Search
Search
About
Log in
Join
Experiences with
Lymphocytic leukemia
Posts
Communities
3,100 public posts
Filter results
MF with falling Hb: what drugs to go to next?
Hi guys, I have MF, platelets fine, whites a bit high (23), Hb dropping, now 90. On 10mg x2 Jakafi a day, spleen expanding again and liver. Haematologist not sure what to do - back in 4 weeks after he has taken advice. Mentioned Interferon and both higher and lower doses of Jakafi. Sorry about the similarity
Hi guys, I have MF, platelets fine, whites a bit high (23), Hb dropping, now 90. On 10mg x2 Jakafi a day, spleen expanding again and liver. Haematologist not sure what to do - back in 4 weeks after he has taken advice. Mentioned Interferon and both higher and lower doses of Jakafi. Sorry about the similarity
jane13
in
MPN Voice
6 years ago
Good news to finish the week on
I thought you might be interested to see this article from the British Society for Hematology, published earlier this week. It seems that there is active research into MPN across many parts of the world - which is great for us. On a personal note I also homed in on the third para which states definitively
I thought you might be interested to see this article from the British Society for Hematology, published earlier this week. It seems that there is active research into MPN across many parts of the world - which is great for us. On a personal note I also homed in on the third para which states definitively
Ovingite
in
MPN Voice
6 years ago
Stupid me
Well I’ve managed to come away on holiday for 2 weeks and forgotten to bring my Ruxolitinib 🤬 can’t wait for the itching and bone pain to start, it’s going to be such fun............ Janet x
Well I’ve managed to come away on holiday for 2 weeks and forgotten to bring my Ruxolitinib 🤬 can’t wait for the itching and bone pain to start, it’s going to be such fun............ Janet x
Skye333
in
MPN Voice
6 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
CLL Society Alert - October 23, 2018
http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=27a5c5e8-da36-47c0-8638-d063a29a0bd1 This newsletter is issued by email several times per month listing many upcoming in-person support meetings and educational forums all over the USA & Canada. It's very easy to sign up to get your own
http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=27a5c5e8-da36-47c0-8638-d063a29a0bd1 This newsletter is issued by email several times per month listing many upcoming in-person support meetings and educational forums all over the USA & Canada. It's very easy to sign up to get your own
lankisterguy
Volunteer
in
CLL Support
6 years ago
beginning with Ibrutinib
Next week i will begin with Ibrutinib , as told i am igvh and p53 mutated .RC , platelels are good . Inmunoglobulins down the normal , but no infections. Some large Lynph nodes in my abdomen that may risk organs and higher creatinine and uric acid than normal are the reason to begin treatment. Any advice
Next week i will begin with Ibrutinib , as told i am igvh and p53 mutated .RC , platelels are good . Inmunoglobulins down the normal , but no infections. Some large Lynph nodes in my abdomen that may risk organs and higher creatinine and uric acid than normal are the reason to begin treatment. Any advice
antonb
in
CLL Support
6 years ago
New haem, new diagnosis?
Hi Guys, just a quick update. On bus travelling home after a worthwhile consult with new haem yesterday. It turns out I may not have polycythemia Vera but a different version. Think filled up 8 tubes of blood tests and go back in 6 weeks to get all results. At last someone has listened and was so
Hi Guys, just a quick update. On bus travelling home after a worthwhile consult with new haem yesterday. It turns out I may not have polycythemia Vera but a different version. Think filled up 8 tubes of blood tests and go back in 6 weeks to get all results. At last someone has listened and was so
Aime
in
MPN Voice
6 years ago
LLS Ask the Doctor New York City- Dr. Anthony Mato Dinner Meeting Dec 12, 2018
http://support.lymphoma.org/site/MessageViewer?em_id=3116.0&dlv_id=6484 Ask the Doctor – New York, NY Free Educational Program for Lymphoma Patients, Survivors and Caregivers Date and Time: Wednesday, December 12, 2018 Location: DoubleTree by Hilton, Metropolitan - NYC 569 Lexington Avenue
http://support.lymphoma.org/site/MessageViewer?em_id=3116.0&dlv_id=6484 Ask the Doctor – New York, NY Free Educational Program for Lymphoma Patients, Survivors and Caregivers Date and Time: Wednesday, December 12, 2018 Location: DoubleTree by Hilton, Metropolitan - NYC 569 Lexington Avenue
lankisterguy
Volunteer
in
CLL Support
6 years ago
Melanoma linked with CLL, close monitoring recommended - worth a read on sciencedaily.com
While studying a large group of individuals with chronic
lymphocytic
leukemia
(CLL), a research team made an important discovery: these patients had a sizable 600 percent higher risk of melanoma, the most dangerous form of skin cancer.
