NPM1 RELAPSE

Hi Nick, so sorry to hear that a relapse is in the cards.

As you know I had a different blood cancer but relapse was part of my life and had to go on the SCT rollercoaster.

Yes SCT is not the best road to be looking at going on but for me it did save my life and now I am over 5 years down the road and doing good.

Looking for a clear plan to be put together to push this in a positive direction.

Hi Fulhamboy

I am so sorry your wife has had this devastating news especially just before Christmas.

I too had this happen to me after only a few months of remission. The marker had started to rise again and a second biopsy confirmed this.

I was still in morphological remission but not molecular.They decided to act quickly and give me Flag Ida chemo to get me back in full remission which thankfully worked and then a bone marrow transplant a few months later. 
The positive side of the Npm1 marker is they can spot it early as they have in your wife’s case and act accordingly.

Hope things go ok for you both x

Mark

Hi Mark

I am wondering if this market has showed up after almost 20 months as a result of improved technology. Initially the doctors showed a chart with lines showing a level following biopsies that are considered "no evidence of is disease" and maybe this line has now been lowered, therefore the marker may now show whereas previously it was not visible. May be wishful thinking of course, but if so, could it be possible that the marker has always been there but not Increasing. We both live in hope of this is the case. It's certainly a,question we will be asking. 

They have said that it is a little confusing, hence another biopsy next week. Also stated if it is actually there and increasing they will target this specific marker so not sure if this is just another single course of chemo or another 3 sessions of 6-8 weeks a time and then FLAG IDA as she had before.

Very scary times again.

Nick

Hi again Mark 

I read that you went to SCT following your treatment and achieving full remission. We hope if treatment is required we have a choice. Under the current strict covid regulations and being in tier 4, my wife would not wish to travel to London for treatment and ALL THE FOLLOW UP meetings after as the risk of infection is greatly increased and very very risky. Hopefully as she is reasonably fit and well 66years, they will eradicate the marker locally without the need for SCT. praying every day for a successful outcome!!

Nick

Hi Nick 

I think the marker is always visible,but needs to be at a certain level.ie less than a certain percentage in your blood. I don’t know what that percentage is but mine had started to visibly rise. They did another biopsy as sometimes it can be wrong. That was on a Friday and by the Sunday they had started me on the chemo as they needed to keep it low so I remained in remission for transplant. 
Once they got me in remission again there didn’t seem a rush to get me in for transplant. I had the chemo mid February and transplant wasn’t till the end of May. I did and still do wonder how long I would have stayed in remission if I hadn’t had a transplant but they seemed to think that once it comes back it will keep returning.

The thought of having a transplant did scare me and does carry risks but can result in a cure for AML and so far fingers crossed it is working. Since my transplant I have met quite a few people who are doing really well and most are in our age group,in fact one of my ex neighbours had her transplant in he early 70s and she’s doing great !

Unfortunately there are a lot of follow up visits after bmt but some of these can be done at your local hospital.

There are some good groups on Facebook which I have found helpful too.

also if you want to private message me feel free x

Mark