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Cutaneous T cell lymphoma (CTCL)
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There’s no point to this post
Hi everyone, hope you’re all as well as can be. I’m approximately 3 1/2 years into this PMR. Sometimes it gets me down. I’ve been trying to start Humira for Ankylosing Spondylitis again, but the delivery company have been an absolute NIGHTMARE! It’s been so long since I last took it that I’m wondering
Hi everyone, hope you’re all as well as can be. I’m approximately 3 1/2 years into this PMR. Sometimes it gets me down. I’ve been trying to start Humira for Ankylosing Spondylitis again, but the delivery company have been an absolute NIGHTMARE! It’s been so long since I last took it that I’m wondering
Bramble2000
in
PMRGCAuk
11 months ago
"Scientists achieve breakthrough in treating 'neglected' polymyalgia rheumatica" - that's the headline but don't get too excited ...
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
PMRpro
Ambassador
in
PMRGCAuk
11 months ago
Colon cancer secondary to CLL
I had posted that I was diagnosed with stage 3 colon cancer and I’ve since had the mass successfully removed. Out of 16 lymph nodes analyzed 1 had cancer. So it’s off to chemo therapy in two weeks. For three months. Is there anyone in the group who’s experiencing this ? And does anyone have experience
I had posted that I was diagnosed with stage 3 colon cancer and I’ve since had the mass successfully removed. Out of 16 lymph nodes analyzed 1 had cancer. So it’s off to chemo therapy in two weeks. For three months. Is there anyone in the group who’s experiencing this ? And does anyone have experience
angelikab
in
CLL Support
1 year ago
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Should I switch SSRIs?
Hi all, I’ve been on sertraline for around 14 years on varying dosages. Most recently I was on 150mg, but over the past few weeks I’ve been coming down and I’m now on 50mg, in preparation for a switch to Paroxetine. I take sertraline as I was originally diagnosed with OCD and also had an eating disorder
Hi all, I’ve been on sertraline for around 14 years on varying dosages. Most recently I was on 150mg, but over the past few weeks I’ve been coming down and I’m now on 50mg, in preparation for a switch to Paroxetine. I take sertraline as I was originally diagnosed with OCD and also had an eating disorder
Griffo_
in
Thyroid UK
1 year ago
Successfully treated my Multiple Myeloma and now in remission from both MM and PCA
I successfully completed my induction cycles for treatment of my Multiple Myeloma. Mayo Clinic confirmed I am in remission from MM. I completed collection of my stem cells for future transplant if needed. 9 days down there - 21 appointments. The Bone Marrow Transplant Center at the Mayo, does not mess
I successfully completed my induction cycles for treatment of my Multiple Myeloma. Mayo Clinic confirmed I am in remission from MM. I completed collection of my stem cells for future transplant if needed. 9 days down there - 21 appointments. The Bone Marrow Transplant Center at the Mayo, does not mess
swwags
in
Advanced Prostate Cancer
10 months ago
Immune Responses + Autoimmune Myelofibrosis
There were some posts a few weeks ago on adverse immune responses after vaccination for people using interferons. I had this experience while transitioning form HU to Peg, firstly with a covid jab last December and secondly with the first of the Shingrix jabs in March, which triggered, at the very least
There were some posts a few weeks ago on adverse immune responses after vaccination for people using interferons. I had this experience while transitioning form HU to Peg, firstly with a covid jab last December and secondly with the first of the Shingrix jabs in March, which triggered, at the very least
LongETinUS
in
MPN Voice
11 months ago
Benefits of knowing your illness/condition/disease to help others as well as yourself
It’s about time I posted that a couple of months ago my husband was diagnosed with Giant Cell Arteritis. I was somewhat overwhelmed by the diagnosis having had PMR, GCA/LVV myself over the past 5 and a half years and haven’t, until now, felt ready to share his story on the forum.
