SCT UPDATE

Hi Fulhamboy

i am so pleased your wife is doing so well, let’s hope she can be home soon.

We have just had news that my husband’s sister is a match and so hopefully we will be proceeding to SCT in a few months. He is on consolidation chemo at the moment and is having a rough time with a nasty C Diff infection. Your story fills me with a lot of hope, thanks so much for the updates xxx

Hi Durpy Pug

Great news that your husband's sister is a match, let's hope this can now go-ahead.

Not so good re C diff. did he pick this up in Hospital, hopefully not, but these places can be breeding grounds for all sorts or it could be the drugs that have caused this.Hopefully the consolidation treatment will continue on track and he can then await the SCT in time. 

If there is any delay, don't worry as his team will keep a close eye on him and give treatment in the interim while all the tests etc take place prior to the transplant.

My wife's neutrophils today are up to 2.46 and her other levels are all very good. She's having a one time nebulizer drug tomorrow to prevent lung infections and coming off the ciclosporin drip onto tablets in preparation for her hopeful discharge on Friday or Monday.

It almost feels like a miracle has happened as she's only been 2 weeks since transplant and with no infections, mouth issues, bruising.

Of course this is a marathon period of recovery and things can change but we have to be positive with how things have gone.

She is suffering with bone pain and nausia which is getting her down a little but apart from that she just want to be home.

Oddly she was asked today if she would like to go on a trial after discharge to look into relapse cases.

It would mean having drugs and regular test going forward and she has 80 days to make her mind up.

I think that she will refuse this as she feels she has been through soo much in the past 3years that she just can't take any more treatment.

I support her of course on any decition she makes as I have seen what she had gone through and it is really tough.

Best wishes to you and the best of luck to your husband, stay strong and believe, this can be fixed x.

Oh Nick, the smelly socks nebuliser

This most likely is Pentamidine….. I was having these every 3 or 4 weeks for 3 or 4 months over the second winter after SCT number 2 as I was having lots of chest infections. 

I do refer to SCT as my Magical Mystery Tour……. Magical as it’s totally amazing what it does, a Mystery as to how it all works and a Tour as it can at times be full of twists and turns.

That’s so amazing, she’s done so incredibly well thus far, really hope she continues well. 

Sending you both hugs xxx

Hi Mike

Just gave my wife the heads up re "smelly socks" she hopes it not for too long. Maybe a bad move to tell her but I'm sure she's smelt a lot worse!!!!!!!

Thanks Moomy

It is amazing news and she is an even more amazing woman. Onwards and upwards.

Nick

Hi Nick, regarding the trial your wife has been invited to do, is it the Amadeus trial? I started this one last week. 

Hi Louise A

I've just called my wife and yes her documents that they left her to read does say Amadeus as you thought.

Can I ask when you had your SCT, what condition did you have  and your thoughts on the trial. I can't get my head around that their looking at relapse situations with this trial and the fact things are looking good at present, I can't help thinking, "are they expecting a relapse" I'm  not letting my wife know my thoughts naturally but I think this has crossed her mind.

Thanks

Nick

Just googled this trial and notice its about using azacitidine to reduce the chance of relapse. Its a little strange as my wife was given many doses of this whilst awaiting sct over a six month period. These were 2 injections into her tummy over a 7 day period and then repeated every 3 weeks, it did however keep her in remission whilst waiting. She also suffered vomiting on 3 occasions but we think that was the venetaclax which they stopped a couple of months pre sct.

Nick

Hi Nick

my journey started when I was diagnosed in Feb 2021 with high risk MDS. I had Flag-Ida intensive chemo in March/ April and then SCT on 25 June. My conditioning treatment was Thiotipa (which was part of another trial), Busulfan and Fludarabine. I am now in full remission. 
My understanding is that for me the chance of relapse is fairly high (up to 50%) so I was keen to do the Amadeus trial to try to reduce that. The treatment has recently been approved in America and I believe it has been shown to reduce the risk of relapse by about 50%. 
I’ve only been on it for a week and the only side effects I’ve had is I felt nauseous twice so took and extra anti-sickness. Of course I don’t know if I’m in the placebo or the experimental group anyway. 
They’ve said it can reduce blood counts and they can give GCSF if needed, plus they can adjust the dose if side effects are bad. 
Everyone’s journey is different and mine hasn’t lasted as long as your wife’s so far. It’s a personal decision.