Search
Search
About
Log in
Join
Experiences with
Leukaemia
Posts
Communities
3,252 public posts
Filter results
Good News
I have had the results of my bone marrow biopsy this week and my six months of FCR chemo have done the trick, I am now clear of any signs of cll cancer cells. This obviously is a great relief and although fatigue is still part of my life I am hoping for many years of being cancer free. I wish every single
I have had the results of my bone marrow biopsy this week and my six months of FCR chemo have done the trick, I am now clear of any signs of cll cancer cells. This obviously is a great relief and although fatigue is still part of my life I am hoping for many years of being cancer free. I wish every single
dandelup
in
CLL Support
5 years ago
sinus infection and nose bleeds.
Hi everyone,I live in the UK and have no support whatsoever for my CLL,the DR at the hospital took bloods and just said "oh yes you have
Leukaemia
"that's it,I have apparently had it now for over 10 years this is after years of complaining of exhaustion.I am on Watch and Wait and have 3 monthly blood
Hi everyone,I live in the UK and have no support whatsoever for my CLL,the DR at the hospital took bloods and just said "oh yes you have
Leukaemia
"that's it,I have apparently had it now for over 10 years this is after years of complaining of exhaustion.I am on Watch and Wait and have 3 monthly blood
maggiewillow
in
CLL Support
5 years ago
AXSL MUTATION
Hi Folks, I keep up to speed with the Forum, I don't often post, when I do, I have always had kind informative replies... I joined you folk last year in March, after ET Diagnosis.. Little did I know by May 18th, I would be diagnosed with MF Intermediate 1. After BMB which I'm so glad I had it, at least
Hi Folks, I keep up to speed with the Forum, I don't often post, when I do, I have always had kind informative replies... I joined you folk last year in March, after ET Diagnosis.. Little did I know by May 18th, I would be diagnosed with MF Intermediate 1. After BMB which I'm so glad I had it, at least
pontygirl
in
MPN Voice
5 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Update
Hi All, Thought it was about time I wrote with an update. Last year I wrote a few posts about my first transplant (MUD) to treat myelofibrosis. It failed to engraft so attempted a second transplant (HAPLO). Pleased to report that on Day 120 I am feeling good in myself and relatively healthy despite having
Hi All, Thought it was about time I wrote with an update. Last year I wrote a few posts about my first transplant (MUD) to treat myelofibrosis. It failed to engraft so attempted a second transplant (HAPLO). Pleased to report that on Day 120 I am feeling good in myself and relatively healthy despite having
Simon96
in
MPN Voice
5 years ago
Another possible MF ‘cure’ but very early stage....
https://www.apnews.com/Business%20Wire/569c6623ad784538ba40be42a99f087a “This clinical trial will evaluate the ability of AVID200 to achieve the disease-modifying outcomes of reversing bone marrow fibrosis and restoring normal hematopoiesis. Preclinical data demonstrate that selective neutralization
https://www.apnews.com/Business%20Wire/569c6623ad784538ba40be42a99f087a “This clinical trial will evaluate the ability of AVID200 to achieve the disease-modifying outcomes of reversing bone marrow fibrosis and restoring normal hematopoiesis. Preclinical data demonstrate that selective neutralization
Paul123456
in
MPN Voice
5 years ago
Haemo appointment
Haematology appointment this morning 🤔 first one since I stopped all the HU and Ruxolitinib. Interesting to see what my bloods are today. My platelets had previously come down to 540 so time will tell........ I get so nervous on appointment days - like a cat on a hot tin roof
Haematology appointment this morning 🤔 first one since I stopped all the HU and Ruxolitinib. Interesting to see what my bloods are today. My platelets had previously come down to 540 so time will tell........ I get so nervous on appointment days - like a cat on a hot tin roof
Graham7694
in
MPN Voice
5 years ago
Low RDW-CV
Hi everyone! Got my CBC result yesterday with the following results: WBC Count- 8400 RBC Count- 3.91 Hemoglobin- 13.4 Hematocrit- 40.3 Platelet Count- H 469000 MCV- H 103.0 MCH- H 34.3 MCHC- 33.2 RDW-CV- L 10.7 Neutrophils- 51.4 Lymphocytes- 39.7 Monocytes- 7.3 Eosinophils- L 1.6 Basophils- 0.0 I'm disturbed
Hi everyone! Got my CBC result yesterday with the following results: WBC Count- 8400 RBC Count- 3.91 Hemoglobin- 13.4 Hematocrit- 40.3 Platelet Count- H 469000 MCV- H 103.0 MCH- H 34.3 MCHC- 33.2 RDW-CV- L 10.7 Neutrophils- 51.4 Lymphocytes- 39.7 Monocytes- 7.3 Eosinophils- L 1.6 Basophils- 0.0 I'm disturbed
Yona
in
MPN Voice
5 years ago
What does a normal karyotype means in ET?
