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Mast cell leukaemia
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Ideas for supporting dad in his last days
Hi, I wish this were a more positive first post and I hope everyone else reading this who has or is involved with a blood cancer has a much more positive outcome but... My dad only has a few weeks, at best to live. He had myeloifibrosis (sorry if spelt wrong). It's transformed in the past couple of weeks
Hi, I wish this were a more positive first post and I hope everyone else reading this who has or is involved with a blood cancer has a much more positive outcome but... My dad only has a few weeks, at best to live. He had myeloifibrosis (sorry if spelt wrong). It's transformed in the past couple of weeks
Sebnose
in
Leukaemia Support
5 years ago
IGVH Hypermutation test.
I went to a CLL specialist and they did IGVH testing. An email informed that I had a new test before the doctor actually called me. I think it is saying that I am not hyper mutated. It reads like this: "IGVH analysis by sequencing demonstrates a clonal but functionally unproductive rearrangement.
I went to a CLL specialist and they did IGVH testing. An email informed that I had a new test before the doctor actually called me. I think it is saying that I am not hyper mutated. It reads like this: "IGVH analysis by sequencing demonstrates a clonal but functionally unproductive rearrangement.
Camaroman
in
CLL Support
5 years ago
Nplate clots
Jazzbo77 I was wondering how many Itp suffers took Nplate but developed blood clots at 55-75k platelets? I did in Oct-Dec 2014 and the more shots I took the more the clots spread until my Dr stopped the Nplate. I found 4 others that had the same thing on Nplate and one on promacta. The Drs stopped each
Jazzbo77 I was wondering how many Itp suffers took Nplate but developed blood clots at 55-75k platelets? I did in Oct-Dec 2014 and the more shots I took the more the clots spread until my Dr stopped the Nplate. I found 4 others that had the same thing on Nplate and one on promacta. The Drs stopped each
Jazzbo77
in
ITP Support Association
5 years ago
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Just diagnosed with Essential Thrombocythemia
Hi everyone, I'm new here. I cannot tell you how happy I am that I found this site and how much reading all of your responses to others have helped me to remain calm. I was told today that I am being referred to a hematologist and that I have Essential Thrombocythemia. I'm so anxious and afraid of
Hi everyone, I'm new here. I cannot tell you how happy I am that I found this site and how much reading all of your responses to others have helped me to remain calm. I was told today that I am being referred to a hematologist and that I have Essential Thrombocythemia. I'm so anxious and afraid of
Beachchik
in
MPN Voice
5 years ago
Granddaughter diagnosed with acute lymphoblastic leukaemia
My 4 year old granddaughter was diagnosed with acute lymphoblastic leukaemia about 5 weeks ago. She has been in hospital on and off for about 4 weeks. She keeps getting infections and viruses and has had gruelling chemotherapy. She has a 5 year old brother and a 7 month old sister so life is fraught
My 4 year old granddaughter was diagnosed with acute lymphoblastic leukaemia about 5 weeks ago. She has been in hospital on and off for about 4 weeks. She keeps getting infections and viruses and has had gruelling chemotherapy. She has a 5 year old brother and a 7 month old sister so life is fraught
Nanny1952
in
Leukaemia Support
5 years ago
Transplant birthday/Mental Health Awareness Week/Lung Transplant Consultation
Today marks 15 years since my bone marrow transplant for leukaemia. Crazy to think so many years have gone by and a definite cause for celebration tonight with my Dad and wife - we're going for a curry. Been a lot of up and downs along the way not least the development of my PPFE which as you many of
Today marks 15 years since my bone marrow transplant for leukaemia. Crazy to think so many years have gone by and a definite cause for celebration tonight with my Dad and wife - we're going for a curry. Been a lot of up and downs along the way not least the development of my PPFE which as you many of
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
5 years ago
Hairy Cell Leukaemia
Hi. I was diagnosed with hairy cell leukaemia in may 2018. I was treated with cladribine. I gained partial remission in December 2018. After a bone marrow biopsy in March 2019 my leukaemia is growing again and I need further treatment. I’m would like to talk to anyone who is having a similar journey
Hi. I was diagnosed with hairy cell leukaemia in may 2018. I was treated with cladribine. I gained partial remission in December 2018. After a bone marrow biopsy in March 2019 my leukaemia is growing again and I need further treatment. I’m would like to talk to anyone who is having a similar journey
Sajsingers
in
Leukaemia Support
5 years ago
Question about PMF
Hi there. I want to know that can someone with a blood picture like that of polycythemia vera have Primary Myelofibrosis. I know that PV may transform into Myelofibrosis over a long period but can it be PMF with high rbc count and hemoglobin initially. My Jak2 V16f is negative with normal EPO.
Hi there. I want to know that can someone with a blood picture like that of polycythemia vera have Primary Myelofibrosis. I know that PV may transform into Myelofibrosis over a long period but can it be PMF with high rbc count and hemoglobin initially. My Jak2 V16f is negative with normal EPO.
