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MF for 30 years
Hello I was first diagnosed with MF in my late 30s when I had two young children. It had a massive effect on my life, as although I didn't have any symptoms at that stage, I was told that I might become seriously ill and potentially die within 10 years. This meant that I gave up worrying about my (non-existent
Hello I was first diagnosed with MF in my late 30s when I had two young children. It had a massive effect on my life, as although I didn't have any symptoms at that stage, I was told that I might become seriously ill and potentially die within 10 years. This meant that I gave up worrying about my (non-existent
Bullace
in
MPN Voice
4 years ago
SF3B1 Mutations
If and when these patients need treatment they should have a targeted therapy or look for a clinical trial of novel agents, rather than have chemo-immunotherapy such as FCR, BR or Chlorambucil. https://ashpublications.org/blood/article/121/23/4627/31480/SF3B1-mutations-in-chronic-
lymphocytic
-
leukemia
If and when these patients need treatment they should have a targeted therapy or look for a clinical trial of novel agents, rather than have chemo-immunotherapy such as FCR, BR or Chlorambucil. https://ashpublications.org/blood/article/121/23/4627/31480/SF3B1-mutations-in-chronic-
lymphocytic
-
leukemia
Jm954
Administrator
in
CLL Support
4 years ago
Night Sweats
Hello CLL Community Friends. I hope you are all doing well, remaining healthy and safe, especially during these unprecedented crazy times. I was diagnosed with CLL in May of 2018. I've been on wait and watch. Just had a visit with my hematology oncologist last week. My numbers look good and my appointment
Hello CLL Community Friends. I hope you are all doing well, remaining healthy and safe, especially during these unprecedented crazy times. I was diagnosed with CLL in May of 2018. I've been on wait and watch. Just had a visit with my hematology oncologist last week. My numbers look good and my appointment
CouldBworse
in
CLL Support
4 years ago
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On bone marrow biopsy (BMB)?
Hello everyone, People with PV/ET regularly (e.g., per month) test their blood to keep track of cell counts and other things. How about bone marrow biopsy (BMB)? Are there repeats of BMB test to check changes after the first one that was performed to detect any mutation like JK2 ? If yes, how the results
Hello everyone, People with PV/ET regularly (e.g., per month) test their blood to keep track of cell counts and other things. How about bone marrow biopsy (BMB)? Are there repeats of BMB test to check changes after the first one that was performed to detect any mutation like JK2 ? If yes, how the results
samiris
in
MPN Voice
4 years ago
On the possible use of mushrooms and natural supplements, and their potential benefits, with citations
Published online 2014 Mar 20 *** “There is accumulating evidence that green tea extract EGCG [(-)-epigallocatechin-3-gallate] may exert a preventive or a direct anti-tumor effect in several tumor types including chronic
lymphocytic
leukemia
(CLL).
Published online 2014 Mar 20 *** “There is accumulating evidence that green tea extract EGCG [(-)-epigallocatechin-3-gallate] may exert a preventive or a direct anti-tumor effect in several tumor types including chronic
lymphocytic
leukemia
(CLL).
Pogee
in
CLL Support
4 years ago
VenR in Relapsed CLL: 4-Year Results and Evaluation of Impact of Genomic Complexity and Gene Mutations from MURANO 3 study
This is an important evaluation and insight into how your CLL profile affects your response to VR in relapsed and refractory CLL. Sadly it looks like bad genetics is still relatively bad news in terms of PFS even on VenR. "[i]In previous analyses of the MURANO study, fixed-duration venetoclax plus rituximab
This is an important evaluation and insight into how your CLL profile affects your response to VR in relapsed and refractory CLL. Sadly it looks like bad genetics is still relatively bad news in terms of PFS even on VenR. "[i]In previous analyses of the MURANO study, fixed-duration venetoclax plus rituximab
Jm954
Administrator
in
CLL Support
4 years ago
Joint pain/Bone pain with MF
Recently diagnosed with post ET MF, I have started to get aching in my knees and wrists/hands. I will be able to ask my consultant about it next week but I wondered if this is common with MF or possibly to do with Ruxolitinib. I'm not clear on what bone pain would feel like. It seems to happen more
Recently diagnosed with post ET MF, I have started to get aching in my knees and wrists/hands. I will be able to ask my consultant about it next week but I wondered if this is common with MF or possibly to do with Ruxolitinib. I'm not clear on what bone pain would feel like. It seems to happen more
Otterfield
in
MPN Voice
4 years ago
MPN-u unclassified
Hi I’ve only just been diagnosed with MPN-u unclassified so still trying to get my head around things .Am I right I’m thinking it’s a slow growth blood cancer ? I have no mutations but slightly raised platelets ( for 21years & I’m 51) but slight scarring on bone marrow which is a little fibrous .Really
Hi I’ve only just been diagnosed with MPN-u unclassified so still trying to get my head around things .Am I right I’m thinking it’s a slow growth blood cancer ? I have no mutations but slightly raised platelets ( for 21years & I’m 51) but slight scarring on bone marrow which is a little fibrous .Really
Lizzy19
in
MPN Voice
4 years ago
Some good news and hope
A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland. After 3 very sick years we were fortunate that she was able to access a clinical trial in the UK and in 2014 started a drug Ibrutinib which targets the cancer. Her
A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland. After 3 very sick years we were fortunate that she was able to access a clinical trial in the UK and in 2014 started a drug Ibrutinib which targets the cancer. Her
Irishcll
in
CLL Support
4 years ago
Are immature cells bad and why do I need another bone marrow biopsy?
