Search
Search
About
Log in
Join
Experiences with
Acute leukaemia
Posts
Communities
2,747 public posts
Filter results
Rebooting the San Diego CLL Support Group this Wednesday, April 3
Hi, We are pleased to announce that Wednesday April 3rd, 2019 at 4 PM we will have the first San Diego CLL Society Support and Education Meeting at the public Library in University City, see the address below: 4155 Governor Drive San Diego, CA 92122 https://www.sandiego.gov/public-library/locations
Hi, We are pleased to announce that Wednesday April 3rd, 2019 at 4 PM we will have the first San Diego CLL Society Support and Education Meeting at the public Library in University City, see the address below: 4155 Governor Drive San Diego, CA 92122 https://www.sandiego.gov/public-library/locations
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Ibrutinib. To take or not?
Hello, I was diagnosed will CLL 9 years ago & immediately put on FCR, after being given 2 red blood transfusions. 3 years later I had one cycle of Bendamustine & Rituximab & after another 3 years another cycle of Bendamustine & Rituximab. My only symptoms are increased white count & lymphocytes which
Hello, I was diagnosed will CLL 9 years ago & immediately put on FCR, after being given 2 red blood transfusions. 3 years later I had one cycle of Bendamustine & Rituximab & after another 3 years another cycle of Bendamustine & Rituximab. My only symptoms are increased white count & lymphocytes which
Benny12
in
CLL Support
5 years ago
Anyone with CLL, MDS/MPN ?
My Oncologist keeps telling me about this very rare combo of my blood cancers I have! I not only have CLL but also MDS/MPN. The article of my rare blood cancers will be in the AJOM in June or July; I should receive an abstract on this in June. It has something to do with my mutated gene “beta” so
My Oncologist keeps telling me about this very rare combo of my blood cancers I have! I not only have CLL but also MDS/MPN. The article of my rare blood cancers will be in the AJOM in June or July; I should receive an abstract on this in June. It has something to do with my mutated gene “beta” so
Mimi4times
in
CLL Support
5 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Vitamin D and immune cells stimulate bone marrow disease (Myelofibrosis)
Hello everyone, I've just read this interesting finding: https://medicalxpress.com/news/2019-02-vitamin-d-immune-cells-bone.html?utm_source=nwletter&utm_medium=email&utm_campaign=daily-nwletter In short, myelofibrosis is stimulated by excessive signaling from vitamin D and immune cells known as macrophages
Hello everyone, I've just read this interesting finding: https://medicalxpress.com/news/2019-02-vitamin-d-immune-cells-bone.html?utm_source=nwletter&utm_medium=email&utm_campaign=daily-nwletter In short, myelofibrosis is stimulated by excessive signaling from vitamin D and immune cells known as macrophages
amalekh
in
MPN Voice
5 years ago
Red cell mass test
Hello. Thank goodness its Friday! Does anyone know if a red cell mass test is the same as the MCV result you get on a normal FBC? Somebody told me it was but for some reason I thought this was its own separate test?
Hello. Thank goodness its Friday! Does anyone know if a red cell mass test is the same as the MCV result you get on a normal FBC? Somebody told me it was but for some reason I thought this was its own separate test?
RedSunrise
in
MPN Voice
5 years ago
Waiting for BMB results (gulp)
Between 10 to 20% of MF patients may develop
acute
myeloid
leukaemia
(AML), a type of blood and bone marrow cancer that progresses rapidly." http://www.mpnvoice.org.uk/about-mpns/questions-about-mpns/myelofibrosis.aspx Still adjusting to the PV Jak2 diagnosis at age 50: PLT 646 (down from 865 in a
Between 10 to 20% of MF patients may develop
acute
myeloid
leukaemia
(AML), a type of blood and bone marrow cancer that progresses rapidly." http://www.mpnvoice.org.uk/about-mpns/questions-about-mpns/myelofibrosis.aspx Still adjusting to the PV Jak2 diagnosis at age 50: PLT 646 (down from 865 in a
ilovetoastwithbutter
in
MPN Voice
5 years ago
Feeling numb
Just received the 2nd set of blood tests from an un-connected complaint, for the cell markers conclusion to reveal I have CLL. Currently I feel as well as a 59 year old could feel, I am trying to come to terms with what I have been told, my GP has since reffered me to the the local Hematology department
Just received the 2nd set of blood tests from an un-connected complaint, for the cell markers conclusion to reveal I have CLL. Currently I feel as well as a 59 year old could feel, I am trying to come to terms with what I have been told, my GP has since reffered me to the the local Hematology department
1-12-32
in
CLL Support
5 years ago
ET and Fatigue
I was diagnosed about six years ago with Essential Thrombocythaemia (ET) and was pretty much patted on the head, handed aspirin and told to come back every 6 months. In the last few months I have been referred to another specialist and hoping that with two new genetic tests and a bone marrow biopsy there
I was diagnosed about six years ago with Essential Thrombocythaemia (ET) and was pretty much patted on the head, handed aspirin and told to come back every 6 months. In the last few months I have been referred to another specialist and hoping that with two new genetic tests and a bone marrow biopsy there
Fuil
in
MPN Voice
5 years ago
where can I buy Jakavi from?
