Hi I am new to this forum. I hade NHL 25 years ago and had chemo/radio etc. but it returned 5 years ago and was given chemo and an autograft. It has now returned again and they are talking about an allograft. I am having real problems getting my head round it for the third time and the thought of another transplant fills me with dread. I had a rough time with my autograft and wondered if anyone else is or has been in my position and how did they cope?
Welcome to the forum and sorry to hear about your relapse.
I’m in largely the same position - I relapsed one year after my autograft. Am now having Bendamustine for a few months to get into remission before having an allograft - probably sometime early in 2016.
I agree that the autograft was no fun, but I do not dwell on how tough it was - only that I got through it and, actually, I had a very enjoyable year afterwards. The allograft may be tough, but it may not (I’ve spoken to a couple of guys who have been through it who found it and the after effects not that bad at all). Given what it offers me in terms of long term remission (or, dare I say it, cure), I try to look beyond the procedure and focus on the desired end goal of good health and enjoyment.
I wish you well with your treatment and really hope you cope well with it.
If you are up to it, stay in touch and let us know your progress.
Hi Trevor thanks for the encouragement. Definitely sounds like we are in the same boat. They were talking about Bendamustine before the transplant. They are checking my siblings for a match so that will be the next hurdle. Last time I just took each step and broke it down to small steps but now when I know how hard and how long a road it really is it feels different. Knowing there is someone else facing the same road does in a strange way help. I couldn’t imagine there are many people rushing to go back for a second transplant
Your header on the last post made me chuckle - autocorrect? If not, then perhaps a new treatment using crocodile blood!?
I’ll keep you posted using this thread on how I get on. Step one for me is to get back into remission. Had B/R on the 28th and 29th June, and after a grotty week last week am now getting back up and running again. Three more B/R sessions to go, followed by a CT scan to see if it’s gone. I’m waiting also for an appointment to discuss the allograft and get a donor search going…
Hope you’re doing ok.
That’s what happens when you type without reading glasses on! Think this word might stick! Maybe new NHS treatment throw you to the crocodiles and they eat the cancer - downside they eat you as well! Sorry to hear you are having a rough time. I will keep my fingers crossed for you. I am still bouncing around as if there was nothing wrong - makes knowing the truth very surreal.
Hope you are well.
Well, the last 6 months have flown by and I am back in remission again after 6 rounds of Bendamustine and Rituximab. Isn’t it amazing how time flies when you’re having fun! I have my donor lined up and I go into hospital on the 26th Jan for my Allograft.
I’m feeling quite confident about this, even though it will probably be tough. I’ve breezed through all my pre-transplant tests and am deemed to be in good shape - so here goes!
I’ll let you now how it goes…
All the best for your treatment. I had a very quick relapse from my first chemo earlier this year, (after 10 weeks) and now on BR. So far so good with it but docs are saying the BR is being done with a view to Autograph afterwards (terrified). I’m rolling with it just now but really need to have a good chat with docs, no-one has explained why they are looking at this rather than R maintenance afterwards. I haven’t asked because mentally I was struggling just to be back on chemo, never mind Autograph and I think they saw this in me so didn’t venture too far lol, saying it would be best to discuss it in full further down the line. Any insights from your experience?
Wishing you well
Sorry to hear you have relapsed. I think that a transplant is considered after a relapse rather than rituximab (or anything else) as it’s deemed to be the best next step towards long remission. I guess the thinking is that you have relapsed quickly, so something stronger than rituximab/chemo is needed and the purpose of the current chemo you are on is to get you into remission so you can have the transplant. I know a few people that had an allograft after first relapse as they had a matching sibling - so maybe that’s a possibility for you also? If I had a matching sibling I may have gone for an allograft instead of the autograft.
As for the autograft itself, while it wasn’t pleasant, it wasn’t as bad as what I was expecting. I look back on it as something I could handle again if I needed to. So I understand your nervousness, but it may not be as bad as you think and it gives you a better chance of long term remission than chemo alone. Make sure you do chat to the docs about it, though, to understand the risks of the transplant (both during the transplant and also in the following years) and the risks of not doing it (at the end of the day, it will be your call what you do)
Good luck with the BR and I hope it is effective for you. I found it to be a good drug and I tolerated it quite well. Good luck with getting your head around the transplant and let me know if I can help unravel any of the info for you - I often find it good to talk to people about their experiences rather than trying to make sense of all the literature.
You will have no idea how your reply has helped me! I agree that it’s good to talk about experiences, good to share (but not always to compare, we are too individual)
Allo has not been mentioned but I was not in a good enough place to discuss any type of SCT. I am 59, have 4 siblings, aged 65, 72 and 73 all well. Also one at 80 who is in poor health. I doubt that age is on our side but I don’t know anything about suitability. Aside from this, I only have contact with the 72 year old, feel this is not a likely option.
What you have said reinforces what I have read and I expect this is what docs will say. I am more mentally prepared to deal with this now, expect scan mid February and will have full discussion with docs after that. Phew!! Its taken a bit out of me to get this far and I’m usually much a strong person.
So far BR has been good to me, lets hope it continues. Just worry that BR doesn’t work either.
Anyway, I wish you all the very best for your treatment next week. I am in on 26th and 27th for BR and will think of you. Please post on your progress if you can. Hope
Hi Hope, Katie,
Just wanted to let you know that I have had my allograft and am now recuperating at home. The transplant itself was on Feb 4th (I was in hospital from Jan 26th until Feb 22nd). Overall, it went well and I didn’t suffer from the side effects they worry about such as sore mouth/digestive system and bad infections. I did get a couple of fevers that they needed to treat with antibiotics, and a few other bits and pieces, but nothing major at all. So, the hospital stay was more boring than anything else. I am glossing over it a little bit, but if you want more detail just let me know (I also maintained a blog throughout the transplant that gives a good idea on how I felt on almost a day by day basis - lynchoma.blogspot.co.uk).
I am now two months on from the transplant and, other than some fatigue, I’m feeling quite well. However, because I am still on immuno-supressants, I need to be careful about going out in public. Once they start weaning me off those (next month, I believe), we’ll see how the graft vs host battle goes and, ultimately, how well the graft vs lymphoma is going.,
Anyway, hope all is going well with you and you re coping and responding well to your treatment.
So pleased to hear from you and that things have gone well for you, what great news! You have been lucky not to have had too many problems whilst in hospital and hopefully will go from strength to strength now. You must be looking forward to getting your life back.
I have had 4 rounds of BR and will be scanned again soon to see if we stop at 4. I have had my stem cells collected too so next step if scan is favourable is to set the balling rolling with the transplant. Possible date being muted for early June. I have still to meet with the transplant team though and they may have a different view on the process so we will see. BR has been kind to me, not too many problems thankfully.
Re the immuno-suppressants, are they only given for donor transplants? Anyway as I said it is great to hear you are on the mend, please keep in touch on your progress. I will post on mine as things progress.