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Mast cell leukaemia
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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
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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
in
Leukaemia Support
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
A Funny PIP assessment tale!
Yesterday I attended my induction day for a pain management program. It was an excellent day and the staff were excellent. During the the breaks all the course members talked about their conditions, problems, PIP etc. Roger (not real name) stated that the nurse wrote on his PIP assessment that Roger
Yesterday I attended my induction day for a pain management program. It was an excellent day and the staff were excellent. During the the breaks all the course members talked about their conditions, problems, PIP etc. Roger (not real name) stated that the nurse wrote on his PIP assessment that Roger
Badbessie
in
Lung Conditions Community Forum
5 years ago
Discontinue Hydroxyurea
Had a visit with a new Hematologist who is a recognized expert in MPNs. He has recommended a different tx approach for my Polycythemia Vera. Based on my profile, he recommends discontinuing hydroxyurea and going with phlebotomy only. I am having troublesome side effects and the new doc says risks
Had a visit with a new Hematologist who is a recognized expert in MPNs. He has recommended a different tx approach for my Polycythemia Vera. Based on my profile, he recommends discontinuing hydroxyurea and going with phlebotomy only. I am having troublesome side effects and the new doc says risks
hunter5582
in
MPN Voice
5 years ago
Phlebotomy and heart rate
For those having polycythemia. Does your heart rate increased after phlebotomy.?
For those having polycythemia. Does your heart rate increased after phlebotomy.?
Amma12
in
MPN Voice
5 years ago
Cost of Jakafi
I went to my doctor yesterday and since I’ve had hives and burning of the skin feeling hot he is going to try to switch me to Jakafi. The cost is unbelievable and the main assistance program out there said if you’re on Medicare you’re not eligible. Is anyone under Medicare taking that drug and getting
I went to my doctor yesterday and since I’ve had hives and burning of the skin feeling hot he is going to try to switch me to Jakafi. The cost is unbelievable and the main assistance program out there said if you’re on Medicare you’re not eligible. Is anyone under Medicare taking that drug and getting
1466
in
MPN Voice
5 years ago
CLL apricot kernels and green tea extract.
I am newly diagnosed. White cells were 3.2L. In Ontario top of range is 2.9. I hope it is decided I am wait and see for now. I am taking for now two dried bitter apricot kernels. Read in many posts from US that they reduce white cells, plus green tea extract 750mg. Anyone else familiar with this or taking
I am newly diagnosed. White cells were 3.2L. In Ontario top of range is 2.9. I hope it is decided I am wait and see for now. I am taking for now two dried bitter apricot kernels. Read in many posts from US that they reduce white cells, plus green tea extract 750mg. Anyone else familiar with this or taking
Curling123
in
CLL Support
5 years ago
New compendium of quality CLL resources for patients + your hematologist
I am sharing a collection of high quality CLL resources for both patients and hematologists. First, the patient resources which include: patient checklist doctor visit checklist building your CLL team financial support tracking lab reports. These important resources are from leading
I am sharing a collection of high quality CLL resources for both patients and hematologists. First, the patient resources which include: patient checklist doctor visit checklist building your CLL team financial support tracking lab reports. These important resources are from leading
GlennSabin
in
CLL Support
5 years ago
Symptoms - Newbie - Awaiting results re: BMB- ET
Hi all, I have posted a couple of times and found everyone very supportive. I'm a 55 yr old lady who has been under Haematolgy dept. for about a year. On 75mg asprin only. The expectation is that I have Essential Thrombocythemia and although my platelets are relatively low 460 I have been quite symptomatic
Hi all, I have posted a couple of times and found everyone very supportive. I'm a 55 yr old lady who has been under Haematolgy dept. for about a year. On 75mg asprin only. The expectation is that I have Essential Thrombocythemia and although my platelets are relatively low 460 I have been quite symptomatic
Hope2-Optimism
in
MPN Voice
5 years ago
Looking for CLL specialist in Denver, CO
Hi, so my hematologist has said I need to start chemo , undergoing lymph node biopsy tomorrow to make sure its CLL and not lymphoma since I was dx only on blood work, but before I actually start chemo was thinking I should see a CLL specialist (esp. because you all have recommended it). Does anyone
Hi, so my hematologist has said I need to start chemo , undergoing lymph node biopsy tomorrow to make sure its CLL and not lymphoma since I was dx only on blood work, but before I actually start chemo was thinking I should see a CLL specialist (esp. because you all have recommended it). Does anyone
jgamberg
in
CLL Support
5 years ago
CG-806... starts the long trek..
Aptose Biosciences announced that it has submitted an Investigational New Drug (IND) application for CG-806 to the U.S. Food and Drug Administration (FDA) requesting approval to initiate its Phase 1 clinical trial program. CG-806 is an oral, first-in-class small molecule inhibitor of all known forms
Aptose Biosciences announced that it has submitted an Investigational New Drug (IND) application for CG-806 to the U.S. Food and Drug Administration (FDA) requesting approval to initiate its Phase 1 clinical trial program. CG-806 is an oral, first-in-class small molecule inhibitor of all known forms
Cllcanada
Top Poster CURE Hero
in
CLL Support
5 years ago
Polychythemia
At Dec'2010, I have treated for Polycythemia when my PCV was 54 but as informed earlier, I am not having any Mutations and spleen, heart and lungs are normal. I am taking asprin 75 mg only and no symptoms by god grace. In between 2011 to till now, I going for venesection when my PCV cross 50. It may
At Dec'2010, I have treated for Polycythemia when my PCV was 54 but as informed earlier, I am not having any Mutations and spleen, heart and lungs are normal. I am taking asprin 75 mg only and no symptoms by god grace. In between 2011 to till now, I going for venesection when my PCV cross 50. It may
Selvamok
in
MPN Voice
5 years ago
Sometimes feel good and sometimes not
I was just diagnosed about 5 weeks ago with ET. I am 69. Blood work for Jak2 was negative. Waiting for CALR and MLP result. No bone marrow done yet. I have been on on 500 mg hydroxyurea for 5weeks. I wondered if anyone else sometimes felt really good and sometimes felt bad... weak and head goofy
I was just diagnosed about 5 weeks ago with ET. I am 69. Blood work for Jak2 was negative. Waiting for CALR and MLP result. No bone marrow done yet. I have been on on 500 mg hydroxyurea for 5weeks. I wondered if anyone else sometimes felt really good and sometimes felt bad... weak and head goofy
Cookiebaker
in
MPN Voice
5 years ago
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