Hi there. I am not sure if anyone will read this but I will still give it a try. My aunt has been diagnosed with secondary myelofibrosis and she has been taking Jakavi for the past almost 3 years. Now we are facing the challenge that the government will stop supply her medication for free and she she
Hi there. I am not sure if anyone will read this but I will still give it a try. My aunt has been diagnosed with secondary myelofibrosis and she has been taking Jakavi for the past almost 3 years. Now we are facing the challenge that the government will stop supply her medication for free and she she
sonn4eto
in
MPN Voice
5 years ago
High AST and alt levels
Hello, all, I just received a copy of my blood chemistry I had last week and it said my AST and AL T levels are high. Of course, I didn’t know what that was so I googled it and it said I could have liver damage. Does anyone know if this is a side effect of medication like hydroxy or jakafi? I am seeing
Hello, all, I just received a copy of my blood chemistry I had last week and it said my AST and AL T levels are high. Of course, I didn’t know what that was so I googled it and it said I could have liver damage. Does anyone know if this is a side effect of medication like hydroxy or jakafi? I am seeing
Cja1956
in
MPN Voice
5 years ago
Ighv mutated
I found out last week that I am IGHV mutated. (Apparently that’s a good thing) It means I respond really well to the chemo. I was also told by my specialist that next month she wants another CT scan & another bone marrow biopsy. She said if they come back with good results then we might stop a three
I found out last week that I am IGHV mutated. (Apparently that’s a good thing) It means I respond really well to the chemo. I was also told by my specialist that next month she wants another CT scan & another bone marrow biopsy. She said if they come back with good results then we might stop a three
Puckie
in
CLL Support
5 years ago
chronic leukemia issues
I have stage 2 B chronic lymphocyte leukemia refractory, I have started chemo (leukeran) 2 months ago.2 weeks ago I started to have sharp pain in my right side, can this be cause by the chemo or the lymph nodes in my liver?
I have stage 2 B chronic lymphocyte leukemia refractory, I have started chemo (leukeran) 2 months ago.2 weeks ago I started to have sharp pain in my right side, can this be cause by the chemo or the lymph nodes in my liver?
