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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
8 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
8 months ago
Lymphoma or unconnected New Tumour.
Hi All, further to my recent 'post' re the Bells Palsy' that never was, I want to thank you all for your support and advice. I am still waiting on a 'Biopsy' date, followed by the three week wait for results. After which I will know better, where I stand. I have received my recent Bloods from my
Hi All, further to my recent 'post' re the Bells Palsy' that never was, I want to thank you all for your support and advice. I am still waiting on a 'Biopsy' date, followed by the three week wait for results. After which I will know better, where I stand. I have received my recent Bloods from my
Vindicatrix
in
CLL Support
11 months ago
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What does bone pain feel like?
My bf keeps having this recurrent pain in his elbow. I know CLL can cause bone pain but how would he know if that’s what he’s experiencing?
My bf keeps having this recurrent pain in his elbow. I know CLL can cause bone pain but how would he know if that’s what he’s experiencing?
karmacrepe
in
CLL Support
11 months ago
new mutations
just had my second BMB a couple of months ago. Had been taking aspirin and monthly phlebotomy until 3 months ago when started hydroxyurea. My BMB now showed a new mutation IDH1 and allele burden increased from 24% to 52%. Didn’t need a phlebotomy this month but will be starting Besremi mid d June.
just had my second BMB a couple of months ago. Had been taking aspirin and monthly phlebotomy until 3 months ago when started hydroxyurea. My BMB now showed a new mutation IDH1 and allele burden increased from 24% to 52%. Didn’t need a phlebotomy this month but will be starting Besremi mid d June.
Teachme85
in
MPN Voice
1 year 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
9 months ago
Can you help with understanding pain-meds doctor?
Can you help with? Understanding doctor needed! Please private message me (PM) here on this site if you know the name of a doctor in London who is considerate of strong pain medication… Hello all, I find it so comforting to check in and read how others are finding their journey re. pain. Mine goes up
Can you help with? Understanding doctor needed! Please private message me (PM) here on this site if you know the name of a doctor in London who is considerate of strong pain medication… Hello all, I find it so comforting to check in and read how others are finding their journey re. pain. Mine goes up
Byron5757
in
Pain Concern
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
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
7 months ago
so tired…
Good morning. I was diagnosed in December 2022 with mild CLL. My problem is that I am so tired all the time I just don’t feel myself. But the doctors tell me that I’m fine and that it’s not from the CLL. I looked on the Internet and I saw that fatigue is common in all stages of CLL. Not sure if there
Good morning. I was diagnosed in December 2022 with mild CLL. My problem is that I am so tired all the time I just don’t feel myself. But the doctors tell me that I’m fine and that it’s not from the CLL. I looked on the Internet and I saw that fatigue is common in all stages of CLL. Not sure if there
LG1948
in
CLL Support
11 months ago
Relative risk for secondary bone marrow cancer within 5 years after initial CLL chemoimmunotherapy treatment (typically BR or FCR)
In countries where targeted therapies ('brutinibs, venetoclax, obinutuzumab/rituximab) are now available, the remaining reason that FCR (Fludarabine+Cyclophosphamide+Rituximab) is still sometimes recommended for the treatment of CLL is that it can be curative* about 55% of the time - but [u]
only[
In countries where targeted therapies ('brutinibs, venetoclax, obinutuzumab/rituximab) are now available, the remaining reason that FCR (Fludarabine+Cyclophosphamide+Rituximab) is still sometimes recommended for the treatment of CLL is that it can be curative* about 55% of the time - but [u]
only[
AussieNeil
Partner
in
CLL Support
11 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
8 months ago
has anyone gotten a rash on their feet from hydroxyurea or just having thrombocytosis
I am reaching out to you wonderful people again. I have a red blotchy rash on my feet and have had this for a year. Someone called it micro vascular but I am not too sure what that is or if this is correct. I have been taking hydroxyurea since the fall of 2020, I have essential thrombocytosis jak
I am reaching out to you wonderful people again. I have a red blotchy rash on my feet and have had this for a year. Someone called it micro vascular but I am not too sure what that is or if this is correct. I have been taking hydroxyurea since the fall of 2020, I have essential thrombocytosis jak
kitttycat
in
MPN Voice
1 year ago
If you have/have had an acute leukaemia, please help us by completing this survey
We’re working with ALAN (Acute Leukaemia Advocates Network) and OHE (Office of Health Economics) to understand the outcomes of people with acute leukaemia and in doing so we need to understand what aspects of treatment are most important to them. If you are 18+, living in the UK and have been diagnosed
We’re working with ALAN (Acute Leukaemia Advocates Network) and OHE (Office of Health Economics) to understand the outcomes of people with acute leukaemia and in doing so we need to understand what aspects of treatment are most important to them. If you are 18+, living in the UK and have been diagnosed
LCAlex
in
Leukaemia Support
1 year ago
Dietary Interventions and CLL - a case report
For those of you who are interested in dietary changes and CLL, I found an interesting clinical case report called "Stable improvement in classical B‐cell chronic lymphocytic leukemia with dietary interventions: A personal experience" by Dr. Pooij and his treating hematologist Dr. Raemaekers. The case
For those of you who are interested in dietary changes and CLL, I found an interesting clinical case report called "Stable improvement in classical B‐cell chronic lymphocytic leukemia with dietary interventions: A personal experience" by Dr. Pooij and his treating hematologist Dr. Raemaekers. The case
Minou1
in
CLL Support
1 year ago
update
we’ll I had THE meeting with my haematologist yesterday with my son supporting me. Our meeting lasted the best part of 2 hours (!) during which we thrashed out many of the uncomplimentary things I had said about him. It never needed to escalate to the level it did if he had explained that Claire Harrison
we’ll I had THE meeting with my haematologist yesterday with my son supporting me. Our meeting lasted the best part of 2 hours (!) during which we thrashed out many of the uncomplimentary things I had said about him. It never needed to escalate to the level it did if he had explained that Claire Harrison
beetle
in
MPN Voice
1 year ago
Rusfertide...
I haven't come across any dialog about this drug on this website. It popped up on my many searches for additional info about treatment for Polycythemia Vera. It is currently in phase 2 of a clinical trial at Stanford University and so far, results with patients have been good. It sounds like
I haven't come across any dialog about this drug on this website. It popped up on my many searches for additional info about treatment for Polycythemia Vera. It is currently in phase 2 of a clinical trial at Stanford University and so far, results with patients have been good. It sounds like
K-itty
in
MPN Voice
1 year ago
Myelofibrosis and fedratinib
Just needing a bit of a moan. I've had high risk MF now for many years. Last year I was assessed for STC transplant but was told I was not robust enough so as I am now over 70 and resident in Scotland, that is no longer an option for me. No transplants available for the over 70s apparently. I had been
Just needing a bit of a moan. I've had high risk MF now for many years. Last year I was assessed for STC transplant but was told I was not robust enough so as I am now over 70 and resident in Scotland, that is no longer an option for me. No transplants available for the over 70s apparently. I had been
Bullace
in
MPN Voice
1 year 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
9 months ago
Besremi
I keep thinking of additional questions to ask here in addition to my previous posts about Jakafi.When my oncologist suggested that I start this drug after trying to take HU, I suggested Besremi? He said he can't get it although he's tried several places? I'm confused? Is it not offered in
I keep thinking of additional questions to ask here in addition to my previous posts about Jakafi.When my oncologist suggested that I start this drug after trying to take HU, I suggested Besremi? He said he can't get it although he's tried several places? I'm confused? Is it not offered in
K-itty
in
MPN Voice
1 year ago
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