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Engaging Conversations: Chats with MPN Specialists
»Embark on a journey of enlightening dialogues surrounding Myeloproliferative Neoplasms (MPNs) with the distinguished specialists in the field. These live chats offer a unique opportunity to delve into the intricacies of Polycythemia Vera (PV) and Essential Thrombocythemia (ET) with the expertise of
»Embark on a journey of enlightening dialogues surrounding Myeloproliferative Neoplasms (MPNs) with the distinguished specialists in the field. These live chats offer a unique opportunity to delve into the intricacies of Polycythemia Vera (PV) and Essential Thrombocythemia (ET) with the expertise of
Manouche
in
MPN Voice
7 months ago
Metformin Use and the Risk of Myeloproliferative Neoplasms in a Danish Population Based Cohort
I am very curious if any MPNérs are using Metaformin and what effects they are experiencing on their MPN... See: In this study we found an inverse association between MT use and risk of MPNs indicating a potential protective effect of MT on the development of MPNs. The protective effect was most pronounced
I am very curious if any MPNérs are using Metaformin and what effects they are experiencing on their MPN... See: In this study we found an inverse association between MT use and risk of MPNs indicating a potential protective effect of MT on the development of MPNs. The protective effect was most pronounced
pvdm
in
MPN Voice
7 months ago
Hard Mass on my Spleen
My first post here .... can hardly believe I'm doing this. Firstly, a big thank you to the creators and members of this group who share. I'm sure your help is life-changing for many people. I'm a 68 year old guy who was diagnosed with cll in 2014. My wbc's have been fairly stable since diagnosis
My first post here .... can hardly believe I'm doing this. Firstly, a big thank you to the creators and members of this group who share. I'm sure your help is life-changing for many people. I'm a 68 year old guy who was diagnosed with cll in 2014. My wbc's have been fairly stable since diagnosis
Gooseman
in
CLL Support
1 year ago
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Bone pain
morning all does anyone else get really uncomfortable bone pain with ET I have for years had pain in thigh and upper arm bones sometimes so sore. My discomfort now is in pelvic bones especially the bones I sit on . I think the ischial tuberosity… ? Any one else
morning all does anyone else get really uncomfortable bone pain with ET I have for years had pain in thigh and upper arm bones sometimes so sore. My discomfort now is in pelvic bones especially the bones I sit on . I think the ischial tuberosity… ? Any one else
Tipsy2023
in
MPN Voice
7 months ago
Ruxolitinib not working so well
I was diagnosed with Myelofibrosis Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!! The CRP is below 1mg so it is not likely an infection has caused this sudden increase in the platelet
I was diagnosed with Myelofibrosis Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!! The CRP is below 1mg so it is not likely an infection has caused this sudden increase in the platelet
Searcher56
in
MPN Voice
7 months ago
Generic version of Jakafi for PV ?
Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is : 24th December 2027 Patent use: FOR TREATMENT OF POLYCYTHEMIA VERA (PV) IN PATIENTS WHO HAVE HAD AN INADEQUATE RESPONSE TO OR ARE INTOLERANT OF HYDROXYUREA Thus we can hope that a generic appears around that time for
Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is : 24th December 2027 Patent use: FOR TREATMENT OF POLYCYTHEMIA VERA (PV) IN PATIENTS WHO HAVE HAD AN INADEQUATE RESPONSE TO OR ARE INTOLERANT OF HYDROXYUREA Thus we can hope that a generic appears around that time for
Innessant
in
MPN Voice
7 months ago
switch from jakafi (RUX) to Ojjara/momelotinib
has anyone made the switch yet ? The doctor is planning to switch my husband over. He is 74 yrs old with high risk MF. Had taken HU since 2020 then switched to jakifi five months ago but made him more anemic with hemoglobin down to 6.6-7.5 so required blood transfusions monthly Just curious if anyone
has anyone made the switch yet ? The doctor is planning to switch my husband over. He is 74 yrs old with high risk MF. Had taken HU since 2020 then switched to jakifi five months ago but made him more anemic with hemoglobin down to 6.6-7.5 so required blood transfusions monthly Just curious if anyone
Bainbridge
in
MPN Voice
7 months ago
Newly diagnosed Myelofibrosis Stage 2
I was diagnosed with ET JAK2+ in 2016. I was on HU for many years but it started to lose its effectiveness. In May this year I had a bone marrow biopsy and it was discovered my ET has progressed to Stage 2 Myelofibrosis. I was put on Ruxolitinib which works well for me and is definitely a much better
I was diagnosed with ET JAK2+ in 2016. I was on HU for many years but it started to lose its effectiveness. In May this year I had a bone marrow biopsy and it was discovered my ET has progressed to Stage 2 Myelofibrosis. I was put on Ruxolitinib which works well for me and is definitely a much better
Searcher56
in
MPN Voice
8 months ago
Which other drugs are usually used alongside ruxolitinib when it's not having enough effect on its own?
