Constant bad news

Hi,

I wrote on here last October over my mum who has Large Diffuse B cell non hodgkins lymphoma. She started with the RCHOP treatment then radiotherapy. On a scan after that last summer, it showed that the area where it was originally had gone but another part has appeared active. We had all the meetings with Dr Radford etc and they said the next step would be to have 2 cycles of a stronger type of chemo R GDP and then another pet scan to see if it has shrunk enough to go and have a stem cell transplant. She has now had this and we got the results yesterday of the pet scan…the R GDP hasn’t worked :frowning: and it is showing as more active (hotter).

They have now said she is to have 20 sessions of radiotherapy followed by either a autologous or a allogeneic stem cell transplant, a decision which will be made at the end of the month because they have said there is a lot to think about, as a allogeneic sct has a lot higher risks.

Has anyone else at this stage or had a allogeneic stem cell transplant?

The chances of her cure are getting slimmer and slimmer and I am really starting to panic! I can’t lose my mum!

Hi, first, she has one of the best consultants in the UK and is at one of the top hospital in world so her treatment will be 1st class and it its one of the best places for a stem cell transplant. Re treatment the may still be chemo or monotherapy options that may help her to get into remission and the has been some recent studies looking at car-T cell therapy which is promising for patients like your mum.

Re the transplant it will be a hard call, if she has a strain of the disease which is proving to be problematic and the is a high risk of relapse then an allogenic transplant is the only option and long term possibility of cure.
It does though come with some risks and whilst these sound horrendous when they have the chat, more of these transplants are being done these days and they know what they are doing.
An Auto is where she will be given her own cells back and whilst still carrying a risk it is a lower risk compared to the all.

the is a stem cell transplant group on the macmillan site it may be worth joining and posting there as the are several who are or have been treated at the Christie and who can advise on transplants there.

hopefully they will find a way of beating this disease and she is in the best hands to have that chance, so don’t lose hope yet the is still some way to go before you need to have those thoughts.

Mac site link here:
https://community.macmillan.org.uk/cancer_experiences/stem_cell_transplants_for_blood_cancers/

take care
John

Thank you John, you won’t believe how much that has helped.

She has an appointment on Thursday now (not the end of the month) as they felt the end of the month was leaving it too long, so they’ll be discussing the radiotherapy and the stem cell transplant with her then. Will have to wait and see what they suggest.

Thank you for the link, I will have a look on there.

Thanks again,
Melissa

Melissa I can’t help with information but I wanted to send you my support as you go through this terrible time. Hugs.

I’ve just had my first appointment with haemotology my diagnosis primary breast lymphoma high grade non-Hodgkin’s DLBCL I have my pet scan tomorrow then echo and after MDT will start 6cycles of Rchop anyone had cns prophylaxis my dictocr seems to think I will have to have it ge also said my NHL us rare and no data or clinical trials has anyone on here had PBL please xx

Hi Cath, it is probably better for you to start your own thread in the high grade forum, that way you can keep your posts all together and may have a better chance of other replying. Re your diagnosis the was one or 2 people who have had something similar or the same in the last 12 months, just cannot remember if it was on this site or the macmillan one, seem to think it was the Mac site.
Re DLBC thats what I had along with 8 rounds of r-chop its do-able and the effects tend to be cumulative. Make sure you drink plenty to flush the dead cells out along with the toxins and it helps the kidneys, keep a diary listing how you are and any questions as they pop into your mind, then you have everything to hand when you see the consultant which you will do at least once every 3 weeks. Don’t be to worried everything always seem scary before treatment starts and chemo is never as bad as you think.
Watchout for the R rituximab, about 50% of patients have a reaction the first time they have it and it will take a while for it to be given compared to the other drugs, if you feel itchy, get hives or a sore throat, tell your nurse straight away and they will deal with it.
any questions just ask.

John