Hi anyone and everyone
I am due to have Brentuximab to try and get me in to remission for a stem cell. I had gem ox salvage but I still have a stubborn area in my spine which needs an extra kick!
Anyone else been in a similar position? I know this is a quiet forum but worth a try!
Hope everyone’s had a great Easter break.
Elena X
Hello Elmambo,
I do not have Lymphoma, but my BF does, and he had Brentuximab combined with Bendamustine as his salvage. After that therapy he had areas above and below the diaphram still there. One spot even got larger and equally metabolic. They gave him Etoposide for the extra ‘kick’. I don’t know how they decide on what chemo to use, but the Brentuximab really worked on his large 12 CM tumor… he had infusion reactions with the bendamustine so he couldn’t have it… he only had 1 dose of that, so maybe that’s why he had cancer still after his treatment. He’s in the hospital now… having his ASCT (just got done with BEAM HDT yesterday) Today is his day of rest. Infusion of stem cells is tomorrow… I hope you are doing well… My BF tolerated BEAM pretty well… better than I expected (he really doesn’t do well with things dripping in him)., he’s a pain fighter, not so much a mental fighter… but… so far so good. I wish you the best of luck! hugs
Thank you so much for your kind reply. How is your partner doing after the transplant? Was it his own cells or a donor? All the best! X
Hi Elmambo,
How did you get on with the Brentuximab?
I have just finished 5 treatments of Brentuximab to try and get me in remission for an Allograft SCT. I have Classic Hodgkins. I had a PET scan after 3 Brentuximab treatments which showed I had responded well but still had a hot spot in my chest. I had 2 further treatments but the latest PET scan shows no change from the previous scan so the Drs have now put me forward for the SCT asap, hopefully in the next 4 weeks. I’m now quite nervous about it as I am still PET positive which I didn’t really consider as an option before the start of the Brentuximab treatments.
Brentuximab has been the easiest chemo I’ve had so far, I’ve had a rash on my arms and feel quite tired with it for the first week after treatment but fine apart from that, I have even been away on holiday! Having had an autograft SCT already I have a good idea what I’m in for with the allo so trying to make the most of the next few weeks.
I hope you have had a positive experience with it.
Lucy x
Lucy, I believe Elena is having her scan sometime this week coming so does not know the outcome yet.
Do you post on the Macmillan site? the is a good stem cell transplant group there and they will be able to offer support and advice, has the been any discussion of other treatments to try to get you into remission or are they saying thats a challenge, also may be worth having a second opinion from The Christie and Dr Radford to see what is best for you.
Hi John,
Thanks for your reply. I haven’t come across the Macmillan transplant group, I will have a look at it.
There has been no mention of another form of treatment to get me into remission only that I could have radiotherapy after the transplant if necessary. I have an appointment with the transplant doctors next week so I will ask them then. My disease is usually responsive to chemo, this was the first PET scan I’ve had that hasn’t been negative after treatment, I just can’t seem to stay in remission for longer than a few months. I am in Glasgow and attend the Beatson which has been brilliant so far. I know my consultant speaks with various other doctors in hospitals around the country to get opinions and advice so I feel pretty confident they are doing all they can but it’s good to hear other patients view points.
Thanks again,
Lucy