Follicular Lymphoma - relapse within 18 months of first line treatment

FormerMember over 4 years ago

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Hello everyone,

I am 49 years old and was diagnosed with stage 4 FL 2 years ago. I had 6 cycles of RCHOP and had a complete response. But at my 18 month PET CT Scan it showed a Deauville score of 5. I was sent for a needle biopsy (as there were no easily accessible nodes to do an excisional biopsy) but there was not enough tissue so it was inconclusive. My consultant says I will be discussed at the next MDT but that it is likely they will recommend high dose chemo with a stem cell transplant. I don't know if this will be an autologous or allogenic one; 2 years ago there was cancer in my bone marrow biopsy so it might be that I will not be able to do an autologous one now.

I would like to know if anybody else has been in this predicament? I do not want a stem cell transplant at all. I am alone and do not have the family support for the recovery period at home after a transplant. I also want a second opinion - hopefully at UCLH or KCLH because they both have a lot of clinical trials. Really I do not want a treatment that means I am so unwell that I cannot look after myself. RCHOP was tough but aside from a few days per cycle, I was fine and even those rough days I could sort myself out (if only just).

What happens when a solo person needs a stem cell transplant and does not have family to look after them?

I would really value any insight people can give.

Thanks,

Theo

greg777 over 4 years ago

Hi Theo,

I am really sorry to read about your relapse and that you will need to go for an SCT. You may still be able to have an auto as long as they can give you some treatment to reduce the cancer in the bone marrow beforehand. An SCT is not something anyone would choose to do, but it is definitely doable. The hospital will definitely keep you in for the period of time you are most poorly and a lot of the rest of the time it is best for you to isolate so it should not necessarily be a problem that you live alone. If you are concerned about it, I have heard that some hospitals have off-site accommodation nearby to the unit for patients, particularly for the first 100 days which is often the most risky period. So you may be able to access that to help make sure you have the support you need.

I hope the above information is helpful in some way and please feel free to ask any more questions / share concerns you might have about the process - there is a lot of experience on this forum.

All the best

Greg

Thehighlander over 4 years ago

Hi again Theo, sorry for not catching up with you.

There is a single man in our local Heamatology Support Group who remarkably has the same rare type of Skin NHL as me and late last year he followed the basic same Allo Stem Cell Transpalnt Route that I had pioneered back in 2014/15 and he is doing great.

The thing is he has no family, stays on a croft (farm) in the back of beyonds in the Highlands and did ok, yes, he had some initial challenges but so far so good.

Mike

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

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Follicular Lymphoma - relapse within 18 months of first line treatment