker one
time a year and I feel and sleep better for it as
well. He is in the same small league with Dr Talpaz!
Good luck,
Chris

Hang in there Jennifer. I know your frustration. They just don't understand
what we go through.
:{
Alicia

Hello, I've been discovering all of these website for support for CML!
I may be a new diagnosis from some blood work my family doctor did, and
I'm going to see Dr. Moshe Talpaz at the University of Michigan
tomorrow. I'm reallly getting nervous, especially reading about a bone
marrow biopsy. Is Dr. Talpaz good at them or should I ask for someone
in particular? What does everyone think about requesting sedation?
I've been hearing good things about Dr. talpaz, but would love more
opinions about him or the University of Michigan?

This is quite promising Walt. I'm curious, how long have you had CML
and what has been your history with Gleevec? Did you PCR value
flatten out at some point?

Hi to all
I just received my most recent PCR from Johns Hopkins.
0.2 per 1000
This follows my second round in the vaccine trial which I completed in
March. This is the first time I have dropped below 1 per thousand and I believe
it
is comfortably better than three log. Now I hold my breath til the next and
hope the good news continues.
Walt Seldon
reply to waltseldon@...
************************************** See what's free at http://www.aol.com.

As I resumed scuba diving shortly after being in remission, 2 years
ago, and heart problems is an obvious contraindication to diving, I
have been insistent on this question with the various mds I saw. In
short they told me :
- It looks so far that the few people that got heart problems with
cml, with gleevec or other drugs, had previous heart conditions. They
referred to the nature article and other data but I have to admit I
don't recall the details.
- Fluid retention may also be an issue for people with pre-existing
heart conditions.
- As long as I feel well they see no special reason to stop diving,
just like every diver I have to stay in good enough shape to dive.
That was a MAJOR surprise after dx.
Marcos.

than 1% of people on Gleevec have developed it. My husband is one of the 1%. He
was on Gleevec for over 5 years when we heard the rumor that Gleevec can effect
the heart. His Oncologist ordered an Echo on his heart and my husband put it off
for weeks. When he went in for it, the hospital would not let him leave as his
heart was only working at 10-15% where a normal heart pumps at 50-60%. He was
flown to Spokane the next day and had a defibulator pace maker put in. He now
takes 10 different medications to treat the CHF and none to treat the CML. The
doctors can not pin it on the Gleevec, but have found no other risk factors to
cause CHF in this 46 year old basically healthy if it weren't for CML and CHF
man. In looking back, would we have taken the risk if we were starting treatment
for his CML today? YES! My only wish is that it was found sooner, so it could
have been treated before he
anything and at last check, was not getting any better. Be aware that Gleevec
can cause problems, look at all the other side effects Gleevec has, but most of
us decided it was worth it. There are also many drugs and other things that can
cause or contribute to CHF too. My recommendation is not to panic, but if you
are worried, get a base line (pain free test) and if you find yourself getting
more and more tired and winded by walking a short distance - then get
re-checked. Don't ignore it like we did for so many months thinking it was just
the side effect of the Gleevec. If caught early, I am sure both conditions can
be treated at the same time and severe CHF could be avoided.
just need to discuss the benefits vs side effects and find what is right for
you.

Congestive Heart Failure (CHF) due to Gleevec is very rare - reported at less
than 1% of people on Gleevec have developed it. My husband is one of the 1%.
He was on Gleevec for over 5 years when we heard the rumor that Gleevec can
effect the heart. His Oncologist ordered an Echo on his heart and my husband
put it off for weeks. When he went in for it, the hospital would not let him
leave as his heart was only working at 10-15% where a normal heart pumps at
50-60%. He was flown to Spokane the next day and had a defibulator pace maker
put in. He now takes 10 different medications to treat the CHF and none to
treat the CML. The doctors can not pin it on the Gleevec, but have found no
other risk factors to cause CHF in this 46 year old basically healthy if it
weren't for CML and CHF man. In looking back, would we have taken the risk if
we were starting treatment for his CML today? YES! My only wish is that it was
found sooner, so it could have been treated before he
heart was so weak. Right now his heart is too weak to treat the CML with
anything and at last check, was not getting any better. Be aware that Gleevec
can cause problems, look at all the other side effects Gleevec has, but most of
us decided it was worth it. There are also many drugs and other things that can
cause or contribute to CHF too. My recommendation is not to panic, but if you
are worried, get a base line (pain free test) and if you find yourself getting
more and more tired and winded by walking a short distance - then get
re-checked. Don't ignore it like we did for so many months thinking it was just
the side effect of the Gleevec. If caught early, I am sure both conditions can
be treated at the same time and severe CHF could be avoided.
All treatments for anything have risks and side effects. You and your doctor
just need to discuss the benefits vs side effects and find what is right for
you.
Ora
devoted wife of Scott for 26 years
Dx 06/00 Gleevec 06/01
CHF 10/06 - no Gleevec since
CML is back, but not detectible from a normal CBC test

Hi Anna,
I'm sorry to hear of your Dad's diagnosis. CMML is a different disease
than CML so I'm not that familliar with it but the Leukemia & Lymphoma
Society has some information about it here:
http://www.leukemia-lymphoma.org/all_mat_toc.adp?item_id=69974
If the link doesn't work, try this:
http://tinyurl.com/yvhbhv
If he hasn't responded to the approved treatments so far, you could ask
about clinical trials that he could try. Clinical trials are the way
to access new drugs without waiting for them to be approved.
Best wishes to you and your Dad,
Tracey

Lisa-
Thank you for your update. I needed that today. I have been having a pity
party and going through the uneasiness of what you described. So thank for
putting it all into perspective for me today.
Jennifer 35
CML 5/13/05
Gleevec 800mg
Wife and mother of 3 (11,8,6)
************************************** See what's free at http://www.aol.com.

Hi Everyone,

CONGRATULATIONS Lisa!!!!
That is fantastic news. You're a perfect example of how important it
is for a patient to be informed and empowered to make their treatment
decisions.
I hope you'll celebrate your survivorship with someone special
Tracey

