RE: Re-introducing

[Guest guest]

Hi Jeanne,

I had a total right Hip replacment and my dr made sure and told me to be careful about that ninty degree I have to sit on a high toilet and use a reacher to pick up stuff off the floor and I can't sit on the floor I been liked this for five years.

SusieJeanne <krispie919@...> wrote:

Hi-I introduced myself last month (Jeanne from Ga- I was petting my dog and couldn't move my leg) Had a THR. Well, saw my Surgeon last week-full of Q's. Seems like it wasn't my osteoarthritis that was my problem, but osteoporosis. Since I didn't fall, could have been the way I moved, or twisted. For a while I was Scared to death, when he said it could happen again, anytime. Then I decided, I'm not going to live in fear; I will be careful, and if it happens again, I'll deal with it. Anyone else on this list had a THR because of osteoporosis? One question I have-I read this week, don't know if it was this list or another, someone was told by their Dr. to totally disregard the90 degree restriction. I thought this was for life. Am I wrong (I hope)? Thanks for listening

[Guest guest]

At 07:35 AM 5/1/06 +0000, you wrote:

>Hi, I'm Fran from Alaska who used to post on the old CML group.

Hi Fran,

I remember you from the old CML list and from ACOR.

Maybe because you have been CCR and were PCRU for so long, your marrow is

more normal (cellularity, etc) and you will tolerate the higher dose of IM

better. Dr. Talpaz I think said quite a while ago that he did not expect

people to remain PCRU, but to bobble in and out of it......remember it

looks at a million cells and there are a trillion white cells in the body.

Anyway, wanted to say 'Hi' and hope you tolerate the higher dose and get a

good response from it. Because I never even got to CCR on 800mg IM.....I am

now on BMS, almost 6 months and due for a bmb soon.

C. (aka Maui Nanc)

[Guest guest]

Hi ,

Thanks for the response. I remember visiting you many years ago. Zavie also

suggested that a small increase like this might be a somewhat normal

variation. That's good to know. I have a PCR again next week and I'm hoping

for the best. It's nice to hear from you. Good luck with BMS!

Fran

[Guest guest]

Hi Fran, from one " oldbie " to another " oldbie "

Of course we remember you!

I'll be in your neck of the woods again this June, I hope, to do the

Anchorage half-marathon for the Leukemia Society's Team in Training

program. I was supposed to do the race last year but just two weeks

before I was due to leave, I developed blood clots in my lungs and was

fortunate to have survived, and we had to cancel all of our vacation

plans. So, now I'm trying again this year.

For a variety of reasons, my training has not been going well, though,

so I may have to walk much of it, but I guess that's OK. The point was

to raise money for the LLS, and I'm at about $7,000 right now, so that's

good!

Take care, Fran, and stay in touch. (Oh, my PCR has been positive for a

while now, too. Will be having another bone marrow biopsy later this

month.)

G.

www.upstairswindow.org

www.cmlsupport.com

[ ] Re-introducing

Hi, I'm Fran from Alaska who used to post on the old CML group. I lost

track of you guys until a thanks to a recent email from Zavie, I found

this group. After 5 years in complete cytogenetic remission, my

last PCR detected leukemia cells again (still a low number). My doctor

recommended increasing my gleevec dose to 600mg. (from the 300mg. I've

been on for 5 years). I'm doing ok on the 600mg which is surprising

as in the past my blood counts have not been able to maintain on

higher doses. Just an update and open to any advice from other long

time gleevec users whose results have detected BCR-ABL cells after a

long CCR. I'll have another PCR in May to see if the BCR-ABL cells are

the same, increasing or gone. I'm hoping for gone!

Fran

dx 5/99

Peg Interferon and Ara C 1/2000-5/2001-CCR 10/2000

gleevec 300mg 7/01-3/06 then increasing to 600mg 4/06

Currently PCR by Fred Hutch measures--148 BCR-ABL cells detected