Have been MF for 15 months and being treated with Ruxolitinib. Not showing any symptoms and feel well, other than an enlarged spleen. Blood counts are good, except for a slightly lower Haemaglobin concentrate, and slightly increased white cells. My last blood test showed some immature velds, so they
Have been MF for 15 months and being treated with Ruxolitinib. Not showing any symptoms and feel well, other than an enlarged spleen. Blood counts are good, except for a slightly lower Haemaglobin concentrate, and slightly increased white cells. My last blood test showed some immature velds, so they
billybrock
in
MPN Voice
4 years ago
Starting hydroxycarbamide and scared!
Hi everyone. It's been a while since I posted but I have been reading a lot on here and find it so reassuring and comforting. I an 60, have PRV Jak2+ diagnosed 4 years ago and thought I was going to start Peginterferon in a couple of weeks (I had delayed starting last year as had holiday booked in
Hi everyone. It's been a while since I posted but I have been reading a lot on here and find it so reassuring and comforting. I an 60, have PRV Jak2+ diagnosed 4 years ago and thought I was going to start Peginterferon in a couple of weeks (I had delayed starting last year as had holiday booked in
Tmg59
in
MPN Voice
4 years ago
Who s tried to get a blue badge with an advanced MPN
My wife is pushing me to apply to get a blue badge. My last pre transfusion Hb was 47 and I really thought that I was at risk of a severe superior mesenteric artey failure . Pre transfusion I did not eat for 4 days as anything in my stomach caused ischaemic symtoms which were only relieved by lying on
My wife is pushing me to apply to get a blue badge. My last pre transfusion Hb was 47 and I really thought that I was at risk of a severe superior mesenteric artey failure . Pre transfusion I did not eat for 4 days as anything in my stomach caused ischaemic symtoms which were only relieved by lying on
skodaguy
in
MPN Voice
4 years ago
Night Sweats
I was diagnosed with CLL May of 2018. Still on wait & watch. I am 61. Over the last 40 years I would get periodic night sweats, very randomly. Once a year, then over the last 20 years, I would have a few night sweats year. Over the last 5 years, I get them a few days in a row, then nothing for months
I was diagnosed with CLL May of 2018. Still on wait & watch. I am 61. Over the last 40 years I would get periodic night sweats, very randomly. Once a year, then over the last 20 years, I would have a few night sweats year. Over the last 5 years, I get them a few days in a row, then nothing for months
CouldBworse
in
CLL Support
4 years ago
Myelofibrosis - thank you for the support
A few days ago I posted about my new diagnosis of post ET Myelofibrosis and I just want to say thank you for all the responses and support I received. Without this forum I would feel quite lost. I'm feeling absolutely exhausted today, as if having my morning shower was enough exertion for one day. However
A few days ago I posted about my new diagnosis of post ET Myelofibrosis and I just want to say thank you for all the responses and support I received. Without this forum I would feel quite lost. I'm feeling absolutely exhausted today, as if having my morning shower was enough exertion for one day. However
Otterfield
in
MPN Voice
4 years ago
CLL Expert Access 2nd Opinion from CLL Society from your home at no cost -unfortunately for USA Residents only
A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! APPLY NOW! • Easy to qualify • Easy to apply online • No need to leave your house https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program application: https://cllsociety.org/2019-expert-access-start
A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! APPLY NOW! • Easy to qualify • Easy to apply online • No need to leave your house https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program application: https://cllsociety.org/2019-expert-access-start
lankisterguy
Volunteer
in
CLL Support
4 years ago
Triplet Regimen Shows Promise in CLL -Zanubrutinib, obinutuzumab, & venetoclax combo achieves rapid undetectable MRD -MedPageToday -07/07/20
leukemia
(CLL).
leukemia
(CLL).
cujoe
in
CLL Support
4 years ago
Hibernation mode, painful hands and fuzzy eyesight.
Well as you can guess by the heading this is a bit of me at the moment. Probably not helping myself as I've been trying to do some embroidery at the moment in an effort to distract myself from other things namely the crazy itching. Maybe I'll get the sewing machines out and make myself some much needed
Well as you can guess by the heading this is a bit of me at the moment. Probably not helping myself as I've been trying to do some embroidery at the moment in an effort to distract myself from other things namely the crazy itching. Maybe I'll get the sewing machines out and make myself some much needed
Boudica1
in
LUPUS UK
4 years ago
Encouraging article on Calquence (acalabrutinib)
https://www.survivornet.com/articles/how-is-calquence-used-for-chronic-
lymphocytic
-
leukemia
/
https://www.survivornet.com/articles/how-is-calquence-used-for-chronic-
lymphocytic
-
leukemia
/
Research123
in
CLL Support
4 years ago
Anyone diagnosed SM-AHN?
Jak2 and D816v CKit positive. Anyone dx with both mutations? Systemic Madtocytosis and Polycythemia Vera
Jak2 and D816v CKit positive. Anyone dx with both mutations? Systemic Madtocytosis and Polycythemia Vera
shaks
in
MPN Voice
4 years ago
ET progressed to Myelofibrosis
I was discharged from hospital yesterday, originally admitted with shortness of breath but was soon diagnosed with Myelofibrosis. It was a huge shock as my haematologist has repeatedly told me that my falling blood counts could not be MF as my WBC were falling. I was treated by a different consultant
I was discharged from hospital yesterday, originally admitted with shortness of breath but was soon diagnosed with Myelofibrosis. It was a huge shock as my haematologist has repeatedly told me that my falling blood counts could not be MF as my WBC were falling. I was treated by a different consultant
Otterfield
in
MPN Voice
4 years ago
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