NHL T-Cell - experience with Allo SCT from donor registry

Hi again  and good to see you have navigated to our little corner but sorry that you may be on the SCT Rollercoaster,

You have seen that my brother came back as a match and he has never let me forget it...... but the stem cell register is world wide and it can take time to search for the best options available...... but it’s important to understand that the match does not have to be a perfect (10/10) match.

Its also interesting that my team could not get me in remission so I went into both my Allo SCTs with active cancer cells, but we were rolling the dice.

I am sure that some of the folks who received cells from the register will be along soon.

Thank you again Thehighlander,

Yes, I didn't realise they would proceed with a SCT if there are active cancer cells. That's interesting. I guess it all depends on risks, and other factors. But thank you, that's useful information.

Hi ,

for an auto SCT the best results do indeed come after a lasting remission has been gained. (Daughter was rushed into it and my guess is that she wasn’t fully in remission, and it failed) 

The register - Anthony Nolan - liaises with similar ones worldwide as Mike says, and it seems many donations come from Germany, like our daughters, since it is expected of them that they register (they are given a paid day off to do so, and another if they are called to donate) 

I hope all goes well for you, the chemo leading up to it is tough but do-able. Keep posting, no question too daft!

Hugs xxx

Hi moomy,

Thank you for the insight and support. If I understand correctly, your daughter did an auto that failed, then an allo from a German donor? I wonder how common doing two SCTs is? It seems a very tough procedure to repeat.

I've read the chemo is horrid, but it's much better than the alternative.

Hi again , 

she had a few years between auto and allo, her first trial drug kept her HL quiet, it didn’t really spread much at all, so she had almost 2 years of fairly regular monitoring. She was on tour a lot during that time, lots of laughter and fun; oddly enough that helped too, we think. She was certainly also keeping pretty fit. 
Then her second trial which did very little except give her a horrible all-over raised itchy and sore rash. It took some time to get better and then her skin was rough, scaly and swollen. We tried all sorts, in the end a bio oil helped. So all that took some time, in the meantime I had heard about Brentuximab and asked her consultant about it. While he was asking for it to be granted on compassionate grounds she had to have had Gemcitabine, so she had a couple of doses while permission was being granted. As we suspected the Gem didn’t do much, but also as hoped, Brentuximab got her from lots of HL to nothing at all in 4 doses. At that point she was still pretty well, had tried to keep as fit as possible all the time. So she was in the best possible physical state for the allo as possible. And it’s held that remission now since 2011. Since she’d already had an auto they did a reduced intensity chemo for the Allo; the theory being that as her HL didn’t really respond well to chemo, and the full chemo would be too tough since she’d already had some of those drugs, they would rely on the donor cells to keep her free, which they have. 
lots of decisions which her team supported her through, but Professor Radford did strongly urge her to do the allo, as he said Brentuximab was still so new they didn’t know how long a remission could last.

hugs xxx

Hi, I had an Allo stem cell transplant on 28th February 2019 at Leeds St James Hospital. I had been diagnosed with Acute Lymphoblastic Leukemia (common in children, rare in adults), on 30th July 2018 and immediately underwent four rounds of chemo etc which got me into remission. Five suitable donors were found (very luckily), and all I was told was a fit male of 38yrs was deemed the best choice for me. I had very few reactions during the treatments before the transplant took place but was completely wacked out afterwards for a few weeks. From leaving hospital in a wheelchair, I am able to walk miles each day, continue with my daily routines etc. I have various side effects such as dry skin and flaky scalp but nothing that stops me from carrying on. It was a scary time for everyone around me as well as for myself but it was well worth it. I wish you all the luck in the world, the medical staff are absolutely brilliant and will discuss any fears or anxieties you have.

Thanks again for all that detail moomy.

It sounds like you are very much up to speed on all the treatments available beyond what's offered. I guess that's something that comes with the territory and experience.

Hi Shelleyyy, thank you for the response. It sounds like you were lucky to have so many donor options, which I suppose means a better chance for a match, which is great. I'm definitely not looking forward to putting myself or my family through it, but encouraging to hear from people coming out the other side of it.

Hi again ,

yes I was daughters advocate (am a retired OT so know how the NHS works though I’ve learnt an awful lot more about Hodgkin’s and stem cell transplants than I ever knew before retiring!) now as well as then, oddly enough Professor Radford was already making those links to the USA before I asked him about Brentuximab. I’d heard about it as I followed Dr Anas Younes on Twitter, he had been one of the research team and was finding it getting good results. John Radford was a bit astonished and asked me how I knew. But once he realised he was pressing ahead anyway. 
Hugs xxx