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Mast cell leukaemia
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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
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
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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
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
10 months 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
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
9 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
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
Jakafi
I'm to start on Jakafi soon, after not being able to tolerate HU. Are some of you on this site currently on Jakafi and what side effects have you experienced? Weight gain, fatigue, hair loss, high cholesterol? How long before you began noticing side effects after starting the RX? What were your
I'm to start on Jakafi soon, after not being able to tolerate HU. Are some of you on this site currently on Jakafi and what side effects have you experienced? Weight gain, fatigue, hair loss, high cholesterol? How long before you began noticing side effects after starting the RX? What were your
K-itty
in
MPN Voice
1 year ago
Ruxolitinib plus Hydrea
Hi everyone I was supposed to start on IFN but my heamatologist is asking other consultants if Ruxolitinib and hydrea can be combined. Was on hydrea for Sixteen years but stopped controlling my platelets. Now on Ruxolitinib but can’t tolerate a high dose. She thinking lower dose both. Has anyone tried
Hi everyone I was supposed to start on IFN but my heamatologist is asking other consultants if Ruxolitinib and hydrea can be combined. Was on hydrea for Sixteen years but stopped controlling my platelets. Now on Ruxolitinib but can’t tolerate a high dose. She thinking lower dose both. Has anyone tried
Mudmaker
in
MPN Voice
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
10 months ago
While on Watch and Wait
When you are newly diagnosed with CLL , is it normal to be placed on W&W and not be given the following test, FISH , TP53 , AND IGHV ? My GP did have me see the oncologist , who order the Leukemia/Lymphoma Eval. and a Flow Cytometry test. It sounds like some Doctors only order the test when
When you are newly diagnosed with CLL , is it normal to be placed on W&W and not be given the following test, FISH , TP53 , AND IGHV ? My GP did have me see the oncologist , who order the Leukemia/Lymphoma Eval. and a Flow Cytometry test. It sounds like some Doctors only order the test when
Sillysand
in
CLL Support
1 year ago
Progress update - Pirtobrutinib triple trial for treatment naive
I finished Cycle 4 of the fixed duration Pirtobrutinib combo trial at M.D. Anderson for Pirtobrutinib, Obinutuzumab, and Venetoclax on June 13, 2023. https://clinicaltrials.gov/study/NCT05536349?tab=table In addition to the usual blood tests - CBC, differential, metabolic, electrolyte, and immunoglobulin
I finished Cycle 4 of the fixed duration Pirtobrutinib combo trial at M.D. Anderson for Pirtobrutinib, Obinutuzumab, and Venetoclax on June 13, 2023. https://clinicaltrials.gov/study/NCT05536349?tab=table In addition to the usual blood tests - CBC, differential, metabolic, electrolyte, and immunoglobulin
SeymourB
in
CLL Support
1 year ago
Prefibrotic Myelofibrosis and I hate Hydroxyurea (HU)
Recently diagnosed, first with ET. And put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage.
Recently diagnosed, first with ET. And put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage.
Apple238
in
Leukaemia Support
1 year ago
Prefibrotic myelofibrosis and I hate hydroxyurea (HU)
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage. I resisted
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage. I resisted
Apple238
in
MPN Voice
1 year ago
CLL and Hyperthroid
I was treated for CLL in 2018 - chlorambucil and Gazyvaro. No problems at all until last month a random blood test indicated an over active thyroid, for which I am now taking medication. I understand that both conditions relate to the immune system. I will see an endocrinologist in 3 months to check
I was treated for CLL in 2018 - chlorambucil and Gazyvaro. No problems at all until last month a random blood test indicated an over active thyroid, for which I am now taking medication. I understand that both conditions relate to the immune system. I will see an endocrinologist in 3 months to check
Hidden
in
CLL Support
1 year ago
Ruxolitinib Versus Best Available Therapy for Polycythemia Vera posted by Manouche
Manouche posted the very new Majic-PV trial. Some thoughts (sorry it's not better organized, I'm not top of my game these days): Rux is looking similar to IFN for allele reductions (My Dr sort of said "I told you so") This like most other Rux studies have been handicapped by selecting for HU intolerant
Manouche posted the very new Majic-PV trial. Some thoughts (sorry it's not better organized, I'm not top of my game these days): Rux is looking similar to IFN for allele reductions (My Dr sort of said "I told you so") This like most other Rux studies have been handicapped by selecting for HU intolerant
EPguy
in
MPN Voice
1 year ago
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