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One-to-one buddy support
One of our buddies, was featured in this week's Telegraph along with his match. you can read more here, part of the Telegraph Christmas appeal https://telegraph.co.uk/christmas/2019/11/14/cancer-buddies-sometimes-another-person-leukaemia-understands/ Earlier this year, we had a chat about why be a
One of our buddies, was featured in this week's Telegraph along with his match. you can read more here, part of the Telegraph Christmas appeal https://telegraph.co.uk/christmas/2019/11/14/cancer-buddies-sometimes-another-person-leukaemia-understands/ Earlier this year, we had a chat about why be a
HAIRBEAR_UK
in
Leukaemia 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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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
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
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
Update and Best Wishes
Have just got out of hospital after three days of methylprednisolone infusions. The idea was to bring me into hospital and give me a boost so I could go on a holiday. Just as well I went in because it coincided with a fairly bad attack, so hopefully I’ll be OK now for a month or so. Mid February
Have just got out of hospital after three days of methylprednisolone infusions. The idea was to bring me into hospital and give me a boost so I could go on a holiday. Just as well I went in because it coincided with a fairly bad attack, so hopefully I’ll be OK now for a month or so. Mid February
lesleyg
in
Behçet's UK
5 years ago
Oxbryta Receives FDA Approval for Treating Sickle Cell Disease
On Monday, the U.S. Food and Drug Administration (FDA) announced accelerated approval of Oxbryta (voxelotor) for the treatment of sickle cell disease in patients aged 12 and above. “Oxbryta is the first approved treatment for sickle cell disease that directly inhibits the root cause of the disease,
On Monday, the U.S. Food and Drug Administration (FDA) announced accelerated approval of Oxbryta (voxelotor) for the treatment of sickle cell disease in patients aged 12 and above. “Oxbryta is the first approved treatment for sickle cell disease that directly inhibits the root cause of the disease,
RobertReny
in
Sickle Cell Society
5 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
5 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
5 years ago
Long time DX,SORT TIME TMT
I was diagnosed with CLL in 1995. I’ve been on W&W until this year in Sept. at age 86. Treatment was initiated Ibrutinib 140mg, orally per diem. I’ve 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. I’ve been on W&W until this year in Sept. at age 86. Treatment was initiated Ibrutinib 140mg, orally per diem. I’ve 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
5 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 it’s 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 it’s like I have a life worth living again.
StreetPastor
in
MPN Voice
5 years ago
Temporal Ultrasound May Be Useful in Giant Cell Arteritis Disease Monitoring (in patients paring corticosteroids with tocilizumab)
Thought this was an interesting article... wouldn't it be great if ultrasounds became the standard and most reliable source for monitoring and tracking GCA, in all patients, not just those paring their corticosteroids with tocilizumab. The more tracking/monitoring, the more data... the more data,
Thought this was an interesting article... wouldn't it be great if ultrasounds became the standard and most reliable source for monitoring and tracking GCA, in all patients, not just those paring their corticosteroids with tocilizumab. The more tracking/monitoring, the more data... the more data,
Hidden
in
PMRGCAuk
5 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
Partner
in
CLL Support
5 years ago
IVGH results
Hello. I am new to the group, just diagnosed this month. My last CBC showed absolute lymphocytes at 5280. I was feeling pretty good after my doctor explained what CLL is, how it progresses etc. But today I got results of another test back with the following: IVGH Borderline Mutated Mutation Rate 3.0
Hello. I am new to the group, just diagnosed this month. My last CBC showed absolute lymphocytes at 5280. I was feeling pretty good after my doctor explained what CLL is, how it progresses etc. But today I got results of another test back with the following: IVGH Borderline Mutated Mutation Rate 3.0
lmav
in
CLL Support
5 years ago
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