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Advice please

Hi All

Hope you are all well, i am after some advice please, my last bone marrow was Feb and was found to still be at 20% after 12 months, my pcr was at 5.5% also, i had another pcr but the results were lost (not the hosps fault) so i had another pcr in April i rang the hosp today for my results and found that my pcr has not changed I didn't get the exact figure but im assuming its still around 5-6% they have asked me to go in next week for another pcr so my results will be there by my next appointment in July. I am also having another bone marrow done in August. Can i ask if anyone else has had this and should i be worried as i don't seem to be making any more progress, The doc has said that if my pcr is still not showing then a change of therapy will be needed, do i just wait and see if the glivic kicks in, or ask if i can change treatment now to nilotinib?

I'm trying not to worry but i was hoping to have reached ccr by now. Also i am soooooo tired lately i can barely stay awake for the day, also the pigmentation in my face is changing and i look constantly tanned, i know that sounds good but its only in patches any advice here would be great also.

Thanks in advance I don't know what i would do without this site sometimes.

Ni x

Hello Ni,
I would say your doctors are making the right noises ;o) It seems that - as you say - you have not made further progress on imatinib and given you are at (or now beyond) the 12 month mark they would probably like to see more evidence that your pcr is continuing to drop further.
As your last 2 pcrs show the same % and you are experiencing an increase in fatigue and other side effects (i.e skin pigmentation) which are both attributed to imatinib, it may well be time to change therapy.
Remember that nilotinib is a 2nd generation TKi and all recent publications (see ASH etc) confirm that 2nd generation TKIs show an improvement over imatinib.

It is up to you, but I detect that you are already thinking that you should speak to your doctors about changing therapy now rather than waiting until your next appt. in July. Follow your instincts- it's your life, your body, and you are in the best position to assess the affects of any particular therapy. Discuss this with your doctor - I am sure he/she will help you make the decision.

Best wishes,
Sandy

I wish I had advice but all I can do is offer you support, I know how bad the fatigue is. I am flaked on the sofa right now feeling guilty I am not taking the kids to the park but Sainsburys has finished me off! I also get a horrid rash on my face, it is worse some days than others(strangely when I have not drunk enough water it is bad) I agree with Sandy it sounds like they are putting plans in place and I just hope your next PCR is lower. I hope things get better for you,
Take care
Emma x

Thanks Sandy and Emma, i think i am going to ask to change therapy sooner rather than later although i'm not majorly worried as i'm still in a better place now being at 5% where as this time last year i was at 100% so staying positive, lets see what the next result says.

Thanks again guys

Ni x

Hi, just to say that I hadn't reached ccr so my Consultant changed my Glivec to 600mg per day and that did the trick. That was in 2004 and I still take 600mg daily as it seems to suit me and keeps me at 0.00 something. Hope things go well for you, pam.

Ok i have now been for my blood test and found out that i'm not stuck at 5% i have actually gone upto 7% so not happy, I had a good chat with my nurse and they are now sending my bloods to the Hamersmith as well as to Prof Clarke in Liverpool who will advise from there. It looks like i will be changing to Nilotinib in the near future if my results are not changing. I don't feel to worried about this at the moment although i would have liked my pcr's to be coming down. I am also now not as confused as i was in regards to bone marrows etc, I will keep you informed as to what is happening next as i may need some advice soon on the nilotinib.

Thanks

Naomii

Dear Naomii,

At least things are now more clear for you and it is possible that you need to change therapy. Prof. Clarke is really good and very patient friendly- Liverpool Royal is an CML expert centre and they do a lot of research there.

I am not sure at which hospital you are treated, but if it is not an expert CML centre, then shared care with Liverpool or another centre that is near you, might be an option for you?

Good to hear you are not quite so worried.

Best wishes,

Sandy

Thanks Sandy i am treated at the North Wales Cancer Centre but they liase with prof Clark I have met him once and luckily he is only an hour away should i need to go back.

Thanks again