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Christmas message 2019 from the team at MPN Voice
Hello everyone We really have had another fantastic year and would like to thank all of you for your support and involvement, not just in attending forums, completing surveys, organizing and taking part in fundraising events, but for your very kind and generous donations which we have received throughout
Hello everyone We really have had another fantastic year and would like to thank all of you for your support and involvement, not just in attending forums, completing surveys, organizing and taking part in fundraising events, but for your very kind and generous donations which we have received throughout
Mazcd
MPNVoice
in
MPN Voice
5 years ago
2018 study explains why Green Tea, pomegranates, strawberries and other foods containing elegitannins (and thus EA) work against CLL
I just found a fabulous 2018 study which explains why green tea, pomegranates, strawberries and other foods containing elegitannins (and thus EA) could reduce your lymphocyte counts: https://www.sciencedirect.com/science/article/pii/S2213231715001111
I just found a fabulous 2018 study which explains why green tea, pomegranates, strawberries and other foods containing elegitannins (and thus EA) could reduce your lymphocyte counts: https://www.sciencedirect.com/science/article/pii/S2213231715001111
HowardR
in
CLL Support
4 years ago
Bone Pain
Recently I have been experiencing a dull ache in my feet but only when in bed and not moving around. If I get up and walk around it goes away. Is this the onset of bone pain. I have Prefibrotic Myelofibrosis. It is not what I would describe as painful just very uncomfortable and prevents me from sleeping
Recently I have been experiencing a dull ache in my feet but only when in bed and not moving around. If I get up and walk around it goes away. Is this the onset of bone pain. I have Prefibrotic Myelofibrosis. It is not what I would describe as painful just very uncomfortable and prevents me from sleeping
kiwitraveller
in
MPN Voice
5 years ago
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Targeting stem cells that drive aggressive blood cancer
Post by MPN-MATE Admin » Tue Dec 17, 2019 3:45 am DEC. 12, 2019 Targeting stem cells that drive aggressive blood cancer by Peter MacCallum Cancer Centre As many of you may already know, the Fundraiser that I am doing intends to provide the funds raised to the Peter MAC Cancer Foundation in Victoria,
Post by MPN-MATE Admin » Tue Dec 17, 2019 3:45 am DEC. 12, 2019 Targeting stem cells that drive aggressive blood cancer by Peter MacCallum Cancer Centre As many of you may already know, the Fundraiser that I am doing intends to provide the funds raised to the Peter MAC Cancer Foundation in Victoria,
socrates_8
in
MPN Voice
5 years ago
Jak 2positive MPN treatment Ruxolitinib
My husband was diagnosed as above 3years ago and started Ruxolitinib 15mg twice a day 30 months ago. Has anyone with same illness experienced any lack of concentration and possibly slight memory problems. He had no problems until he started treatment on Ruxolitinib.. other than this his treatment has
My husband was diagnosed as above 3years ago and started Ruxolitinib 15mg twice a day 30 months ago. Has anyone with same illness experienced any lack of concentration and possibly slight memory problems. He had no problems until he started treatment on Ruxolitinib.. other than this his treatment has
waddles22
in
MPN Voice
5 years ago
Scared !!!
