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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
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
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Chronic Lymphocytic Leukemia Information & Resources Around the World
Part 1 - GENERAL CLL INFORMATION & UK RESOURCES https://healthunlocked.com/cllsupport/posts/148763462/chronic-
lymphocytic
-
leukemia
-information-resources-around-the-world?
Part 1 - GENERAL CLL INFORMATION & UK RESOURCES https://healthunlocked.com/cllsupport/posts/148763462/chronic-
lymphocytic
-
leukemia
-information-resources-around-the-world?
CLLerinOz
Administrator
in
CLL Support
2 years 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
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
11 months ago
CLL Advocates Network webinar today 7th Dec at 5pm GMT
"How are advances in Bruton’s tyrosine kinase targeted therapies continuing to change how chronic
lymphocytic
leukemia
(CLL) is treated?" CLL Ireland patient advocate Jan Rynne will share her experience living with CLL for 11 years and now on a BTK inhibitor for more than eight years.
"How are advances in Bruton’s tyrosine kinase targeted therapies continuing to change how chronic
lymphocytic
leukemia
(CLL) is treated?" CLL Ireland patient advocate Jan Rynne will share her experience living with CLL for 11 years and now on a BTK inhibitor for more than eight years.
Irishcll
in
CLL Support
2 years 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
11 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
BTK Inhibitor Therapy for CLL: An International Perspective - Stephan Stilgenbauer, MD
- The treatment of patients with chronic
lymphocytic
leukemia
(CLL) has evolved rapidly in recent years.
- The treatment of patients with chronic
lymphocytic
leukemia
(CLL) has evolved rapidly in recent years.
lankisterguy
Volunteer
in
CLL Support
1 year ago
PMR and CLL
However, have since been diagnosed with CLL (chronic
lymphocytic
leukemia
) - many symptoms are very similar to PMR. Asked the Hematologist if the 2 could be related. She said I definitely had PMR and CLL and didn't 'think' there was a link - although both are auto immune diseases.
However, have since been diagnosed with CLL (chronic
lymphocytic
leukemia
) - many symptoms are very similar to PMR. Asked the Hematologist if the 2 could be related. She said I definitely had PMR and CLL and didn't 'think' there was a link - although both are auto immune diseases.
Pocketdog
in
PMRGCAuk
1 year ago
A tip for Australians with Chronic Lymphocytic Leukemia trying to access pneumococcal vaccination through the National Immunisation Program
https://healthunlocked.com/cllsupport/posts/148546478/vaccinations-for-people-with-chronic-
lymphocytic
-
leukemia
-cll-sll Here's a link to Australia's updated National Immunisation Schedule: https://www.health.gov.au/sites/default/files/documents/2021/10/national-immunisation-program-schedule-for-all-people.pdf
https://healthunlocked.com/cllsupport/posts/148546478/vaccinations-for-people-with-chronic-
lymphocytic
-
leukemia
-cll-sll Here's a link to Australia's updated National Immunisation Schedule: https://www.health.gov.au/sites/default/files/documents/2021/10/national-immunisation-program-schedule-for-all-people.pdf
CLLerinOz
Administrator
in
CLL Support
1 year ago
Survival Outcome Observation
An interesting publication offer relative to recent survival outcome data provided by CLL Society from ASCO 2022 - https://cllsociety.org/2022/11/asco-2022-survival-outcomes-in-patients-with-chronic-
lymphocytic
-
leukemia
-treated-at-academic-centers/ Video posting from above article - https://youtu.be
An interesting publication offer relative to recent survival outcome data provided by CLL Society from ASCO 2022 - https://cllsociety.org/2022/11/asco-2022-survival-outcomes-in-patients-with-chronic-
lymphocytic
-
leukemia
-treated-at-academic-centers/ Video posting from above article - https://youtu.be
Smakwater
in
CLL Support
2 years 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
11 months ago
Relative risk for secondary bone marrow cancer within 5 years after initial CLL chemoimmunotherapy treatment (typically BR or FCR)
In countries where targeted therapies ('brutinibs, venetoclax, obinutuzumab/rituximab) are now available, the remaining reason that FCR (Fludarabine+Cyclophosphamide+Rituximab) is still sometimes recommended for the treatment of CLL is that it can be curative* about 55% of the time - but [u]
only[
In countries where targeted therapies ('brutinibs, venetoclax, obinutuzumab/rituximab) are now available, the remaining reason that FCR (Fludarabine+Cyclophosphamide+Rituximab) is still sometimes recommended for the treatment of CLL is that it can be curative* about 55% of the time - but [u]
only[
AussieNeil
Partner
in
CLL Support
11 months 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
If you have/have had an acute leukaemia, please help us by completing this survey
We’re working with ALAN (Acute Leukaemia Advocates Network) and OHE (Office of Health Economics) to understand the outcomes of people with acute leukaemia and in doing so we need to understand what aspects of treatment are most important to them. If you are 18+, living in the UK and have been diagnosed
We’re working with ALAN (Acute Leukaemia Advocates Network) and OHE (Office of Health Economics) to understand the outcomes of people with acute leukaemia and in doing so we need to understand what aspects of treatment are most important to them. If you are 18+, living in the UK and have been diagnosed
LCAlex
in
Leukaemia Support
1 year 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
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