Re: Assistance needed please

September 4, 2008

Sharon,

I have been on Gleevec since 1999-one of the original trials. I was on

interferon and other medicines before I could get into a Gleevec trial. I

started on 600 mg a day and the decreases in PCR were very, very slow. My

doctor tried to increase my dosage to 800 mg a day, but my blood counts

dropped immediately so low that they backed up to 600. I took 600 mg a day

from 1999 (December) until 2007 (December). It took me 5 years to reach CCR

and last December my PCR was <.01 and my dosage was decreased to 400 mg a

day. I don't know if I'll be able to stay on the lower dosage, but I know

that I feel much better. The diarrhea is common. The doctors told me to

take Imodium, but I felt like my body needed to get rid of the medicine and

I didn't take the Imodium. I know that originally there were people in the

trials on higher doses that had to stop the medicine for periods of time to

allow their blood counts to recover and it never seemed that the CML changed

much, but since you haven't been on the medicine for long, I don't know what

a two week break will do for you. Have you talked to your doctor about

this? You didn't mention your age. The doctors put me on birth control

pills to control excess bleeding from my periods until I finally didn't need

them any longer. They believed the problems were Gleevec related. I still

have occasional diarrhea and lots of gas. Wish I could help more. Feel

free to ask any questions.

Gay Bratton

Dx 1998, Gleevec 1999

[ ] Assistance needed please

Hello,

I was Dx May 29,08.I have been on Gleevec.100 mg tablets four

times daily.I need the small pills as I can't swallow pills.I have

had Gastric bypass and a lapband.I have gotten my lab ranges back

down to normal while on the 400 mg dose.My first and only BMB at 2.5

months after DX showed no real change just the hematalogical

change.My Dr. wanted to increase my gleevec to 600 mg daily in the

100 mg pills but my insurance is denying it.I live on S.S of about

800.00 a month and can not afford to buy my meds.I thought I could

call Novartis tomorrow and see if I can qualify for the assistance

program.When my Dr told me to increase the pills I did and waited for

approval from insurance which was later denied.I will run out of

pills before I can refill my pills on the 1st Oct.Any ideas? No

samples at my Drs office.I will be off all meds for 2.5 weeks.What

damage can I look for from being off my meds like this abruptly and

all? I also have had Diahrea every day since increasing the Gleevec

and painful crampy gas pains and really loud stomach noises.

I am scheduled for a tubal and endometrial ablation on friday to

help with the constant bleeding(unknown if related to CML or gleevec)

I tend to suffer from Anemia due to WLS so I can not keep bleeding

daily for months on end. Is there any concerns with having this

procedure now that I have CML? Do I need to be concerned about my

recovery or anything else I should know or ask?

Thanks for all the help.

SharonS

September 4, 2008

Hi Sharon,

I really sympathise with you....it sounds as if you need to get a second

opinion IMO. As one who has had woeful side effects with Glivec, perhaps you

need to talk to your Dr re trying another drug.

Just to go through your issues:

Q. No samples at my Drs office. I will be off all meds for 2.5 weeks.

What damage can I look for from being off my meds like this abruptly and

all?

A. I was the stop start Queen, having many breaks from Glivec. The real

issue is that if you are not responding to the drug, then really stopping is

not going to be an issue. The worry is that you DO need to be on a drug that

is working and bringing your levels down, although it seems you have reached

haematological response. In Oz we only have BMB at diagnosis, then under our

Medicare funding for CML drugs do not have to have another one fortunately

as they rely totally on our PCR levels.

Q. I also have had Diahrea every day since increasing the Gleevec and

painful crampy gas pains and really loud stomach noises.

A. A side effect of Glivec can be your symptoms as described - if the

diarrhoea is not under control you would have to rationalize that you are

not getting enough of the drug to be effective and by increasing the dose,

still may not. Have you tried immodium? I had a terrible time taking Glivec

unless I had it with a decent meal and took it half way through - I would

never have tolerated it with only a small amount of food. With the WLS - is

it possible to reverse this a little to assist you in the long term? What

does your haem/t say about it?

Q. I am scheduled for a tubal and endometrial ablation on friday to help

with the constant bleeding(unknown if related to CML or gleevec) I tend to

suffer from Anemia due to WLS so I can not keep bleeding daily for months on

end. Is there any concerns with having this procedure now that I have CML?

Do I need to be concerned about my recovery or anything else I should know

or ask?

A. Any surgery and recovery time could be a problem if you are anaemic -

hopefully your surgeon is up to date on your medical history and is happy to

go ahead with this. I had a hospital admission 5 years ago for investigation

of anaemia and V & D and required a blood transfusion before having a

colonoscopy and gastroscopy to discover that I had inflammatory bowel

disease and ultimately later a hysterectomy for chronic severe heavy

periods. The anaesthetist said I was an anaesthetic risk due to the anaemia

(it was 70) and an irregular heart beat. So check with your medico's re your

current blood levels - especially haemaglobin and platelets. I would think

as long as your haem/t is happy and the surgeon/anaethetist have a good

understanding then all should be well - I presume it is day surgery?

Unfortunately it would appear that Glivec does not really like us ladies and

creates havoc with our hormones. It is a wonderful drug and has been a

lifesaver for so many, but as I said above, perhaps it is not the drug for

you and either Sprycel or Tasigna would be a better choice.

With help with funding your meds - I am so sorry you have to go through this

and I thank my lucky stars in Oz that we have access to all our meds

relatively cheap through our Medicare system and not at an insurance

company's whimsy. I hope someone else can assist you with this Sharon, it is

terrible for you on top of everything else. I don't think there would be

anyone on the list with a good enough income to afford the full cost of our

drugs!

Please let us know how you get on and that we are thinking of you.

Regards,

from Downunder

From: [mailto: ] On Behalf Of

serenitywon

Sent: Thursday, 4 September 2008 2:50 PM

Subject: [ ] Assistance needed please