Hi Gray and welcome back to the community.
This community has changed significantly over the 10 years I have been helping out on it…… so the difference in 20 years will be even more significant.
The post treatment world can be so demanding…….
I was diagnosed in 1999 age 44 with one of the rare (8 in a million) hard to treat incurable types of slow growing Low-Grade NHLs - Cutaneous T-Cell NHL a rare type of skin NHL.
I continued to work for 12 years in a demanding teaching job and yes had various skin treatments treatments over these first 14 years then in late 2013 a second very rare (4 in a million) more aggressive fast growing High-Grade NHL - Peripheral T-Cell NHL came along taking me to stage 4.
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my story) but my main treatments were…..
5 Radiotherapy zaps (Oct 2013)
6 cycles of R-EPOCH (Dec 2013 to May 2014)
(June 2014) 2 weeks SCT conditioning followed the Stanford Regime TLI/ATG plan with 10 sessions, TLI (Total Lymphoid Irradiation)
My first Allograft (donor) Stem Cell Transplant was on 12 June 2014.
I was told the graft failed on Christmas Eve 2014.
I went back for my second Allograft (donor) Stem Cell Transplant between 14 Sep to 10th Nov 2015 (day 0 was the 21st Oct)
This included 30 radiotherapy zaps to clean my skin then one week of aggressive conditioning using FluMelAlem30
September 2017 my Whole Blood Lymphoid and Myeloid Lineages are 100% Donor
18 June 2018 - Discharged from SCT Consultants care.
But I I am still here, over 10 years out from my last treatment, I turned 70 last month and I doing great.
Hi Mike,
Wow, that's quite a medical history you've got there. Huge well done for getting through all those years – the longer the treatment goes on, the tougher it gets, doesn't it?
Thank you so much for replying to my post and sharing your story with me. It really means a lot.
70 and still going strong – you're doing amazingly! I'm 44 now and feel exactly the same: so grateful to still be here. It's been really hard at times, but we've made plenty of good memories since cancer too.
It's incredible how much treatment has improved. The chemo we had 20+ years ago was so brutal on the body compared to what's available now.
I'm going to look into getting some extra support with benefits soon – it would be such a relief to feel more secure and not have to worry about work affecting my health.
It's lovely connecting with kind people who've been through similar things. Hearing recovery stories like yours is really uplifting – no matter how tough the struggle, it's amazing what we can get through when we have to.
One of the hardest parts is that most people just don't understand how difficult it all is.
Take care,
Gray
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I'm 21 yrs post transplant - High-dose BEAM + autologous stem-cell transplant 2004 (age 23)
Diffuse Large B-Cell stage 3 high grade Non Hodgkin's lymphoma
Hi Gary…
My main treatment hit Sep 2013 to Nov 2015 was a big hit on my body…… the 14 years leading up to then were ok.
The post SCT left overs can be life long. Reduced immune system so infections are part of life…. I am just getting over 7 weeks of infections, viruses and Pneumonia……. but I will never complain about the gift that my treatments has been.
If you are in the UK you may want to check out Lymphoma Action.
Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……
Their Closed FB group alone has over 6000 members and unfortunately you would most likely bump into me on there also ;) as I have volunteered with LA for a few years.
They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
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I'm 21 yrs post transplant - High-dose BEAM + autologous stem-cell transplant 2004 (age 23)
Diffuse Large B-Cell stage 3 high grade Non Hodgkin's lymphoma
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I'm 21 yrs post transplant - High-dose BEAM + autologous stem-cell transplant 2004 (age 23)
Diffuse Large B-Cell stage 3 high grade Non Hodgkin's lymphoma
This year has been particularly bad, the winter bugs kicked off early this year so I have not been able to get my Flu and Covid jabs…… now booked for 5 Jan.
‘Talking’ can help in some many levels….. our local Maggie's Centre has been a place of peace and support over the past 10+ years…… our monthly Heamatology Support Groups is great……. and folks in the Highlands will not think twice about doing a 100mil round trip drive combined with some shopping in Inverness to allow them to make use of the various support groups.
It’s all about finding what helps us best.
