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S C O T T

@msandlymphomasux.bsky.social
80 followers 105 following 387 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 · 20h
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 · 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
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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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 · 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 · 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 · 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 · 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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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
Sorted out a ruddy feed dint I. Fo shizzle bsky.app/profile/did:... Surf.social sorted it right out. @marcimccue.bsky.social - top banana my friend, top banana 🍌 😂👍🏼😊
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S C O T T @msandlymphomasux.bsky.social · 09/08/2026
Starting early in the garden in the sun! #WhyNot
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S C O T T @msandlymphomasux.bsky.social · 08/08/2026
www.forbes.com/sites/willia... #Lymphoma #CAR-T
forbes.com
The Remarkable Success Of CAR T For Lymphoma 10 Years Later
Ten-year results show a single CAR T infusion can keep many patients with aggressive and slow-growing B-cell lymphomas cancer-free, pointing toward true long-term cures.
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S C O T T @msandlymphomasux.bsky.social · 06/08/2026
Change a letter, ruin a movie Trainspitting
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S C O T T @msandlymphomasux.bsky.social · 02/08/2026
Pencilled in, 6 weeks tomorrow, Day -7, stem cell transplant conditioning will start. Meaning Sept 21st, Day 0, I should get my stem cells back. #aHSCT #Lymphoma #CurativeIntent #NeverGiveUp
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Rob Morgan @durutti74.bsky.social · 26/07/2026
The DWP are asking for people to contribute evidence for a forthcoming review of Carers Allowance and how it operates. Admittedly this is niche, but please spread the word so it reaches the right people. www.gov.uk/government/c...
gov.uk
Carer's Allowance: call for evidence
This call for evidence is being administered by the Department for Work and Pensions (DWP) to gather information and views to build on the Department’s existing evidence. What we hear will help shape ...
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S C O T T @msandlymphomasux.bsky.social · 28/07/2026
For those dealing with lymphoma. I’ve created this custom thread for us. Pin 📌 it to your home to see what the #lymphoma community is talking about. Use #lymphoma to contribute. Created with surf.social. surf.social/feed/surf%2F...
surf.social
Lymphoma by Scott on Surf
Surf - To draw folk together to share, where comfortable, your stories about your progress through lymphoma.
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S C O T T @msandlymphomasux.bsky.social · 28/07/2026
New PICC line in for Cycle 4 😀 No bed available in hospital for Cycle 4 😩 Some you win, some you lose. #RollWithThePunches #Chemo #Burkitts #Lymphoma #PCNSBL
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S C O T T @msandlymphomasux.bsky.social · 26/07/2026
Bingo! Got me in a nutshell, just like that. #PCNSL www.sciencedirect.com/science/arti...
sciencedirect.com
Movement disorders due to primary central nervous system lymphoma: An illustrative case and systematic literature review
Movement disorders (MD) can result from various mechanisms: central nervous system infection (20%), trauma (15%), metabolic dysregulation (7%), vascul…
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S C O T T @msandlymphomasux.bsky.social · 25/07/2026
@achronicvoice.com - my wife’s Substack through the lens of being my full time carer. Catering for challenges we both face through my progress with #MS and now added to that #BurkittsLymphoma. Hoping it might help 1 of your audience with their own challenges 🙏🏼 open.substack.com/pub/otherrol...
open.substack.com
The Other Role | Rebecca Garland | Substack
Personal reflections on coaching, caring and being human. Written by a coach who is also a carer. Click to read The Other Role, by Rebecca Garland, a Substack publication. Launched 2 months ago.
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Unofficial BBCNews (UK) Bot @bbcnews-uk-rss.bsky.social · 23/07/2026
Multiple sclerosis: First drug to help patients walk now on NHS in England
bbc.co.uk
Multiple sclerosis: First drug to help patients walk now on NHS in England
Fampridine boosts nerve signals to make it easier to walk, with up to 5,000 eligible.
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Blood Cancer UK @bloodcanceruk.bsky.social · 22/07/2026
Just a reminder ❤️ Whatever you're feeling, give yourself permission to feel it. Be gentle with yourself. You're navigating something that most people never have to face.
A quote on a maroon background  reads: "However you are feeling is normal." in a handwritten font, normal in red text.
