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Mast cell leukaemia
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Finally, off DA but perhaps not for much longer
I am 64 years old and after 22 years of taking the DA Mirapexin, I took my last quarter tablet on July 7th. However, after three weeks of sleepless nights, I may have to start taking them again, which is a depressing prospect. All my bloods (e.g. iron panel, B12, etc) are fine. I started taking pregabalin
I am 64 years old and after 22 years of taking the DA Mirapexin, I took my last quarter tablet on July 7th. However, after three weeks of sleepless nights, I may have to start taking them again, which is a depressing prospect. All my bloods (e.g. iron panel, B12, etc) are fine. I started taking pregabalin
MrVimes
in
Restless Legs Syndrome
2 months ago
Jakafi Dosing
I just had to change from Pegasys due to too many side effects, and was put on Jakafi. My question is does 15 mg. twice a day for a woman that is 110 lbs. seem like a lot? From what I read it seems so to me. My platelets had gone down on Pegasys from over a million to 567, but with bad side effects.
I just had to change from Pegasys due to too many side effects, and was put on Jakafi. My question is does 15 mg. twice a day for a woman that is 110 lbs. seem like a lot? From what I read it seems so to me. My platelets had gone down on Pegasys from over a million to 567, but with bad side effects.
dogsandhorses
in
MPN Voice
5 days ago
Recent research re. relevance of VAF
MPN Hub summary
Impact of mutated JAK2 allele burden on the outcomes in PV and ET
of a recent article by Guglielmelli et al. durable molecular response (DMR) complete clinical and hematological response (CCHR) [i]"Increased DMR was correlated with longer duration of CCHR, reduced progression
MPN Hub summary
Impact of mutated JAK2 allele burden on the outcomes in PV and ET
of a recent article by Guglielmelli et al. durable molecular response (DMR) complete clinical and hematological response (CCHR) [i]"Increased DMR was correlated with longer duration of CCHR, reduced progression
hunter5582
in
MPN Voice
11 days ago
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Recent research re. relevance of VAF
MPN Hub summary
Impact of mutated JAK2 allele burden on the outcomes in PV and ET
of a recent article by Guglielmelli et al. durable molecular response (DMR) complete clinical and hematological response (CCHR) [i]"Increased DMR was correlated with longer duration of CCHR, reduced progression
MPN Hub summary
Impact of mutated JAK2 allele burden on the outcomes in PV and ET
of a recent article by Guglielmelli et al. durable molecular response (DMR) complete clinical and hematological response (CCHR) [i]"Increased DMR was correlated with longer duration of CCHR, reduced progression
hunter5582
in
MPN Voice
11 days ago
UTIs and primary MF
I have had primary MF for 10 years and have recently commenced Momenlitinib after Ruxolitinib stopped working effectively.Over the last year I have suffered at least six UTIs and it is getting me down quite a bit. Last couple showed leucocytes present. Does anyone else experience similarly and could
I have had primary MF for 10 years and have recently commenced Momenlitinib after Ruxolitinib stopped working effectively.Over the last year I have suffered at least six UTIs and it is getting me down quite a bit. Last couple showed leucocytes present. Does anyone else experience similarly and could
Cazbolac
in
MPN Voice
12 days ago
Newly diagnosed Myelofibrosis
Hello lovely people A recent Bone Marrow has shown what I believe to be early stage Myelofibrosis. Next appt in two weeks. Has anyone got any advice on any questions I should be asking re treatment etc. I have had ET Calr for 17 years. Not quite sure what to think or feel just now. I am also being
Hello lovely people A recent Bone Marrow has shown what I believe to be early stage Myelofibrosis. Next appt in two weeks. Has anyone got any advice on any questions I should be asking re treatment etc. I have had ET Calr for 17 years. Not quite sure what to think or feel just now. I am also being
lindyloulou
in
MPN Voice
13 days ago
PV - Critical Illness insurance claim?