I have my BMB results and my heamatologist told me that i have normal karyotype, and no fibrosis. I have mild ET and she didnt mentioned anything about mutations. All this was short conversation from the telephone,just to let me know the results,cause she knew i was very stressed about it. I will meet
I have my BMB results and my heamatologist told me that i have normal karyotype, and no fibrosis. I have mild ET and she didnt mentioned anything about mutations. All this was short conversation from the telephone,just to let me know the results,cause she knew i was very stressed about it. I will meet
Aneliv9
in
MPN Voice
5 years ago
Spring 2019 edition of Leukaemia Matters magazine is now available
Features: Blood cancer and women’s issues Inspiring patient's stories Patient Services News Take Your 'Spot
Leukaemia
' Challenge GP training Campaigns Corner Exercise strategies OBE awarded to inspirational volunteer Clinical Trials:
Leukaemia
study updates You can download the magazine here http:/
Features: Blood cancer and women’s issues Inspiring patient's stories Patient Services News Take Your 'Spot
Leukaemia
' Challenge GP training Campaigns Corner Exercise strategies OBE awarded to inspirational volunteer Clinical Trials:
Leukaemia
study updates You can download the magazine here http:/
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
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.
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.
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
5 years ago
Latest podcast - Mythbusting!
The LC team were joined by two patients, Kris and Kate, to discuss various
leukaemia
myths that swirl around the depths of the internet. You can find it on all good podcast providers by searching Bloodstream
Leukaemia
Care.
The LC team were joined by two patients, Kris and Kate, to discuss various
leukaemia
myths that swirl around the depths of the internet. You can find it on all good podcast providers by searching Bloodstream
Leukaemia
Care.
NicoleLeukaemiaCare
Administrator
in
Leukaemia CARE
5 years ago
Update on Possible Richter Transformation
At the recommendation of one our members I called UPENN and asked to speak with a covering hematologist. I received a call fairly quickly, explained the situation and the physician was able to get into my patient portal, read the report and compare it to my 2011node biopsy. He does not think it’s Richters
At the recommendation of one our members I called UPENN and asked to speak with a covering hematologist. I received a call fairly quickly, explained the situation and the physician was able to get into my patient portal, read the report and compare it to my 2011node biopsy. He does not think it’s Richters
ReneeSusan
in
CLL Support
5 years ago
CLL and sugar
I have had CLL ten years. After eating more food with sugar than usual during holidays, night sweats were horrible. After completely cutting refined sugar from my diet, the sweats have stopped completely.
I have had CLL ten years. After eating more food with sugar than usual during holidays, night sweats were horrible. After completely cutting refined sugar from my diet, the sweats have stopped completely.
Lthgj
in
CLL Support
5 years ago
CLL Remission
I have been in remission for just over 5 years since finishing treatment in 2014 of FCR. Lately my lymphocytes and WBC are going up double in about 2-3 months so my Hemotologist had me do blood work for possible relapse . So now I wonder what the results will show . These test like molecular take long
I have been in remission for just over 5 years since finishing treatment in 2014 of FCR. Lately my lymphocytes and WBC are going up double in about 2-3 months so my Hemotologist had me do blood work for possible relapse . So now I wonder what the results will show . These test like molecular take long
Kmegood
in
CLL Support
5 years ago
Are you 11qATM CLL too ? what treatment works best? Please reply ASAP
My wife who loves me put me on this site to get details from others suffering from CLL. One week diagnosed i have an 11qATM deletion heterozygote and a absolute monoclonal lymoh count of 12,000. My reds and platelets good . No splenomegaly but nodes “waxing and waning” all over. Plus a rash to pollen
My wife who loves me put me on this site to get details from others suffering from CLL. One week diagnosed i have an 11qATM deletion heterozygote and a absolute monoclonal lymoh count of 12,000. My reds and platelets good . No splenomegaly but nodes “waxing and waning” all over. Plus a rash to pollen
LovecuresCLL
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
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
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
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
1
...
81
82
83
...
100
Next page
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1794 results
MPN Voice
819 results
Leukaemia CARE
268 results
View top 10 communities
Sort by
Most Relevant
Newest