Deciding against stem cell transplant for lymphoma.

[VivaLeBeaver]

Was talking to my dad last night and he's saying that his consultant is now discussing stem cell transplant for his lymphoma. Without this treatment he will die.

Dad says he's not sure about having the treatment as another patient on the cancer ward told him he'd be an inpatient pretty much for a year....maybe two days home leave a week. Dad doesn't like the idea of spending that much time in hospital especially as there's a chance it might not work.

I can see why he wouldn't want to spend what time he has left in hospital.

Is he right though that he'd likely be in hospital for a year?

I've told him he needs to talk this through with his consultant as it might be different for him. A year sounded a long time, I'd assumed a few weeks.

Sorry about your dad, Viva. He doesn't sound quite right to me (my friend has lymphoma).

Appropriate info here? ... www.cancerresearchuk.org/cancer-help/about-cancer/treatment/transplant/after-your-marrow-or-stem-cell-harvest

Viva - sorry to hear about your Dad :( I'm sorry, but I don't know the answer to you question - just wanted to send you a HUG x

There is A LOT of hospital time after allogenic stem-cell transplant, yes. Even after release, your infection risk is huge for a while post-transplant, and you must go back to hospital often for treatment and if you take any infection.

A lot of people hale it as a miracle, but when it comes to cancer, too many times, it's a last-ditch effort and sorry to say, it is risky. It can be argued it's trading one set of problems for another, depending on the type of cancer, and it's no guarantee against relapse.

Also, the conditioning chemo for allogenic stem cell transplant is heavy duty. It can make you very sick and/or kill you - I know now of several adults, one personally, who ultimately died from it as they were so weakened.

Autologous one, of course, your own cells, somewhat different story.

TBH, depending on my age, if it were my only real option, I might decline myself.

He does need to speak with a consultant, but he should also be allowed to make his own decision about it.

Sorry he's in this situation.

My friend had this. She had no symtoms, but was told it was incurable. She had one round of chemo and then a stem cell transplant which involved v v v high doses of chemo. She was in hsopital for month, very ill from the treatment and in near isolation. She was discharged having been cleared but died two days later at home. Her sons refused an autopsy but it was as if her body couldn't take anymore. She could have lived a long time with the disease, or not. The stem cell transplant could have prolonged her life but it was never going to cure her and in the end, i think it killed her. She died six months after diagnosis and was fine at diagnosis but had endless chemo. So i understand ypou dad's reluctance. Sorry that you have to go through this.

Thanks guys.

Slambam, that link talks about been in isolation for a few weeks which sounds better. The other patient my dad spoke to said he'd had to be in hospital for months before the transplant preparing him (I guess with chemo) for the transplant. But not everyone might need that hopefully.

Dad is 69. The age cut off point for it is 70 as I suppose after that age it isn't cost effective for the Nhs to offer it.

Expat, they're talking about using his own cells.

Stella, sorry about your friend. I hadn't really thought about the risks of high dose chemo weakening and potentially killing someone.

The conditioning round for allogenic stem cell transplant is v v v high dose. It's a week long, in patient. The drugs, they are v v toxic to completely annihilate the immune system, all of it.

Even if you do well, again, I lost a mate just a couple of months ago, the infection risk is high. She died of secondary infection.

You have to go in quite a bit afterwards for drugs. Any infection for a while afterwards can be life-threatening. Graft v host, of course, can kill.

It is also not a guarantee against relapse, so it is not always a straightforward decision, sad to say.

For us it was, because of our daughter was a child, but again, perhaps not so in someone who might be older and/or able to make decisions about time v quality of life and risks.

It's a shorter course on conditioning chemo with your own cells, but again, it's not risk free and he really needs to discuss.

'I hadn't really thought about the risks of high dose chemo weakening and potentially killing someone.'

It's pretty bad, even with your own cells. Those drugs can seriously weaken, particularly the liver.

