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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
4 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
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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
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 CARE
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
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
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 CARE
5 years ago
MF review article : Treatment options 2019
Hi. This is a very clear summary of treatment options. Just google MF and Ruxolitinib , and the article summary comes up. You can also print off a PDF of the whole article, if you are lucky. Worth showing to your haematologist. Myelofibrosis in 2019: moving beyond JAK2 inhibition” Schieber et al. Blood
Hi. This is a very clear summary of treatment options. Just google MF and Ruxolitinib , and the article summary comes up. You can also print off a PDF of the whole article, if you are lucky. Worth showing to your haematologist. Myelofibrosis in 2019: moving beyond JAK2 inhibition” Schieber et al. Blood
Rachelthepotter
in
MPN Voice
5 years ago
WEIGHT GAINS WITH JAKAFI
Post by MPN-MATE Admin » Sat Nov 23, 2019 9:53 pm Hey guys... :D As someone who is taking Ruxolitinib, I found this paper's frank admissions rather interesting seeing that the funding is coming from the manufacturers of Ruxolitinib (Jakafi). It is definitely worth a good read, as it explains how
Post by MPN-MATE Admin » Sat Nov 23, 2019 9:53 pm Hey guys... :D As someone who is taking Ruxolitinib, I found this paper's frank admissions rather interesting seeing that the funding is coming from the manufacturers of Ruxolitinib (Jakafi). It is definitely worth a good read, as it explains how
socrates_8
in
MPN Voice
5 years ago
YABTKi or Yet Another BTK inhibitor - the A to Z list of Bruton's Tyrosine Kinase Inhibitors for CLL following Ibrutinib's success
I'll admit that YABTKi is not a recognised CLL related acronym, (acronym lists are here https://healthunlocked.com/cllsupport/posts/private/134932756/cll-abbreviations-in-one-post ), but perhaps it should be! I've attempted in this post to keep tabs on the growing list of BTK inhibitor (BTKi) drugs
I'll admit that YABTKi is not a recognised CLL related acronym, (acronym lists are here https://healthunlocked.com/cllsupport/posts/private/134932756/cll-abbreviations-in-one-post ), but perhaps it should be! I've attempted in this post to keep tabs on the growing list of BTK inhibitor (BTKi) drugs
AussieNeil
Partner
in
CLL Support
5 years ago
CLL Society Support Group Meetings USA Coming Up!
CLL Society Support Group Meetings Coming Up! https://myemail.constantcontact.com/CLL-Society-Alert----December-3--2019.html?soid=1120967015548&aid=3A0RRuM8V-s https://cllsociety.org/events/ - San Diego CLL Society Support and Education Meeting - December 4 @ 4:00 pm - New Orleans and Surrounding
CLL Society Support Group Meetings Coming Up! https://myemail.constantcontact.com/CLL-Society-Alert----December-3--2019.html?soid=1120967015548&aid=3A0RRuM8V-s https://cllsociety.org/events/ - San Diego CLL Society Support and Education Meeting - December 4 @ 4:00 pm - New Orleans and Surrounding
lankisterguy
Volunteer
in
CLL Support
5 years ago
Test Before Treat
Test Before Treat™ Although this comes from the USA, the logic and reasoning can apply to any international patient and medical professionals. https://cllsociety.org/wp-content/uploads/2019/08/Test-Before-Treat-One-pager-V3.pdf "More Patients Spill the Beans on their Test Before Treat™ Experiences
Test Before Treat™ Although this comes from the USA, the logic and reasoning can apply to any international patient and medical professionals. https://cllsociety.org/wp-content/uploads/2019/08/Test-Before-Treat-One-pager-V3.pdf "More Patients Spill the Beans on their Test Before Treat™ Experiences
lankisterguy
Volunteer
in
CLL Support
5 years ago
Venetoclax Added to Ibrutinib in High-Risk CLL Achieves a High Rate of Undetectable Minimal Residual Disease.
December 8, 2019 ASH poster. There are lots of us on long term Ibrutinib who have had a good response but still have a small amount of residual disease. I would welcome the chance to add venetoclax to my treatment as in this study which is an important piece of work by Michael J Keating et al. "[i]Patients
December 8, 2019 ASH poster. There are lots of us on long term Ibrutinib who have had a good response but still have a small amount of residual disease. I would welcome the chance to add venetoclax to my treatment as in this study which is an important piece of work by Michael J Keating et al. "[i]Patients
Jm954
Administrator
in
CLL Support
5 years ago
Transformation Confirmed - Likely Richter’s
My doctor called yesterday and confirmed my PET from last week shows definite transformation and the PA called today to say it’s likely Richter’s (forgot to ask if confirmed by the biopsy - still shock) and they want to start treatment this week. I’m headed back to Houston for consult and planning.
My doctor called yesterday and confirmed my PET from last week shows definite transformation and the PA called today to say it’s likely Richter’s (forgot to ask if confirmed by the biopsy - still shock) and they want to start treatment this week. I’m headed back to Houston for consult and planning.
SarasotaPaul
in
CLL Support
5 years ago
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