Follicular and DBCL - trying to remain positive but so scared

Hi - I’m new to the group and I’m just hoping for encouragement as I’m so scared

January 2020 I was diagnosed with follicular which was such a shock as I’d never heard of lymphoma before and never been in hospital before except having my two children 25 years ago !!

I had the option of going on a clinical trial which involved the standard treatment of 6 x R - Bendamustine  then maintenance ( the trial bit ) if I was in CR then either have the standard 2 year Rituximab or nothing - if I was in PR then either 2 year Rituximab or Ruitximab with Lenalidomide. It was explained to me that 4 out of 5 people would achieve CR

I sailed through the chemo ( although little concerned the lumps I could feel didn’t start going down until cycle 4 ) - I was positive and felt secure as I was fit and healthy that I was going to achieve CR

This didn’t happen the PET scan revealed the tumours had decreased considerably but there were 3 “heat spots “ which my consultant explained to me would put me in the PR category as far as the clinical trial was concerned so I was randomly selected to go on the 2 year Rutaxmab/ Lanalidomide treatment. I thought Ok this is why I only achieved PR it was because I was going to do r well from this maintenance option ( I have to find a reason why things happen so I can remain positive )

3 months in I discovered a lump on my neck - this quickly got diagnosed as transformed DBCL - again ( with my fantastic husband’s help ) I rationalised that actually the DBCL was always there with the follicular ( maybe that’s what the 3 heat spots were ) and that’s why I didn’t get CR

i was put onto 4 x cycles of Rchop with the aim of having an autologous stem cell transplant at the end

Rchop was tougher than the Bendamustine but I handled it fine - the lump disappeared r quickly and the scan revealed CR !!

I went into hospital to have my stem cells harvested and that was a hiccup as there was a problem harvesting enough but I had three plerixafor injections and managed to get the required amount ( apparently the lenalidomide I’d been on can have an impact)

so all looking good for my transplant !

1 week before I was due to go in I thought I felt a thickening in my neck and mentioned it to my consultant - quick pet scan revealed 3 tiny heat spots in my neck and because they were too small to do a biopsy it was assumed they were DBCL again

it was decided for me to go on 2 cycles of R- EShap and if I achieve CR then onto my stem cell transplant

This time my confidence and self belief started wavering as I couldn’t rationalise why this had happened the only positive was thank goodness I felt it in my neck and it wasn’t deep in my body so I’d gone into the stem cell transplant believing I was in CR when  in actual fact I still had DBCL which would compromise the success of the transplant

I’ve finished cycle 1 and this one is tough - but I am losing hope for the transplant - the lump in my neck has gone down but still there and I’m so so scared I’m not going to achieve CR - my consultant has explained with all the chemo I’m having my body will eventually get resistant to it - I’ve got to have belief I’m going to get through all of this - I’m otherwise fit and healthy with two lovely children and the most supportive husband and to the outside world I’m strong and positive because that in turn makes me strong and positive but deep down I’m scared - I’m for the first time believing my options are running out and I do want to live and get through this but cracks are beginning to appear xxx