dannydann
in
CLL Support
5 years ago
ET and blast cells - new here and overwhelmed
Hi there My husband is 32, and has just been diagnosed with ET (negative for JAK2, CALR, MPL and BCR ABL) and we are waiting on further info. His platelet count is very very high and not budging yet - around 1.7m despite taking high doses of Hydroxycarbomide for a week now (about 4g a day). All other
Hi there My husband is 32, and has just been diagnosed with ET (negative for JAK2, CALR, MPL and BCR ABL) and we are waiting on further info. His platelet count is very very high and not budging yet - around 1.7m despite taking high doses of Hydroxycarbomide for a week now (about 4g a day). All other
intothewoods
in
MPN Voice
5 years ago
CLLSA Cambridge Members Conference Mar 2019
The first talk of the day was a team presentation from the Psycho-Oncology Service, Liaison Psychiatry, Addenbrooke’s Hospital - Approaches to Psychological health in Cancer This was followed by Jackie talking about her diagnosis and treatment under the Flair trial. This was followed by an update on
The first talk of the day was a team presentation from the Psycho-Oncology Service, Liaison Psychiatry, Addenbrooke’s Hospital - Approaches to Psychological health in Cancer This was followed by Jackie talking about her diagnosis and treatment under the Flair trial. This was followed by an update on
Myrddin
in
CLL Support
5 years ago
Treatment ”options”
Hello all you wonderful people! I'm looking for hope and positive energy here... My dad was diagnosed with CLL just in December. He lives in Barcelona, Spain (edited as advised, thanks Bubnjay1) He was being treated as a private patient through his full comprehensive health insurance policy Very short
Hello all you wonderful people! I'm looking for hope and positive energy here... My dad was diagnosed with CLL just in December. He lives in Barcelona, Spain (edited as advised, thanks Bubnjay1) He was being treated as a private patient through his full comprehensive health insurance policy Very short
LurkerEmma
in
CLL Support
5 years ago
Curling 123
Imbruvica appears to be the preferred therapy from reading these posts. As a senior and in Ontario, I wonder if it is covered by OHIP or Ontario Drug Program. Seems drugs if not administered in hospital are not covered even though many cancer drugs are taken orally now. Anyone from Ontario with CLL,
Imbruvica appears to be the preferred therapy from reading these posts. As a senior and in Ontario, I wonder if it is covered by OHIP or Ontario Drug Program. Seems drugs if not administered in hospital are not covered even though many cancer drugs are taken orally now. Anyone from Ontario with CLL,
Curling123
in
CLL Support
5 years ago
Erythropoietin injections
Does anyone have experience or advice about erythropoietin injections? My husband has post PV Myelofibrosis and is taking Ruxolitinib. His hgb is drifting down -his haematologist does not think it’s caused by the Ruxolitinib but due to disease progression ( white cells are drifting up and platelets
Does anyone have experience or advice about erythropoietin injections? My husband has post PV Myelofibrosis and is taking Ruxolitinib. His hgb is drifting down -his haematologist does not think it’s caused by the Ruxolitinib but due to disease progression ( white cells are drifting up and platelets
Fika500
in
MPN Voice
5 years ago
Spring 2019 edition of Leukaemia Matters magazine is now available
The latest issue of Leukaemia Matters will soon be landing on doorsteps and arriving in inboxes. Friday 8th March is International Women’s Day. To coincide with this the magazine takes a look at gender-specific symptoms and issues affecting women. Features: Blood cancer and women’s issues Inspiring
The latest issue of Leukaemia Matters will soon be landing on doorsteps and arriving in inboxes. Friday 8th March is International Women’s Day. To coincide with this the magazine takes a look at gender-specific symptoms and issues affecting women. Features: Blood cancer and women’s issues Inspiring
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
5 years ago
I am CLL patient previusly treate with FR. I need to be treated again. I need some advice please.
I am a CLL patient. I have been previously treated with FR regimen for CLL. (Rituximaba plus Fludarabina) After 2.5 years, the WBC are around 30 K/ul, and platelets around 41 K. Doctors have decided to treat me again. Due to cost, unsufficient Insurance coverage, it is not possible to go to Imbruvica
I am a CLL patient. I have been previously treated with FR regimen for CLL. (Rituximaba plus Fludarabina) After 2.5 years, the WBC are around 30 K/ul, and platelets around 41 K. Doctors have decided to treat me again. Due to cost, unsufficient Insurance coverage, it is not possible to go to Imbruvica
tropicsurvivor
in
CLL Support
5 years ago
Ginseng & hydroxyurea
It's been over a month since I started taking Ginseng and it seems to be helping with the fatigue a little and every bit counts. 1,000 mg of Panax quinquefolius in the am. This is a ginseng that is grown locally and is also known as American ginseng. It was recommended over the Siberian ginseng because
It's been over a month since I started taking Ginseng and it seems to be helping with the fatigue a little and every bit counts. 1,000 mg of Panax quinquefolius in the am. This is a ginseng that is grown locally and is also known as American ginseng. It was recommended over the Siberian ginseng because
h2ogal
in
MPN Voice
5 years ago
1
...
71
72
73
...
100
Next page
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1622 results
MPN Voice
786 results
Leukaemia CARE
170 results
View top 10 communities
Sort by
Most Relevant
Newest