************************************** See what's free at http://www.aol.com.

Hey Group FYI/my 2 cents only. . .
I am in the process of composing a "SS/SSI/SSDI" benefit email, comparable to
the "NEWBIE" email that I've been sending for several years.
Sister & Brother Survivors, I know your frustration; from late '90s to 2003, I
was denied and I truly believe that my age (being under 50) played more of a
factor than my numerous Chronic disabilities. I retired from my career of 20+ in
the city public school system, reared my children; and went back into the
workforce in the county public school system.
I was approved/deemed 100% disabled by the FED Governemt prior to my diagnosis
of CML. I'm sure that I wouldn't be approved per our bug; I went from
accelerated stage with 2-5 months morbid mortality at diagnosis to 0.00136 on
the RT-PCR Test.
Dr. Drucker's statement that CML is truly a Chronic disease, much like
diabetes; definitely doesn't qualify any of us for a Governmental stipend. Walk
into Wally World/Meijjers etc., and lil ole lady's/widow(er)s are working as
'greeters' to substidized their SS. I was told in the early 80s that I could
never work/standing on my feet. During the 80s-90s, I worked nights and weekends
in retail~~above minimum wage for the discount~~not the salary while my children
were growing up; spending my days as an at-home Mom; volunteering in their
schools. I had Ortho Surgery's and finally was taken off the floor--to the
ER--never to work there again; but denied SSDI. I shudder to think~~had I been a
single parent~~I wouldn't have been eligible for any state or federal
assistance. I was employable, therefore not eligible for welfare (my children &
I would've been homeless).
85% are denied SSDI at the initial filing, and CML alone isn't enough for an
approval. Fatigue, nausea, memory, etc., aren't reasons for approval. You need
an SS attorney and medical records of overall health. Sister Survivors who have
emailed me are the reason I am compiling this email and I will be sending it to
you ASAP. I have private/basic information to give you, that you haven't thought
about . . . especially not wanting to share your lump sum with an SS attorney
(hehehe). In the meantime, should you see me online. . .I am available. The SS
laws have changed since I was approved and any information I give is from my own
experience, others who have told me their experience and the SS attorney that I
worked for years ago. . . FYI/ my 2 cents only.
Take care, I have ALL in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

Hello All,
For those of you who have known me and to the new comers on the group, I
just wanted to share my new results with all of you.
PCR NEGATIVE! AGAIN!!!After Diagnosis in May 2000 I took Hydrea to get my
cbc's under control and then after a few weeks I started taking daily
injections of interferon + ARC 10 days a month. (Personally refusing the BMT
option as a first line of treatment) That was my daily regime for a little
over a year.
It kept my CML under control but had no affect on my positive status - no
cytogentic remission and no PCR remission. I was not legible for the gleevec
trials back then so I waited for the FDA approval of Gleevec and started on
400 mgs in June 2001. In August 2001 around 60 days or so after taking the
Gleevec I was in CCR & PCR.
Last year Genzyne Genetics, one of the best, if not the best laboratory in
the US, detected a small amount of positive cells but that was right after
they upgraded all of their equipment with the latest technology.
My ONC suggested that I should increase my dosage to 600 mgs and start
getting my biopsy every 90days again as he was concerned I may be
starting to show some resistance. I consulted with him and another ONC here
@ the Moffitt Cancer center in Tampa FL and suggested to them that It very
well may be that the newer equipment may have detected something it couldn't
before with the older equipment considering I still had a 4 log reduction
even with the slight positive cell detection. I opted to remain on 400 mgs
and monitor my PCR by peripheral blood test and the ONC @ Moffitt agreed,
although my regular ONC didn't (I think he has become a bit emotionally
attached after all these years with him and he was scared of me loosing my
remission and believe me I LOVE HIM TOO)
With my annual biopsy due in March I was a bit nerves about whether there
would be an increase because this last year has been a very challenging for
me personally. A-LOT OF STRESS
By the grace of God the results were negative - no cells detected!
Sometimes it seems like just yesterday that I felt that fear that all of us
feel during the initial diagnosis.
(Especially when I see a post from someone new) I wish I could just reach
out and hug them and let them know it's going to be ok.
I'll be 42 on Saturday and proud of it! I have become a grandmother 3 times
in the last 7 years.I can't even describe how wonderful that's been. For
those of you who have the pleasure of grandchildren- you know exactly what I
mean. Life hasn't been easy. And sometimes and can seem unfair; but it's
exactly as it's meant to be and I am ok with that. I trust that God knows
the plan.
I think back and wonder where I would have been had I not had these
wonderful people in these groups to share with and learn from.
Thank you all for your love, wisdom and support over the years!
Lisa Martinez

My dad was diagnosed with leukemia 2 years ago. He is now 73 yrs
old. They were finally able to determine that he has CMML. Right now
his chemo is not working. His spleen is enlarged and his white blood
cell count is high. He is having another bone marrow test done
today. I will be going with him to the doctor for his results. I've
read about CMML, but I don't have a clue what questions to ask the
doctor or what treatment we can pursue. Can anyone make some
suggestions?
Anna (A concerned daughter)

Hi Efrem,
Yes it's true. Grapefruit interferes with a variety of medications
and Gleevec is just one of them. The reason is because there is an
enzyme in grapefruit that gets processed through the liver.
In the case of Gleevec, the grapefruit will increase serum levels of
Gleevec making it unpredictable. This could cause your side effects
to increase or at the worse, it could cause Gleevec toxicity.
I'm not sure how much it would matter if you had one grapefruit, once
in a blue moon, but I certainly wouldn't make a habit out of eating
them.
Take care,
Tracey

I read that while on Gleevec one cannot eat grapefruits. Is this true?
If so, why or why not

Arta,
Please check with your own Dr. I think it always
makes sense to get a baseline of your heart's
performance.
As well, please be careful of such postings as they
can be marketing related. The best way for a new drug
to get customers is to cause Fear Uncertainty and
Doubt (FUD) in the incumbent drug. We dont want any
of that as the best way to live a long happy life with
CML is to make use of each line of therapy for as long
as it works for you. I see that has "maxmizing the
run way".
I have grown into a happy and "healthy" skeptic of
many things. One thing I am sure is that 99.999% of
the contributions made here on this chat board are
made for the common goal of helping and healing!
Love and Mercy!
Chris

http://www.pharmaceutical-business-review.com/article_feature.asp?guid=448181CE-\
FEC1-4A2F-8E88-B394B9BDDBF5

Hi Rosaura -- I'm convinced it is the Gleevec, and here's why: All of my
symptoms related to Gleevec happen in cycles and so does this scalp pain.
hang in there....
chris

Hi to all,
I was just wondering whether you have read this article and whether someone of
you has experienced any heart issues from Gleevec.
http://www.pharmaceutical-business-review.com/article_feature.asp?guid=448181CE-\
FEC1-4A2F-8E88-B394B9BDDBF5
All the best!
Arta
Dx: Jan/07
Gleevec 400 mg

Hi Barbara,
Sounds like we're thinking along the same lines --just different kind of
business. Freelance writing is really not a way to make a living. Unless
you're Dominick Dunne or another famous writer the pay is paltry. I wrote for a
group of community papers in Connecticut while I was there for over a year in a
clinical trial. 1500 words per article for $100 and I got one assignment per
month. I felt like I was paying them! If I can figure out other services to
ofer in addition to that then it would possibly be worthwhile.
Best of luck to you!
Susan L