While studying a large group of individuals with chronic
lymphocytic
leukemia
(CLL), a research team made an important discovery: these patients had a sizable 600 percent higher risk of melanoma, the most dangerous form of skin cancer.
Steffi50
in
CLL Support
6 years ago
Ask the CLL Expert - LIVE - September 27, 2018 at 12 PM Pacific Time (2 PM CT, 3 PM ET) with leading CLL specialist Dr. Jeff Sharman
Ask the CLL Expert - LIVE September 27, 2018 https://www.patientpower.info/event/ask-the-cll-expert-live Do you have a burning question for an expert in chronic
lymphocytic
leukemia
(CLL)?
Ask the CLL Expert - LIVE September 27, 2018 https://www.patientpower.info/event/ask-the-cll-expert-live Do you have a burning question for an expert in chronic
lymphocytic
leukemia
(CLL)?
lankisterguy
Volunteer
in
CLL Support
6 years ago
Ruxolitinib for Polycythemia Vera
I am 77years old. I was diagnosed with Polycythemia Vera in Dec 2005 (JAK2+) and had symptoms including visual disturbances for about 2 years before this. I have taken Hydroxicarbimide over the years the dose increasing from 8-500mg capsules per week in 2005 to 11-500mg per week today. I see my haematologist
I am 77years old. I was diagnosed with Polycythemia Vera in Dec 2005 (JAK2+) and had symptoms including visual disturbances for about 2 years before this. I have taken Hydroxicarbimide over the years the dose increasing from 8-500mg capsules per week in 2005 to 11-500mg per week today. I see my haematologist
SirKitBored
in
MPN Voice
6 years ago
MF, Jakafi, and Osteosclerosis
Hi everyone, I was diagnosed with MF post PV since 4 months, in my last BM biopsy it states MF3 for bone fibrosis and the Osteosclerosis is obvious now. My set of questions are: 1- Does Jakafi hinder or slow the Osteosclerosis down? 2- Can this Osteosclerosis retract somehow after the HCT (Transplant
Hi everyone, I was diagnosed with MF post PV since 4 months, in my last BM biopsy it states MF3 for bone fibrosis and the Osteosclerosis is obvious now. My set of questions are: 1- Does Jakafi hinder or slow the Osteosclerosis down? 2- Can this Osteosclerosis retract somehow after the HCT (Transplant
amalekh
in
MPN Voice
6 years ago
Ruxolitinib
Husband has been on Ruxolitinib { Jakavi} 15grms twice a day for the past 15 months. He has never felt better no problems with taking this drug at all and all going well with his bloods etc. He has had knee problems for a long time but has not had knee replacement done as over the past few years
Husband has been on Ruxolitinib { Jakavi} 15grms twice a day for the past 15 months. He has never felt better no problems with taking this drug at all and all going well with his bloods etc. He has had knee problems for a long time but has not had knee replacement done as over the past few years
waddles22
in
MPN Voice
6 years ago
Jakafi
Hi all! I would love your input please with regards to my hematologist is considering change of my meds from Hydrea to Jakafi. This is the first time that it will be used for polycythemia. It has been used in cases of high risk myelofibrosis. This will be in response to the issue of both hands swelling
Hi all! I would love your input please with regards to my hematologist is considering change of my meds from Hydrea to Jakafi. This is the first time that it will be used for polycythemia. It has been used in cases of high risk myelofibrosis. This will be in response to the issue of both hands swelling
Sheryljean
in
MPN Voice
6 years ago
Vaccine Recommendations for CLL Patient Power Video- August 16, 2018
Should chronic
lymphocytic
leukemia
(CLL) patients get preventative vaccinations? A panel of experts including Dr. Michael Keating, from The University of Texas MD Anderson Cancer Center, and Dr.
