Atta girl, Lynn!
I had a similar experience - I fired my onc before Trump made the phrase popular. I was hospitalized (almost died) about 6 months after dx and taking 400 mg Gleevec. They still don't know what caused what put in the ER (dehydrated, pneumonia, fever, TB-like symptoms, abdominal pain, loss of appetite, etc, etc). One thing that was discovered was that my onc NEVER monitored my liver functions during those 6 months (something that Novartis instructs onc/hema to do as a matter of treatment follow-up). My liver was badly damaged as a result (don't recall the exact numbers), but it almost killed me (family was summoned 3 days after entering ER, and there are 5 days that have been erased from my memory forever). It was very scaaaaarrry! (That was Aug 2003.) I had been on 600 mg for about 6 months when I had a BMB in October 04, when I was 55% Ph+. I'm currently waiting for another BMB in February to see if it continues to improve. I have my CBC drawn weekly, have liver functions (and basic metabology, since my potassium has been running low) done monthly, and see my onc monthly. Peter H. Dx 4/03 Gleevec 600 mg 55% Ph+ 10/04 --- In [email protected], "snickersunny" <[EMAIL PROTECTED]> wrote: > > Hi Jeanie, > > In the first few months following my diagnosis, there was alot of > talk here on the site about liver enzyme tests,,, so I asked my > Hem/Onc if I had ever had one done?(since we never discussed it). > Well... he just flipped out, and said, "You must think I'm a quack! > I can't believe you just asked me if I've done liver/kidney function > tests on you! Of course I have! I've done two of them on you!" (He > was all in a huff!) When I asked why we hadn't discussed the > results, he said nothing needed to be discussed because they were > normal, and didn't need to be addressed. > > He told me to stop going on the internet and reading up about CML. > He said, "You just do what I tell you to do, and let me be the > Doctor!" (this was a man who had a PHD in Hematology) > > That was the last appointment with that Doctor. I pulled a Donald > Trump on the dude! "You're fired!" lol HA HA! > > Sincerely, Lynn > Zavie Club #692 > > --- In [email protected], [EMAIL PROTECTED] wrote: > > Hi all, > > Glad you are back on the road to recovery Phyllis. > > My doctor never sugested checking my liver so after hearing so much > on this > > list about it, I told my doctor to check it. > > I just had a complete blood check up and everything was good. > > I wonder why these drs have to be told to do something they should > know to be > > doing in the first place? > > How many of you had ever had the dr to suggest the liver test? > > Just wondering? > > My onc is a wonderful caring doctor and takes good care of me but I > had to > > ask for the test. > > Jeanie<3 > > In a message dated 1/9/2005 6:14:24 PM Eastern Standard Time, > > [EMAIL PROTECTED] writes: > > When my liver enzymes would not come down, my onc suggested that I > > explore other options. He recommended that I see a BMT > specialist. > > The specialist said that since I had had such success with Gleevec, > > that he recommended that I try to stay on it if possible. He > stated > > that Gleevec was the "Model T" of the new cancer drugs being > > developed and better ones were in the future. > > My liver enzymes have now returned to within the normal range. > I > > restarted Gleevec slowly two months ago. I just got the results of > my > > latest FISH test, and it was 60%+. Zavie, please save #605 for > me. > > I plan to be 0% again soon. > > > > Phyllis in MI ------------------------ Yahoo! Groups Sponsor --------------------~--> Help save the life of a child. Support St. Jude Children's Research Hospital's 'Thanks & Giving.' http://us.click.yahoo.com/0iazvD/5WnJAA/xGEGAA/8zSolB/TM --------------------------------------------------------------------~-> 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] Subscribe: [EMAIL PROTECTED] Unsubscribe: [EMAIL PROTECTED] Change To No Mail/Web: [EMAIL PROTECTED] Change To Digest: [EMAIL PROTECTED] Change To Email: [EMAIL PROTECTED] List Help: [EMAIL PROTECTED] CML Group Web Site http://groups.yahoo.com/group/CML Yahoo! Groups Links <*> To visit your group on the web, go to: http://groups.yahoo.com/group/CML/ <*> To unsubscribe from this group, send an email to: [EMAIL PROTECTED] <*> Your use of Yahoo! Groups is subject to: http://docs.yahoo.com/info/terms/
