Relapse looking for advice

Just been told that I have relapsed from follicular lymphoma i been told i will have to have intestive chemo and stem cell transplant I’m looking info and any advice please

Hi Natty, sorry to read that your FNHL as flared up again, have they explained why they think a SCT is the best way forward as some people have a number of treatments before getting to that point.
The is a good group that is more active on the macmillan site that for blood cancer stem cell transplants and the are a few who have had auto transplants for fnhl.
link https://community.macmillan.org.uk/cancer_experiences/stem_cell_transplants_for_blood_cancers/

An auto is where you get your own stem cells back and an allo is where you get a donor’s cells.
With an auto they will need to get you into remission, then they harvest your cells, then you go in to hospital, have a conditioning chemo that wipes out your system and then they give you your cells and the recovery starts, somewhere between day 10 and 15 post transplant is normally when the neutraphil count is back to around 1 and thats when they discharge you.

have they told you which chemo regime they are giving you next as the is a range of options they can use.

I have not had a transplant but have read about them and talked to many who have been through them for various types of lymphoma and whilst its tough and may sound scary is do-able and they are well versed in the process now.

If I can help, happy too, you can also ring the helpline here, they will talk you through it.

best wishes
John

Thanks for your reply I’ve been told today that I will have 5 days of rive to start as inpatient then go home for a week then go back in more chemo and transplant worried about side effects but one day at time

Hi Natty

Just seen your post!!..I’m sorry to hear, chemo has given me nausea, awful mouth taste and tiredness with Lorazepam helps me sleep i’m also taking Septrin and Acyclovir daily. Good luck to you and I hope your things will work

Has anyone else had this I had radiotherapy on 4 sites last August but all are growing,cat scan on Tue 9th then. decision which treatment next .Had rcvp 5years ago maintenence rituximab.Does anyone know if they put you on watch and wait again for relapse or do they just get on with treatment.

Hi Natty

I appreciate everyone will have a different experience but I’m happy to share mine which has not been bad at all.

I’ve very recently had an auto SCT and was in Hospital for just under three weeks in all, including the chemo part where I was only popping into the unit as a daycare patient

I had 6 days of LEAM then my stem cells given back on day 7. It was manageable until I got to about four days after the transplant and felt really under the weather and nauseous as a result of the melphlan, anthough your regime may not include this. I was then admitted to hospital proper with an infection which they stamped on straightaway with antibiotics delivered intravenously through my PICC Line. I had various antibiotics and blood transfusions although none carried side effects.

On day 14 I was deemed ok to leave as my neutrophils were up above 3. I’ve been home 8 days and was hit by a chest infection on arriving home, which I resolved through strong oral antibiotics, albeit I was laid up in bed for most of the first 6 days. I’ve regained an appetite which I lost for a couple of weeks (plus half a stone…and about half the hair on my head, but thankfully nowhere else…) and am beginning to very gently start to do things around the house and even get out.

As the medics suggested, fatigue would be the main thing I would experience and it comes in the form of slight breathlessness and/or dizziness after any form of mild exertion like walking or climbing stairs. It’s early days I appreciate on a fairly long path but I’m hoping to start a little work from home and maybe even go back into the office by Christmas although it’s wait and see.

I hope this may help give an insight and am happy to answer any further questions about detail of side effects etc with you or others in a similar position but you’ve possibly had your own experience by now.

All the best