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Feeling Happier
He explained about the risks of my MF transforming, because of the mutations I have, he said possibly In around 5 years I had a 20-25% chance of
leukaemia
, but 75% of NOT having it, and by 10 years the risk increased to around 37%. So I’m feeling a lot more positive.
He explained about the risks of my MF transforming, because of the mutations I have, he said possibly In around 5 years I had a 20-25% chance of
leukaemia
, but 75% of NOT having it, and by 10 years the risk increased to around 37%. So I’m feeling a lot more positive.
lizzziep
in
MPN Voice
11 months ago
Fibro rant
I appreciate I've had quite a lot of time off work with this and losing my Dad to
leukaemia
in October last year. However I didn't appreciate my firm asking if I wanted voluntary redundancy..... I've been there 10 years worked hard and right now need some understanding and support.
I appreciate I've had quite a lot of time off work with this and losing my Dad to
leukaemia
in October last year. However I didn't appreciate my firm asking if I wanted voluntary redundancy..... I've been there 10 years worked hard and right now need some understanding and support.
Marieg1270
in
Fibromyalgia Action UK
1 year ago
Epipen - Serious Nut Allergy
EpiPen - Serious Nut Allergy Good afternoon, My daughter got tested today at Preston Hospital, she tested positive for all types of nuts and was told she has Serious Nut Allergy which is Life Threatening without the Use of an Injectable EpiPen. My daughter was given one today at Hospital. Her Question
EpiPen - Serious Nut Allergy Good afternoon, My daughter got tested today at Preston Hospital, she tested positive for all types of nuts and was told she has Serious Nut Allergy which is Life Threatening without the Use of an Injectable EpiPen. My daughter was given one today at Hospital. Her Question
Joseph260268
in
Lung Conditions Community Forum
1 year ago
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A ‘wobble’ caused by subset 6 CLL.
Hi all, a very ocasional póster here but avid reader of the many highly informed contributors that make this site what it is. I was diagnosed with stage ‘A’ CLL in 2021 and continue to be on W & W. I have many of the classic symptoms but not severe enough to warrant treatment - yet! I’ve recently been
Hi all, a very ocasional póster here but avid reader of the many highly informed contributors that make this site what it is. I was diagnosed with stage ‘A’ CLL in 2021 and continue to be on W & W. I have many of the classic symptoms but not severe enough to warrant treatment - yet! I’ve recently been
Petroc
in
CLL Support
1 year ago
Ruxolitinib
Hi all, I have PV and AB is high , around 81% , spleen size slightly increased but if I didn’t know I have PV I would think I am the healthiest person around as I have no symptoms. I was diagnosed end of 2018 but had it al least since 2015. I am considering taking a part in clinical trial for Ruxo and
Hi all, I have PV and AB is high , around 81% , spleen size slightly increased but if I didn’t know I have PV I would think I am the healthiest person around as I have no symptoms. I was diagnosed end of 2018 but had it al least since 2015. I am considering taking a part in clinical trial for Ruxo and
Ameliav
in
MPN Voice
1 year ago
Ruxalitinib and Peg interferon
AS previously mentioned my husband {He has PV and MPN} has for the past 6 years been on Ruxolitinib . He has now been advised that owing to quite a few skin cancers the last one being Squamous skin cancer with extensive scalp debridement. All in all in past 3 years he has had approx 7/8 basil cell
AS previously mentioned my husband {He has PV and MPN} has for the past 6 years been on Ruxolitinib . He has now been advised that owing to quite a few skin cancers the last one being Squamous skin cancer with extensive scalp debridement. All in all in past 3 years he has had approx 7/8 basil cell
waddles22
in
MPN Voice
1 year ago
Doctors opinion ….
Obviously I am very concerned about transforming to
Leukaemia
, and would like to prevent that if possible, even though he said it would probably be a couple of years at least. I am 70 and not ready to go yet! I will see what Professor Harrison’s opinion is.
Obviously I am very concerned about transforming to
Leukaemia
, and would like to prevent that if possible, even though he said it would probably be a couple of years at least. I am 70 and not ready to go yet! I will see what Professor Harrison’s opinion is.
lizzziep
in
MPN Voice
1 year ago
Besremi, Pegasys and Jakafi adverse event question?
As said before, my brother started Besremi recently. And since then I am doing some researches about the safety of drugs for PV and other MPN. To ease my anxious, I guess, my brother sent me a slide seems from Pharmaessential (the mfg of Besremi), as above. The title of the slide is "Besremi is far
As said before, my brother started Besremi recently. And since then I am doing some researches about the safety of drugs for PV and other MPN. To ease my anxious, I guess, my brother sent me a slide seems from Pharmaessential (the mfg of Besremi), as above. The title of the slide is "Besremi is far
Joey1025
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
1 year ago
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
1 year 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
1 year 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
1 year ago
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
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
1 year 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
Anyone able to put on weight with bile salt malabsorption?
living with bile salt malabsorption from radiation to treat
leukaemia
. I reckon my weight has been a steady 20% less than it should be. And I have a very low BMI. Cholestyramine has made a HUGE difference to my condition. But has anyone found a way to increase weight?
living with bile salt malabsorption from radiation to treat
leukaemia
. I reckon my weight has been a steady 20% less than it should be. And I have a very low BMI. Cholestyramine has made a HUGE difference to my condition. But has anyone found a way to increase weight?
adamcjames
in
Pelvic Radiation Disease Association
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
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