I was diagnosed with PV last year. I am struggling with work and feeling very anxious and realise I have a life with critical illness policy with LV but am not sure if PV is covered. It doesn't appear to be listed explicitly. LV boast that they meet the ABI guidelines for critical illness. Can anyone
I was diagnosed with PV last year. I am struggling with work and feeling very anxious and realise I have a life with critical illness policy with LV but am not sure if PV is covered. It doesn't appear to be listed explicitly. LV boast that they meet the ABI guidelines for critical illness. Can anyone
Santrix69
in
MPN Voice
14 days ago
Pruritis
I posted some weeks ago asking for suggestions about increased itching,and you were all so helpful,and I have tried a lot of your ideas, but having just had some blood results come back its showing my haemoglobin is too high,and so it has been suggested that I change from peginterferon which I have been
I posted some weeks ago asking for suggestions about increased itching,and you were all so helpful,and I have tried a lot of your ideas, but having just had some blood results come back its showing my haemoglobin is too high,and so it has been suggested that I change from peginterferon which I have been
caroline_284
in
MPN Voice
18 days ago
Clinical trial using dandelion root for leukemia in Canada.
H.”ere is an article that some might be interested in: There are many more news articles about this. The research was done at University of Windsor in Canada and the clinical trial is at the Windsor Cancer Center. There is also some ongoing research of cancer cells and various types of mushroom
H.”ere is an article that some might be interested in: There are many more news articles about this. The research was done at University of Windsor in Canada and the clinical trial is at the Windsor Cancer Center. There is also some ongoing research of cancer cells and various types of mushroom
montieth
in
CLL Support
21 days ago
Polycythemia vera and essential thrombocythemia of intermediate-age: A real-life, multicenter analysis of first-line treatment approach
»In regard to PV, the decision to introduce cytoreduction may be more understandable than in ET. Even young patients with PV are exposed to a higher risk of thromboembolic complications with respect to ET.19 Additionally, a recent publication showed that the cumulation of CV risk factors in PV patients
»In regard to PV, the decision to introduce cytoreduction may be more understandable than in ET. Even young patients with PV are exposed to a higher risk of thromboembolic complications with respect to ET.19 Additionally, a recent publication showed that the cumulation of CV risk factors in PV patients
Manouche
in
MPN Voice
23 days ago
Ruxolitinib Blood spot/purpura
Hi, I was diagnosed with PV Feb 22. Commenced HU Nov 22 had gastric issues, bone pain etc and was decided to change meds after 15 months on the HU. Changed to ruxolitinib Jan this year and had no issues to date, bone pain mostly gone, no itching, no weight gain, gastric issues much better and feel
Hi, I was diagnosed with PV Feb 22. Commenced HU Nov 22 had gastric issues, bone pain etc and was decided to change meds after 15 months on the HU. Changed to ruxolitinib Jan this year and had no issues to date, bone pain mostly gone, no itching, no weight gain, gastric issues much better and feel
Hocus58
in
MPN Voice
23 days ago
B12 injections
can we have B12 injections to lower MCV and MCH.? My RBC is below range my hct is below range. Folate low B12 in serum shows in range but as we know people with myloproliferative disorders will get B12 results in range but it’s not getting to cellular level
can we have B12 injections to lower MCV and MCH.? My RBC is below range my hct is below range. Folate low B12 in serum shows in range but as we know people with myloproliferative disorders will get B12 results in range but it’s not getting to cellular level
130396
in
MPN Voice
1 month ago
Anyone on Momelotinib/Ojjaara?