'The age cut off point for it is 70 as I suppose after that age it isn't cost effective for the Nhs to offer it.'

It may also be that the drugs for even autologous transplant are so high dose. The patient also has to have all their major organ function tested, some do not pass these tests, to ensure they can even withstand the chemo.

Expat, I don't think I'd realised that Ailidh had had a stem cell transplant. I can definitly understand why it makes more sense to try it for a child/younger person but not so much at my dads age.

She did. Her cancer was not curable with chemo alone. Unfortunately, she died of secondary infection. I have since come to know so many whose loved one died similarly . It can and does work for some, particularly those who require it for a non-cancerous condition. But it is risky particularly in a person who has cancer and/or has undergone previous cancer treatment and requires a good enough deal of treatment even if successful. And the conditioning chemo even for autologous transplant is serious.

My dad had this type of transplant at 46. For him they had cured the cancer, but it was extremely likely that it would come back in a couple of years in a very aggressive form that was unlikely to be treatable. He considered all his options carefully (he was a doctor himself) and ultimately decided to go ahead. Things went well at the beginning but, despite everyone been careful, he ended up contracting swine flu and it was downhill from there. He eventually contracted septicaemia and he died just before he was 48.
Before he had the transplant he said he wouldn't have gone through with it if he was older than 60 due to what it entails. I can understand why your dad does not want to do it at his age. If I was him I would just want to enjoy the rest of my time rather than spend it all in hospital with, I'm sorry to say, an outcome that is unlikely to be positive. I can understand how hard it must be for you and your family though. X

Yes even if he isn't in hospital all the time over a year, he can expect to be constantly in and out.

I'm sorry about your daughter expat

I would like to add a positive story if I may.

I was diagnosed with an uncurable blood cancer last year. I endured several months of gruelling chemotherapy before having a stem cell transplant in November 2012. I 've just turned 41 so much younger than your Dad and my own stem cells were used.

I won't lie, it was bloody hard both physically and emotionally. Nothing prepares you for how sick you will become or how exhausting it can be. I spent 4 weeks in hospital and had complications during this time. But I made it through, Im still here, I am in remission for now and do not regret my decision to go ahead with the transplant. It may have given me up to 10 years of life that I may otherwise not have got.

My experience of transplants do not lead me to believe your Dad will be a hospital inpatient for a year. Full recovery can take up to a year, for immunity to become normal and to get back to complete normality. After 4 months I feel really well though I do get tired a lot. I see my oncology team every 4 weeks for a check up, tests and some follow up treatment.

I know everyone has different experiences and stories to share. I am so sad and sorry for those who lost someone because of an unsuccessful transplant.

I think your Dad needs to speak with his oncology team, gather facts and research. It is his decision if he goes ahead or not , it is not an easy choice to make.

If you want to discuss it further then I am more than happy to talk with you, just send me a pm.

Sorry you are going through this Viva. All love to you and your dad x

Your dad needs to talk it over with his doctors rather than be out off from another patient. I've known people in hospital for a long time (but not a year) and I've known patients who are home 3 weeks later. You wouldn't be 'allowed home for a couple of days' at first as he would have to be in isolation. It's tough but he needs to find out the real facts rather than hear say. Good luck with it

We were at a similar crossroads for my mum & we refused the stem cell route. We were advised that the best chances for success are if the patient is less than 50 & usually good health/ strong. The key factor is will the persons body be able to survive the harsh chemo and then regenerate the normal amount of white cells required to keep them infection free later. After 50 these chances start reducing. A relative (who would have otherwise died of lymphoma) had this at 53 & made a great recovery & is doing well. But he 'aged' 10 years with this treatment - that's how hard it is. So age, strengths & the life-or-death situation should decide for you.

At 69 I think chemo treatments are do-able and lymphoma (depending on type) are treatable (though not curable). Hope this helps.

Forgot to say - Mum was 61 when we had to decide.