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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
4 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
4 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. š 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. š 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
4 years ago
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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
4 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
4 years ago
Hens teeth, aggressive sarcomatoid sccs and ruxolitinib
Hi. Iāve just been informed that that the sarcomatoid scc that Iād had excised from my cheek on Nov 6 th was indeed a recurrence of the same type that Iād 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. Iāve just been informed that that the sarcomatoid scc that Iād had excised from my cheek on Nov 6 th was indeed a recurrence of the same type that Iād 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
4 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
4 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 inhibitionā 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 inhibitionā Schieber et al. Blood
Rachelthepotter
in
MPN Voice
4 years ago
WEIGHT GAINS WITH JAKAFI
Post by MPN-MATE Admin Ā» 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 Ā» 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
4 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
Administrator
in
CLL Support
4 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
4 years ago
Test Before Treat
Test Before Treatā¢ 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 Treatā¢ Experiences
Test Before Treatā¢ 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 Treatā¢ Experiences
lankisterguy
Volunteer
in
CLL Support
4 years ago
Transformation Confirmed - Likely Richterās
My doctor called yesterday and confirmed my PET from last week shows definite transformation and the PA called today to say itās likely Richterās (forgot to ask if confirmed by the biopsy - still shock) and they want to start treatment this week. Iām 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 itās likely Richterās (forgot to ask if confirmed by the biopsy - still shock) and they want to start treatment this week. Iām headed back to Houston for consult and planning.
SarasotaPaul
in
CLL Support
4 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
4 years ago
The TP53 mutational landscape in CLL is very complex
December 8, 2019 Interesting poster shedding a bit more light on the complexity of TP53 mutations and its independence from 17p deletion. [i]"TP53 aberrations, including somatic mutations of TP53 gene or 17p deletion leading to the loss of the TP53 locus, are a major predictive factor of resistance to
December 8, 2019 Interesting poster shedding a bit more light on the complexity of TP53 mutations and its independence from 17p deletion. [i]"TP53 aberrations, including somatic mutations of TP53 gene or 17p deletion leading to the loss of the TP53 locus, are a major predictive factor of resistance to
Jm954
Administrator
in
CLL Support
4 years ago
CD3xCD19 Dart Treatment Is Efficient in Venetoclax Resistant CLL and Reverses T Cell Dysfunction
DART (rather than CART) treatment could be come important in the future, especially for CLL where the T cells become exhausted and don't function appropriately. We often think that Venetoclax works for everyone but sadly that isn't true and this in vitro (lab) study on CLL cells, although at very early
DART (rather than CART) treatment could be come important in the future, especially for CLL where the T cells become exhausted and don't function appropriately. We often think that Venetoclax works for everyone but sadly that isn't true and this in vitro (lab) study on CLL cells, although at very early
Jm954
Administrator
in
CLL Support
4 years ago
Does taking Nplate causes nose bleed ?
I'm currently in week 3 of taking Nplate. It could boost my platelet count to 32 however I have nosebleed sometimes recently. I was wondering if it's a side effect of NPlate or something serious?
I'm currently in week 3 of taking Nplate. It could boost my platelet count to 32 however I have nosebleed sometimes recently. I was wondering if it's a side effect of NPlate or something serious?
farasad2001
in
ITP Support Association
4 years ago
Long time DX,SORT TIME TMT
I was diagnosed with CLL in 1995. Iāve been on W&W until this year in Sept. at age 86. Treatment was initiated Ibrutinib 140mg, orally per diem. Iāve positive movement with my numbers and the splenomegaly. My nodes were minimally involved. My side effects have been undetectable. Given good response
I was diagnosed with CLL in 1995. Iāve been on W&W until this year in Sept. at age 86. Treatment was initiated Ibrutinib 140mg, orally per diem. Iāve positive movement with my numbers and the splenomegaly. My nodes were minimally involved. My side effects have been undetectable. Given good response
desti
in
CLL Support
4 years ago
No fear and so grateful for Mutation diagnoses
So for the past eight years since starting treatment for ET I was in chronic all over skeletal pain also neurological (all from medication as I had NO pain before). I now have Myelofibrosis and to be honest am over the moon!! Instead of it being a negative itās like I have a life worth living again.
So for the past eight years since starting treatment for ET I was in chronic all over skeletal pain also neurological (all from medication as I had NO pain before). I now have Myelofibrosis and to be honest am over the moon!! Instead of it being a negative itās like I have a life worth living again.
StreetPastor
in
MPN Voice
4 years ago
Dr Michael Keating's Story - Taking CLL Therapies From Bedside to Community
A fascinating overview of one of the giants in CLL research, who provided many of us with the first treatment capable of prolonging life expectancy (FCR) and for about 60% of those who are mutated IgHV, effectively a cure. From humble beginnings in Melbourne Australia, to a fulfilling career at the
A fascinating overview of one of the giants in CLL research, who provided many of us with the first treatment capable of prolonging life expectancy (FCR) and for about 60% of those who are mutated IgHV, effectively a cure. From humble beginnings in Melbourne Australia, to a fulfilling career at the
AussieNeil
Administrator
in
CLL Support
4 years ago
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