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S C O T T

@msandlymphomasux.bsky.social
80 followers 99 following 390 posts

Tattooed | RRMS dx2006 | Primary Central Nervous System Burkitts Lymphoma (PCNSBL) dx2026 | Never give up

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S C O T T @msandlymphomasux.bsky.social · 12/10/2026
Conditioning for #Lymphoma Stem Cell Transplant is on a different level of intensity to conditioning for an #MS Stem Cell Transplant. I’m still broken 3 weeks after cell return. My Stem Cells are rebuilding me from 0 and it’s brutal. Hoping another week of this and I will turn the corner. Hope.
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S C O T T @msandlymphomasux.bsky.social · 08/10/2026
LATEST: Lymphoma Stem Cell Transplant Harvesting otherrole.substack.com/p/stem-cell-... #ASCT #Lymphoma #Collection
otherrole.substack.com
Stem Cell Harvesting: Everything Resting on the Result
There was a definite pressure hanging over the outcome of the stem cell harvesting attempt.
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S C O T T @msandlymphomasux.bsky.social · 04/10/2026
My stem cells are regrafting in the bone marrow well. Exhausting in the same breath. So just did 10 mins on the bike in my hospital room. Mobility/movement recovery begins. #ASCT #Lymphoma #MS #Recovery
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S C O T T @msandlymphomasux.bsky.social · 02/10/2026
Today is day +10. News in, I can be sent home over the weekend! This has blown everyone out of the water. This level of recovery, at this pace, was never expected. I’ll take it though 🎉🍾🎉 Scott V2.0 has arrived 🥂🍾 #ASCT #TransplantDone #Lymphoma #MS
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S C O T T @msandlymphomasux.bsky.social · 26/09/2026
I’ve bottomed out. Day +4. I feel awful. My neutrophils are zero & will be for a few days. Stem Cells can only do good now. The only way is up. #ASCT #Lymphoma #MS #StemCellTransplant
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New York Daily News @nydailynews.com · 22/09/2026
Christina Applegate shares first video since months-long hospitalization
nydailynews.com
Christina Applegate shares first video since months-long hospitalization
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S C O T T @msandlymphomasux.bsky.social · 22/09/2026
Day 0 is here! I would like my stem cells back now please. #ASCT #Lymphoma #MS
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S C O T T @msandlymphomasux.bsky.social · 21/09/2026
Day 0 is tomorrow. The previous 7 have been crap. #ASCT #Lymphoma #MS
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S C O T T @msandlymphomasux.bsky.social · 18/09/2026
Written words in black & white from my Neuro to my GP, cc’ing me: “It is quite possible that the stem cell therapy will treat the MS definitively.” Fingers crossed, as the Dr said to me in clinic this morning, fingers crossed 🤞🏼😀👊🏼 #AutologousStemCellTransplant #ASCT #Lymphoma #MS
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S C O T T @msandlymphomasux.bsky.social · 15/09/2026
Admission tomorrow morning now, Wednesday. Side room/bed availability controls everything as expected.
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S C O T T @msandlymphomasux.bsky.social · 15/09/2026
LATEST: Cycle 3 and its pressurised deadlines. Stressful and infuriating at the same time/level. Not staff related, process and red tape predominantly. otherrole.substack.com/p/matrix-che... #matrix #chemotherapy #burkitts #lymphoma
otherrole.substack.com
MATRix Chemotherapy Cycle Three: Everything Hanging on a Deadline
Cycle three got off to a very bumpy start.
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S C O T T @msandlymphomasux.bsky.social · 12/09/2026
Neurologist said yesterday, no more MS meds req’d if Lymphoma Stem Cell Transplant is successful 😀 Admission to hospital on Tuesday, very high dose #Carmustine & #Thiotepa over Wed/Thurs/Fri, then Stem Cells Back & recover. Holy shit scoobs, it’s happening! #SCT #MS #Lymphoma
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S C O T T @msandlymphomasux.bsky.social · 09/09/2026
They’re like mini computers, with cameras, aren’t they? Tech has gone crazy in the last few years. AI will remove the human race in the years to come, according to Anthropic researchers anyway! 😲🤦🏻‍♂️
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S C O T T @msandlymphomasux.bsky.social · 09/09/2026
You’ve gone all in for Nothing! 😂 Whatever next?
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S C O T T @msandlymphomasux.bsky.social · 08/09/2026
Whereas all planes are grounded here in the UK due to a technical failure with air traffic control. It’s bananas!!🍌 Your flight map sounds awesome though 😁
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MS Society UK @mssocietyuk.bsky.social · 07/09/2026
PIP should properly reflect the realities of living with MS. ✍️ Please sign and help make PIP fair for people with MS: campaigns.mssociety.org.uk/page/191…
campaigns.mssociety.org.uk
Sign the petition to Fix PIP for people with MS.
I've signed the petition to Fix PIP. People with MS shouldn't have to fight to access the support they're entitled to. Join me and sign today
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S C O T T @msandlymphomasux.bsky.social · 07/09/2026
BBC News presenter reveals she has blood cancer www.bbc.co.uk/news/article... @bloodcanceruk.bsky.social
bbc.co.uk
Maryam Moshiri: BBC News presenter reveals she has blood cancer
Maryam Moshiri tells the BBC she wanted to reveal her diagnosis to raise awareness about the cancer.
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Gregor Findlay 🇺🇦 @gregorfin.bsky.social · 06/09/2026
This could be the big game changer for #MS treatment. Fingers crossed 🤞 and roll on proper phased trials! gavingiovannoni.substack.com/p/in-vivo-ca...
gavingiovannoni.substack.com
In vivo CAR T-cell therapy to treat MS
The most exciting developments in MS, is the use of engineered T-cells, or chimeric antigen receptor (CAR) T-cells, as a treatment. A new study takes this treatment to the next phase.
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S C O T T @msandlymphomasux.bsky.social · 03/09/2026
You beaut! Congrats, one down (hopefully!) 🙏🏼👍🏼😁
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S C O T T @msandlymphomasux.bsky.social · 02/09/2026
LATEST: The brutal reality no-one ever talks about, the weeks between chemo cycles. #chemotherapy #lymphoma #treatmentcycles #reality otherrole.substack.com/p/matrix-che...
otherrole.substack.com
MATRix Chemotherapy: The Reality of the Weeks Between Cycles
One thing nobody really prepared us for was how little recovery time exists between chemotherapy cycles.
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Blood Cancer UK @bloodcanceruk.bsky.social · 01/09/2026
Blood Cancer Awareness Month starts today ❤️ Blood cancer changes everything. Whether you’re living with it, have been through it, supporting someone you love, or remembering someone you’ve lost - this month is for you. Share this to help us raise awareness.
The graphic is white and says  Blood Cancer Awareness Month at the top.

