If anyone has followed my wife’s journey she had a bmt 3 months ago. Long story short she had a bone marrow biopsy that said 0.00% cancer about 2 months ago. She just had her 100 day biopsy and it’s reading 0.02% is this as concerning as I’m making it out to be? Or is it normal?
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Cause for concern? ???
Hi Jason,
Medically I can’t comment as I am not sure how things are measured in terms of a bmt but my reply is really on a more human level and just to say I wish your wife a full recovery and I hope you are all coping ok through this very stressful time. I’ve seen your previous posts as your wife was diagnosed around a similar time to myself. I am hoping that her medical team/doctor can clarify this for you. And I hope that the result is within the normal levels and continues to be so.
Warmest of wishes to you all.
Alex
Hey Jason,
I saw your post a few times already . I'm guessing that not a lot of our members went trough what your wife is going through, me included. I wanted to join Alex in offering moral support and wishing your wife a speedy recovery and many, many more years of good health by your side.
Take care!
Hi Jason,
0.02%, in full numbers means two in ten-thousand. So that is still a pretty low number!
Just so I understand fully, her BMT 3 months ago ... was that a FISH test or a PCR test do you know? (It should say in the test report). And the 100 day test, was that also on bone marrow? I presume that was definitely a PCR test since FISH would not give a number as specific as 0.02%.
David.
Hi Jason,
As David has already said 0.02% is a low number and that may well go down again. For a transplant patient the fact that she has achieved this low level of disease at 100 days post transplant is significant and good news. There are other numbers you may need to ask for... i.e the level of donor cells present - this is called 'chimerism' and if donor cells remain in the majority over time then this is good news. It will be a long road for her - and you - and you need to ask her transplant team for the next milestone she needs to reach and the relevant results to look out for.
I had a reduced intensity SCT in 2003 and it was always expected that my own CML cells would eventually start to rise. I was monitored for signs of molecular residual disease over the 12 months following SCT - at which point imatinib was reintroduced in order to control any residual CML cells present - which were rising but still at a very low levels. After 14/15 months post transplant I was given 4 separate infusions of my donors mature lymphocytes over the next 12 months... the last infusion successfully obliterated any residual disease left. This was a complicated protocol which will probably not be helpful to go into too much detail here.
Just to say that if your wife does eventually go on to show rising % of a molecular residual disease (her own CML cells) there are a couple of ways to rescue the donor graft. The graft can be effectively 'rescued' by either DLI (donor lymphocyte infusion - if there are enough donor lymphocytes available) or if that is not possible, a reintroduction of TKI therapy.
Best wishes to your wife....
Sandy
Hi Jason,
during the 11 months after my transplant I was monitored for the expected molecular relapse.... it was not until my PCR result showed the residual ph+ cells were at 0.5% that there was action taken and I started taking 400mg imatinib - which (even though I was resistant to imatinib before SCT, worked very effectively for the following months until I got to 12 months post SCT when DLI could be safely introduced without it causing severe GVHD.
It's a fine balance between GVL (Graft versus Leukaemia) which is the whole point of transplant, and GVHD (Graft versus Host Disease) which you do not want too much of for obvious reasons.
So even at 0.2% her residual disease is still at a low level. As I said, if it gets much higher she could take a TKI until she is at least 11/12 months post transplant.... then DLI could be used to deal with any residual disease.
Her donor graft may well be able to control the residual disease... hopefully it just needs more time to to build.
I hope this is helpful,
Sandy