Hello All,
A few of us have batted around our problems and fears about aging, SSDI and
making a living before poverty grabs us and drags us down into a pit that might
be permanent.
I think I mentioned that I have done everything to the best of my ability to
pull myself up and get my life revved up again. I've taken classes in computer
software, joined groups of other job seekers chaired by a career counselor. I
have also paid another career counselor for a private session. I've
participated in informational interviews with other professionals. And, of
course I've constantly and consistently sent out cover letters and resumes
usually listed online and in the newspaper. Now I'm volunteering in a large
organization where I meet lots of people who are known in Washington and who I
get a chance to work with in a very personal and mutually helpful manner. I
also get to use some of my best skills in committees, etc.
I now have on my desk eight job listings that I'll be applying to in the next
couple of days. I also get through the mail a brochure that I think all of you
can get, too. It's called First Class, Inc. It's an organization that offers
all kinds of classes. They're here in Washington but you can take classes
online for from $39 to $99 per class.
I'm planning to register for Writing and publishing for the publishing part, How
to Start Your Own Business, How to create a website and there are many, many
more. You can see what they have and who they are by going to
www.takeaclass.org. Btw, I get lots of solicitations from online universities
and have even interiewed for one. But it's all business unless you go to a
full-fledged university in your community. You probably won't get to be an
expert by taking a class from this group but it would get you started and
through practice and maybe researching a little further you can get started and
the positive boost could really make a huge difference in your life.
All the best,
Susan L

hi jennifer,
i know just what you mean going thru the same thing have been out
of work for 9 months. im 42 worked all my life now cant help surport my family
im upset with the system and myself just because i feel so helpless. our gas at
home just got shut off. ive tried every sourse for asstance i can think of but
having to wait for my court date for disability. this is even causing problems
with my wife and myself. hope you can get help soon if you hear of any programs
for other help please let me know.
have a
good day we all deserve it,
david willingham
dig.june 06

Hi Jennifer,
I read your post about all of your side effects.....I think you are getting
a bum deal with SS. Maybe the lady who's husband had acute leukemia can't
understand the difference and because her hubby got well, she cannot
understand your situation. You might need to involve an attorney if you
have not already done that.
Also, I do wonder why they do not have you try Sprycel???? if you had some
lung issues before, that might be the reason. I also go to OHSU, with Dr.
Druker.........and my opinion is that he is maybe more concerned about
quality of life than Dr. Mauro is???? I don't know if you could ever see
Dr. D just to get a 2nd opinion about his thoughts.....a new perspective. I
don't think you are on any trial....and I do know that some patients do
switch oncs there (some places that is a definite NO NO)........so you
might ask about seeing Dr. D just for a 2nd opinion about your situation.
You seem to have an extreme case of the skin issues..........skin, hair,
etc.......Gleevec is affecting these because of the c-kit involvement. I am
now on Sprycel, and it definitely seems like my skin is affected
less........no more fragile skin that I had with IM, don't sunburn so
easily, etc......even getting a little more color. Some people who go on
Sprycel feel much better on it.........and some don't (but it seems like
many do). So, I would ask why not try Sprycel???? and there should be a
good reason....just because you have a good response to IM, I don't think
that is a good enough reason by itself if your quality of life is so bad.
Nancy C.
PS to the group.....I am off for about 3 weeks, so if I don't respond to a
comment to me, that is the reason. Going to Santa Barbara for a visit with
family, etc.

Nice to hear from you Nancy even if the news is dreary. The exercize of looking
for work is not the only problem--it makes you FEEL incompetent, an outsider in
society and many more self confidence busters which makes everything worse.
Until fairly recently I had been able to work part-time temp jobs pretty
regularly but even those have dried up. They go through cycles. It's terrible
work, too because you're an outsider from the beginning and never there long
enough to get to know anyone. If I had been able to keep my Development
Director job for another year or so I would have a much better chance of getting
back into that profession. I haven't given up though. Volunteering with the
people I do in a very large organization plus temp jobs that possibly could
become permanent are always possibilities for a longer tenure.
Hope you're doing well. I do read your messages on Jerry's list in Sprycel
talk. We both have a lot to be thankful for.
Best,
Susan

Hi Susan L.,
Re: the job hunt.....I would not explain at all why you had a period of no
work...just say personal reasons (which could be helping a family member,
etc)........I don't think they have any way to determine that you have been
on disability.
In reading the AARP magazine, it says that most of what seniors are finding
as work opportunities are paying low wages, like entry level
positions....so I wish I had better ideas for you.
Good luck with your continued job hunting.
Nancy C.

Hi Chris,
I have been using Gleevec since July 2004, PCRU, and for the
last 2 weeks I have experience the pain on my scalp, exactly
the way you describe it. It is very sensitive, sometimes in
different areas of the scalp. Could it be Gleevec?
Rosaura
Dx July 2004
PCRU Oct 3004
Orlando, FL

Hi,
Is anyone else job hunting in an attempt to get off SSDI and make a living wage?
I've been consistently job hunting for three years in Washington, DC and
Northern Virginia and have had no luck at all. Instead I have had some luck
getting part-time temp work of various sorts to supplement my paltry disability
check. However, when I can't find a temp job my family has to chip in because
the monthly check is way under the poverty level. I've sent out hundreds of
resumes for fulltime work but to no avail. I send to jobs thaat really exist
from a few websites. Today, Monster.com sent out an article about how difficult
it is to find a job with a disability. They said that we are a large part of
the people in this country living in poverty.
Any ideas? Any comments or experiences? My chronological background is such
that the gap right after I was diagnosed is impossible to completely cover
unless I just plain lie. It's starting to look like a good idea. Also, I'm 61
and though I don't look really old I do look my age which is supposedly the "new
middle age."
Again, comments please?
Susan L

Hi Susan,
Good luck! It's the same in Houston. "Citizens With Disabilities" told me not
to lie.
(omit yes, lie no)
I applied for a job which I was overqualified for and was turned down because
I didn't fill out
an application, which was not given to me when I gave them my resume.
EEOC checked and said this was a usual way to get around hiring someone over
60 or
with disabilities, and there was nothing they could do.
Sorry I don't have better news.
Denice
Susan Loewenkamp <loewen1@...
Hi,
Is anyone else job hunting in an attempt to get off SSDI and make a living wage?
I've been consistently job hunting for three years in Washington, DC and
Northern Virginia and have had no luck at all. Instead I have had some luck
getting part-time temp work of various sorts to supplement my paltry disability
check. However, when I can't find a temp job my family has to chip in because
the monthly check is way under the poverty level. I've sent out hundreds of
resumes for fulltime work but to no avail. I send to jobs thaat really exist
from a few websites. Today, Monster.com sent out an article about how difficult
it is to find a job with a disability. They said that we are a large part of the
people in this country living in poverty.
Any ideas? Any comments or experiences? My chronological background is such that
the gap right after I was diagnosed is impossible to completely cover unless I
just plain lie. It's starting to look like a good idea. Also, I'm 61 and though
I don't look really old I do look my age which is supposedly the "new middle
age."
Again, comments please?
Susan L

