Diffuse B cell non hodkin. Lymphoma stage 3

Hi and welcome to this little corner of Online Community, although I am sorry to see you finding us and so sorry to hear about the challenges your husband is facing this is hard on everyone.

Has Stem Cell Transplant (SCT) been talked about as ESHAP is often used as a salvage treatment looking to go down the SCT route?

I had a totally different type of Skin NHL (see my profile) so back in late 2013 it was hit hard and I went on to have two SCT with cells from my brother.

You may want to put some information in your profile as this can help a lot. Click here to see how to add details as this helps everyone to see a little about you and how best to reply to you.

Hi there 

the consultant said stem cell transplant is only if in remission and not offered if cancer is still active I believe ! He also said it can take about 6 weeks to organise and my husband didn’t have 6 weeks where they couldn’t give him any treatment 

Thankyou for your reply 

Jackie the jester 

I am sure that some of the group members will be along. I went into both my Allo SCTs with active cancer cells as the chemo was not doing the job and my clock was running down....... but there are limitations as to how much active cancer cells can be fought by the new Stem Cells. Indeed 4 to 6 weeks is about the shortest lead time for going into SCT.

I am sure that johnr will pick up on your post as he has some great knowledge in this type of NHL having been diagnosed 10 years back.

We are always around to listen and help as best as we can.

Wow thanks for this gives me Some comfort when you say John was diagnosed 10 years ago

Remember you can see our stories by hitting our Community names....... I was diagnosed with my Cutaneous T-Cell Lymphoma (Skin Lymphoma) (CTCL) why back on the 10th of May 1999  but I am still around...... there is always hope until there is none ((hugs))

Thanks i’m just off up to the hospital to visit a hubby  but I’ll take a read at yours when I come back as it looks a fab read

The is a hard time and information is key so remember - always have your questions on paper ready for the first opportunity to ask questions........ one thing I would be asking is "Has my husbands case be circulated to other experts in this field to gather joined up thinking"

If your husband is being treated in a Top Cancer/Heamatology Centre then good...... Our Local hospital in Inverness is great but they did understand their limitations and put my case out across the UK and indeed abroad and with the information we received we made a plan that we did follow.

I did go down to Newcastle to see one expert in my condition for a second opinion and was about to go to Guy's and St Thomas' but the consultant there said no need to come down as he had enough information to give his advise.

((hugs))

Hi Jackie, I am just on my way out so will try to find some more info to help with the discussions with his team, but for now what's key is that they understand the presentation/molecular structure of his type of dlbc as they need to use drugs that specifically target the mutations in the cell and these vary for this type of disease. The have been a series of trials and some still ongoing where they are adding drugs to what I would call the older chemo combination treatments and the may be something amongst them that may be right for him. As Mike has said its also important they consult on his case with the top centres/consultants in the UK and around the world, as it could be this is still beatable and the trial drug was just the wrong drug for his disease.

here is a list of current trials at the christie and you will see how each is targeting different aspects of the disease, that's why I said earlier understanding his disease should lead to a personalised treatment. The information shared about a transplant is correct as with this type of lymphoma if your not in remission at the time of transplant the is a very high chance of relapse.

The other bit of advice is ask the basic questions too as to why this treatment and what were or are the options as treatments like R-ICE or R-DHAP which have been used for many years may be options. 

The positive to finish on is when treatment works with blood cancers it clears the system no matter where the disease is presenting.

hope this helps

christie trials link

https://www.christie.nhs.uk/patients-and-visitors/services/lymphoma/lymphoma-research/find-a-clinical-trial/clinical-trials-in-non-hodgkin-lymphoma/clinical-trials-in-diffuse-large-b-cell-lymphoma

plus you can ring lymphoma actions re trials and they can provide information on whats available where.

John