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S C O T T @msandlymphomasux.bsky.social · 20/07/2026
Stem Cell Collection completed today. Just had the call to say we far surpassed what was required. Intent was to collect 2.5m stem cells from my blood, we collected 4.67m cells. It’s phenomenal news!! That part of this process has been done with flying colours! #Lymphoma #Cancer
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S C O T T @msandlymphomasux.bsky.social · 18/07/2026
@bloodcanceruk.bsky.social @lymphomaaction.bsky.social @nnhla-natcan.bsky.social I was diagnosed with Burkitts Lymphoma 2mnths ago. MATRix regimen is aggressive. Done 3 cycles & stem cell collection on Monday. It’d be great to make contact with others. I have a MS too, just to add complexity 🤦🏻‍♂️
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S C O T T @msandlymphomasux.bsky.social · 17/07/2026
I now have no lines in my arms or neck. Misaligned PICC line out this afternoon, new shiny one one back in in 11 days. The liberation is incredible! 🤣😁😂👊🏼
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S C O T T @msandlymphomasux.bsky.social · 15/07/2026
The next Substack write up by my wife of the chemotherapy battle we are both experiencing from differing perspectives: substack.com/@garlandcoac...
substack.com
Rebecca Garland (@garlandcoaching)
Cycle one of chemotherapy. Six treatment days, three blood clots, a liver injury and a lot of googling at midnight. The fourth piece in The Other Role is out now.
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S C O T T @msandlymphomasux.bsky.social · 13/07/2026
Cycle 3 done. CVC out. Home. 1 cycle to go with stem cell collection between and then Cycle 4 & Transplant. I can walk again too, without my stick for short distances. This is news! 👊🏼😁👍🏼
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S C O T T @msandlymphomasux.bsky.social · 09/07/2026
PICC has become unusable so have had a CVC put in. A Central Venous Catheter makes me look like something out of a horror film, I’ve tried convincing medical staff it’s new neck decoration, but they’re not buying it! 😂🤣 my.clevelandclinic.org/health/treat...
my.clevelandclinic.org
What Is a Central Venous Catheter?
A central venous catheter is a long, flexible tube that sends medicines, blood transfusions and other treatments directly into your bloodstream. Learn about how it can help you.
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MS News Today @msnewstoday.bsky.social · 07/07/2026
Chronic illness: Where sleeping is a skill and waking up is the challenge. #TiredAllTheTime
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S C O T T @msandlymphomasux.bsky.social · 07/07/2026
Cycle 3 starts today. #Chemo Here we go again #methotrexate, #cytarabine let’s get this done by the weekend if possible please!
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S C O T T @msandlymphomasux.bsky.social · 04/07/2026
Irradiated Blood Only from now on please. Health warning bracelet upon thy! 💉 🩸
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S C O T T @msandlymphomasux.bsky.social · 03/07/2026
A 18:30 head MRI with contrast today because someone in the NHS admin chain fucked up my appointment I was invited to yesterday morning. Wonderful. 😭
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S C O T T @msandlymphomasux.bsky.social · 30/06/2026
Cycle 3 delayed because I’m anaemic. Profoundly so 😩 More blood transfusions tomorrow! FFS! 🤬
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S C O T T @msandlymphomasux.bsky.social · 28/06/2026
July is a complete write off 😩 Week 1 - chemo Week 2 - rest Week 3 - Stem Cell collection Week 4 - chemo I’m going to be in pieces. Good luck everyone. This is going to be brutal 🤬😭
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S C O T T @msandlymphomasux.bsky.social · 26/06/2026
Authored by my wife, this is tough for both of us. substack.com/@garlandcoac...
substack.com
Rebecca Garland (@garlandcoaching)
A phone call we'd been waiting six days for, knowing it would tell us exactly what we were facing. The third piece in The Other Role is out now, the wait between the biopsy and the diagnosis, and eve...
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S C O T T @msandlymphomasux.bsky.social · 16/06/2026
Intrathecal Chemo this afternoon 😲Shiver me timbers, this is a big one and will be repeated after every cycle now! No coughing, sneezing or movement whilst that needle is in the spinal canal! 🤦🏻‍♂️👊🏼🙏🏼 #PrayForScott See you on the other side hopefully!
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S C O T T @msandlymphomasux.bsky.social · 15/06/2026
Official Cycle 2 done 👍🏼 Extras of blood transfusion before heading home today. Then back in tomorrow for Intrathecal Chemo, direct to the spinal cord and CSF contained within. Avoiding the blood brain barrier completely. Big things. Brutal things. Needed things.
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