Underneath are clustered words leukaemia, myeloma, lymphoma, mds, mpn next to hearts in pink, purple, red, burgundy and grey.

 The text at the bottom reads, "For everyone whose life changed because of it.
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S C O T T @msandlymphomasux.bsky.social · 01/09/2026
The MS Gym folk, especially Trevor Wicken co-founder, is an impressive source of info too!
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S C O T T @msandlymphomasux.bsky.social · 31/08/2026
Her book, The MSing Link, is great. I read it cover to cover in one go. Highly recommend! 😁
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S C O T T @msandlymphomasux.bsky.social · 29/08/2026
I’m a 2 decades since diagnosis person too and by jingo do I still get flattened by #fatigue. I just have to stop and my wife takes care of everything. Without that support I don’t know where I’d be. She’s awesome.
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S C O T T @msandlymphomasux.bsky.social · 29/08/2026
As am I 🙂 My line manager is exceptional, it all goes through him and he protects me from all the rubbish whilst I’m dealing with my own health implications. A good/great LM will make all the difference!
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S C O T T @msandlymphomasux.bsky.social · 29/08/2026
Easy to say I know, but don’t feel guilt. It’s self preservation. Wellbeing MUST come first, for everyone. Without it, we can’t do anything. I’ve convinced my team at work of this and my seniors. They all agree now 👍🏼
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S C O T T @msandlymphomasux.bsky.social · 29/08/2026
Get signed off by a Dr if you are able, you’re protected under the www.gov.uk/definition-o... having #MS.
gov.uk
Definition of disability under the Equality Act 2010
You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a 'substantial' and 'long-term' negative effect on your ability to do daily activities
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S C O T T @msandlymphomasux.bsky.social · 27/08/2026
static.klipy.com
Excited Baby Yells 'Yes Lets Go' at Game
ALT: Excited Baby Yells 'Yes Lets Go' at Game
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S C O T T @msandlymphomasux.bsky.social · 27/08/2026
Bristol are doing it all. Not a trial, it's immunotherapy to be rid of lymphoma primarily, if it works for MS too, that's double bubble!
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S C O T T @msandlymphomasux.bsky.social · 26/08/2026
My Stem Cell infusion is now scheduled for Sept 22nd. My complete reboot is planned. This could be the end of cancer AND #MS for me for the foreseeable future. No-one knows the outcome yet, that's to come 🙏🏼 #burkittslymphoma #SCT #autologous
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S C O T T @msandlymphomasux.bsky.social · 24/08/2026
I was involved in the development of this app with @jenibaykoca.bsky.social and the team, including, but not limited to @chiaraml.bsky.social. If you live with #MS give it a whirl, it helped me. It could help you too 😁👍🏼
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S C O T T @msandlymphomasux.bsky.social · 21/08/2026
It’s already been said, but I’ll say it again. The Fatigue is overwhelming at times.
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S C O T T @msandlymphomasux.bsky.social · 19/08/2026
Very kind words Shannon, thanks again. I’ll get through this 😁 I have to.
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S C O T T @msandlymphomasux.bsky.social · 19/08/2026
I’m vastly better than I was, thank you. Just a lymphoma stem cell transplant and brain injury, caused by the cancer, to get through and recover from! 👍🏼 I really hope you improve with your symptoms, I really do 😊
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S C O T T @msandlymphomasux.bsky.social · 19/08/2026
Yes, so am I!! 🙏🏼😁 I had several other significant symptoms too: - VERY poor mobility - Left side weakness/intention tremor - Slurred speech With the worsening headache too, these all pointed to cerebellum involvement, not MS relapse. MRI with contrast confirmed this.
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S C O T T @msandlymphomasux.bsky.social · 19/08/2026
It was glaringly obvious on the urgent MRI (head with gadolinium contrast) that my Neuro ordered. Instantly referred to Neuro surgery in Bristol (a city close to where I live) to carry out the necessary.
