Re: Gleevec side effects article

[Guest guest]

Hi Barbara: That was interesting what you wrote. I can only share my

experience with all the things that you mentioned. Before I went on Gleevec I

was initially on the old treatment of Interferon shots with Ara-C shots, and

that started to destroy my liver. Once I went on the Gleevec my liver funtions

all became normal again.

My kidney function was off, and they found I had a Parathyroid Hormone

problem, but also I have never been good at getting my fluids in me. My kidney

functions were off before Gleevec, and now that I am drinking my water or green

tea etc. my kidney functions have become normal.

I was diagnosed with Diverticulosis, but they attributed it to not enough

fiber in my diet. That will cause constipation, and then that puts pressure on

the walls of the intestines. I have Arthritis of my spine and neck, and I have

had that for many years before my diagnosis of CML.

I think its very hard to determine what and what not the Gleevec is doing to

our bodies. I get terrible joint pain, and I stop and ask myself if its the

Gleevec or my Arthritis.

My primary doctor refers me back to my Oncologist when its related to my CML,

and I have had the same Oncologist since my diagnosis in 1998. It would be good

if others could share their experience with some of these issues.

I am just sharing what has happened to me, but I am not giving anyone advice.

It can be confusing as to what way to go.

>

> Someone shared an article that talked about problems with developing

diverticulosis and some type of hip joint deteriation. 

>  

> I have developed both in the last 4 months as well as having problems with

liver, kidney function and digestive problems which put me in the hospital while

visiting TX.  My primary physician has taken me off my Gleevec in September as

they say my system has become too toxic and needs a break.  My cancer doctor

always refers me to my primary to treat side effect problems, but does not

believe in breaks from the meds.  My wbc has been normal since 3 weeks after

starting meds July 2006 and my last 3 PCR test have shown no detection of PH??

cells. My primary physician said at the rate I was going, the Gleevec was doing

me more harm than benefit.

>  

> I really think my diverticulosis and hip pain is a result of the Gleevec, but

wanted to find the medical articles that addressed these 2 side effect issues. 

I have had more frequent infections in the past 12 months than ever and she

really believes it is being caused by the Gleevec and I tend to agree because I

know my body.  We'll see what the colonyscopy shows and how my wbc reacts before

I will consider going back on Gleevec. My blood count has been normal since

stopping the Gleevec.  I believe my quality of life is more important and I will

have to be my own advocate.

>  

> Anyone that can share the article to show the Doctors I would appreciate it.

>  

> Take care and thanks for your help.

>

>

> Barbara Hundley

> Certified Senior Advisor

> Daily Money Manager

> Hundley & Associates, LLC

> dba My Personal Assistant

> Fayetteville, GA

> http://my-personal-assist.com

>

>

>

>

>

[Guest guest]

Hi Barbara,

It is time for you or your doctor to consult with one of the CML

specialists. Your doctor says that he does not believe in breaks from

Gleevec. I really don't care about his beliefs are, but when it comes to

treating CML there are situations where breaks are the proper treatment. The

CML specialists have the experience and expertise to deal with your

situation. It might even mean changing medication.

Have the side effects diminished since you have stopped the Gleevec? I

don't recall any studies that say that Gleevec causes more frequent

infections.

I would try and see Dr. Druker at OHSU. His philosophy is that a patient's

quality of life is more important than a deeper level of remission with the

drugs.

Zavie

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

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

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

Barbara Hundley

Sent: October 29, 2009 5:21 PM

Subject: [ ] Gleevec side effects article

Someone shared an article that talked about problems with developing

diverticulosis and some type of hip joint deteriation.

I have developed both in the last 4 months as well as having problems with

liver, kidney function and digestive problems which put me in the hospital

while visiting TX. My primary physician has taken me off my Gleevec in

September as they say my system has become too toxic and needs a break. My

cancer doctor always refers me to my primary to treat side effect problems,

but does not believe in breaks from the meds. My wbc has been normal since

3 weeks after starting meds July 2006 and my last 3 PCR test have shown no

detection of PH?? cells. My primary physician said at the rate I was going,

the Gleevec was doing me more harm than benefit.

