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MF and mutations
Hi I am 79 and have been diagnosed with MF. Blood tests have confirmed I have the following mutations EZH2 x 2, ASXL1, ETV6 in addition to Jak2. I am currently under the care of Prof Harrison at Guys, and she states these mutations make me a high risk patient. I am not experiencing any symptoms apart
Hi I am 79 and have been diagnosed with MF. Blood tests have confirmed I have the following mutations EZH2 x 2, ASXL1, ETV6 in addition to Jak2. I am currently under the care of Prof Harrison at Guys, and she states these mutations make me a high risk patient. I am not experiencing any symptoms apart
billybrock
in
MPN Voice
5 years ago
A nervous wreck.
I have been referred to Hematology for Lymphocytosis (symptomatic). He is in the process of checking to see if it is Leukemia. I'm trying to find out as much as I can before I go back on Monday 1/6/20. I do have Ebstein Bar Virus that is active. I am a bundle of nerves at this point.
I have been referred to Hematology for Lymphocytosis (symptomatic). He is in the process of checking to see if it is Leukemia. I'm trying to find out as much as I can before I go back on Monday 1/6/20. I do have Ebstein Bar Virus that is active. I am a bundle of nerves at this point.
Adnor
in
CLL Support
5 years ago
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
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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
5 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
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
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
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
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
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
Hens teeth, aggressive sarcomatoid sccs and ruxolitinib
Hi. I’ve just been informed that that the sarcomatoid scc that I’d had excised from my cheek on Nov 6 th was indeed a recurrence of the same type that I’d had before, and it has a poor prognosis. Radiotherapy on my face might help prevent more spreading. Or might not. The new lesion was described
Hi. I’ve just been informed that that the sarcomatoid scc that I’d had excised from my cheek on Nov 6 th was indeed a recurrence of the same type that I’d had before, and it has a poor prognosis. Radiotherapy on my face might help prevent more spreading. Or might not. The new lesion was described
Rachelthepotter
in
MPN Voice
5 years ago
New member
Hi, im Angie, i was diagnosed with CML in October 2016. Ive been on imatinib 400mg since diagnosis and the main side effect being chronic fatigue. Just recently the fatigue has gotten worse and the consultant said its nothing to do the meds or illness. Got to say its really getting down now, i go swimming
Hi, im Angie, i was diagnosed with CML in October 2016. Ive been on imatinib 400mg since diagnosis and the main side effect being chronic fatigue. Just recently the fatigue has gotten worse and the consultant said its nothing to do the meds or illness. Got to say its really getting down now, i go swimming
Swimmer19
in
Leukaemia Support
5 years ago
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