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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
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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
Bone Marrow Aspiration - I'm scared.
I'm having 2 bone marrow aspirations in 1 week for stem cell injections. Has anyone had an aspiration with no meds but just localized numbing of the area? My doctor gave me the choice of meds or no meds. They do have laughing gas available should I need it. I don't always do well with meds so I thought
I'm having 2 bone marrow aspirations in 1 week for stem cell injections. Has anyone had an aspiration with no meds but just localized numbing of the area? My doctor gave me the choice of meds or no meds. They do have laughing gas available should I need it. I don't always do well with meds so I thought
iceskating1
in
MPN Voice
5 years ago
CLL Tracker - Patient Data
In 2011 CLL Tracker www.clltracker.co.uk was introduced to share patient specific data on their CLL experiences. This international website provides detailed information, in graphical form, relating to: • Demographics • Diagnosis and staging • Prognostic markers • Blood results • Treatments • Complications
In 2011 CLL Tracker www.clltracker.co.uk was introduced to share patient specific data on their CLL experiences. This international website provides detailed information, in graphical form, relating to: • Demographics • Diagnosis and staging • Prognostic markers • Blood results • Treatments • Complications
RobertCLL
in
CLL Support
5 years ago
New to Site Imbruvica & Rituxan how are they tolerated together.
I’m new to the site but not new to CLL. I was diagnosed in 2003 and was watch and wait. Had treatment with fludarabine.. Was in remission for 10 years. Then back to watch and wait. Started imbruvica Jan 2019..first two weeks WBC came down...last two weeks the number went higher than when I started
I’m new to the site but not new to CLL. I was diagnosed in 2003 and was watch and wait. Had treatment with fludarabine.. Was in remission for 10 years. Then back to watch and wait. Started imbruvica Jan 2019..first two weeks WBC came down...last two weeks the number went higher than when I started
Bobbietf
in
CLL Support
5 years ago
Bmb report wording
Even though my last bmb was poor quality it was re-reviewed by an expert. I’ve pulled up the report from the portal and haven’t yet discussed with the expert. I’m still diagnosed with chronic Essential Thrombocythemia but these two sentences have me concerned. Should I be worried? - Glycophorin
Even though my last bmb was poor quality it was re-reviewed by an expert. I’ve pulled up the report from the portal and haven’t yet discussed with the expert. I’m still diagnosed with chronic Essential Thrombocythemia but these two sentences have me concerned. Should I be worried? - Glycophorin
robbjoy
in
MPN Voice
5 years ago
Still Undiagnosed !!!
Hi Everyone, Today i had an appointment with my hem and he still says that we have to wait another 3 to 4 months for definative diagnosis. As i had gone with 1initial phlobotomy in past 1 and half months, then after my hct and hb and rbc slightly decreases without any phlobotomy and i had never increased
Hi Everyone, Today i had an appointment with my hem and he still says that we have to wait another 3 to 4 months for definative diagnosis. As i had gone with 1initial phlobotomy in past 1 and half months, then after my hct and hb and rbc slightly decreases without any phlobotomy and i had never increased
Vigiindia
in
MPN Voice
5 years ago
Seeking people with experience of Stem Cell Transplant for Richter's - I have a decision to make!
Hi All Have been reading lots of posts since my diagnosis of CLL 9 months ago - what a great community, which I have found really helpful. I was diagnosed with Non-Hodgkins DLBCL which is a Richter's transformation from previously undiagnosed CLL. I am a healthy 50 year old female, with no symptoms
Hi All Have been reading lots of posts since my diagnosis of CLL 9 months ago - what a great community, which I have found really helpful. I was diagnosed with Non-Hodgkins DLBCL which is a Richter's transformation from previously undiagnosed CLL. I am a healthy 50 year old female, with no symptoms
Buddhababy
in
CLL Support
5 years ago
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