Life after autologous stem cell transplant

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Liz2012
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Life after autologous stem cell transplant

Hi everyone!

Im just trying to get back to "normal" life after long course of treatments for refractory/progressive Hodgkin lymphoma. I find that it is difficult to make people understand that even though my latest PET-scan was negative, the "battle" is far from over. Knowing that I have higher risk of relapse and living with uncertainty is depressing. I have one more treatment option available (at least in theory); allo transplant, but not sure if I can cope with that, for various reasons, if the time comes.

Hevvur
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Hi Liz,

Hi Liz,
I know how you feel....after 10 years, many treatments and a relapse and an Allo transplant I am in remission (4 months now!).

I understand what you mean about getting people to understand you aren't 'cured', and it could come back! I tell people I am in remission and they think I am at 100% health, and thats it now!

I'm not sure what treatment I could have after having an allo if it comes back- I know I can have a top up of my donor cells if needed, but apart from that....I guess it would depend if any new treatments were out!

But of course, we aren't to think of those times! I try and live in the 'now', and enjoy myself!
Take care,
Heather

fenman
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Great news. Nice word

Great news. Nice word "remission".
My philosophy is to live life well so that whenever the end comes, i can say "it was good!".

Best wishes,

adam

Liz2012
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I like your philosophy Adam.

I like your philosophy Adam.

Liz

Liz2012
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Thanks Heather, great to hear

Thanks Heather, great to hear that you are in remission, hopefully that will last forever. It is important to try and live in this moment and enjoy life. I do still worry a lot about everything, but now that I have returned to work, I have at least some normality back in my life and something else to think about.

Did you have auto transplat before allo? And how was allo? (If you have written about it in other place I will find it, don´t have to repeat).

Stay well!
Liz

Hevvur
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Hi Liz,

Hi Liz,
I was supposed to have an auto in October(ish) 2009, but I didn't respond to chemo, and had to find another lot of treatment, ended up going for a trial down south.

Allo went down as well as could be expected to be honest....I was lucky not to be too poorly!
My blog is here if you want to have a read/wade through! Starts from some point in 2009, but covers my transplant last year :)
http://heatherslymphoma.blogspot.com/

bobo58
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Life after autologous stem cell transplant

Hi all I am a 58 year old male.
I was diagnosed with HL 2A in January 2012.
It cleared up after 6 months of ABVD.
I relapsed in August 2013.
I had an Autologous transplant Jan 2014.
Just returning to work now and even had a haircut last week.
I share Lizz's concerns and worry about my remission ending.
I too have a group of friends and family who consider remission means cure.

But as Heather has said "live in the now" I like that saying and will try to abide by it

Bob

If there is anyone out there facing an auto transplant the wrong side of fifty, I am happy to share my experiences.

JennieF
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Facing an autologous stem cell transplant

I am a 52 year old female currently in remission following chemo for the 2nd time for follicular NHL. I am facing a decision as to whether to go ahead with an autologous stem cell transplant and would be interested to hear experiences of any others (especially any women of similar age) who have been through this type of transplant.

JennieF
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Joined: 20/10/2014 - 5:22pm
Facing an autologous stem cell transplant

I am a 52 year old female currently in remission following chemo for the 2nd time for follicular NHL. I am facing a decision as to whether to go ahead with an autologous stem cell transplant and would be interested to hear experiences of any others (especially any women of similar age) who have been through this type of transplant.

Sapphire
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Hi Jennie :-)

Hi Jennie :-)

I'm afraid that I can't share experience of an autologous stem cell transplant with you (or indeed, that of HL!), but I just wanted to say hello. It's a decision that I may have to make, I guess, at some point.

I hope that someone with personal experience to share will be along shortly. All the very best with your decision, it's a big one to have to make indeed :-(

Meanwhile there's some discussion here that might be helpful?
http://community.macmillan.org.uk/cancer_experiences/stem_cell_transplants_for_blood_cancers/f/33217/t/62042.aspx

http://forums.lymphoma.com/showthread.php?t=24875

Stage 4 Follicular Non-Hodgkins Lymphoma - watch and wait.