Should chronic
lymphocytic
leukemia
(CLL) patients get preventative vaccinations? A panel of experts including Dr. Michael Keating, from The University of Texas MD Anderson Cancer Center, and Dr.
lankisterguy
Volunteer
in
CLL Support
6 years ago
Spleen pain
My spleen grew 4 cm recently and the pain is unbearable! Does anyone else have this issue? I started back in Jakafi and was wondering how long it will take to ease this pain? Thanks in advance. Mary
My spleen grew 4 cm recently and the pain is unbearable! Does anyone else have this issue? I started back in Jakafi and was wondering how long it will take to ease this pain? Thanks in advance. Mary
Murry33
in
MPN Voice
6 years ago
BTK Inhibitor Success Puts Focus on Resistance Mechanisms
Less than 5 years after Bruton tyrosine kinase (BTK) inhibition was introduced in hematologic malignancies, the need for strategies to address primary and secondary mechanisms of resistance has emerged. The robust potency of ibrutinib (Imbruvica), which, in December 2013, became the first BTK inhibitor
Less than 5 years after Bruton tyrosine kinase (BTK) inhibition was introduced in hematologic malignancies, the need for strategies to address primary and secondary mechanisms of resistance has emerged. The robust potency of ibrutinib (Imbruvica), which, in December 2013, became the first BTK inhibitor
Cllcanada
Top Poster CURE Hero
in
CLL Support
6 years ago
Ibrutinib linked to invasive fungal infections
- Although ibrutinib, an inhibitor of Bruton’s tyrosine kinase, is generally considered to be less immunosuppressive than other therapies, it was associated with five cases of Pneumocystis jirovecii pneumonia in patients with chronic
lymphocytic
leukemia
(CLL) treated with ibrutinib monotherapy in
- Although ibrutinib, an inhibitor of Bruton’s tyrosine kinase, is generally considered to be less immunosuppressive than other therapies, it was associated with five cases of Pneumocystis jirovecii pneumonia in patients with chronic
lymphocytic
leukemia
(CLL) treated with ibrutinib monotherapy in
lankisterguy
Volunteer
in
CLL Support
6 years ago
How two 1990s discoveries have led to (some) cured cancers, and a Nobel Prize
[i]"This year’s award of the Nobel Prize for Physiology and Medicine to James P. Allison and Tasuku Honjo, for their work in the early 1990s on immune checkpoint proteins CTLA4 and PD1, is a fitting recognition of how their work has led to a seismic shift in the way we treat cancer. In a remarkably
[i]"This year’s award of the Nobel Prize for Physiology and Medicine to James P. Allison and Tasuku Honjo, for their work in the early 1990s on immune checkpoint proteins CTLA4 and PD1, is a fitting recognition of how their work has led to a seismic shift in the way we treat cancer. In a remarkably
AussieNeil
Partner
in
CLL Support
6 years ago
What Lipton green tea bags do you folks recommend? None of the boxes define the EGCG amounts.
Hello this is my first post. I signed up yesterday and have been spending a lot of time reading, so much information. My history starts when I was in the hospital for 10 days due to a bad case of Pneumonia (05/2016). I never had an issue with high blood counts or anything. When I was discharged I
Hello this is my first post. I signed up yesterday and have been spending a lot of time reading, so much information. My history starts when I was in the hospital for 10 days due to a bad case of Pneumonia (05/2016). I never had an issue with high blood counts or anything. When I was discharged I
Riven8
in
CLL Support
6 years ago
Duvelisib has marked response, survival benefit in difficult-to-treat leukemia and lymphoma
"The way we treat patients with CLL is changing rapidly as we move from standard chemotherapy-based approaches to more targeted therapies," said principal investigator Ian W. Flinn, MD, Ph.D., Director of the Lymphoma Research Program at Sarah Cannon Research Institute in Nashville. "Based on these data
"The way we treat patients with CLL is changing rapidly as we move from standard chemotherapy-based approaches to more targeted therapies," said principal investigator Ian W. Flinn, MD, Ph.D., Director of the Lymphoma Research Program at Sarah Cannon Research Institute in Nashville. "Based on these data
Cllcanada
Top Poster CURE Hero
in
CLL Support
6 years ago
1
...
89
90
91
...
100
Next page
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1944 results
MPN Voice
793 results
Leukaemia Support
168 results
View top 10 communities
Sort by
Most Relevant
Newest