Dear Jennifer
I have no words to help so am sending a big cyberhug.
Keep fighting, girl
<HUGS
Love and light
Annie
Steven's mom
www.livingwithcml.blogspot.com
or denial through disability. She stated to me that her
recommendation was going to be that I get a "sedentary" job. I re-
explained to her that, that is the job I just quit per my doctors
recommendation as I wasn't able to perform anymore and recurrently
being placed in the hospital. I lost it on the phone. I was
guess what upsets me the most is that I am entitled to this
disability insurance. I have paid into it and worked hard thus far
in my life and I know more people then I'd like to whom have got it
approved because of "back pain" alone or fatigue alone.
go into detail about from Gleevec to the point of "being
intolerable" to it by 3 Oncologists but since my body is responding
to the drug, I have been kept on it. I live with the sife effects
because I am "living." I need more years to get my 3 kids grown.
I am very frustrated and at a point where I don't know what to
do. I am sick of justifying myself and this disease to people. I
told here today that this isn't breast cancer where I take chemo for
6 months and get better and no longer need treatment. I have to
take this every day, rain or shine until I die. I get no recovery
period to bounce back. (I am NOT down playing what people have to
go through with breast cancer by any means) The pain and fatigue get
to be unbearable at times. I guess I am just frustrated and needed
to vent.
His fatigue got back to normal 2 years after he stopped his chemo.
I stated that, that was great and I am glad he is better but again
this is chronic leukemia and I will not stop the chemo and get that
break. The fatigue is daily......
looking through all this? No wonder people get denied. People that
really need it. She told me that "I must be doing fine since the
Doctor isn't referring me for a transplant. She doesn't understand
the disease.......... I will fight this.

Yes, I have experienced it from time to time. It is very painful to touch
the scalp.
Matt
Jacksonville, FL
************************************** See what's free at http://www.aol.com.

Nancy-
Yeah, I give my own and in my belly. I started off in the arm thinking that
would be better then my tubby but I was wrong. It stung bad! I hardly feel
it in my belly and as I said earlier all of my oncologist's I have seen have
recommended to keep using it. It has really helped me and hope others can
get some quality from it as well.
Jennifer
************************************** See what's free at http://www.aol.com.

Chris-
I have the same thing you described. I usually wear a ponytail cause I cant
stand my hair on my skin now but I have really bad days where it is very
tender even to touch. Pushing on my scalp its sensitive. I have also lost all
the pigmentation of my hair. Was strawberry blonde now platinum
White/blonde. Looks really weird and people ask me about it all the time since
it has
been going in without pigment in it. Its too long of a conversation so I just
tell them "thank you."
Its never been brought up by my doctors as a symptom but I know other CMLers
have talked about this before. Nope, you are not loosing your mind. I have
it too.
Jennifer 35
CML 5/13/05
Gleevec 800mg
Wife and mom to 3 (11,8,6)
************************************** See what's free at http://www.aol.com.

I guess my last email got lost in Internet land so here it goes again.
You are not going crazy. I now this topic has been talked about before and
I for one have the same exact complaints. Sometime the scalp hurts just to
touch it. I wear my hair in a ponytail most days as I cant stand the hair
touching my face. I have a lot of skin problems right now. Washing or
brushing
cant be very uncomfortable. Not always but some days are pretty bad.
I also have lost all the pigment in my hair from the Gleevec so my once
Strawberry beautiful hair is now platinum/white blonde. Looks kind of funny
since its growing in that way and my old "real" hair color on the bottom is
red.
I get a lot of questions about it and just tell people thank you as its too
long of a conversation to explain. I have also lost pigmentation to my face
where all my freckles are fading and my face is very pale (ghostly) as well
as all hair on my body including eye lashes and eyebrows are this depigmented
"white" blonde.
So, you are not losing your mind. Just one of the many weird symptoms we
come across as this Gleevec history goes on. :)
Jennifer 35
CML 5/13/05
Gleevec 800mg
Wife and mother of 3 (11,8,6)
************************************** See what's free at http://www.aol.com.

Hi Jennifer,
The docs at OHSU have no problem with Procrit. Dr. Druker followed all
patients on the injection for more than a year and saw no problems with it.
I know (think) you are a nurse? do you give yourself the shot in your
belly? I used to get them in my arm.....much more uncomfortable. Easy in
the belly, like a insulin shot.
Nancy C.

I just called to speak to the lady who is determining my approval or denial
through disability. She stated to me that her recommendation was going to be
that I get a "sedentary" job. I re-explained to her that, that is the job I
just quit per my doctors recommendation as I wasn't able to perform anymore
and recurrently being placed in the hospital. I lost it on the phone. I was
crying and trying to explain what I live with on a daily basis. I guess
what upsets me the most is that I am entitled to this disability insurance. I
have paid into it and worked hard thus far in my life and I know more people
then I'd like to whom have got it approved because of "back pain" alone or
fatigue alone.
I have every imaginable side effect thus some that I don't want to go into
detail about from Gleevec to the point of "being intolerable" to it by 3
Oncologists but since my body is responding to the drug, I have been kept on
it.
I live with the sife effects because I am "living." I need more years to get
my 3 kids grown. I am very frustrated and at a point where I don't know
what to do. I am sick of justifying myself and this disease to people. I told
here today that this isn't breast cancer where I take chemo for 6 months and
get better and no longer need treatment. I have to take this every day, rain
or shine until I die. I get no recovery period to bounce back. (I am NOT
down playing what people have to go through with breast cancer by any means)
The pain and fatigue get to be unbearable at times. I guess I am just
frustrated and needed to vent.
She told me her husband had acute leukemia and is now doing fine. His
fatigue got back to normal 2 years after he stopped his chemo. I stated that,
that was great and I am glad he is better but again this is chronic leukemia
and
I will not stop the chemo and get that break. The fatigue is daily......
I don't understand why they don't have people that know the disease looking
through all this? No wonder people get denied. People that really need it.
She told me that "I must be doing fine since the Doctor isn't referring me
for a transplant. She doesn't understand the disease.......... I will fight
this.
Sorry to vent but I do feel a little better now.... :)
Jennifer 35
CML 5/13/05
Gleevec 800mg
Wife and mother of 3 (11,8,6)
************************************** See what's free at http://www.aol.com.

Hey again-
I would just like to point out some points about that article. Increased
deaths, heart attacks, strokes and blot clots are also a warning to women on
birth control pills. They have to give the warnings to protect their drugs
The article does state that the increased deaths, heart attacks, strokes,
heart failure and increase blood clots are in dialysis patients which of
course have kidney failure.
The increased tumor growth in certain cancers are described as "neck and
neck" cancers.
Anyone going into major surgery as the article states is at risk of
developing a blood clot, not just people whom take Procrit. Again, if you've
ever
had orthopedic surgery it is one of the complications that they will tell you
about prior to surgery again, not just with Procrit.
I can't imagine that all my oncologist's I have seen over the past 2 years
as well as their nurses, etc would continue to let me use this drug if it was
that dangerous. Every drug has side effects and risk factors. Look at
Gleevec.
I guess I am just "for" Procrit as it has been a life saver for me over the
past year. I have got into some pretty good slumps of fatigue and weakness
bringing on increased shortness of breath due to the lack of red cells. I
really have had great luck with the drug and would hate someone to not get its
great benefits and improving your quality. I guess everyone is different and
you have to way your risk factors and speak with your doctor to make sure it
would be right for your medication regimen.
My 2 cents anyway. :)
Take care and keep healthy-
Hugs-
Jennifer 35
CML 5/13/05
Gleevec 800mg
Wife and mom to 3 (11,8,6)
************************************** See what's free at http://www.aol.com.

