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May need to have a transplant if PCR results are not below 10%

I went for my 9 month PCR test last week. Wasn't expecting anything major when my consultant blew my feet right out from under from by mentioning the word transplant.
Basically I am on Nilotinib as a clinical trial but I have had to stop treatment 3 times as my platelets were too low. So in the last 9 months I have been off treatment nearly 10 weeks in a block of 2 weeks, 4 weeks and then 3 1/2 weeks.. My PCR's were 85% at 3 months and 31% at 6 months.
My consultant said the thinking now is that if you are not below 10% at 3 months your long term outlook is not as favourable as those who are. Therefore he is recommending that if I am not below 10% at this PCR I should go straight for a transplant as I have a match with my sister and it would be more favourable to do it now, while I feel healthy, rather than later.
I am shocked and rather afraid at this change in thinking but I completely understand it.
It will be a long week and a half waiting for my PCR results.
Any thoughts? Appreciate all your comments.
Need to get a bit of a grip for my children's sake as I am all over the place at the moment!
Thanks
Emma x

Hi Emma, do not be panicked by your consultant's view. Given the numbers you quote above it is clear that you have  had a major cytogenetic response within the timelines given for response to imatinib first line- i.e at 6 months. It seems reasonable that this would be the same for nilotinib responses.

Expected time to response.

• Complete Hematologic Response (CMR) at 3 months  

• Major Cytogenetic Response (MCyr) at 12 months  

• Complete Cytogenetic Response (CCyR) at 18 months  

• Major Molecular Response (MMR) at 24 months

 

Definitions: (<=less than >=more than)

 

• Complete hematologic response (HR):    

o WBC <10 x 109/L with normal differential 

o Hb >110g/L 

o Platelets <500 x 109/L 

o No signs or symptoms of disease (e.g. splenomegaly- enlarged spleen) 

 

• Cyotogenetic responses: 

o Complete cytogenetic response: 0% Ph+ metaphases 

o Major response: 1-34% Ph+ metaphases 

o Minor response: 35-95% Ph+metaphases 

o No response:  Persistence of 100% Ph positivity. 

 

• Major molecular response: > 3 log reduction in bcr-abl transcripts.

 

Please remind me of where you are being treated. I do think you might get a 2nd opinion if your consultant insists that you consider going to transplant rather than wait a little longer for you to achieve a lower CyR  especially given you have not been able to take nilotinib continuously due to low counts. 34% in 6months seems a good response to me!

 

Sandy

 

Thanks for the response Sandy,
I am at The Churchill hospital in Oxford, my consultant was responding to the advice now given by the Hammersmith with this figure of 10% at 3 months being the bench mark. When I was at the Hammersmith on Saturday for the patients meeting I asked Proffessor John Goldman what was his advice after telling him what my consultant had said and he agreed with him. He said more patients from the Hammersmith will be having transplants if they don't meet this 10% bench mark at 3 months.
I am astounded but have been told it is based on the last 10 years of research on Imatanib.
I may seek another opinion, not really sure what to do, my head is reeling a bit!
Thanks again
Emma x

Hi Emma... I see why you are reeling! I think the generalised answer you got from Prof. Goldman might have been because you prefaced your question with the advice that your doctor had already given you- i.e you should be seeing 10% at 3 months- might have effected the answer you received.

I have looked at the ELNet/Eutos guidelines -updated in 2009- as well as those from Canada and the London networks and all confirm the response timelines as I posted in my previous post. This is obviously taken from the last 10 years of imatinib therapy.

I am not sure who/what we are supposed to believe given the directly conflicting advice you are currently receiving. 

I will ask around further and let you know if I get any clearer answers. Meanwhile my advice is for you to hold on to the fact that you have had a good response to nilotinib at 31% withing 6 months, and it might be that your latest PCR shows that you have at least held that response- if there is a rise in bcr/abl, it would likely be that you have had to stop therapy for several weeks whilst waiting for your other counts to rise....

If your pcr does show a significant rise then I would still suggest you ask to see Prof. Apperley at Hammersmith to discuss your options face to face with her- rather than rely on long distance advice via your consultant. 

Sandy 

 

Hi Emma.

Im sorry to hear that you have this added stress since your last visit to your consultant. But hopefully if you have had a good run on nilotinib then this PCR will be below 10%. I am no expert at all and I only get my 6 month PCR taken tomorrow I just wanted to say that I was thinking of you and in reality you only really have been on these drugs 6 months.

Also just to add im not sure if advice has changed but i was lucky enough to be below 10% at 3 months made it by the skin of my teeth though at 9.62%. However my consultant says now that i have to be 1% or below at 6 months or he will do mutations test and plasma tests and said he is more likely to change drugs these days than dose escalate (im on imatanib)It is so stressful waiting. Just wanted to post as the timescales I have been given don't match with the guidelines also.

Let's hope your PCR is down when you get your results. Fingers crossed.

Lynne x

Emma

I do not have the answer to this but just wanted to say I was diagnosed 8 years ago, treated with imatinib and had even for those days a sluggish response _ started off with 100% PCR then down to 70% approx at 3 mths up to 75% at 6 months then 25% at 9 months and steadily down from there to 0.0something these days.  My platelets and white counts also went crashing down around 6-9mths although I was just able to stay on the 400mg imatinib throughout.  There was a lot of talk about transplant at the 6mth result as you can imagine but I was not keen given 4 young kiddies at the time.  Thankfully it never came to transplant and I plod along quite happily on my 400mg imatinib a day doing all the mad things mums of teenagers do...... Slow responders do exist ( we refer to ourselves as the turtles).  Just wanted to give you some hope! So of course you will want your PCR to be heading in the right direction but to spring into transplant on the basis of one suboptimal PCR seems hasty -- I would have thought that mutations testing etc would be a more practical step forward.  Also you say the nilotinib was stopped because your platelets were too low - some doctors are happy for the platelets to drop down quite significantly (don"t know how low yours were) but it may be that as you are on a trial the rules dictate that you stop the drug once your platelets hit a certain level and maybe outwith the trial they might be happier to let them drop a little further to enable you to stay on the drug for longer.

Hope this is of some help

 

Annie