I really think my diverticulosis and hip pain is a result of the Gleevec,

but wanted to find the medical articles that addressed these 2 side effect

issues. I have had more frequent infections in the past 12 months than ever

and she really believes it is being caused by the Gleevec and I tend to

agree because I know my body. We'll see what the colonyscopy shows and how

my wbc reacts before I will consider going back on Gleevec. My blood count

has been normal since stopping the Gleevec. I believe my quality of life is

more important and I will have to be my own advocate.

Anyone that can share the article to show the Doctors I would appreciate it.

Take care and thanks for your help.

Barbara Hundley

Certified Senior Advisor

Daily Money Manager

Hundley & Associates, LLC

dba My Personal Assistant

Fayetteville, GA

http://my-personal- <http://my-personal-assist.com> assist.com

[Guest guest]

 

> I have developed both in the last 4 months as well as having problems with

liver, kidney function and digestive problems which put me in the hospital while

visiting TX.  My primary physician has taken me off my Gleevec in September as

they say my system has become too toxic and needs a break.  My cancer doctor

always refers me to my primary to treat side effect problems, but does not

believe in breaks from the meds.  My wbc has been normal since 3 weeks after

starting meds July 2006 and my last 3 PCR test have shown no detection of PH??

cells. My primary physician said at the rate I was going, the Gleevec was doing

me more harm than benefit.

____________________

Hi Barbara,

You don't say what your Gleevec dose is but some people end up with a much

higher level of the drug in their blood stream because they do not metabolize

the drug as well. This can be checked with a special blood test and might be a

starting place for you...except now you are off the drug. There is also the

option of using a different drug...many with multiple problems have reported

that Sprycel is much easier for them to take. Your 2 doctors do need to work

with each other.

Cogan

[Guest guest]

Don't mean to but this is long but I need to share:

I agree about the doctors, but I've really stuck with my oncologist these past 3

years because I was having no problems(or so I thought) and knew my primary

would be watching my back. Besides I had my 80+ year old mother that I was

caretaker for as well as my 80+ year old Dad that was in a home for Alzheimer's

patients, so I just tolerated feeling bad and tired all of the time. My plate

was just too full.

I was a little concerned that the oncologist didn't take much interest in my

side effect complaints as I just assumed it was the price I had to pay for my

CML treatment. I had once written Dr. Druker with a question and she seemed

very insulted when I showed her his reply. As long as my blood work was showing

no change I just decided to leave things as they were. I'd sleep when I could

and basically never felt much like doing anything more than necessary.

Dad passed in 07 and Mom passed in 09 and then I guess I started to pay

attention to my body again. I knew some of my problems were from the Gleevec

and stress on my system, which were confirmed by the blood work done by my

primary. I had my hip (started hurting a year ago) looked at by Otho. specialist

but we were looking for any hairline fractors (the reason I'm looking for the

article) the middle of Sept I had fever, horrible pain in the middle of my

stomach and thought I had a bladder infection and the flu. My primary dr looked

at my specimen(protein/blood/white cells) and blood work(count over 18K) and

says " you are going to hospital " because your system is so toxic it needs to be

flushed. You have to come off Gleevec until we can get your body calmed down " .

She keeps up with all she reads on Gleevec and had discussed it several times.

I had a worse case of this to happen again 3 weeks later while in Texas (12

hours of pain and vomiting) and was hospitalized. They wanted to do surgery

because of a ruptured diviticula, but instead let me ride 1000 miles back home

to GA while passing blood for 4 days???? Went to see the gastrologist last week

and both he and my primary says something is not right. Have a test Monday for

colonoscopy to see what is really going on.

I have felt better in the last 6 weeks than I've felt in 5 years and I don't

want to give that up yet. I do plan on getting a second opinion and would love

to see Dr. Druker, but really do hate the idea of having to fly from GA to OR.

I have to admit my PA was so great with the BMB I hate the thought of having

another one with someone else, but I need an expert to see if I need to go on

the next generation of drugs and when!! On Gleevec, I wasn't really in pain,

but I wasn't living either so what's the point?

I am a true believer that God will take me when I've done all I " m suppose to do

anyway, even with the choices of meds and doctors.

Now that I'm feeling so great - I intend to take a more involved approach to my

CML and find someone that specializes in CML. Guess that means I'm going to OR.

