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First Time Posting

Hello everyone,
It's my first time at posting comments although I have been reading this site for several months and have now decided to give it a go. I am a complete novice at this internet thing so please bear with me!

I was diagnosed in November 95 (aged 52) and was medicated with hydroxyurea and Interferon. Things didn't go so well and in September 97 I had an autologous stem cell transplant. After a year or so things started to deteriorate and in October 02 I started trials at Hammersmith on STI 571 (Imatanib 400mmg).I had a lot of side effects but apart from that all went well. My dose was reduced to 300mg and I had my first clear PCR (0.000) in July 02.

Recently my blood counts have dropped, my bone marrow biopsy and aspirate showed my bone marrow to be empty and my spleen is highly enlarged which could mean that it has taken over blood cell production.
I was taken off Imatanib in the middle of March with my PCR still undetectable at 0.000, and am now waiting to see what happens.
Any comments as I'm a little concerned.

Les.

Hi Les

Sounds very confusing to me , can any one else here explain what is happening, Les can you tell us a bit more about your results. Have you been at PCRU (o.ooo)since July 2002 or has the results bounced around?

Regards

Ivan

Hello Ivan thank you for your reply. First of all I said that I was a novice at this computer stuff and I'm afriad that it shows. In spite of me reading my comments several times I still managed to get it wrong - I started my trials in October 2000 not Oct 02. Sorry!
Yes my results have moved around slightly mainly up to 0.003 although they have gone as high as 0.007, they normally stay around 0.000 though.
The last two results I have on record are 1.48 x 10-5 0.000 and 2.34 x 10-5 0.000. I don't understand the first part of the number although I do know that the 0.000 part is good though!

How are things with you?
Reagrds, Les

Hi Les
You are an old timer and you've done really well. I was dx in Feb.99. Your PCR results are very good indeed with no sign of CML at all.
I find your situation somewhat confusing also. Would it be that the Glivec has suppressed your marrow too much ? What are your blood counts like ? You say they have dropped, to what level ? You are in the best place to get this sorted at Hammersmith though, this is where I go too. Next appt. on 17th May.
I am in the process of starting an onsite patient group at Hammersmith so may be you would like to join us. Hope you were given the questionnaire to fill in at your last visit.
Keep us posted on how you get on. I am puzzled why your marrow has suddenly stopped producing cells.
With best wishes
Elizabeth

Hi Les

As far as I am aware multiple 0.000s are very good results. (im hopefully going towards that magic number ) But I am with Elizabeth being very interested to hear about more about your other results i.e Blood Count & Liver Function Test.What do the Drs think it be the cause of the loss of marrow? You mention that "it has taken over blood cell production" what is "it".

Regards

Ivan

Hello Elizabeth & Ivan,just to update,blood levels well up since stopping Imatinib,particually platelets,Hb 10.9. WBC 6.9. PLts 155.Apparently, before you are born,the spleen makes some blood,after you are born the marrow takes over. In certain circumstanes, the spleen can resume this role. Good to know that you have a backup.Yes, its thought that Imatinib has suppressed the marrow, thats why ive been taken off of it. I dont mind as there is lots of leeway to play about with. Just very interested if anyone else has been through this. I do attend HH. as well as my local hospital, and I know I recieve the very best care possible from both and I have supreme confidance in all the doctors. What exciting times it must be for them,at last new drugs that make such a differance with the magic bullets and the possibility of gene therapy,WOW.Yes, I did get the questionaire at last visit, but an incident with the fire alarms as we came out made us forget it. I must ask next time about liver function test as ive never asked before.Next app,6th June.

Kind regards
Les.

Hi Les
This is great news. I have had a lot of problem in the past with Glivec suppressing my marrow, I used to spend more time off than on.
Glad to hear that the counts are picking up. They may actually change you on to one of the other drugs to see if the effect is the same, will be interesting to follow.
Take Care
Elizabeth