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Chronic leukaemia
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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
11 months ago
What does having a NEW KIDNEY feel like?
Hi All, I have been in the transplant list for a year now and still waiting to get called. I can’t just help to wonder what having a kidney transplant will feel like. Apart from the fact that it will be a gift of life and freedom from being tied down to dialysis. What does it feel like? Will you
Hi All, I have been in the transplant list for a year now and still waiting to get called. I can’t just help to wonder what having a kidney transplant will feel like. Apart from the fact that it will be a gift of life and freedom from being tied down to dialysis. What does it feel like? Will you
Imaanforever
in
Kidney Dialysis
6 months 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
11 months ago
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Can anyone figure out my MRD
Can anyone figure out what my MRD ( CLL cells per 10,000) is from this report. Component Your Value Standard Range Interpretation Flow cytometric immunophenotyping performed on the peripheral blood shows a small, dim kappa restricted B-cell population (representing ~98% of B cells, 6% of total
Can anyone figure out what my MRD ( CLL cells per 10,000) is from this report. Component Your Value Standard Range Interpretation Flow cytometric immunophenotyping performed on the peripheral blood shows a small, dim kappa restricted B-cell population (representing ~98% of B cells, 6% of total
johnliston
in
CLL Support
1 year ago
1 Year Anniversary (Nov 16)
Good evening, Yesterday, Nov 16, 2023, was the one year anniversary for my kidney transplant. Cindy (my donor kidney named after my good friend who helped me decide to pursue transplant eligibility testing) has been a trooper this year. She has soldiered forward without faltering as we’ve battled very
Good evening, Yesterday, Nov 16, 2023, was the one year anniversary for my kidney transplant. Cindy (my donor kidney named after my good friend who helped me decide to pursue transplant eligibility testing) has been a trooper this year. She has soldiered forward without faltering as we’ve battled very
Jayhawker
in
Kidney Dialysis
6 months 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
11 months ago
CLL Educational Webinar
This educational webinar will give an overview of how CLL is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international hematology conferences. What is new and what does this mean for patients? We will be joined by: Prof Paolo
This educational webinar will give an overview of how CLL is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international hematology conferences. What is new and what does this mean for patients? We will be joined by: Prof Paolo
Irishcll
in
CLL Support
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
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
Patient Empowerment Network New CLL Content March 2023
Dr. Michael Choi explains CLL patient trial opportunities and provides key questions to ask about clinical trial participation View Now >> https://powerfulpatients.org/2022/12/07/hesitant-to-participate-in-a-cll-clinical-trial-what-you-should-know/ - Developing CLL Research and Treatment News
Dr. Michael Choi explains CLL patient trial opportunities and provides key questions to ask about clinical trial participation View Now >> https://powerfulpatients.org/2022/12/07/hesitant-to-participate-in-a-cll-clinical-trial-what-you-should-know/ - Developing CLL Research and Treatment News
lankisterguy
Volunteer
in
CLL Support
1 year ago
Check out our Kidney Disease Education courses on the Kidney Learning Center!
Want to know more about your choices for kidney failure treatment? Sign up for our NEW, self-paced education program to learn more ALL of your options, including kidney transplant, both kinds of dialysis (peritoneal dialysis and hemodialysis), and medical management, or no treatment. https://learningcenter.kidney.org
Want to know more about your choices for kidney failure treatment? Sign up for our NEW, self-paced education program to learn more ALL of your options, including kidney transplant, both kinds of dialysis (peritoneal dialysis and hemodialysis), and medical management, or no treatment. https://learningcenter.kidney.org
KateyC_NKF
Partner
in
Kidney Dialysis
7 months ago
Relapse/Refractory CLL
Hi All, At my last appointment w/CLL specialist, in December, he noted that my CLL appears to be becoming active again and I'll likely need treatment again this year. :( Instead of the usual 6-months, he set our next appointment for 3-months, which is coming up this week. So, of course, I've been
Hi All, At my last appointment w/CLL specialist, in December, he noted that my CLL appears to be becoming active again and I'll likely need treatment again this year. :( Instead of the usual 6-months, he set our next appointment for 3-months, which is coming up this week. So, of course, I've been
TeamDirtyBoots
in
CLL Support
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
11 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
11 months ago
I make trying to suppress EBV a leg of my supplement strategy.
I replied to a comment with this comment, then decided to share it as a post also:
As somebody who has been exposed to EBV (mono), I make trying to suppress EBV a leg of my supplement strategy. I need to write up everything I think helps with EBV, but here is a short list: -
Lactobacillus
I replied to a comment with this comment, then decided to share it as a post also:
As somebody who has been exposed to EBV (mono), I make trying to suppress EBV a leg of my supplement strategy. I need to write up everything I think helps with EBV, but here is a short list: -
Lactobacillus
Bolt_Upright
in
Cure Parkinson's
4 months 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
Mild aortic stenosis...is this normal?
A heart mumur was picked up when I was at the a&e back in June. Had an echocardiogram done September. Finally after trying to chase the a&e cardiologist who checked the echocardiogram he said my results were all normal. So I requested my results to check for myself as I feel rotten daily and it's says
A heart mumur was picked up when I was at the a&e back in June. Had an echocardiogram done September. Finally after trying to chase the a&e cardiologist who checked the echocardiogram he said my results were all normal. So I requested my results to check for myself as I feel rotten daily and it's says
Charts
in
Hughes Syndrome APS Forum
8 months ago
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