Hello all, As I continue on my Jakafi journey, I am relatively happy with my counts, as is my doctor. However, the dreaded weight gain continues. 13 pounds thus far and counting. If I could be assured (ha, ha as if) somehow that this would be it and the weight would stabilize, I might consider
Hello all, As I continue on my Jakafi journey, I am relatively happy with my counts, as is my doctor. However, the dreaded weight gain continues. 13 pounds thus far and counting. If I could be assured (ha, ha as if) somehow that this would be it and the weight would stabilize, I might consider
Miriammusic
in
MPN Voice
1 month ago
Referral to Guys/St Thomas's
had my face to face with my haemo consultant last Weds and from what it seems favourable results from my hydroxy drug prescribed dosage. The dosage now being lowered as a result. I was advised that my blood sample appointments would be now extended to once a month sampling. I disputed this, as I am
had my face to face with my haemo consultant last Weds and from what it seems favourable results from my hydroxy drug prescribed dosage. The dosage now being lowered as a result. I was advised that my blood sample appointments would be now extended to once a month sampling. I disputed this, as I am
Micky1956
in
MPN Voice
2 months ago
MonoclonalGammopathyof Undetermined Significance Update
This week I went to a great Myeloma/ MGUS specialist at Moffitt. I was diagnosed with JAK 2 ET and MGUS mutation in 2023. The doctor I go to monthly, not ET specialist at Moffitt mentioned I had a protein M spike in blood from MGUS. Protein M spike was .08 and needed to be watched. Went to Moffitt
This week I went to a great Myeloma/ MGUS specialist at Moffitt. I was diagnosed with JAK 2 ET and MGUS mutation in 2023. The doctor I go to monthly, not ET specialist at Moffitt mentioned I had a protein M spike in blood from MGUS. Protein M spike was .08 and needed to be watched. Went to Moffitt
JAB6
in
MPN Voice
2 months ago
What are the stages of myelofibrosis
My husband of 81 was diagnosed with myelofibrosis last week after having Jack2 negative essential thrombocythaemia since 2009. His consultant will be watching him closely for the next few months and has not yet prescribed any treatment. She gave us an information pamphlet to read, which we found very
My husband of 81 was diagnosed with myelofibrosis last week after having Jack2 negative essential thrombocythaemia since 2009. His consultant will be watching him closely for the next few months and has not yet prescribed any treatment. She gave us an information pamphlet to read, which we found very
Richinspirit
in
MPN Voice
2 months ago
Deep Brain Stimulator
I know this is way out of this forum, but I can't find a group to discuss with. I had a deep brain stimulator surgical procedure to help with an Essential Tremor in my hand. I had my dominate hand done 11 yrs ago at a different hospital. Had no issues with the results. At the end of May I had my other
I know this is way out of this forum, but I can't find a group to discuss with. I had a deep brain stimulator surgical procedure to help with an Essential Tremor in my hand. I had my dominate hand done 11 yrs ago at a different hospital. Had no issues with the results. At the end of May I had my other
Beth1949
in
Lung Conditions Community Forum
2 months ago
Wales.
I live near Carmarthen. South wales. I have blood cancer MPN Essential thrombocythemia. Does anyone else have this condition as I haven't been given a PALS or anyone to talk to. In England I here I would have had one, or been able to speak to someone. Any help to speak to someone would be great. This
I live near Carmarthen. South wales. I have blood cancer MPN Essential thrombocythemia. Does anyone else have this condition as I haven't been given a PALS or anyone to talk to. In England I here I would have had one, or been able to speak to someone. Any help to speak to someone would be great. This
mag123ben
in
MPN Voice
2 months ago
Jakafi/Weight Gain
I will preface this by saying that I am truly grateful that I am feeling better on Jakafi. It has only been two months, but my numbers are better and most importantly, I am not having the debilitating side effects of GI issues that were ruining my life on Besremi. So, I do realize that health is number
I will preface this by saying that I am truly grateful that I am feeling better on Jakafi. It has only been two months, but my numbers are better and most importantly, I am not having the debilitating side effects of GI issues that were ruining my life on Besremi. So, I do realize that health is number
Miriammusic
in
MPN Voice
3 months ago
A Blip in time!
I am 74 (F) and was diagnosed in Nov, 2019 with PV and JAK 2 positive. I have been in clinical remission for 18 months and take Jakafi 10mg 2x daily. I have an allele burden of 15 currently down from 60 at diagnosis. My blood draws have been within limits for 18 months with only a blip in the blood calcium
I am 74 (F) and was diagnosed in Nov, 2019 with PV and JAK 2 positive. I have been in clinical remission for 18 months and take Jakafi 10mg 2x daily. I have an allele burden of 15 currently down from 60 at diagnosis. My blood draws have been within limits for 18 months with only a blip in the blood calcium
Barney50
in
MPN Voice
3 months ago
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