Hi
My onc does not want to give me Procrit, I am on
AMN107 (nilotinib) now and I have infusions of HGB
every three weeks or so. I have platelet infusions
about every week. The trouble with the HBG infusions
is that your ferritin builds up until you have to go
on desferal (see Desferal
--http://sickle.bwh.harvard.edu/dfsc.html) or a new
drug called Exjade put out by same company as Gleevec
and almost as expensive.
(http://www.exjade.com/index.jsp)Problem with Exjade
it that a lot of companies will not cover the expense.
I am lucky that mine will cover 80% but what is left
is real expensive for me. My HGB count as of
yesterday is 94,000 and I expect that I will need a
infusion sometime next week or so.. So as of now I
have to infuse myself every morning for 12 hours with
desferal, The above web site will explain how I do
that but it is bothersome and my poor belly is getting
pretty well black and blue..
Skipd
DX'ed 1978
see my diary of counts and infusions at
http://easyskip.tripod.com

I haven't posted in a long time. I have been very tired lately more
than normal so I got copies of my last bloodwork and my hemoglobin is
down to 10.9. I have always gotten Procrit in the past, but my ond. did
not suggest this time. I have more bloodwork done today and I will call
and get the results later. Does anyone know how you have to be to get
the shots before ins or Medicare will pay. I think I saw a blurb on the
news about the dangers of Procrit. I really like getting Procrit,
because I feel so much better. By the way all my other counts are good.
I am scheduled for an appointment at Moffitt Wednesday. I will be
getting a new Dr. then. I have been without a Dr. at Moffitt since July
of last year. That is a whole other story. I would appreciate feedback.
Peace and love to all,
Joan Porter
Jacksonville, Fl
dx'd 8/03
Gleevec 400mg.

HEY NEWBIES. . .
CONGRATS on becoming "0/Negative" ! ! !
Hey, Zavie. . .new "0" club members. . .I know there're over 1,000. We are
"SURVIVORS" ! ! !
ALL are in my prayers. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

I read the posts almost daily but very seldom post.
I have a quick question for the group.
Have any of you heard of the Xango Mangosteen Supplement and if you
have do any of you drink it?
Thanks
Donna, wife of Jim dxd 6/99

Have you read the magic bullet? Although, it is written a little bit liek a
puff peace bout Norvatis, I still found it interesting
Zavie miller <zmiller@...
by Robert L. Shook is an excellent read. It has
the best history and write up on the development of the drug Gleevec.
Zavie

The book "Miracle Medicines" by Robert L. Shook is an excellent read. It has
the best history and write up on the development of the drug Gleevec.
Zavie

Mona,
I think you misunderstood about green vegetables. They have Vitamin K, which
is an antidote for too much Warfarin/Coumadin. If you are on Coumadin, you are
supposed to avoid a lot of green vegetables and green, leafy salad.
Sue

Congratulations! I also just reached Hemotologic remission. Can anyone guide
us on the next step
addieoh <addieoh@...
Today at my appointment, they were at
5.4. My doctor told me I'm in hematologic remission! I can't believe
it happened this quickly! I was diagnosed a little over a month ago.
I'm so happy!

Last week my WBC count was 2.4. Today at my appointment, they were at
5.4. My doctor told me I'm in hematologic remission! I can't believe
it happened this quickly! I was diagnosed a little over a month ago.
I'm so happy!

I also had to go see an eye doctor to get examined. My left retna
was refracting light abnormally so they had to take pictures of it
to document it. (The pictures of my eye are seriously amazing. The
human body is amazing!)
I hope your appointment goes well!
Addie

Can I please give my friend's site on this group?
stefan

Someone posted about retina problems & "leaking." I saw my
ophthalmologist recently & she noticed changes in my retina
and mentioned the possiblility of leaking. She referred me
to a retina specialist & I have an appt. on April 25.
I'll report back after that.
Regards to All
Ruth Marcon

Hi Ruth,
You and both (I think I am remembering right) had the deep eye bleeds in
the vitreous, which is recognized as an uncommon Gleevec side effect. I
recently had a retinal tear, but my specialist assured me it had nothing to
do with the previous bleed.......and was most likely from a fall. I had
laser surgery on the spot for the tear.....not a fun procedure, but over
quickly!
Just thought I would mention this to you..........but no other problem,
like a leak, was found.
Nancy C.

Hi Mona,
I'm also on Warfarin and it also needs adjusting all the time. I'm cold all
the time.
I take Warfarin because of a mechanical aortic valve. They like the INR to
be between 2.5 and 3.5.
Zavie
Zavie Miller (age 68)
67 Shoreham Avenue
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Hi Everyone,
I find it very curious that we all have so many of the same side
effects. Feeling cold, fatigue, weight gain, depression, joint pain,
dry skin, puffy face, decreased sense of taste, thinning hair and
menstrual disorders. Coincidentally, these are all indicative of an
underactive thyroid.
A few years ago, many of us got our thyroids tested, thinking that
the Gleevec may cause our thyroids to malfunction but we all came
back with normal thyroid function.
I have never stopped wondering why so many of the Gleevec side
effects are so similar to hypothyroidism though. This has lead me to
wonder if Gleevec can cause some effect on our hypothalamus which
more or less regulates our thyroid but seeing as Gleevec doesn't
cross the blood brain barrier, it seems that this is relatively
impossible.
It's a real shame that no one (other than us), seems to care about
these effects as they obviously have an impact on our quality of
life, not to mention the unknown ramifications such side effects will
cause us in the long run.
Tracey
dx Jan 2002

Just wanted to add to the disability postings....
I filed on 3/2/07 and am waiting my answer. I should have it within 45
days. I am hoping that I will not have to appeal and fight for it but I am
mentally preparing for the battle. I didn't ask for this and its something
that
we are entitled too. I know too many people whom have milked the system with
far less and have received it. I am hoping that I will find the system to
be honest and give to people who deserve the help.
Time will tell. Hoping soon-
Jennifer 35
CML 5/13/05
Gleevec 800mg
Wife and mother of 3 (11,8,6)
************************************** See what's free at http://www.aol.com.