Hi. I went to my gyn last week for female issues and I had blood work drawn. My CBC was 28.10 then a week later 28.4 with smudge cells present each time which is very suggestive of CLL. My mom just passed this April at barely 66 with multiple myeloma with del 17 and I’m petrified as I’m only 46
Hi. I went to my gyn last week for female issues and I had blood work drawn. My CBC was 28.10 then a week later 28.4 with smudge cells present each time which is very suggestive of CLL. My mom just passed this April at barely 66 with multiple myeloma with del 17 and I’m petrified as I’m only 46
Madison1995
in
CLL Support
5 years ago
low dose naltrexone
Hi - I am new to the forum, have had cll for over 10 years, still at stage zero. I have tried various supplements and treatments, have been on ldn 4.5 mg for about a year. My white blood cell count went down 30% in this last year. I had taken it before and stopped, tried a few other things and it crept
Hi - I am new to the forum, have had cll for over 10 years, still at stage zero. I have tried various supplements and treatments, have been on ldn 4.5 mg for about a year. My white blood cell count went down 30% in this last year. I had taken it before and stopped, tried a few other things and it crept
Hidden
in
CLL Support
5 years ago
Drug trial
Hi every body. I wondered if anybody with PV has been asked if they would like to take part in a drug trial. I've had PV for 4 years and was on Hydroxy for3 years. I've just had to stop taking it because I was having regular cellulitis on my legs and was virtually living on antibiotics. My haemo took
Hi every body. I wondered if anybody with PV has been asked if they would like to take part in a drug trial. I've had PV for 4 years and was on Hydroxy for3 years. I've just had to stop taking it because I was having regular cellulitis on my legs and was virtually living on antibiotics. My haemo took
Splb3317
in
MPN Voice
5 years ago
SMC decision regarding Ruxolitinib (Jakavi) for PV patients in Scotland
We are very pleased to announce that following a full submission made to the SMC (Scottish Medicines Consortium), a decision has been made to accept Ruxolitinib (Jakavi) for use by NHS Scotland for patients with PV (polycythaemia vera) who are intolerant to, or cannot be treated with Hydroxycarbamide
We are very pleased to announce that following a full submission made to the SMC (Scottish Medicines Consortium), a decision has been made to accept Ruxolitinib (Jakavi) for use by NHS Scotland for patients with PV (polycythaemia vera) who are intolerant to, or cannot be treated with Hydroxycarbamide
Mazcd
MPNVoice
in
MPN Voice
5 years ago
After 4th Xofigo injection, bone marrow 'crashed'? - Cancer or side effect from Xofigo?? Next step??
My husband seemed to be responding to the monthly Xofigo injections until the 4th one on Dec 5th, which caused his blood numbers to crash. He ended up in the ER 2 weeks later, on Dec 20th, with hemoglobin around 6, so they gave him 3 red blood cell transfusions which brought him up to 8.4. (we were
My husband seemed to be responding to the monthly Xofigo injections until the 4th one on Dec 5th, which caused his blood numbers to crash. He ended up in the ER 2 weeks later, on Dec 20th, with hemoglobin around 6, so they gave him 3 red blood cell transfusions which brought him up to 8.4. (we were
JLS1
in
Advanced Prostate Cancer
4 years ago
Follow-up...and perhaps hope for us all
Last month I posted about my son's sudden leukemia diagnosis (see below). Although he was not well enough to make it to MD Anderson as planned in December, he did get there this week. It was anticipated that their recommendation would be either stay the course with the intense chemo that he was in the
Last month I posted about my son's sudden leukemia diagnosis (see below). Although he was not well enough to make it to MD Anderson as planned in December, he did get there this week. It was anticipated that their recommendation would be either stay the course with the intense chemo that he was in the
shueswim
in
Advanced Prostate Cancer
4 years ago
So much new CLL material to read
Welcome to the Fourth 2019 Issue of The CLL Society Tribune! So much to read there including amazing patient stories and my wife's Cajun Gingerbread recipe: https://cllsociety.org/quarter-4-2019-volume-5-issue-4/ More of my top 10 articles from ASCO: #8 Surviving CLL is only part of the story if we are
Welcome to the Fourth 2019 Issue of The CLL Society Tribune! So much to read there including amazing patient stories and my wife's Cajun Gingerbread recipe: https://cllsociety.org/quarter-4-2019-volume-5-issue-4/ More of my top 10 articles from ASCO: #8 Surviving CLL is only part of the story if we are
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Ashwagandha?
