Hello everyone,
I posted here last year when my mum was first being investigated for Lymphoma and it was so helpful to speak to you all, I am hoping you might be able to help again, thank you so much in advance.
Last year my mum was diagnosed with 'Stage IIX diffuse large B cell lymphoma, on a background of grade IIB follicular lymphoma.' Her treatment was 6 cycles of R-CHOP chemo (with steroids & Rituximab). A few weeks ago she completed this treatment and had her check-up PET scan - we received the results on Wednesday and unfortunately while the diffuse large B cell lymphoma seems to have responded to the initial chemo, there is still a cluster of the follicular lymphoma 'in deep' on one particular nodule that was resistant to this treatment. The consultant said that the next course of treatment would be high dose chemotherapy, followed by stem cell treatment.
What I am struggling to understand though - is how serious this is? (I totally understand that all cancers are serious of course, but relatively speaking in terms of her outlook I guess is what I mean - my mum & dad are very much still assuming that she can be 'cured' and I suppose I am trying to better understand the reality of the situation) My mum suffers from SEVERE anxiety and so her & my dad are very reluctant to ask for details from the consultant - at the moment we are very much just trying to get her through each day. The reason I ask, is that in all the literature I have read (including the Macmillan Cancer Cancer Support 'Understanding Non-Hodgkin Lymphoma' book) low grade follicular lymphomas are often left under the 'wait & see' category and they require treatment when they are causing 'troublesome symptoms' for the patient. My mum actually responded incredibly well to her initial chemo (some tiredness but otherwise you wouldn't even know she was having treatment - still going for walks, cooking, eating etc) so as far as I understand, the follicular lymphoma that is left is not causing her any problems - so I don't know if it is worrying that they are pressing for high-dose chemo with stem cell treatment (also so quickly after having finished this initial chemo - is there something we don't know)? I have read that sometimes low-grade lymphoma cells can 'transform' into high-grade & therefore need more urgent treatment - when I asked my dad about this he did say he remembered the consultant talking about 'transformed cells' so I suspect this is what has happened, but I don't know what this means for my mum?
Also - we did know that the hospital were planning to try & start her high-dose chemo this week, but we were very surprised to get a call on Saturday afternoon asking my mum to go to A&E to have a covid swab so they could book her in later that day for further tests and that she would have to stay for 2-3 nights? There seems to be a sense of urgency but I don't understand what this means, or whether that is normal? That call sent my Mum's anxiety off the charts and at this point I think the biggest threat to her is her mental health :(
I just wondered if anyone else has been diagnosed with both of these types of lymphoma at the same time, and what their experience has been? Also if there are things that have helped you that I can maybe pass on to my mum (or get for her if they are physical things). We gave her a hamper at the beginning of her treatment with various healthy foods and snacks and things to occupy her in hospital, but I am wondering if there are specific things we might have missed, or ways of giving emotional support that have helped :)
Thank you so much everyone,
Stay safe,
Rxxx
Hi again, yes NHL can be very complicated and one treatment will not fit all circumstances and ‘transformation’ can often happen when a Low Grade NHL becomes High Grade.
“how serious this is?”...... well the fact that Stem Cell Transplant (SCT) is being proposed her team may well see it as the next step to gain long term remission due to how her condition is now presenting...... questions need to be asked to get a better understand as to the ‘why?’
There are two types of SCT, one is using her own Stem Cells but for this to happen she would have to be in a remission window for the cells to be harvested - this is an Autologous (Auto for short) - PDF here.
Or and Allogeneic (Allo for short) that uses the cells taken from a matched donor PDF here
I had two Allo SCTs as this was basically my last roll of the dice for my type of NHL and how it was presenting (Hit my name to see me story) Allo SCT is much more risky as there are more issues during and after treatment can appear..... but in way of some encouragement. I was diagnosed in 1999 with a rather rare and difficult to treat Cutaneous T-Cell (skin) Non Hodgkin’s Lymphoma. I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”
After years of various treatments in September 2016 I was told I was in remission for the first time in 17 years - and I am living the dream
Have they said what type of SCT?
SCT is used across the 60 types of Lymphomas and other blood cancers with great results so her ‘type’ makes no real difference apart from FL like my type of NHL is incurable but can be put into long term remission using SCT.
The speed that her team are moving her toward high dose chemo ‘suggests’ an Auto SCT..... but again this is a question for her team.
SCT for some can be very demanding both physically and mentally but the rewards are great.
We do have a dedicated Stem cell transplant group as this is such a specialist journey and rather different from regular blood cancer treatments.
Happy to talk more ((hugs))
Hi again, sorry I never tried to answer your last questions about supporting her in hospital. During these times this is very hard but the thread below is specifically about what people looked as important when in hospital having a SCT. Do have a look through it.
Yes me again. You may find the information available on the Lymphoma Action site, a small UK Lymphoma Charity useful as it has lots of in-depth information and run regular online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service
So this may well be a new-ish treatment.called CAR-T. There have been a few folks come through the Community that have had CAR-T as well in Lymphoma Action.
You would need your mum to tell her team that she is happy for you to talk with her team.
If your parents have a smart phone (or give them one) most consultants are happy to have a phone speakerphone so you can listen into appointments.