It’s about time I posted that a couple of months ago my husband was diagnosed with Giant Cell Arteritis. I was somewhat overwhelmed by the diagnosis having had PMR, GCA/LVV myself over the past 5 and a half years and haven’t, until now, felt ready to share his story on the forum.
123-go
in
PMRGCAuk
1 year ago
Need help understanding results
My bf is newly diagnosed and doesn’t have next doctor’s appt for a few days. He just got the results for the CLL FISH panel and I’m trying to get a preliminary sense of what the implications may be. Thanks for any help! “RESULT: POSITIVE FISH RESULT for TRISOMY 12 and DELETION of 13q14.3; NEGATIVE FISH
My bf is newly diagnosed and doesn’t have next doctor’s appt for a few days. He just got the results for the CLL FISH panel and I’m trying to get a preliminary sense of what the implications may be. Thanks for any help! “RESULT: POSITIVE FISH RESULT for TRISOMY 12 and DELETION of 13q14.3; NEGATIVE FISH
karmacrepe
in
CLL Support
1 year ago
CLL is a lymphoid stem cell cancer so why are my myleloid stem cell products falling so much?
I am on Acal for 10 months after 8 years on W&W, 13q unmutated. Doing well with minimal side effects. ALC coming down from >200,000 to less than 30,000 after 9 months in April. Going to Dana Farber next week. My question is: if CLL is a lymphocyte cancer and lymphocytes come from lymphoid stem cells
I am on Acal for 10 months after 8 years on W&W, 13q unmutated. Doing well with minimal side effects. ALC coming down from >200,000 to less than 30,000 after 9 months in April. Going to Dana Farber next week. My question is: if CLL is a lymphocyte cancer and lymphocytes come from lymphoid stem cells
CaptRon1976
in
CLL Support
1 year ago
Colon cancer as secondary cancer
Hi I just got diagnosed with colon cancer last week and I am lucky I will have the operation to remove it on Tuesday - a very good Kaiser surgeon got me in quickly. It's not clear if it has advanced - I hope not- so we will see. I had a CT scan for the CLL in March when they saw something in the colon
Hi I just got diagnosed with colon cancer last week and I am lucky I will have the operation to remove it on Tuesday - a very good Kaiser surgeon got me in quickly. It's not clear if it has advanced - I hope not- so we will see. I had a CT scan for the CLL in March when they saw something in the colon
angelikab
in
CLL Support
1 year ago
Start of my stem cell journey 0.3.1 ambulatory care
I have been offered Ambulatory Care (treatment in a specialised day unit) for my stem cell transplant has anyone else gone through this process?
I have been offered Ambulatory Care (treatment in a specialised day unit) for my stem cell transplant has anyone else gone through this process?
Grizly
in
MPN Voice
11 months ago
Start of my Stem Cell Journey 0.3
Well, where do I start. The transplant team wanted to increase my Rux to 10 mgs which has been really good for me. So much energy hardly any symptoms and overall feeling better. The fly in the ointment is my blood levels are dropping red cells were 80 and my platelets were in the 30’s. My Haematologist
Well, where do I start. The transplant team wanted to increase my Rux to 10 mgs which has been really good for me. So much energy hardly any symptoms and overall feeling better. The fly in the ointment is my blood levels are dropping red cells were 80 and my platelets were in the 30’s. My Haematologist
Grizly
in
MPN Voice
11 months ago
Tooth extraction and tocilizumab
Hi I am going to have to have a tooth extraction....dentist says chance of jaw necrosis from tocilizumab and I wonder if anyone has had this ....I know from here that it is only a small chance but its scary ! Also will I need to come off medications (tocilizumab and methotrexate) first? Advice appreciated
Hi I am going to have to have a tooth extraction....dentist says chance of jaw necrosis from tocilizumab and I wonder if anyone has had this ....I know from here that it is only a small chance but its scary ! Also will I need to come off medications (tocilizumab and methotrexate) first? Advice appreciated
WaltzG
in
PMRGCAuk
1 year ago
A case study post bariatric surgery
For anyone who has access to twitter, this case study posted yesterday might be of some interest. Probably as much for the discussion as the original case. (Don't get too excited! It is just another case where the origination of the problem doesn't get blamed. As I see it, the cause was iatrogenic and