Hi, My oncologist told me that gleevec thins your blood, which in
turn can make you cold. I am also on warfarin(blood thinner) and
gleevec has been playing havoc on my blood counts, we have been
adjusting my warfarin all the time. Norvartis recommends no aspirin
or any other blood thinners unless absolutely needed. Also some foods
will also thin your blood, like brocolli and other greens.....Mona

Bravo, MSF!
I already wrote to you about a meeting I'm going to later this week of the ABA.
Sounds like I don't need to ask the question I thought I would. Anything you
want me to ask the new ABA president?
Cheers!
Susan

Honestly Tracey, I think they figure we're living so we should just be happy
about that. They don't care. I definately have had that impression from a few
doctors, nurses, disability people, etc. It's like...what are you complaining
about...so what if you're in the bathroom constantly or your food tastes like
tin...you're living what are you complaining for? Don't get me wrong...I'm very
very very happy to be alive and able to watch my son grow and become a young man
but that doesn't mean that I'm happy with my quality of life.
:}
Alicia

Hi All,
I've been on Glivec 800mg since December 2005 and doing very nicely indeed.
My Ph level is now down to 0.05% (from 201%).
Do any of you out there suffer from the cold since being on Glivec? I seem
to either too cold or too hot (not very often). My skin and body temperature
are fine but inwardly and my bones always feel cold.
Jackie (Geelong, Australia)

Hi Richard,
I've often thought that it could be Gleevec's effects on our
electrolytes that contributed to the cognitive side effects but what
frustrates me is that there doesn't seem to be any interest to pursue
this from the researchers. I haven't found even one article that
talks about any kind of cognitive side effects, yet we all know that
they exist.
Likewise, no one seems to be interested to study the effects that
Gleevec has on our hormones except for a few studies linking it to
gynecomastia in men. From all the complaints we've seen from women
complaining about missed periods, heavy periods, irregular periods,
and in my case, an abnormally high Prolactin level, it's obvious to
me that Gleevec has some effect on hormones but why don't any of the
researchers seem to care about this? Is it not reasonable to think
that such an effect on hormones could potentially put us at risk for
gynecological cancers or other problems? I just don't understand why
this isn't being looked at.
Take care,
Tracey

Dear CML Colleagues,
Thanks to all of you who wrote to encourage Novartis to drop their cases
against the Indian government. For those of you interested, here's an update
on the status of the two (rather arcane, I'm afraid) cases:
The final hearings for the case related to the Novartis challenge to
section 3d of the Indian Patent Act (which limits the grounds for
patenting of new formulations of known compounds) concluded on April 4,
2007 in the Chennai High Court. The decision of the court on the case is
pending and a date has not been set for when this will be handed down but
it may occur before they go to recess in May or if not then it will be in
June. This is the critical part of the case that MSF has been following.
Currently nearly 500,000 people have written to Novartis or signed a
petition calling on the company to drop the case. If the Novartis
challenge is rejected by the high court then we hope that the public
awareness and pressure that has been raised will lead the company to not
appeal the decision in the supreme court. In that case the public health
safeguards of the Indian patent act (section 3d) will remain intact.
The second case related to the challenge by Novartis of the patent offices
decision to reject an application on the new formulation of Imatinib
Mesylate has been handed to an intellectual property appellate body that
will now hear the case. This process has not begun.
Warm regards to all,
Richard R

In a message dated 4/15/2007 2:58:24 P.M. Eastern Daylight Time,
kidme2003@... writes:
I was told to qualify you had to be off work at least a year and one day.
Also was told I had a 5 month wait period. My disability started in Feb. so I
was told it would be proactive to the Feb. off date. I live in Atlanta and the
caseworker said the paperwork will be sent
I have not heard of this one year and a day. I applied while I was still
running my store, and it does take 6 mos. to get disability going. They never
said I had to be out of work for that time period, but I have learned that
over the years, Soc. Sec. changes criteria, so you must be up on the latest laws
and regulations.( Also, I asked if it could be retroactive from the date I
applied, but unfortunately the answer was no.)
For example, a friend of mine got SSDI after her dad died when she was 19
in the 1970s, and it lasted until she was 22. My two girls got SSDI only
until age 18 but now it is 2007, so they obviously changed the criteria.
It is important to find out from your local office if you can get a
counselor to one on one your case....don't just go by calling because I have
found
that some people employed by Soc. Sec. don't actually know what they are
talking about!! They could give you wrong information and that is fact. My
advice:
make an appointment with a person, go down to the office and get your case
filed. That way they have a face and you have personal contact, they cannot
go back on their word that way. - Lynne A.
************************************** See what's free at http://www.aol.com.

Hi Kathy,
I'm sorry you were denied the SSDI. I have tried in the past to
locate articles that showed the cognitive effects of Gleevec but like
you, I wasn't very successful. Everything I found was general
about "chemo brain". There wasn't anything specific to Gleevec.
To further the obstacle, there are numerous articles out there
showing that Gleevec can't pass the blood brain barrier so it's hard
to argue cognitive effects of a drug that doesn't even reach the
brain but we know from all the list members who complain of the exact
same side effects that this impairment is indeed real, even if we
can't find any articles to support it.
The cognitive effects and the hormonal effects that we see sooooo
many people complaining about, don't seem to get any attention by the
researchers at all which I find frustrating.
It's been a while since I've done a search though, so I'll try again
to see if I can find anything and I'll let you know. In the mean
time, I wish you luck with your case.
Take care,
Tracey

Kathy, I will be 62 in May and I also was turned down. I could apply for
early SS retirement, but it's a large difference in benefits and I can
qualify for Medicare in 24 months instead of waiting until I'm 66. I
consulted an attorney who encouraged me to handle my own appeal before
hiring him. He gave me an overview of what they were looking for plus
encouraged me to have my doctor write up something to go with the appeal.
When I got my records from the doctor, I realized that SS requests medical
records and instead of asking specific questions of the doctors, they ask
the doctor if there was any specific reason I could not work. My doctor did
not submit anything but a copy of the records. The attorney also says, the
2 things they're looking for is 1-have you been disabled 12 months or more;
2-is your life expectancy 12 months or less. He stated that people
reviewing the first application are not medical trained people and probably
know nothing about this cancer. He also stressed to use the whole word and
not CML. In my letter they referred to it as CNL, so I knew they had no idea
what kind of cancer this was. I was denied because it stated that my side
effects were controlled by my treatment and therefore I should be able to
work. In my appeal, I went into graphic description about all my side
affects. I stated also that the treatment caused the side effects therefore
causing the disability. I tried to give them an idea of my day that would
support the fact I could hold out to do a 8 hour a day job. I wrote a 1
page appeal and referred to it in the forms they require you to complete in
an appeal. I'm still working on a business that will allow me to schedule
work around my limitations and will gladly give up my disability check if I
make over the limit. I haven't received a response, but will keep you
posted. Let me know if you get additional advice.
Barbara Hundley
My Personal Assistant
Fayetteville, GA
Tel: 678-817-6805
Fax: 678-884-8186
<http://www.my-personal-assist.com
_____

Good morning,
I applied for SSDI due to cognitive impairment and fatigue, and I've
just been denied. I scored poorly on the cognitive testing, but
apparently not poorly enough to satisfy them.
I'm appalled by this. If SSDI is not for a 60 year old woman with
severe side effects due to Gleevec therapy for leukemia, who is it for?
I know that many of you have been approved for SSDI -- and some have
been approved due to these same side effects -- so I'm asking for
help. Any suggestions for my reconsideration phase of the the appeal?
Do any of you know of any data to support cognitive impairment from
gleevec therapy? I'm told SS likes data. I've found data re chemo
brain in general, but nothing specific to gleevec.
Thanks for any help/suggestions.
peace,
Kathy