Hi Folks Wonder if anyone here tried this Indian ginseng? I’m keen to take it for reducing anxieties and improve quality of sleep. It may cause increase in T-lymphocytes when I googled; not sure if it will also increase our absolute lymphocytes? Seok
Hi Folks Wonder if anyone here tried this Indian ginseng? I’m keen to take it for reducing anxieties and improve quality of sleep. It may cause increase in T-lymphocytes when I googled; not sure if it will also increase our absolute lymphocytes? Seok
Seok
in
CLL Support
5 years ago
CLL Horizons 2019 - Edinburgh 19-21 September - video of speaker sessions
Hi all we are now pleased to start releasing videos from CLL Horizons, *PRESS RELEASE*13th December 2019 CLL Advocates Network would like to announce the initial release of videos from the CLL HORIZONS 2019 Conference held in Edinburgh, Scotland, 19-21 September 2019. This event was held during the
Hi all we are now pleased to start releasing videos from CLL Horizons, *PRESS RELEASE*13th December 2019 CLL Advocates Network would like to announce the initial release of videos from the CLL HORIZONS 2019 Conference held in Edinburgh, Scotland, 19-21 September 2019. This event was held during the
HAIRBEAR_UK
Administrator
in
CLL Support
5 years ago
CLL SOCIETY'S ASH POSTER on our Free second opinion program plus two important papers from ASCO
Hi, Just back from a frenetic and fantastic ASH, but still have news to share from ASCO. But first here is a link to our poster on our free second opinion program: 4716 An Innovative Telemedicine Platform to Provide Expert Access to Patients with Chronic Lymphocytic Leukemia (CLL) https://cllsociety.org
Hi, Just back from a frenetic and fantastic ASH, but still have news to share from ASCO. But first here is a link to our poster on our free second opinion program: 4716 An Innovative Telemedicine Platform to Provide Expert Access to Patients with Chronic Lymphocytic Leukemia (CLL) https://cllsociety.org
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Advice please....
It's been 3 weeks since my diagnosis for Hairy Cell Leukaemia and I'm slowly coming to terms with it, however I am confused. My consultant at the hospital has put me on 'Wait and Watch' but said I would be monitored regularly and would need regular blood tests and scans. Since then I havent heard anything
It's been 3 weeks since my diagnosis for Hairy Cell Leukaemia and I'm slowly coming to terms with it, however I am confused. My consultant at the hospital has put me on 'Wait and Watch' but said I would be monitored regularly and would need regular blood tests and scans. Since then I havent heard anything
TM1972
in
Leukaemia Support
5 years ago
Inrebic and myelofibrosis
As some of you know, I changed hematologists in September and found out my ET had finally progressed to MF. 🙁 My new doctor prescribed Inrebic and for the last month I have felt so fatigued and weak, it has affected my quality of life. I work a lot from bed now and rarely go out except with my partner
As some of you know, I changed hematologists in September and found out my ET had finally progressed to MF. 🙁 My new doctor prescribed Inrebic and for the last month I have felt so fatigued and weak, it has affected my quality of life. I work a lot from bed now and rarely go out except with my partner
Cja1956
in
MPN Voice
5 years ago
Webinar - Oral Therapies and Adherence in Lymphoma and CLL Jan 23 2020, 2:00-3:00 PM EST
Register at: https://beacon360.content.online/xbcs/S1791/catalog/product.xhtml?eid=16215
Register at: https://beacon360.content.online/xbcs/S1791/catalog/product.xhtml?eid=16215
wmay13241
in
CLL Support
5 years ago
The Winter issue of Leukaemia Matters will soon be landing at your door or in your inbox!
[i]Hello,[/i] [i]Welcome to the Winter issue of our magazine![/i] http://bit.ly/LeukaemiaMattersWinter2019 [i]It’s been another busy year for Leukaemia Care as we celebrated our [/i][i]50th anniversary. We spent much of the year working harder than ever to [/i][i]provide support and advice to those
[i]Hello,[/i] [i]Welcome to the Winter issue of our magazine![/i] http://bit.ly/LeukaemiaMattersWinter2019 [i]It’s been another busy year for Leukaemia Care as we celebrated our [/i][i]50th anniversary. We spent much of the year working harder than ever to [/i][i]provide support and advice to those
HAIRBEAR_UK
in
Leukaemia Support
5 years ago
ASH 2019: A Clinical Trial of Cannabis As Targeted Therapy for Indolent Leukemic Lymphoma
"Conclusion : This study demonstrates that it is safe to administrate a single dose of Sativex to elderly patients with indolent B-cell lymphoma with regards to adverse events. We show that the cannabis compound quickly reduces lymphoma cell numbers in peripheral blood. There was no evidence of activation
"Conclusion : This study demonstrates that it is safe to administrate a single dose of Sativex to elderly patients with indolent B-cell lymphoma with regards to adverse events. We show that the cannabis compound quickly reduces lymphoma cell numbers in peripheral blood. There was no evidence of activation
avzuclav
in
CLL Support
5 years ago
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