Allo stem cell transplant

Hi Alice, yes the COVID stuff is challenging but we will get through it.

If you have looked at my profile you will remember I had 2 Allo SCTs - first in June 2014 and second October 2015.

The first Allo was a punt and if it worked I would recover very quickly but failed within 6 months.

The second was hard work but back in September 2016 I was told I was in remission for the first time in over 17 years from a condition, that back in 1999 was classed as incurable but treatable and I would never experience remission.

So I have absolutely no regrets sitting in the Allo SCT Rollercoaster........ and I would not be here now if I had not went through my Allo’s

((hugs)) from a safe distance x

Hi Alice

I had my bone marrow transplant last year for AML. I had relapsed a few months earlier after chemo only. I was in hospital for six weeks due to respiratory problems . Going home was a little scary after the security of being on the ward but as each day progressed I felt a little better. I did get admitted for a week with low grade temperatures but that passed quite comfortably without incident. I had some gut GVHD for about 5 months which eventually disappeared in March. Since then I have felt much better almost back to my old self even able to slowly run 3 miles.I do have a bit of mild skin GVHD which though a bit unsightly is not uncomfortable.Three weeks ago my doctors stopped all medication and I only have blood tests every fortnight.In 2 weeks time it will be 1 year since my transplant.

Hope all goes well for you in the next few months xx

Mark

Morning Alice123

Great to hear things are going in the right direction. I had my allo back in May 2013 so I am 3 week short of 7 years post transplant. 

Life post transplant is pretty much back to how it was pre leukaemia.. I am just 8 years older and hopefully a little wiser. 

Hi Alice,

I am over 4 years out from allo now. There were some difficult times but you can do definitely do it Alice and like Paul my life is very much normal now. 

Greg

Hi Alice, 

YOU CAN DO THIS!!!!!!

Daughter had her allo way back in 2011 and is busy right now at this very moment trying to find out where her trumpet (plastic, made by the folk who made the pBone) is, to play the Last Post this evening! Having had radiotherapy and supposedly getting 20% of her massive lung function reduced, she's still performing on trombone, teaching and (yes, even in shielding) enjoying life! She and a soprano who lives near end up doing quite an outside concert at 8pm each Thursday! Daughter got her keyboard out to accompany! What it is to be a freelance musician! 

Yoga and meditation are so healing, carry on......

Hugs xxx

Thank you Mike Mark Greg Moomy and everyone 

The trial is going really well for me and the other man at my hospital. I hope someday it be available.on nhs as the side effects are minimal compared to having salvage chemotherapy and get better as the weeks go on. Apart from shielding lol I can get.on with.life bake do yoga look after the garden housework. Enjoying my time at home and feeling good. 

When I have the allo know I will be feeling poorly again for a while and lose my hair for third time  so making most of the present 

I hope you are keeping well.

Take care

Alice x

Hi Alice, good to hear things are going good and yes, enjoy the 'freedom' that you have at the moment.

The beautiful weather is helping me/us get through this shielding lark, but we will get through it.

((hugs))

Hi everyone

Thank you so much for your words of encouragment and sharing your journey with me. Its amazing to hear how things have worked out positively for you all and gives me hope for the future. I did a birday fundraiser for Anthony Nolan recently as I really wanted to help people to be able to have option for stem cell donor. With the help of friends and family i was told they can register 20 people be possible donors.

I don't know if I've mentioned before. There's a free podcast 'turn panic into peace' by Kara Lowenthail very helpful for anyone struggling with anxiety.

Take care

Alice x

Well done Alice - every little helps xx

Hi Alice :-)

I'm a bit late to the party but I just wanted to say hi and give you some words of positivity! 

I had an allo transplant in 2018. I'd had loads of treatment prior (including two different clinical trials) so although I felt apprehensive I was just so keen to get it done! 

It went quite smoothly at the hospital and once I returned home I slept loads. I had some skin GVHD and low white blood counts on and off for ages, plus some other issues but the doctors and nurses were all fabulous and eventually everything sorted itself out. I've still got a funny rash on my hands and feet but I barely notice it now. 

I had a moment a little while ago where I looked in the mirror and felt like me again. I'm back at work (I'm 32), thinking about moving abroad to start a new adventure with my partner, and feel good in myself again.

It isn't easy but you can get through it!! 

Stay safe x