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S C O T T @msandlymphomasux.bsky.social · 19/08/2026
I really hope this starts to get better for you as soon as possible. I spent most of April with a worsening pick-axe style headache everyday. Got told by the MS Nurse is was more than likely a ‘pseudo-relapse’ (WTaF!). Turned out to be an aggressive, very rare lymphoma! 🤬 More education req’d!
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S C O T T @msandlymphomasux.bsky.social · 19/08/2026
Latest: otherrole.substack.com/p/matrix-che... #Lymphoma #MATRix #Chemotheraphy
otherrole.substack.com
MATRix Chemotherapy Cycle Two
The decision to continue
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S C O T T @msandlymphomasux.bsky.social · 16/08/2026
It ‘might’ but it also might not. Everyone involved in my care is very intrigued in the outcome. I couldn’t be more rare if I tried! Having Burkitt’s Lymphoma especially, AND MS, has more than likely never been seen/treated before 😲🤔😁😂
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S C O T T @msandlymphomasux.bsky.social · 15/08/2026
“Probably in remission” but the cancer will return without completing stem cell transplant & scans complete. Quote from my consultant yesterday!!!!! Can’t get much better than that, with stem cell transplant imminently booked in & MRI in the morning !!!!!! 😁😀😊👍🏼👊🏼 #lymphoma #Burkitt #chemo #sct
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S C O T T @msandlymphomasux.bsky.social · 14/08/2026
Profoundly neutropenic… that’s pretty bad news today. Let’s hope that level rises over the coming days please. 🙏🏼 #Lymphoma
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S C O T T @msandlymphomasux.bsky.social · 14/08/2026
This is alarming news and I want to fix it…. But I can’t. Good luck today! 🤣
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Australasian Lymphoma Alliance @alaadmin.bsky.social · 13/08/2026
Shout out to all the cancer nurses around the world, especially our lymphoma nurses. Thank you for everything you do, every day! #CancerNursesDay
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S C O T T @msandlymphomasux.bsky.social · 13/08/2026
I’m at the absolute low point of #chemo cycle 4 today, with 2x blood transfusions tomorrow to drag me out of it. God I need it, I don’t function as a human at this point. #lymphoma got me at this stage, day 14, of the cycle.
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S C O T T @msandlymphomasux.bsky.social · 11/08/2026
For those dealing with lymphoma. I’ve created this custom BSky Feed for us: bsky.app/profile/did:... Pin 📌 it to your home to see what the #lymphoma community is talking about. Use #lymphoma to contribute. 😊😁
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S C O T T @msandlymphomasux.bsky.social · 11/08/2026
Latest: otherrole.substack.com/p/burkitt-ly... #Burkitt #Lymphoma
otherrole.substack.com
Burkitt Lymphoma
The Primary Central Nervous System Type
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S C O T T @msandlymphomasux.bsky.social · 10/08/2026
Good result. www.medscape.com/viewarticle/... #lymphoma #pcnsl #Burkitt
medscape.com
Stem Cell Transplant Boosts Survival in Primary CNS Lymphoma
Among patients with primary CNS lymphoma who respond to induction therapy, high-dose chemotherapy with stem cell transplant improves survival compared with nonmyeloablative chemotherapy.
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MedicineVilla| Ivermectin Store In USA (www.medicinevilla.biz ) @medicinevilla.bsky.social · 07/08/2026
Knowing the basic categories of cancer can make medical information easier to understand. Carcinomas are the most common, sarcomas affect connective tissues, melanoma develops from pigment-producing skin cells, leukemias involve the blood and bone marrow, and lymphomas affect the lymphatic system.
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S C O T T @msandlymphomasux.bsky.social · 10/08/2026
CAR-T has been mentioned for me……if Stem cell transplant fails. So we wait and hope 🙏🏼😁
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S C O T T @msandlymphomasux.bsky.social · 10/08/2026
This is a thread, the new BlueSky feed can be accessed through this link: bsky.app/profile/did:... 👍🏼😁
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