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Importance of CLL Specialist
This excellent study was just published. Why should you get a CLL specialist? My community oncologist gave me a fish and a flow test and told me that I wouldn’t need treatment for 3-5 years. He didn’t test for IGVH and didn’t know that there is a specific TP53 test. My CLL specialist tested for 500 mutations
This excellent study was just published. Why should you get a CLL specialist? My community oncologist gave me a fish and a flow test and told me that I wouldn’t need treatment for 3-5 years. He didn’t test for IGVH and didn’t know that there is a specific TP53 test. My CLL specialist tested for 500 mutations
PennyLane2024
in
CLL Support
2 months ago
Complete Remission
My Complete Blood Count (CBC) results state the normal range for Lymphocytes is 850-3900 cells/uL. The NCCN CLL guidelines for Complete Remission (CR) states Lymphocytes must be less than 5000 cells/uL. Why is 5000 cells/uL an acceptable NCCN CLL CR level for Lymphocytes when the maximum for the Complete
My Complete Blood Count (CBC) results state the normal range for Lymphocytes is 850-3900 cells/uL. The NCCN CLL guidelines for Complete Remission (CR) states Lymphocytes must be less than 5000 cells/uL. Why is 5000 cells/uL an acceptable NCCN CLL CR level for Lymphocytes when the maximum for the Complete
leftysfsl1945
in
CLL Support
2 months ago
PV and AMD?
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
sbs_patient
in
MPN Voice
7 months ago
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11 months Post SCT
I’ve been wanting to update my Stem Cell Transplant journey with good news and today I was going to post that, instead I’ve been told that a lot of my lymph nodes are enlarged again. It’s so disappointing to say the least, not what I was expecting as I feel quite well and most of the GVHD issues have
I’ve been wanting to update my Stem Cell Transplant journey with good news and today I was going to post that, instead I’ve been told that a lot of my lymph nodes are enlarged again. It’s so disappointing to say the least, not what I was expecting as I feel quite well and most of the GVHD issues have
Billarina
in
CLL Support
25 days ago
Just 5% of therapies tested in animals end up as as human drugs, new study shows. CLL research has particular challenges due to the TME
There's a long and challenging journey from microscope observations of cancer cells hopefully dying while exposed to candidate therapies, that is, 'in vitro' testing, to successful in vivo human studies, clinical trials and eventual approval. Not only does the therapy need to kill the cancer cells with
There's a long and challenging journey from microscope observations of cancer cells hopefully dying while exposed to candidate therapies, that is, 'in vitro' testing, to successful in vivo human studies, clinical trials and eventual approval. Not only does the therapy need to kill the cancer cells with
AussieNeil
Partner
in
CLL Support
2 months ago
NICE: Teprotumumab for treating thyroid eye disease ID 6432 - being scoped
I have just noticed a new NICE guideline has been started. Only a skeleton at present - in the guideline scoping state. It will probably be years before it is completed. It is good that it has been selected for further work but must be devastating for anyone suffering TED to see how far away this (potential
I have just noticed a new NICE guideline has been started. Only a skeleton at present - in the guideline scoping state. It will probably be years before it is completed. It is good that it has been selected for further work but must be devastating for anyone suffering TED to see how far away this (potential
helvella
Thyroid UK
in
Thyroid UK
4 months ago
Leukemia-associated macrophages, their role in the CLL Tumor Micro-environment and how they affect progression and therapy response
Understanding how the CLL Tumor Micro-environment (TME) functions is crucial to improving CLL therapy. CLL cells are not as robust as healthy B cells and they rely on their created TME in the nodes and bone marrow for their survival. That's why it's so easy to kill CLL cells with in vitro testing - checking
Understanding how the CLL Tumor Micro-environment (TME) functions is crucial to improving CLL therapy. CLL cells are not as robust as healthy B cells and they rely on their created TME in the nodes and bone marrow for their survival. That's why it's so easy to kill CLL cells with in vitro testing - checking
AussieNeil
Partner
in
CLL Support
2 months ago
Polyneuropathy.
I treat my polyneuropathy with B6 and B12. GracePV shared their experience with B6, B12 nd B1. This inspired me to revisit my self treatment of my polyneuropathy. I came across information about Benfotiamine which is similar to Thiamine Hydrochloride and Thiamine Nitrate. There are indications
I treat my polyneuropathy with B6 and B12. GracePV shared their experience with B6, B12 nd B1. This inspired me to revisit my self treatment of my polyneuropathy. I came across information about Benfotiamine which is similar to Thiamine Hydrochloride and Thiamine Nitrate. There are indications
WIZARD6787
in
Pernicious Anaemia Society
4 months ago
lymphocytic leucocytosis
I have CLL diagnosed a year ago, just had my bloods done last week, the results have come back with lymphocytic leucocytosis does anyone know if this is a bad thing not heard if this before. Donnax
I have CLL diagnosed a year ago, just had my bloods done last week, the results have come back with lymphocytic leucocytosis does anyone know if this is a bad thing not heard if this before. Donnax
PusscatsGoodies
in
CLL Support
3 months ago
Myelofibrosis- GVHD graft, versus, host, disease.
Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
FreemanSaviors
in
MPN Voice
2 months ago
Myelofibrosis - GVHD - graft, versus, host, disease
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
FreemanSaviors
in
MPN Voice
2 months ago
STEM CELL TRANSPLANT FINALLY SCHEDULED (WE HOPE)
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
dwolden
in
CLL Support
2 months ago
itchy skin
Hi all, I have this terrible itchy skin,mostly arms and legs,after any contact with water,apart from the swimming pool,strangely,and wondered if anyone could recommend a cream that would help. I take a high dose fexofenadine before water but it doesnt really help.I asked my GP,who prescribed a tube
Hi all, I have this terrible itchy skin,mostly arms and legs,after any contact with water,apart from the swimming pool,strangely,and wondered if anyone could recommend a cream that would help. I take a high dose fexofenadine before water but it doesnt really help.I asked my GP,who prescribed a tube
Nursey30
in
MPN Voice
8 months ago
New DX
I am a 76 yo woman. I was DX in 2016 and was in a trial at MD Anderson from 2017-2019. I achieved UMRD at the end of the trial of Ibrutinib and Venetoclax. I remained in total remission until my first visit after my husband died from Alzheimer’s in Oct 2021. Since then it’s been downhill. Dr Wierda
I am a 76 yo woman. I was DX in 2016 and was in a trial at MD Anderson from 2017-2019. I achieved UMRD at the end of the trial of Ibrutinib and Venetoclax. I remained in total remission until my first visit after my husband died from Alzheimer’s in Oct 2021. Since then it’s been downhill. Dr Wierda
pkpayne
in
CLL Support
3 months ago
A recent consultation with a CLL specialist, and confirmation of genetic markers
My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also performed other blood tests. I had a pleasant consultation with Dr. Chen. I was perplexed because of the TP53 mutation, whether it was discovered or not. I posted an earlier post that she has a TP53 mutation. I am sorry for
My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also performed other blood tests. I had a pleasant consultation with Dr. Chen. I was perplexed because of the TP53 mutation, whether it was discovered or not. I posted an earlier post that she has a TP53 mutation. I am sorry for
Sagarcanada
in
CLL Support
3 months ago
Xpo1 significance
Not been active for a while as my wife is on watch and wait since initially being diagnosed two years ago at 41.Eric blood panels have come back with Xpo1 mutation which we are told significantly increases the chances of needing treatment. Going through the details we got but there seems to be a trial
Not been active for a while as my wife is on watch and wait since initially being diagnosed two years ago at 41.Eric blood panels have come back with Xpo1 mutation which we are told significantly increases the chances of needing treatment. Going through the details we got but there seems to be a trial
NewCll
in
CLL Support
3 months ago
Ruxolitinib is intolerant, what should I do
I started taking Ruxolitinib at the end of 2018, when I had a huge spleen, MF3, and was 31 years old. I have been taking this medication for 5 years now. Maybe it's because my situation is worse, because I've been feeling like I have PMF since 2012, but I wasn't diagnosed or intervened until 2017 when
I started taking Ruxolitinib at the end of 2018, when I had a huge spleen, MF3, and was 31 years old. I have been taking this medication for 5 years now. Maybe it's because my situation is worse, because I've been feeling like I have PMF since 2012, but I wasn't diagnosed or intervened until 2017 when
merlisa
in
MPN Voice
8 months ago
Sorry it has been a while with an update on Ruxolitinib
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
wendycu
in
MPN Voice
3 months ago
a diagnosis at last
saw consultant yesterday I have almost completed diagnosis few more tests to come . it would seem that my CLL has mutated into a quite a rare lymphoma I don’t think I have it quite right but it’s called ana plastic lymphoma ( apparently a rare form that mutates from CLL ) I will have six courses
saw consultant yesterday I have almost completed diagnosis few more tests to come . it would seem that my CLL has mutated into a quite a rare lymphoma I don’t think I have it quite right but it’s called ana plastic lymphoma ( apparently a rare form that mutates from CLL ) I will have six courses
Hilo13
in
CLL Support
3 months ago
Introduction
Hi I decided to join after my wife recommended this truly excellent resource and community. I have recently been diagnosed with CLL and are finding this place a goldmine of advice and support. Not really looking forward to reading more about the condition but need to understand what’s going
Hi I decided to join after my wife recommended this truly excellent resource and community. I have recently been diagnosed with CLL and are finding this place a goldmine of advice and support. Not really looking forward to reading more about the condition but need to understand what’s going
bodgit
in
CLL Support
3 months ago
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