avdheshmzn
in
MPN Voice
5 years ago
Expert Access Program at the CLL Society
The CLL Society is expanding our Expert Access program in 2019. Inclusion criteria are simple: a USA address, a diagnosis of CLL, and you are not currently seeing a top CLL doctor. That's it. It provides a free consult with a true CLL expert after getting and reviewing medical records from your local
The CLL Society is expanding our Expert Access program in 2019. Inclusion criteria are simple: a USA address, a diagnosis of CLL, and you are not currently seeing a top CLL doctor. That's it. It provides a free consult with a true CLL expert after getting and reviewing medical records from your local
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
New started
Just started c25k this week. Never run in my life ( unless for an ice cream van ) . Just had all clear after stem cell transplant so decided to get fit and loose weight . Oh my god it’s hard , knees really hurt after yesterday , think I just run really badly not naturally like people I see , but determined
Just started c25k this week. Never run in my life ( unless for an ice cream van ) . Just had all clear after stem cell transplant so decided to get fit and loose weight . Oh my god it’s hard , knees really hurt after yesterday , think I just run really badly not naturally like people I see , but determined
Strugglingsurvivor
in
Couch to 5K
5 years ago
remembering Chris Dwyer
Many in our community including myself owe much to Chris Dwyer. His death came not so much as a shock to me but a sadness in losing such a fellow warrior who had been through so much while giving so much. He had been long-suffering with so many assaults from various treatments and crippling infections
Many in our community including myself owe much to Chris Dwyer. His death came not so much as a shock to me but a sadness in losing such a fellow warrior who had been through so much while giving so much. He had been long-suffering with so many assaults from various treatments and crippling infections
ThreeWs
in
CLL Support
5 years ago
New test for mutations to calculate the profession of MF
Hi good folks, Hope you all are going OK. Last time I was speaking to my Hemo he told me that a test will be available in about 12 months that will identify all a MF patients mutations and will assist in predicting the progression of the illness. He said it should allow for him to predict how the illness
Hi good folks, Hope you all are going OK. Last time I was speaking to my Hemo he told me that a test will be available in about 12 months that will identify all a MF patients mutations and will assist in predicting the progression of the illness. He said it should allow for him to predict how the illness
Hidden
in
MPN Voice
5 years ago
I am new here was diagnosed yesterday with Polycythaemia vera KAK2 positive I am still in shock.
Would like to hear from others with my condition.
Would like to hear from others with my condition.
Chez1947
in
MPN Voice
5 years ago
Upcoming Educational Forums and Kipps on ROR1
I invite you to attend our free CLL Society Patient and Caregiver Educational Forums. Featured speakers will present the very latest advances in CLL research, clinical trials, treatment options including CAR-T, patient perspectives, and tips to become an effective self-advocate. I will be at all 4 of
I invite you to attend our free CLL Society Patient and Caregiver Educational Forums. Featured speakers will present the very latest advances in CLL research, clinical trials, treatment options including CAR-T, patient perspectives, and tips to become an effective self-advocate. I will be at all 4 of
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Essential Thrombocythaemia
I am new here so hello. I have had essential Thrombocythaemia since 2000 I am 56 years old. I work in a school and over the years have reduced my days from 5 to 3 then 2. My dose of Hydroxycarbamide has been increased since Christmas, I have always had fatigue but since dosage increase the symptoms of
I am new here so hello. I have had essential Thrombocythaemia since 2000 I am 56 years old. I work in a school and over the years have reduced my days from 5 to 3 then 2. My dose of Hydroxycarbamide has been increased since Christmas, I have always had fatigue but since dosage increase the symptoms of
Bobthecob
in
MPN Voice
5 years ago
Introducing myself
Hi everyone, I've been sitting on the sidelines here for a few months and I thought I should introduce myself. I am a 57 year old male from Australia and have had MBL for a number of years. My MBL has been monitored annually and was fairly stable, but in the last few years it started to creep up. My
Hi everyone, I've been sitting on the sidelines here for a few months and I thought I should introduce myself. I am a 57 year old male from Australia and have had MBL for a number of years. My MBL has been monitored annually and was fairly stable, but in the last few years it started to creep up. My
Skyfli
in
CLL Support
5 years ago
Need your help on out of pocket cost for treatment plus to say hi to everyone
Hello all. This is my first posting, but I have been following the daily updates and I am very thankful that there is a forum where I can possibly get answers. To set the stage my blood count was showing signs of something was not right about 3 years ago, and it wasn’t until Oct 2017 that I was diagnosed
Hello all. This is my first posting, but I have been following the daily updates and I am very thankful that there is a forum where I can possibly get answers. To set the stage my blood count was showing signs of something was not right about 3 years ago, and it wasn’t until Oct 2017 that I was diagnosed
Bowie1957
in
CLL Support
5 years ago
Seeking phycological support? How to access Leukaemia Care's Ann Ashley counselling fund
In todays difficult time there are ways to help cope with the additional psychological challenges you may be experiencing when living with a leukaemia diagnosis during Covid times. We’re providing access to private counselling services through the provision of grants, so that leukaemia patients and
In todays difficult time there are ways to help cope with the additional psychological challenges you may be experiencing when living with a leukaemia diagnosis during Covid times. We’re providing access to private counselling services through the provision of grants, so that leukaemia patients and
NicoleLeukaemiaCare
in
Leukaemia Support
5 years ago
Having b-pll
a few times i and a couple others have been questioned about posting here because b-pll is so rare. However i happened across something on the Leukemia and Lymphoma site. If you go a third of the way down on the page under available funding they consider b-pll a subtype of cll. https://www.lls.org/
a few times i and a couple others have been questioned about posting here because b-pll is so rare. However i happened across something on the Leukemia and Lymphoma site. If you go a third of the way down on the page under available funding they consider b-pll a subtype of cll. https://www.lls.org/
Hidden
in
CLL Support
5 years ago
Can a PV Patient Turn Myelofibrosis So Fast?
I am a male PV patient of 50 years old. Diagnosed in August, 2018. I have done 7 phlebotomy sessions of 500 ml each, and stopped at the end of October due to circumstance changes beyond my control. Last week I finally get to see a doctor again and checked my blood. That was five months without a phlebotomy
I am a male PV patient of 50 years old. Diagnosed in August, 2018. I have done 7 phlebotomy sessions of 500 ml each, and stopped at the end of October due to circumstance changes beyond my control. Last week I finally get to see a doctor again and checked my blood. That was five months without a phlebotomy
Fifty2018
in
MPN Voice
5 years ago
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