Allo tomorrow

Hi Debbie

Now over 3 weeks since biopsy at UCLH and no news yet 

I think that as the flag ida was so brutal on my wife, they decided to wait a while rather than going straight to SCT. 

I phoned the team last week as asked about the results and still no news. Maybe, just maybe the mutation has been killed off.....still praying for this unlikely miracle to have worked. 

Nick

Hi Nick

Fingers crossed for good results.  Have they said if it's clear at a molecular level then they won't transplant? Or will they still go ahead with transplant regardless? 

My understanding is that if the NPM1 increased again, then flagida is given only to bring it back down and have it on a downward slope for transplant, or to knock it out before transplant. 

If the mutation had increased again after round 3 of chemo or round 4, then it will be deamed as chemo resistant and transplant would still be necessary as the risk of relapse is still there. 

I could be wrong in your wife's case, but in my case, as it was advancing again after my 4th round of chemo (2nd consolidation) then even if they managed to clear it with either flagida or CPX, it had shown resistance to chemo by rising again, so they would think it would only be temporary and could return.  Mine was clear after transplant, although they never told me the results of that biopsy you are waiting for before my transplant. It must have had some effect because they went ahead with my transplant. I am still curious to know though. 

Do you have a donor ready anyway? I am fine now 8 months passed transplant, although I've just had shingles but it's a small price to pay. 

Keep me posted on the results. Keeping all fingers crossed for you. 

Debbie

X

Hi Debbie ate post I know but this humid weather prevents good sleep!!!!

I think you are probably right in your message re probable transplant regardless if I'm honest, but just hanging onto the little bit of hope we have for now.

My wifes sister is a good match for transplant but had no tests yet apart from blood tests to determine suitability.

Just waiting for that call...for next stage. I am pleased that you have not suffered too much post SCT and hope to godl my wife doesn't either although it seems from the forums that many risks are there and thats a massive worry for me

I will keep you posted on any news. Btw, which hospital carried out your  process?

Nick

Hi Nick

I had my transplant at Birmingham QE. I was out in 3 weeks. Wasn't nice but your counts come up quickly after it as they are healthy donor cells, so you're only neutroplenic for a couple of weeks. The run up to it was terrifying. They will tell you the risks, but death in transplant is rare. It would be due to infection mainly, but that is the same when you have chemo. 

I'm glad I had it though. A rising NPM1 means relapse is imminent. The CPX is to bridge to transplant, as is the Flagida your wife had. She will be going into transplant in first remission which is the best possible situation for cure. You want a long term cure, not a short term fix. If she were to relapse after Flagida then they would have to try and get her in remission again which is more difficult after relapse and more chemo. Then she would be in 2nd remission for transplant and have less chance of it working, that's if they managed to get her in remission after a full relapse. 

If you are worried, get them to explain this in detail to you so you are fully aware and happier with the decision. 

I would not be here had I not had transplant as I would have relapsed because the marker was rising. Like I said things could be different in her case, but please get them to explain everything because you want to go into it positively. 

In Oct I will be a year passed transplant. Obviously the fear of relapse is there, but I think if I get to that first year then my chances are even better. 

Debbie

Hey guys. 

Just a quick update. I’m now eating and drinking ok and generally don’t feel too bad. I had a couple of days last week where it looked like I might get home yesterday or today but I keep spiking a temp. They’ve tested everything with bloods, done a CT scan on my chest, an echogram on my heart and have swabbed just about every part of my body but they can’t find anything and it’s really getting me down now. Did anyone else have this. 

Regards

Mark

Hi Mark

Hang in there. They will get on top of it with antibiotics. Had this half way through transplant but went in a few days with IV antibiotics. 

Debbie

A yes from me Mark, during both SCTs I had spiking temperatures and every test and swab under the sun was done and no answers.

Consultant basically said " Well we just can't tell your body what to do - we just wait until it decides not to have a party and calm down and act more normal"

After the first time I did accept that my body was allowed to have a few 'pity me parties' after what it had been put through.

Hang in there.

Hi Mark, 

yes, and she had a cough as well so they got worried and did a chest X-ray, but it seems all that was, was the teeny hairs which normally prevent stuff accumulating, had gone with the chemo! And they didn’t get to the bottom of the temp which decided just to be normal the next day anyway! 

Hang on in there......

Hugs xxx

Mark,

Definitely feeling for you, I had this when I was re-admitted around Day 50 for GvHD. My body kept testing positive for adenovirus, even though I felt perfectly (relatively) well. Everyone had to wear masks when coming into the room - it was like living in one of those awful Hollywood disease apocalypse films. I understand the frustration. This really gets to be a mental battle at times - it’s just something you’ve got to get through - keep hanging in there, we’re all routing for you. And remember the life you’re living now can’t and won’t last forever. 

All the best

Greg

Hi Debbie and all other freinds.

Just received an e mail from the consultant at UCLH confirming last biopsy following flag ida. My wifes metomorphical and molecular markers are CLEAR.

NO TRANSPLANT REQUIRED.

after 8 months of stress and hell and 4 chemo treatments, this is the best news we could ask for.

,consultant suggesting one final chemo session to conclude treatment and gives 75% cure rate. 

Will only need SCT if the molecular results in the future return.

This is truly wonderful  news and many tears being shed, hoping this is the start of the clear road ahead.

Just cannot believe this great news as we were sure SCT was the next step. 

Nick