I have continued to receive my order of Gleevec since I pay $1000 first of year

and then on my plan it is free for the rest of the year. If I don't go back on

it, I would like to find someone that is having trouble paying for their rx or

has no insurance and cannot take it regulary.

Anyway - need the article - want to educate the other specialist as I go along

and giving some serious thoughts to fly out to OR. As of now - loving the new

found energy and love of life and watching my blood counts every 3 or 4 weeks

for any changes. Looking forward to the results of my colonoscopy and the

doctor's opinion on Gleevec's contribution to my problem.

Love this group - it's so nice to talk to someone that understands what I'm

feeling!!!!!!

>

> Hi Barbara,

>

> It is time for you or your doctor to consult with one of the CML

> specialists. Your doctor says that he does not believe in breaks from

> Gleevec. I really don't care about his beliefs are, but when it comes to

> treating CML there are situations where breaks are the proper treatment. The

> CML specialists have the experience and expertise to deal with your

> situation. It might even mean changing medication.

>

> Have the side effects diminished since you have stopped the Gleevec? I

> don't recall any studies that say that Gleevec causes more frequent

> infections.

>

> I would try and see Dr. Druker at OHSU. His philosophy is that a patient's

> quality of life is more important than a deeper level of remission with the

> drugs.

>

> Zavie

>

>

> Zavie (age 71)

> 67 Shoreham Avenue

> Ottawa, Canada, K2G 3X3

> 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

> 3.6 log reduction Apr/08

> 3.6 log reduction Sep/08

> 3.7 log reduction Jan/09

> 3.8 log reduction May/09

> 3.8 log reduction Aug/09

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 613-482-4801

> Cell: 613-282-0204

> ID: zaviem

>

> _____

>

> From: [mailto: ] On Behalf Of

> Barbara Hundley

> Sent: October 29, 2009 5:21 PM

>

> Subject: [ ] Gleevec side effects article

>

>

> Someone shared an article that talked about problems with developing

> diverticulosis and some type of hip joint deteriation.

>

> I have developed both in the last 4 months as well as having problems with

> liver, kidney function and digestive problems which put me in the hospital

> while visiting TX. My primary physician has taken me off my Gleevec in

> September as they say my system has become too toxic and needs a break. My

> cancer doctor always refers me to my primary to treat side effect problems,

> but does not believe in breaks from the meds. My wbc has been normal since

> 3 weeks after starting meds July 2006 and my last 3 PCR test have shown no

> detection of PH?? cells. My primary physician said at the rate I was going,

> the Gleevec was doing me more harm than benefit.

>

> I really think my diverticulosis and hip pain is a result of the Gleevec,

> but wanted to find the medical articles that addressed these 2 side effect

> issues. I have had more frequent infections in the past 12 months than ever

> and she really believes it is being caused by the Gleevec and I tend to

> agree because I know my body. We'll see what the colonyscopy shows and how

> my wbc reacts before I will consider going back on Gleevec. My blood count

> has been normal since stopping the Gleevec. I believe my quality of life is

> more important and I will have to be my own advocate.

>

> Anyone that can share the article to show the Doctors I would appreciate it.

>

> Take care and thanks for your help.

>

> Barbara Hundley

> Certified Senior Advisor

> Daily Money Manager

> Hundley & Associates, LLC

> dba My Personal Assistant

> Fayetteville, GA

> http://my-personal- <http://my-personal-assist.com> assist.com

>

>

[Guest guest]

>

I do plan on getting a second opinion and would love to see Dr. Druker, but

really do hate the idea of having to fly from GA to OR.

> I have to admit my PA was so great with the BMB I hate the thought of having

another one with someone else, but I need an expert to see if I need to go on

the next generation of drugs and when!!

----------------------------

Hi Barbara,

Dr. Druker is an excellent person to see (or any of the leukemia doctors at

OHSU) and he does great bmbs.............

but there are also other cml specialists that people travel to see, including

Dr. Moshe Talpaz at the Uni. of Michigan, in Ann Arbor, Michigan.....if that

seems like less of a distance to cover. These two are probably the top 2 cml

specialists that people are traveling to see these days....but there are

probably some others as well.

C.