AML POST CHEMO

Sorry typo on BP. The reading should say 201/101 Not 191.

Hi Nick

When I finished treatment in September my NPM1 marker was negative and the transplant doctor advised no transplant at that time. However my biopsy in Jan showed the NPM1 marker starting to rise again and relapse was highly likely.Therefore I am going down the transplant route. Things happened very quickly and I have had a course of 5 days of Flag ida to keep me in remission, followed by another 10 days in my local hospital with infections. I am currently waiting for my counts to recover again. Its nearly 5 weeks since chemo ended but I have no idea if they have found a donor or when my transplant is.I wont know this until my neutrophils recover and can have another biopsy to see if I am still in remission

.AML is  very much a watching and waiting game and some days it does get to me. Part of me wishes I had gone straight to transplant after my last chemo in September but I did have 5 months of feeling great again. I have great faith in my doctors in Cardiff and they seem to think I am a good candidate for transplant but I am dreading the actual process. 

Hope everything works out for you and your wife

Mark

Hi Mark

Just 're dived copy of consultants letter to university college hospital London asking if they think "reduced I density SCT" should be considered or if another session of "salvage chemo" should be given. Personally we would like the treatment locally with a view to transplant if not successful. Seems the best option to us as the NPM1 mutations have reduced each time over the last 3 treatments to such a minute level now. Hoping we get the answer we want.

Nick

Hi Nick

I hope you get some sort of timetable soon as i know the waiting and not knowing is very stressful.

I am off to Cardiff on Tuesday for a biopsy to see if i remain in remission and then hopefully a transplant. 

Still dont know when or if it will be reduced intensity or the powerful chemo before . With a bit of luck I will have some news on Tuesday

Mark.

Hi Nick and Mark,

My husband is in a trial drug at The Royal Marsden, London and we have met another patient there who went straight to trial without a transplant following AML relapse after initial chemo and he is doing very well. You have to have a certain IDH1 marker to get on the trial but there are other trials as well which may be open to other markers and you should ask your consultants about these to see what options are open to you in addition to transplant. Hope you and your wife get the to know more soon.

Best Wishes!

Thanks for the info. We don't know what the marker is but I will ask about the trial if this has a chance as opposed to transplant. It does seem a littleextreme to transplant when the mutation keeps reducing and is so so small.

Nick

Hi Nick,

Every case is different I know there is someone’s husband on this forum who was going to have a transplant but the marker started to drop and they are just under monitoring now. They have only just recently introduced frequent NPM1 marker monitoring and my husband relapsed overtly and didn’t get to have marker testing. The transplant was straight forward for my husband and no where near as scary as it sounded but unfortunately did not work. The consultant at Marsden said there is no such thing as a ‘favourable’ AML no matter what it is a horrible serious disease. I believe one day that targeted inhibitor therapy may replace transplants the way it does for CML but we are a way off yet.

Warmest regards  

Hi Nick

I had AML NPM1 with a couple of other mutations. I was given an intermediate prognosis. My NPM1 reduced each round of the 3 chemos and was expected to disappear at round 4. It didn't, it stayed weakly positive. It then started to rise, so although still at a molecular level and still in remission I had to have another chemo to bridge me to transplant. I had CPX, not flagida. I had my transplant in October 2018,  I'm now 6 months passed transplant and the post transplant biopsy showed no sign of NPM1. They will go for transplant if the NPM1 is still showing after round 4. Is your wife in remission?

I had high dose conditioning in transplant which was fladaurabine and bulsefan plus some other not very nice drugs thrown in. It was tough ref the sickness, but I was only in for 3 weeks, Ive recovered fast and my fitness level is very good now. I know a few people who had 4 rounds of chemo only for NPM1 as the marker went and they are still doing well getting on for 2 years, but for me I was going to relapse so getting to transplant while still in remission is the best option.  I had no blood pressure issues. 

Debbie

Hi Debbie

Yes my wife is,in remission but the NPM1 marker was very low at last biopsy but is starting to rise. This 4th session with FLAGIDA is designed to reduce the market to a minimum or completely get rid and then straight to transplant.  We were told that even if after Flag treatment the risk of relapse is still relaticely high, hence this new method of immediate transplant following flag regardless of the results.My wife's sister in a good match and therefore they want this done asap following the FLAG treatment which starts on Tuesday. 

Nick

Hi Nick

Sounds like the exact situation I was in, although I had CPX at this stage, then Flag for conditioning. Are they saying the Flag will be the conditioning treatment, or just prior to it? I think they got my NPM1 to reduce before transplant hence why they went ahead with it, although they never said. If it is on a downward slope again after Flag and she's still in remission then the chances are it will be sucessfull. It's a worrying time and I was given a 50 percent chance, but remember 20 percent of that is the risk of transplant itself. After the transplant it's now between 25 and 30 percent of relapse, but Im now negative for NPM1 and am 100 percent donor so I'm less worried despite the statistics. The donor does not carry the NPM1, so once you are full donor it's likely to be gone along with other mutations. Also the new immune system you get it more likely to see any residual leukemia as foreign and deal with it. Assuming there is any after conditioning, there may not be. 

Debbie

Transplant is the best curative option and she's in a great position to have it still being in remission. Flagida is a lot more intensive and more likely to bring down NPM1 than the standard treatment which I also had. (Cyterabine/Daur) and cyterabine for consolidation.

Debbie