Adrienne,
Chris in Florida here. That same thing happened to me. I am new here as
well, less than two months. My white counts went way low, and I posted here
and was told that was normal and sure enough, have come back up to 6.9 this
past week. In fact, this past week my CBC's were so close to normal that my Dr
said he may cut back my visits very soon to every two weeks. Wow, I never
thought I was going hear that! I have been battling low red and platelets for
weeks. Out of the blue, here comes the good counts. I too, had a lousy
visit three weeks ago. My wbc was still good, but my red had dropped, again.
He
starts talking more transfusions. That day he gave me a shot of Procrate
(spelling?) and things started to improve. I have had three shots, now.
Tracy is absolutely correct. Three weeks ago I had my worst visit where he
also states he now hears a heart murmur, where the fun end, is what I am
thinking. I was really down in the dumps and for the first time had the why
bother with all this feeling, briefly that is. But within a day was back to
myself.
Your faith will no doubt carry you through. This is the third really huge
event in my adult - married life that has rocked my world. The previous two
times I just looked at it as a test of my faith. I never - ever wavered, this
time I will not as well.
Take care and great luck getting back to school. I thought I would never be
so happy as to get back to work. Just know your friends will handle you
with kid gloves thinking you are fragile. I keep telling everyone to treat me
like normal.
Chris
************************************** See what's free at http://www.aol.com.

Hi Chris,
I just wanted to say that I'm glad things are settling down for you
now. The beginning is hard and it does take time to get used to life
with CML but eventually you do get used to it :)
Take care,
Tracey

Hi Adrienne,
It sounds like everything is going according to plan. It's very
common for white counts to "tank" at the beginning. It means the
Gleevec is working and on top of that, the Hydrea takes a while to
leave your system so even though you've stopped taking it, it will
still have an effect on your counts for a couple of days or even
weeks. It'll take a little while for healthy new cells to repopulate
your marrow but once they do, you'll see your numbers edge up closer
to normal.
We've all experienced the emotional roller coaster you're going
through. One day, you can be on top of the world and the next you're
full of doubts and fears. It's normal. I'm sure your faith will
give you tremendous strength through this.
You probably had some "cabin fever" going on as well since you were
sort of locked up for a few weeks. Getting back into a normal
routine will help you feel more normal I'm sure.
Take care,
Tracey

Hey everyone,
I can't believe I've had this for a little over a month now. It's
crazy. The past two weeks or so, my WBC count has been falling more
and more. When I got off of my hydroxyurea (I'm only 15! I can't
spell that!) my count was at 4.something. The next 4 appointments it
kept going lower and lower and lower. Monday it was at 1.4 I think.
So my doctor put me back on Gleevec (he had me on hold until we
stableized my counts). Today my count was at 2.5. So it's going up!
I go the official "ok" to go out in public! My school is on spring
break this week so I'm going to school on Monday. I'm so excited.
The only public place I've been to the past month is the
doctor's/hospital.
I've been having some breakdowns lately though. I guess it's
understandable though. I've been too busy being strong for everyone
that I didn't have time to be weak. I'm a religious girl and I
believe that whenever I shed a tear, God is with me to comfort me.
Even when I'm strong, He's where the strength is coming from. I
would never be able to do this without Him. So basically when I'm
weak, I'm actually strong I guess.
Sorry for my ranting. That actually helped a little bit though.

Hi everyone,
I have been reading your posts for several months now and take great
comfort in everything I read. My husband was diagnosed with CML in
August of 2006. He has been on 400 mg of Gleevec daily and was doing
great. His FISH level at diagnosis was 189, then in October 06 the
level was 124 then in December 06 it was 14. We were thrilled. Then
in Febuary 2007 his FISH was 22. The Dr. wanted the FISH repeated
which we did and today April 11th the FISH was 35. I can't tell you
how our hearts sank. Has anyone else encountered this? We are still
waiting for our PCR test to come back but have nothing to compare it
to as the DR. didn't order one initially. We are waiting for an
appointment at the Hospital of University of Pennsylvania to speak
with a transplant specialist for evaluation.
On top of everything my husband also takes anti-siezure medication for
epilepsy. (The summer of 2006 was not a good one for us) Does Keppra
interact with Gleevec? The Dr. says "No" but I would like to hear any
comments you all may have.
Sorry for the long message. My prayers are will all of you as well as
for my husband and family. Thank you for any information.
D

My mother also has epilepsy, she is taking NEUROTIN as it doesn`t interact with
gleevec, at the beginning she was taking TEGRETOL but this one does interact
with gleevec. so , it is important to see if his medicine interacts, in that
case he should change it to neurotin.
http://webs.ono.com/fotoretoque/

Hi all,
For those of you who don't know me, here's a quick
Recap: I was diagnosed with CML just over four years ago, started
with Gleevec 400 mg
and have been in cytogenesis remission for several
Years now. (PCRU as of February 2007)
For new comers, please hang in there and have face in Gleevec treatment.
I am hoping some of you can help out my daughter for her Graduate Honors
Research Thesis. After my daughter witnessed me going
Through CML treatments well as spending time in a Children's Cancer center, she
decided to be proactive and investigate the primary quality of life concerns
that children and families coping with Pediatric Cancer face as well as what
communities are doing to support these patients and families. Her primary
concern was the lack of resources that were available for Pediatric Cancer. To
help her collect information as to what communities could improve on for
support, she has developed an online survey that parents can participate in. As
this topic is related to
Pediatric cancer patients including CML, I am posting the link to the survey in
hopes that you may be able to provide information or insight.
The link for the Survey is as follows:
http://FreeOnlineSurveys.com/rendersurvey.asp?sid=uxb5nmzy1au5ga9287001
She is doing preliminary information
gathering right now, and would love to hear from you about this topic, if
you're
interested. Any
identifying information you can provide will be
kept confidential unless
you indicate otherwise.
She would love to hear him from you if you have any additional questions or
input. Please email her at: missdianat@...
Teresa
dxd 1/2003
400 mg Gleevec
PCRU 2/07 (finally)
Zero club #174

If you are interested in meeting other blood cancer patients, please
check out www.bloodcancersocialgroup.org. This group has been
started by a a fellow CMLer and a multiple myeloma patient. There's
contact & signup info, etc., at the site. I'm told it's still a work
in progress -- the site & the group -- but it's a good start. Next
get together is scheduled for May 20th.
peace,
Kathy
dx CML 5/03

Don't know if this was already mentioned: Last Sunday's
edition of the NY Times had 2 pages of cancer-related
articles. Date is April 1, 2007, pages 12 & 13.
All the articles are of interest. The one titled "The
Smart-Pill Solution" devotes a paragraph to Gleevec: "the
first smart anti-cancer pill."
Since I need a tutorial in how to send links you're on your
own...
Best regards,
Ruth

