Relapsed Non Hodgkin Lymphoma

Sorry to hear the challenges your husband is having.

My type of NHL was very different (see my profile) but after a lot of treatment I went on to have an Allo SCT but I relapsed within 6 months so went through a second Allo SCT - it was a final roll of the dice for me.

No idea what the consultant is saying about not committing to a terminal diagnosis but I was told that I was on my last treatment options so they did need to work.

They will only delay as long as it’s safe to do so but as you say the NHS is challenged at the moment.

There are lots folks still going through chemo at the moment including going into SCT.

I am sure that some of the others will be along with their take on this.

((hugs))

Hi, sorry to read your husband has one of the stubborn types of NHL, mediastinal is normally a B cell type of lymphoma, non specific can mean several things and I hope they fully explained that at the time. It would be good to compare the 2 biopsies which they may do to see if the is any change and if they are not it may also be worth asking if the genetic profile of the biopsy can be done to help them decide next steps or even ask anyway.

Is he being treated at one of the top cancer centres as you may find communication may be better, as the answers to your questions should form part of the discussion they are having with your husband and yourself. 

To help with a steer over the years in the HL and NHL groups the have been people who would not normally have radiotherapy, have had it as part of a salvage plan, sometimes to try to manage the disease and bridge the gap to a transplant, often with chemo as part of the plan too.

Re relapses they have happened quicker for some and some treatment plans include an auto then 3 months later an allo transplant.

The question re terminal can only be answered by the consultant and we would be second guessing what they were thinking which is not helpful.

Consultants should always keep patients up to date and explain fully each step at each point and what follow up actions are to be taken and whilst these are unique times with Covid 19 dominating hospitals and the medical profession that should not be impacting on how your husbands consultant works with him and communicates with him. 

hope this helps a little and keep pushing for answers and if it is B cell as if Car-T treatment may be an option? 

John 

Hello I hope you are safe.I saw your post and the page about Non Hockin Lymphoma.My father has been diagnosed with this type of cancer 2 years ago.We live in Macedonia.He gets ABVD tHERAPIE AND IS FEELING BETTER NOW.bUT THERE IS ONE Problem.He has very bad neurological symptoms.2 are very bad.First he walks similar like a robot and has a very big issue and also his voice is gone.He only talks with whispering or very low voice.Is this consequence from the Lymphoma or there is another disease? Thank you.

Hi marijabeauty I have sent you an answer on your post in the HL Group.

Hit the link below to see my reply https://community.macmillan.org.uk/cancer_types/hodgkin-lymphoma/f/hodgkin-lymphoma-forum/199087/abvd-side-effects?Page=1#1452913

Keep safe.