For anyone who has access to twitter, this case study posted yesterday might be of some interest. Probably as much for the discussion as the original case. (Don't get too excited! It is just another case where the origination of the problem doesn't get blamed. As I see it, the cause was iatrogenic and
helvella
in
Pernicious Anaemia Society
1 year ago
Latest bloodwork
My past 3 cbc's have shown a rise in specific areas that seem to indicate that I'm no longer in remission. I'm hoping I can attach results as I have questions about some elements. I have been on a low dose of (140mg) for the past 5 years and was previously treated with FCR in 2013. I will see my oncologist
My past 3 cbc's have shown a rise in specific areas that seem to indicate that I'm no longer in remission. I'm hoping I can attach results as I have questions about some elements. I have been on a low dose of (140mg) for the past 5 years and was previously treated with FCR in 2013. I will see my oncologist
rubberlegs68
in
CLL Support
1 year ago
Autoimmune Registry
I didn't know there was an Autoimmune Registry. However polymyalgia rheumatica is not found through their opening page search although it is on the list as a vascular disease, as is giant cell arteritis. Maybe their search function is as useful as HU's (used to be)? :D Or maybe they just haven't got
I didn't know there was an Autoimmune Registry. However polymyalgia rheumatica is not found through their opening page search although it is on the list as a vascular disease, as is giant cell arteritis. Maybe their search function is as useful as HU's (used to be)? :D Or maybe they just haven't got
HeronNS
in
PMRGCAuk
1 year ago
RA and live flu vaccine
HiMy daughter has rung to say my 2 year old grandson has just had a live flu vaccine. She said the GP has said to avoid people with very compromised immune systems, eg. they said, having bone marrow transplants, for a week. She asked if it was safe for them to see me and was told they had no guidance
HiMy daughter has rung to say my 2 year old grandson has just had a live flu vaccine. She said the GP has said to avoid people with very compromised immune systems, eg. they said, having bone marrow transplants, for a week. She asked if it was safe for them to see me and was told they had no guidance
Julia31
in
NRAS
1 year ago
Post stem cell transplant vaccinations
Hi. I am 11 months post transplant (AML). I am due to have my childhood vaccines next week. Just worried about reactions etc and it not being in the safety of the hospital.
Hi. I am 11 months post transplant (AML). I am due to have my childhood vaccines next week. Just worried about reactions etc and it not being in the safety of the hospital.
Platelets2022
in
Leukaemia Support
1 year ago
Foundation One heme blood test results
Hi, I wonder if somebody knows about this topic. My platelets have been high for six years; the bone marrow biopsy was incomplete because the nurse could not obtain the solid part. Anyway, the liquid aspiration was analyzed, and the bone marrow looked normal; the next-generation sequencing panel from
Hi, I wonder if somebody knows about this topic. My platelets have been high for six years; the bone marrow biopsy was incomplete because the nurse could not obtain the solid part. Anyway, the liquid aspiration was analyzed, and the bone marrow looked normal; the next-generation sequencing panel from
Cusube1967
in
CLL Support
1 year ago
The current status and challenges of CAR-T therapy in CLL
A few members of this group are scheduled for CAR-T and others might find themselves in the same situation in the future so I thought this would be of interest. "[i]In recent years, novel immunotherapies, including CAR-T cell therapy, have greatly improved treatment options for patients with hematological
A few members of this group are scheduled for CAR-T and others might find themselves in the same situation in the future so I thought this would be of interest. "[i]In recent years, novel immunotherapies, including CAR-T cell therapy, have greatly improved treatment options for patients with hematological
Jm954
Administrator
in
CLL Support
1 year ago
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