RE: [CML] intro

Tue, 18 Jan 2005 16:57:24 -0800

YAHOOO!!! YIPPEEE!!!
Number 804 in the Zero Club
Zavie
-----Original Message-----
From: Jim Carlson [mailto:[EMAIL PROTECTED]
Sent: January 18, 2005 7:40 PM
To: [email protected]
Subject: [CML] intro

Hi all,

 

Ive been reading the posts the last few weeks since Ive joined this group.

 

Thanks to Mark & Cheryl for a great job on ASH.

 

The knowledge and support on this site is fantastic to those of us needing either or both.

 

I was -

 

Dx 9/16/02  WBC 311,000  (at urgent care for a slight fever for 4 days  8 months to the day since a successful 3 way heart bypass operation)

 

Gleevec

  9/02               400 mg

11/02               300 mg

  2/03                           BMB 90% PH+ (FISH)

  5/03               400 mg

  6/03               600 mg

  8/03                           BMB 90% PH+ (FISH)

  1/04               800 mg                       

  5/04                           BMB 0% PH   (FISH)

 

Side effects:

 

 Peripheral Neuropathy sensory in feet & ankles Started early 2003 and progressed until I purposely went off Lipitor in 12/03 and has stabilized. Co-mingling of Gleevec and Lipitor: Official package labeling for Gleevec (imatinib) states that imatinib increased the mean Cmax and AUC of simvastatin by 2- and 3.5-fold, respectively, indicating an inhibition of CYP3A4 by imatinib. Pharmacists I talked to said if the co-mingling may have caused the problem, and it may take 2 more years to subside or improve. It was interesting in that my last cholesterol test (133) in 12/04 was lower than when I was on Lipitor (Gleevec?). Also, my severe muscle spasms diminished.

 

I still have puffy eyes and facial swelling, occasionally minor leg muscle cramps and hands ending up in a lockjaw grip, none of which I consider significant; and after I went onto 800 mg of Gleevec - cold intolerance - Thyroid tests were normal -(extra warm clothes & bedding necessary)  which is a bother since I live in MN. I also have developed a pale face; - thin skin that easily cuts, bruises etc  lots of band aids.  

 

Past side effects that have disappeared were: nausea (pill with meals & lots of fluids eliminated this), bone pain, joint pain, eye bleeds, diarrhea, fatigue and weight gain. I had a hard time with diarrhea until late January of this year when I got the flu and wasnt eating much, and drinking mostly water and fruit juice. The diarrhea stopped during those few days. Over the next couple of weeks of experimenting I determined it was from dairy products (and not lactose). I switched to soy products and the only few times Ive gotten diarrhea since, Ive traced back to milk, cheese, milk chocolate or the like that I accidentally consumed. (no more chocolate, ice cream & other goodies). Also, my weight dropped from 188 to 170, and Ive had more energy.

 

During 2003, I discussed the BMT possibility with the local University Cancer center and since I didnt have a donor, my age  Im 69, pretty low odds of success etc., I told them Id take my chances with Gleevec.

 

Ive have been able to work 2-3 days a week during all this time, play golf during the season (I walk & carry my bag) when Ive wanted to, walked 40 minutes most days  (and until I went on soy products  knowing where all the local toilets were) and in general trying not letting CML change my life very much.

 

I havent had a PCR and I plan to discuss this with my onc this coming April. I do have monthly blood tests.

 

Ive had great support from my family and friends. The word cancer or leukemia didnt scare any of them from treating me as a normal individual. At work, I told only those few execs that had to know and asked them to keep it confidential which they have done. I was afraid that I would be treated differently by the other employees if they knew.

 

Jim

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New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com

Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com

CML (Chronic Myelogenous Leukemia Support List)
---------------------------------
Part Of CMLHope.Com
An International Community Of CML Patients
For more information: http://cmlhope.com

Post Message: [email protected]
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