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[CMLHope]
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--- Begin Message --- Hi Zavie,Randy has had a fish test done about every 3 months.The first one after 3 months on 400 mg was 51%.So his ONC put him on 600 mg.He took that for six weeks I believe,and his counts got so low he put him back to 400mg.they did a fish and it was down to 15%.He was on that dose(400) for a couple of months,again another fish it was 18%.Going back up.That was when we went to see Dr.Gingrich at Iowa City.He did a PCR test.It showed 19 positive cells out of 1,000.He said to go back on the 600 mg and stay there,that they would just have to treat the low counts.So that is where we are now.It would seem that it came down fast to start with and now it is being stubborn.He will take a divided dose of 400 in the AM and 400 in the PM I don't know maybe this will be better for him. Dr Gingrich is the head CML Dr. at the University of Iowa Hospital. We have only been there one time so we do not know him well,Randy goes back there in January.Xavier one thing I am really puzzled about is every thing I have read about Neulasta,says it is for nonmyloid cancers.Do you know any thing about this? Sorry this is so long,it is so hard to keep it all straight.That's why I take Zanax at night to sleep,just to shut my mind off for awhile. I was thinking maybe we should do another PCR to see what it Say's,BUT the Dr.said there was no reason to do another one until the fish comes back negative.Sandy
Zavie Miller <[EMAIL PROTECTED]> wrote:Hi Sandy,I find it very hard to accpet that a CML doctor would make a change in treatment on the basis of one FISH test. The FISH test has a built in error that overestimates the number of CML cells. For all we know, Randy can really be at 0%.The statement "He said he needed to go to 800 because it has been over a year now sense DX and he needed to get to 0 by fish." sounds pretty bizarre. What is the name of this specialist in Iowa City? I would dearly like to read any of the research studies that he has been involved in. This statement goes directly against anything that the top CML doctors that I know would say or do.Of course his blood counts are going to crash when the Gleevec dose is increased to 800 mg. They crashed when it was increased to 600 mg.I don't think that you should sit around and wait until something happens, I would get a consult with Dr. Druker or Dr. Mauro at OHSU, or Dr. Talpaz at Ann Arbor ASAP. Something just doesn't sound right, unless I am missing something.Zavie
On 9/18/06, Sandy Johnson <[EMAIL PROTECTED]> wrote:Hello everyone,Well Randy's fish came back at 6% positive.He will now go on 800mg of gleevec along with Neulasta .One shot every two weeks.I guess that is better than a shot of neupogen every day.His ANC was 0.8 today.His regular ONC called his CML specialist in Iowa City.He said he needed to go to 800 because it has been over a year now sense DX and he needed to get to 0 by fish.He also said Randy was going to have some major issues with his blood counts for awhile.Every thing is low right now except his platelets.And they are on the border line. Have the rest of you had these issues with blood counts this long?His counts have gone down hill every sense he went on 600mg.Maybe age has something to do with it.Randy is only 55,I don't think that is very old(because I am right behind him) ;) Thanks everyone,I guess we will just wait and see what happens next.Sandy
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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
PCRU 5/02 at RVH
2.8 log reduction Sep/05
3.0 log reduction Jan/06
e-mail: [EMAIL PROTECTED]
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204
Yahoo ID: zaviem
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