I've been on ruxolitinib for 4 years for my pv. My white count has always been stubbornly high. Consultant has always brushed it off saying it goes with the condition. My last blood test, everything is fine except now my whites have reached an all time high of 45. The consultant mentioned the possibility
I've been on ruxolitinib for 4 years for my pv. My white count has always been stubbornly high. Consultant has always brushed it off saying it goes with the condition. My last blood test, everything is fine except now my whites have reached an all time high of 45. The consultant mentioned the possibility
MCW22
in
MPN Voice
8 months ago
constipation anyone ? Here’s a good solution
hi everyone I ve read here and there posts regarding constipation. If you’re affected you might like to try my homemade rocket muesli! I prefer to make my own because I like organic stuff and knowing what’s gone into my food. you could of course simply buy no sugar muesli and add 2 tablespoons ground
hi everyone I ve read here and there posts regarding constipation. If you’re affected you might like to try my homemade rocket muesli! I prefer to make my own because I like organic stuff and knowing what’s gone into my food. you could of course simply buy no sugar muesli and add 2 tablespoons ground
Loubprv
Volunteer
in
MPN Voice
8 months ago
Diagnosed 2015 complete CBC has changed
last phlebotomy was in June of 2023, since then my HCT is stuck @ 39, HGB is now @ 11.9, MCV,MCH,MCH are dropping each month, RBC is stable @ 5. My ferritin is now 7 with iron @ 21 and % sat @. 5. TIBC AND UIBC are elevated. Fecal test normal no blood. I am exhausted no energy sleeping way too
last phlebotomy was in June of 2023, since then my HCT is stuck @ 39, HGB is now @ 11.9, MCV,MCH,MCH are dropping each month, RBC is stable @ 5. My ferritin is now 7 with iron @ 21 and % sat @. 5. TIBC AND UIBC are elevated. Fecal test normal no blood. I am exhausted no energy sleeping way too
Pickleball11
in
MPN Voice
8 months ago
HU and prefibrotic myelofibrosis
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 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 bad side effects. Dr didn’t want to change med or dosage. I resisted
Apple238
in
CLL Support
1 year ago
Hubby is in remission but still needs to take his A&V for an additional 8.5months.
Great news! Yesterday we were informed that my hubby was in remission. His has ZERO CLL in his blood and all of his lymph nodes and organs are normal. However, his BMB test reflected a MRD = 0.088%. His Dr stated that at a microscopic level there is CLL and by taking his Acalabrutinib and Venetoclax
Great news! Yesterday we were informed that my hubby was in remission. His has ZERO CLL in his blood and all of his lymph nodes and organs are normal. However, his BMB test reflected a MRD = 0.088%. His Dr stated that at a microscopic level there is CLL and by taking his Acalabrutinib and Venetoclax
spi3
in
CLL Support
1 year ago
Ichthyosis
I found some odd looking skin and discovered it was likely ichthyosis which apparently can develop in CLL patents. Anyone had any experience with this condition? Any suggestions or cautions?
I found some odd looking skin and discovered it was likely ichthyosis which apparently can develop in CLL patents. Anyone had any experience with this condition? Any suggestions or cautions?
Rando21
in
CLL Support
1 year ago
V + O , TP53 and p13
after a great read through the recent posts on V+ O I have some confusion 1 my doc said that with a TP 53 mutation and p13 deletion that Zanu was a better option than V+ O. Is that the consensus ? 2 It is a bit disappointing that the PFS for V+ O starts when treatment starts. Is that true of
after a great read through the recent posts on V+ O I have some confusion 1 my doc said that with a TP 53 mutation and p13 deletion that Zanu was a better option than V+ O. Is that the consensus ? 2 It is a bit disappointing that the PFS for V+ O starts when treatment starts. Is that true of
skipro
in
CLL Support
1 year ago
Interactive Tool for Managing BTK Inhibitor−Associated AEs in Hematologic Malignancies: A Global Perspective
The following is intended for medical professionals and uses moderate Med-Speak - you may need to register and download the app to use it as intended. -Len ++++++++++++++++++++++++++++ Interactive Tool for Managing BTK Inhibitor−Associated AEs in Hematologic Malignancies: A Global Perspective
The following is intended for medical professionals and uses moderate Med-Speak - you may need to register and download the app to use it as intended. -Len ++++++++++++++++++++++++++++ Interactive Tool for Managing BTK Inhibitor−Associated AEs in Hematologic Malignancies: A Global Perspective
lankisterguy
Volunteer
in
CLL Support
8 months 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
Statin use, survival and incidence of thrombosis among older patients with polycythemia vera and essential thrombocythemia
Conclusions These findings suggest that it may be important to incorporate statins into the therapeutic strategy for older adults with PV and ET. https://onlinelibrary.wiley.com/doi/10.1002/cam4.6528
Conclusions These findings suggest that it may be important to incorporate statins into the therapeutic strategy for older adults with PV and ET. https://onlinelibrary.wiley.com/doi/10.1002/cam4.6528
Manouche
in
MPN Voice
8 months ago
Changing from hydroxy to Analgride
Hello again to all the people on this wonderful. group. Following post from 10 days ago, when I was taken off hydroxy due to anaemia, I had appt. today, & will be having another bone marrow check, & possibly blood transfusion shortly. Looks as though I,ll be going onto Analgride instead. Can I ask people
Hello again to all the people on this wonderful. group. Following post from 10 days ago, when I was taken off hydroxy due to anaemia, I had appt. today, & will be having another bone marrow check, & possibly blood transfusion shortly. Looks as though I,ll be going onto Analgride instead. Can I ask people
Didgeridoo2
in
MPN Voice
8 months ago
New diagnosis
I have just been diagnosed with CLL via complete blood count. I have not been seen by a haematologist yet (9 May) I an a UK citizen actually living in Spain. Does anyone think or know if taking Vitamin B12 helps.
I have just been diagnosed with CLL via complete blood count. I have not been seen by a haematologist yet (9 May) I an a UK citizen actually living in Spain. Does anyone think or know if taking Vitamin B12 helps.
davjb15121
in
CLL Support
1 year ago
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