Very late Hodgkins relapse

Good morning and welcome to the Mac Community although not great what you have found us.

I did see your post last night but was rather tired and most likely would have given you a nonsense answer .

I don’t have HL but gab me lived with a rare type of NHL for 21 years but I have had two Allo SCTs with cells from my brother - rather long story but you can hit my community name and have a look.

This is a frustrating relapse after so long. I don’t have answers with regards to treatments but I am sure that some of the group will be along. I will tag moomy as her lass had both an Auto then and Allo SCT and is doing rather well with it.

We do actually have a dedicated Stem Cell Transplant Group where you may post as well as we have lots of folks look on but don’t post. 

Always around to listen and help out as best as I can.

Hi , 

and another welcome, Mike Thehighlander tagged me but I don’t get any notifications from the site (nobody knows why!) 

The usual track after a relapse (and as yours was late it sounds as if you do respond fully to chemo) is some more chemo to check the cancer, and an autologous (auto for short) stem cell transplant, that is, using your own cells to recover after some more rather hefty chemo. It’s a much shorter process than the 6 months or so that ABVD takes, but can be rather hard graft! 

Mike has suggested you join the the stem cell transplant group as the conditioning and so on is more challenging, we are both regulars there too. Actually it was me who asked Admin to set up that group as the discussions there are much more specific. 

Ask anything you wish,  no question too daft, but to reassure you, it’s do-able, honestly! Our lass was a hospital phobic and she coped! 

Hugs xxx

Hi , not sure if moomy noticed that you did have an Auto SCT way back. Her lass eventually went on to have an Allo SCT and this looks like it did the trick - hit her community name to see their story.

Oooops, thanks for correcting me, Mike! No I didn't notice........but yes, an allo may well do the trick, its tougher as being a longer illness, potentially, with drug management after the SCT, but again pretty do-able. First they need to get you to a good, lasting remission though. Sometimes this needs experts to chip in with ideas of what to try, worth asking your team to talk to other teams to get best ideas. Some may use a regime called ICE which is pretty tough, a newer, easier tolerated regime is BvB, one of the newest drugs (which was the only drug in over 7 years of trying that worked for our lass, Brentuximab Vedotin, the Bv of the combo) plus a really old chemo drug, Bendamustine (yes, developed from mustard gas!) 

Hugs xxx

Thank you for your response, I’m glad to hear that you are doing well and encouraged by your story, thanks for sharing 

Thanks for your reply, yes I’m wondering about an Allo now - but still waiting on the results of the biopsy. My original haematologist had my brother tested as a potential match -  after the auto - but was not a close enough match now wonder if she suspected that this might happen... unfortunately she left and moved to another hospital out of the area, my local unit has been downgraded- another concern for me. I’m so pleased to hear that your daughter is doing well and that there seem to be more options for treatments now. CT on Friday.

thanks for the hug xxx