LD B cell Non Hodgkins Lymphoma refractory

Hello,

I am 25 and my mum is 57, a very fit and healthy lady with no other health issues.
My mum was diagnosed with Large Diffuse B cell non hodgkins lymphoma last summer (a major shock as she had no symptoms - she went to the doctors after banging her stomach to which her belly button swelled - this is when they found a lump…) she had the RCHOP treatment and then radiotherapy, which all ended January this year, since then she had undergone multiple pet scans due to reports having certain wordings and phrasing we were concerned about. Her results were on Monday.

They told us that from the last pet scan, where a few small area where active, this has shown to have grown on her most recent scan, meaning RCHOP wasn’t fully successful is killing the tumour completely. It is now growing, there now needs more treatment.

We had a meeting at Christie’s in Manchester yesterday with Dr Gibb and Prof Radford, where they explained her options. The next step is she will be having 2 cycles of the DHAP treatment and then another pet scan. (during this time they will check her organs to ensure they are healthy enough and harvest stem cells). If the results of the pet scan come back negative (meaning the tumour is still there but has shrunk so no longer positive) then she will continue on to have the high dose chemo along with the stem cell transplant, where she will be hospitalised for approx. 4 weeks.

My question is to anyone/everyone, does anyone know what happens if the pet scan comes back as positive? I am ssumming this means the DHAP hasn’t worked, so they will possibly try another chemo? (and not do the high dose and stem call?)

Another question is, has anyone had the stem cell transplant and it be successful in curing this horrible disease?

I am just looking for a bit of clarity and would like to find someone in the same situation?

In speaking to the consultants last night, they sounded very concerned and mentioned that the statistics are not particularly great for this scenario. But I want to be positive and hear from people who have had success from this?

Thank you,
Melissa!

Hi Melissa

I only know about Hodgkin’s, because that’s what I have, but I’ve been prepping for a stem cell transplant at Christies too so there is some overlap. For Hodgkin’s stem cell transplants are the way to go for long term cure of relapsed disease. It is possible to get into remission again with second line chemo, but the lymphoma tends to come back eventually so a transplant is needed to “consolidate” the remission.

The lymphoma association have some info online under the treatments section and they have a booklet called “autologous stem cell transplants” that you can order a copy of. Your Mother will get an appointment with Dr Bloor (the transplant specialist) soon, just do a bit of reading before and come in with questions about the stuff you are still confused about pre-prepared.

For Hodgkins the success of the transplant is very dependant on being in complete remission when you have it (I know it sounds daft needing to have more treatment if you are in remission) and they won’t go ahead if there is only a partial remission. Unless the transplant is from a donor, in which case a partial remission is okay. I’ve been struggling to get into a full remission, so I’m looking at having a donor transplant now rather than a transplant of my own cells.

Collecting your own stem cells isn’t too bad. The hardest part was getting the needle in, then I just had to sit still for 4 hours. There are some lovely dedicated transplant nurses in the haematology day unit and they will take care of everything.

Macmillan have some forums in their online community and there is one group specifically for stem cell transplants for blood cancers which gets more activity than this forum. Anthony Nolan also have a lot of info, but that is only relevant for a transplant from a donor.

Cog

Hi Melissa, your are in good hands as Prof Radford is one of the best, they are right to advise they get mixed results treating DLBC and a stem cell transplant is the best route. The only question I would ask is should it be RDHAP as rituximab is known to work well at helping treat B cell NHL, unless they have looked at the genetic and molecular structure of her disease and they don’t need to target the CD20 protein.

Take things a step at a time and a transplant is do-able for most people especially if they are reasonably fit, I have come to know many over the years with NHL and most are still doing well.

john
The are a few trials running and the have been several recent reports looking at alternative treatments when dlbc patients relapse, it may be worth discussing or asking did they look at any alternatives and finally always ask what is plan B if plan A does not work.

Thank you for your comments Cog. I will be sure to look at this booklet beforehand.

Good luck with your transplant, I really hope you get the results you’re looking for.

Hi John,

Thank you for your response.

Yes sorry she is having RDHAP, my fault, I missed the R.

I do have many more questions, so I think I will note them down and take them with me next time. I just found the other day when we were speaking with Prof Radford, he was getting a little impatient, so felt I couldn’t ask all the questions I had, as I was trying my best to soak all what they were saying along with trying to understand it all.

We are just waiting for my mum’s appointment to come through now as to when she will start the RDHAP treatment. Hopefully it will be soon.

I will keep updating on here when I can, as it really does help speaking to people who are going through similar situations and maybe speaking to people who know a little more than me to help me understand.

Thank you!

Hi, I am surprised he came across that way, as everything I have heard and know about him is that he very much puts the patient first, though he is heading towards retirement, who knows.

Yes we are all here to help you so use the site as you need to and ask any questions, those we can we will answer and when we don’t normally someone can steer you to find an answer.

take care john