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Wondering what is going on?

Dear Sandy and the Cml Support Forum, 

My last two PCR results taken over the last five months have shown successive increases, not large but neverthless not what I am used to.  I take 600 mg Glivec.  In June 2010 my PCR came back at 0.003 and in November at 0.006.  For the previous two years since June 2008 my PCR had been at 0.000.   I am wondering why because I have a worry that my PCR might be on the way up again.   It did just that about five years ago when my PCR jumped from 0 to 0.036 and I was taken off the 400 mg Glivec and given the 600 mg. dose.    Obviously I do not want to end up on the 800 dose in future.    I think the side effects would be too much for me.  My health is generally quite frail at the moment and I am not young anymore. 

Is there any evidence of Dasatinib and Nilotanib being precribed to anyone under the terms of the new coalition government?  It would be nice to think what they said is, in fact, working for patients who need to change drugs.

I have been taking glivec for the past nine years.   I go back a long way on this wonderful cml site and hey ho here I am again asking for your help please.     With love to you Sandy and everybody else as well.      Patty P.

 

hi

Yes my husband recently started on dasatinib, so is possible. Our doctor here said although the test is very good there s always a chance they have reproduced the cells too mnay times giving an "off" reading.

My husband hasnt got to the magic remission yet, but well on the way. I guess the fact is its slowly increasing means its not out of control. Who are you under? can you ring them for a quick chat about your concerns?

Hi Patty,

The difference between 0.006 and 0.003 is not significant. To detect a trend you need 3 consecutive results. My suggestion would be not to wait 5 months to test again but get another PCR done within 2 months of the last one. This will tell you if it is on the rise. Anything less than a 1 log change is usually not significant. Many patients go in and out of zero regularly.

I hope this helps,

Zavie

Hi Patty   Good to hear from you - a CML veteran like me.   I am now on Nilotinib, at a low dose 400mg one day 200mg the next.  I have managed a 0.000 ONCE but now hover at 0.00? something !!  My consultant is happy with this level. Side effects very few on a day to day level, however I have gone to the edge of diabetes - a known risk with Nilotinib, also high colestrol ditto.  Feel fantastic mainly.   Have bad days as we all do with pain but I think that goes with CML whatever medication we are on, also big probs with fatigue.  Best thing is my head is clear and I don't have anything like as many problems with 'chemo brain' !!!     Great thing for me is that I have lost all that Gleevec bulk, and thats such a bonus. As you know my oedema was very bad on Gleevec.

My funding came through, with some delay, mainly I think because the PCT is signing everything off asap before they disappear.  My GP very supportive of my application.

Best guess is that the sooner you/your specialist/ Gp  apply the better as PCTs are still around.

 

Good  luck.

Pennie 

Dear Pat, I would not be concerned with the differences in your PCR tests as the differences- as Zavie has already pointed out- are not at all significant. The only time you need to be concerned is if the results showed a change of one log... and then only after 3 consecutive test results with an upward trend. Your results show bcr/abl to be at very very low molecular levels and after such a long time holding a major molecular response (MMR) you are highly unlikely to relapse. 

If you feel you cannot tolerate the side effects to imatinib then you could ask your consultant if he feels you would benefit from a change in therapy to one of the other TKI's. However, in this time of cut backs and the possible changes coming down the line to the way the NHS commissions drugs etc. I would ask now rather than leave it until this coalition pushes through the changes. 

Good to hear from you Pat and I hope this helps reassure you. Ali has posted a link to an interview with Prof. Jane Apperley. ...this is a good overview of where we are at with CML in general.

Sandy x