Hi Ruth,
Here is the url followed by the text.
Zavie
http://www.nytimes.com/2007/04/01/opinion/01nathan.html?th&emc=th
Op-Ed Contributor
The Smart-Pill Solution
E-MailPrint Save Share
DiggFacebookNewsvinePermalink
By DAVID G. NATHAN
Published: April 1, 2007
Boston
OUR sympathy for Elizabeth Edwards and Tony Snow is understandably shadowed
by worry and frustration. Will they be saved, and will our own loved ones be
saved as well? Since 1971, when President Nixon declared war on cancer, the
budget of the National Cancer Institute has increased to $4.8 billion from
half a billion, and private donations have likewise increased. Why don't we
have more to show for this generous effort?
The simplest answer is that it has taken us this long to begin to decipher
the genetic mutations involved in cancer. Until we could see how changes in
DNA actually drive the disease, we could do nothing to interfere with it
beyond surgery, radiation therapy and standard chemotherapy. But in recent
years we have created and begun to apply so-called targeted-therapy drugs.
And though progress is slow, it is fair to say that we have finally turned
an important corner.
For most of the past half-century, medical treatment of invasive tumors like
those of the breast and colon has relied mainly on drugs, radiation or both,
in effect carpet-bombing the DNA of cancer cells. This highly toxic
treatment is effective in many cases, but it does not address the root
causes of cancer.
Fortunately, the revolution in genetics of the past 30 years has taught us
how cancer results from defects in DNA repair that arise when certain genes
are damaged by solar radiation, tobacco smoke and the chemical products of
intestinal bacteria and cell metabolism. Cancer cell genes depend on only a
very small number of mutated genes to ensure their own survival. These are
typically the genes responsible for repairing other genes and for
controlling growth and death. Our challenge is to outsmart the cancer by
determining which genes are keeping the cancer going, and to design drugs
that can inhibit them.
The first such "smart" agent to see action in patients has been trastuzumab,
better known as Herceptin, which is not a drug in the strict sense but
rather a large protein, an antibody that binds to a growth-controlling
protein found in about 20 percent of patients with a highly aggressive form
of breast cancer. When it is administered with standard chemotherapy and
radiation, Herceptin ties up the protein, and thus markedly improves the
survival of such patients.
Gleevec (imatinib), the first smart anticancer pill, inhibits a protein
produced by a single gene that is key to the growth of a form of leukemia.
Even more remarkable has been Gleevec's effect on an intractable bowel
cancer known as gastrointestinal stromal tumor, a ravaging tumor derived
from nerve cells in the bowel wall. In its early stages, this cancer is
driven by a single gene and its protein, and it can be inhibited overnight
by a single dose of Gleevec. A substantial number of patients who have
received this drug have remained in remission for years.
There are now at least 100 such smart antibodies and drugs in practice,
clinical trials or development. Among them are Iressa (gefitinid) and
Tarceva (erlotinib), which are effective in treating about 10 percent of
lung cancers, those that are initiated by a specific mutation in a
growth-controlling gene. But we need many more, because cancer cells are
wily foes that readily develop further mutations to help them evade such
drugs. Also, because cancer cells are genetically unstable and vary slightly
from one to the next, it is difficult for a single drug attacking a single
protein to do the whole job. We need multiple smart drugs, and creating them
will take time.
Patients, organizations that finance research and the public want faster
progress. So do cancer researchers and clinicians. We are trying, and we are
succeeding. The pace is slow because the problem is difficult, but we will
get there.
David G. Nathan, the president emeritus of the Dana Farber Cancer Institute,
is the author of "The Cancer Treatment Revolution."

AMY,
I'm so verry happy for you. Please keep us updated on your progress. You'll be
in my thoughts.
Alicia
[aimesc31@...] wrote:
Hey everyone, just wanted to update you all. I'm doing great. I'm 8
weeks along today, only 32 more of them to go. WBC counts are holding
at 8 I'm 5 weeks off Gleevec. I have to admit I am a bit nervous about
not taking the meds, but I know it is for a good reason. MDACC will
not be doing any PCRs or BMA until after delivery, there reasoning is
that they won't treat it anyway. So I'll be monitoring my WBCs and
Platelets and that we will treat with Hydrea<sp
say. (thought the Gleevec made you tired? Get pregnant, you'll beg to
be back on Gleevec, <smile
looks as good as it can right now. Keep us in your prayers and you are
all always in mine. Praying for a Thanksgiving baby! WOOHOO.
Love you all,
Amy B.

Dear Susan,
Thank you so much for your input. Most patients don't have these choices
when they are looking for a CML specialist in their area. I remember Carol
Miller from the early STI571 days. Her location was a trial option for me.
It looks like you have a winner with Dr. Rapaport. I will add him to my
list. When our group gets together we always compare how well the doctors do
the BMBs.
Zavie
Zavie Miller (age 68)
67 Shoreham Avenue
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Hi.
We all have our own experiences with docs and sometimes there's really no good
answer for it but this is what I've experienced:
Bruce Cheson at Georgetown gave me the most painful BMB with lasting effects for
weeks when I was trying to get into the Sprycel trial. I know he is well known
and generally well-regarded so this may be an anomaly. But, after 3 BMBs with
greatly differing results over a two-month period he did not let me into the
trial. A week later I got into the trial at the University of Maryland where
the BMB results were clear and I had gone from cytogenetic zero to 17 positive
cells in my marrow and the PCR and FISH results were high, too. Now, a few
months later I am zero cyto, zero FISH and 0.0003 PCR. Dr. Aaron Rapaport at
the Greenebaum Cancer Center in Baltimore at the University of Maryland is my
doctor. He's a CML specialist with a full staff and is not only highly
competent but kind as well.
I also have gone to Dr. Victor Priego in Bethesda at the Blood Disorder and
Cancer Center. He's not a CML specialist but knows a LOT and is guided by a doc
at MDACC in Houston. It was Dr. Priego who did a FISH test and found that it
was 4% instead of zero and sounded the alarm that I must get into the dasatinib
trial. He helped as much as possible and is worth seeing.
Also, Dr, Carol Miller was part of the early days of Gleevec and believes in it
to a fault. I saw her for about a year and she was so confident that my counts
were steady and the meds were working that she didn't see me for three months
even for a CBC. When I went in for my three month appointment my counts were so
low that I was immediately hospitalized and given a two-bag transfusion. That's
when I found Dr. Priego. However, she does indeed have an excellent reputation.
I am not trying to badmouth any of these doctors but as unusual as my
experiences might have been there have been two cases when my life was literally
in jeopardy.
Now I know much more and am a better patient than I used to be so I would never
let a doc wait three months for a CBC! And I wouldn't go back to a doctor for a
second and third BMB when the results were so questionable the first time around
which could have simply been bad lab work.
But, those are my experiences for what the information may be worth to anyone.
Susan L

Hey everyone, just wanted to update you all. I'm doing great. I'm 8
weeks along today, only 32 more of them to go. WBC counts are holding
at 8 I'm 5 weeks off Gleevec. I have to admit I am a bit nervous about
not taking the meds, but I know it is for a good reason. MDACC will
not be doing any PCRs or BMA until after delivery, there reasoning is
that they won't treat it anyway. So I'll be monitoring my WBCs and
Platelets and that we will treat with Hydrea<sp
say. (thought the Gleevec made you tired? Get pregnant, you'll beg to
be back on Gleevec, <smile
looks as good as it can right now. Keep us in your prayers and you are
all always in mine. Praying for a Thanksgiving baby! WOOHOO.
Love you all,
Amy B.