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Some results, at last
I had some blood sent for Next Generation Sequencing back in March, I’ve been waiting for the results. Consultant phoned this afternoon, he says I am now post ET MF or words to that effect! My platelets are currently 559, I’m on one capsule of Anagrelide twice a day. I was extremely anaemic and after
I had some blood sent for Next Generation Sequencing back in March, I’ve been waiting for the results. Consultant phoned this afternoon, he says I am now post ET MF or words to that effect! My platelets are currently 559, I’m on one capsule of Anagrelide twice a day. I was extremely anaemic and after
lizzziep
in
MPN Voice
11 months ago
Benzene
Have MPN ppl here been exposed to benzene?I recently read it can be detrimental to the bone marrow. As a child if I got paint on my hands we would clean it off with pure benzene. I'm wondering if that is why I have PV and my sister has lymphoma. My MPN doc says no - the amount would not have been enough
Have MPN ppl here been exposed to benzene?I recently read it can be detrimental to the bone marrow. As a child if I got paint on my hands we would clean it off with pure benzene. I'm wondering if that is why I have PV and my sister has lymphoma. My MPN doc says no - the amount would not have been enough
ERei
in
MPN Voice
11 months ago
Annoyed and Need to Vent
I had a blood that showed elevated counts in RBC’s, hemoglobin, and hematocrit. I got referred to a hematologist who did the JAK2 test and tested my EPO. JAK2 test is not detected & EPO is normal. He suggested that I do not have a MPN, phew what a relief right? Nope. Told me I should give blood every
I had a blood that showed elevated counts in RBC’s, hemoglobin, and hematocrit. I got referred to a hematologist who did the JAK2 test and tested my EPO. JAK2 test is not detected & EPO is normal. He suggested that I do not have a MPN, phew what a relief right? Nope. Told me I should give blood every
Lappool
in
MPN Voice
11 months ago
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Story from The Guardian about gas stoves and links to lymphomas and leukaemias.
https://www.theguardian.com/environment/2023/jun/20/gas-stoves-benzene-levels-study
https://www.theguardian.com/environment/2023/jun/20/gas-stoves-benzene-levels-study
MAP44
in
MPN Voice
1 year ago
Venetoclax has been added to the Pharmaceutical Benefits Scheme in Australia for use as a retreatment for CLL/SLL
In more good news, today the Pharmaceutical Benefits Scheme (PBS) in Australia added venetoclax to its listings for the retreatment of CLL/SLL in those whose disease relapses/progresses after an initial venetoclax-based therapy has controlled it. The PBS Listing states: [i]"Chronic lymphocytic leukaemia
In more good news, today the Pharmaceutical Benefits Scheme (PBS) in Australia added venetoclax to its listings for the retreatment of CLL/SLL in those whose disease relapses/progresses after an initial venetoclax-based therapy has controlled it. The PBS Listing states: [i]"Chronic lymphocytic leukaemia
CLLerinOz
Administrator
in
CLL Support
9 months ago
Myelofibrosis and bone pain
how do people manage bone pain with Myelofibrosis. I used to get a dull ache in my shin bone only at night occasionally but now it is just about daily and is impacting on my ability to sleep. I bought CBD oil but it is not really helping and paracetamol doesn’t work at all. I don’t want to get into
how do people manage bone pain with Myelofibrosis. I used to get a dull ache in my shin bone only at night occasionally but now it is just about daily and is impacting on my ability to sleep. I bought CBD oil but it is not really helping and paracetamol doesn’t work at all. I don’t want to get into
kiwitraveller
in
MPN Voice
1 year ago
eyesight problems
hi all, I hope you are all keeping well. Just wanted to ask people who are on Interferon, have they noticed a vast change in their eyesight or is it just from the Essential Thrombocythemia itself… I know when you usually ask the Haemo docs they don’t know or are not aware of it TIA
hi all, I hope you are all keeping well. Just wanted to ask people who are on Interferon, have they noticed a vast change in their eyesight or is it just from the Essential Thrombocythemia itself… I know when you usually ask the Haemo docs they don’t know or are not aware of it TIA
Grendall
in
MPN Voice
1 year ago
Hydroxyurea to give
Since doc change my meds to Jakafi and Pegasys, I want to give my HU 1 box (100 caps) to anyone who need it.I can to send it to MPN fellow with this treatment who live in Indonesia, simple because cost of air cargo. Cheers
Since doc change my meds to Jakafi and Pegasys, I want to give my HU 1 box (100 caps) to anyone who need it.I can to send it to MPN fellow with this treatment who live in Indonesia, simple because cost of air cargo. Cheers
william-Indo
in
MPN Voice
1 year ago
Ruxolitinib and Hydroxycarbamide
Hi everyone as I posted befor I was on hydroxycarbamide for 16 years. I got worse during covid and was not being seen by haematology only phone calls. My platelets kept going up and they kept putting my hydroxycarbamide up. When I was seen they started me on Ruxolitinib I did well at first but could
Hi everyone as I posted befor I was on hydroxycarbamide for 16 years. I got worse during covid and was not being seen by haematology only phone calls. My platelets kept going up and they kept putting my hydroxycarbamide up. When I was seen they started me on Ruxolitinib I did well at first but could
Mudmaker
in
MPN Voice
1 year ago
hematocrit 23 - blood transfusion
My husband’s mylofrobisis has progressed to high risk . He was just put on jakafi at 10mg twice a day for about a month now He feels much better after changing from droxia to Jakafi and his appetite is good and not as anemic.. however we just came in from seeing his MPN doctor and his hemoglobin
My husband’s mylofrobisis has progressed to high risk . He was just put on jakafi at 10mg twice a day for about a month now He feels much better after changing from droxia to Jakafi and his appetite is good and not as anemic.. however we just came in from seeing his MPN doctor and his hemoglobin
Bainbridge
in
MPN Voice
1 year ago
Is MBL the same as CLL stage 0?
hi. I recently got diagnosed with MBL and I’m reading a lot about CLL stage zero on this board. I’m a little confused with the terminology. I’m trying to understand if it is the same thing or not can anyone help?
hi. I recently got diagnosed with MBL and I’m reading a lot about CLL stage zero on this board. I’m a little confused with the terminology. I’m trying to understand if it is the same thing or not can anyone help?
Jazzandblues
in
CLL Support
10 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
10 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
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
10 months ago
ET accelerated progression
I now need to be treated to try to halt progression to
acute
leukaemia
and if successful followed by a bone marrow transplant. this has come as rather a shock Is anyone else going through this?
I now need to be treated to try to halt progression to
acute
leukaemia
and if successful followed by a bone marrow transplant. this has come as rather a shock Is anyone else going through this?
Smdg
in
MPN Voice
2 years 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
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
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
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