Search
Search
About
Log in
Join
Experiences with
Acute leukaemia
Posts
Communities
2,727 public posts
Filter results
Life beyond Myelofibrosis
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
Scaredy_cat
in
MPN Voice
1 year ago
introducing myself...
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
jmcasbar
in
Leukaemia CARE
1 year ago
Besremi
I keep thinking of additional questions to ask here in addition to my previous posts about Jakafi.When my oncologist suggested that I start this drug after trying to take HU, I suggested Besremi? He said he can't get it although he's tried several places? I'm confused? Is it not offered in
I keep thinking of additional questions to ask here in addition to my previous posts about Jakafi.When my oncologist suggested that I start this drug after trying to take HU, I suggested Besremi? He said he can't get it although he's tried several places? I'm confused? Is it not offered in
K-itty
in
MPN Voice
1 year ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Jakafi
I'm to start on Jakafi soon, after not being able to tolerate HU. Are some of you on this site currently on Jakafi and what side effects have you experienced? Weight gain, fatigue, hair loss, high cholesterol? How long before you began noticing side effects after starting the RX? What were your
I'm to start on Jakafi soon, after not being able to tolerate HU. Are some of you on this site currently on Jakafi and what side effects have you experienced? Weight gain, fatigue, hair loss, high cholesterol? How long before you began noticing side effects after starting the RX? What were your
K-itty
in
MPN Voice
1 year ago
Ruxolitinib plus Hydrea
Hi everyone I was supposed to start on IFN but my heamatologist is asking other consultants if Ruxolitinib and hydrea can be combined. Was on hydrea for Sixteen years but stopped controlling my platelets. Now on Ruxolitinib but can’t tolerate a high dose. She thinking lower dose both. Has anyone tried
Hi everyone I was supposed to start on IFN but my heamatologist is asking other consultants if Ruxolitinib and hydrea can be combined. Was on hydrea for Sixteen years but stopped controlling my platelets. Now on Ruxolitinib but can’t tolerate a high dose. She thinking lower dose both. Has anyone tried
Mudmaker
in
MPN Voice
1 year ago
Dietary Interventions and CLL - a case report
For those of you who are interested in dietary changes and CLL, I found an interesting clinical case report called "Stable improvement in classical B‐cell chronic lymphocytic leukemia with dietary interventions: A personal experience" by Dr. Pooij and his treating hematologist Dr. Raemaekers. The case
For those of you who are interested in dietary changes and CLL, I found an interesting clinical case report called "Stable improvement in classical B‐cell chronic lymphocytic leukemia with dietary interventions: A personal experience" by Dr. Pooij and his treating hematologist Dr. Raemaekers. The case
Minou1
in
CLL Support
10 months ago
While on Watch and Wait
When you are newly diagnosed with CLL , is it normal to be placed on W&W and not be given the following test, FISH , TP53 , AND IGHV ? My GP did have me see the oncologist , who order the Leukemia/Lymphoma Eval. and a Flow Cytometry test. It sounds like some Doctors only order the test when
When you are newly diagnosed with CLL , is it normal to be placed on W&W and not be given the following test, FISH , TP53 , AND IGHV ? My GP did have me see the oncologist , who order the Leukemia/Lymphoma Eval. and a Flow Cytometry test. It sounds like some Doctors only order the test when
Sillysand
in
CLL Support
1 year ago
Prefibrotic Myelofibrosis and I hate Hydroxyurea (HU)
Recently diagnosed, first with ET. And put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage.
Recently diagnosed, first with ET. And put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage.
Apple238
in
Leukaemia CARE
1 year ago
Prefibrotic myelofibrosis and I hate hydroxyurea (HU)
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage. I resisted
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage. I resisted
Apple238
in
MPN Voice
1 year ago
Ruxolitinib Versus Best Available Therapy for Polycythemia Vera posted by Manouche
Manouche posted the very new Majic-PV trial. Some thoughts (sorry it's not better organized, I'm not top of my game these days): Rux is looking similar to IFN for allele reductions (My Dr sort of said "I told you so") This like most other Rux studies have been handicapped by selecting for HU intolerant
Manouche posted the very new Majic-PV trial. Some thoughts (sorry it's not better organized, I'm not top of my game these days): Rux is looking similar to IFN for allele reductions (My Dr sort of said "I told you so") This like most other Rux studies have been handicapped by selecting for HU intolerant
EPguy
in
MPN Voice
1 year ago
Ruxolitinib Versus Best Available Therapy for Polycythemia Vera Intolerant or Resistant to Hydroxycarbamide in a Randomized Trial
« Patients with PV often have high JAK2 V 617F VAF (>50%) because of the emergence of a dominant clone with concurrent loss of wild-type JAK2, which in turn is associated with increased risk of vascular events and transformation to myelofibrosis. In MPN, unlike other hematologic malignancies, for example
« Patients with PV often have high JAK2 V 617F VAF (>50%) because of the emergence of a dominant clone with concurrent loss of wild-type JAK2, which in turn is associated with increased risk of vascular events and transformation to myelofibrosis. In MPN, unlike other hematologic malignancies, for example
Manouche
in
MPN Voice
1 year ago
How can chromosomal and mutation abnormalities in chronic MPN inform clinical decision making?
Another interesting post from MPN Hub. Discussion of the three driver mutations and the importance of using the more sensitive tests to diagnose patients with low allele burden. Also discussion regarding prognosis. https://www.youtube.com/watch?v=jb9dJILZWGQ
Another interesting post from MPN Hub. Discussion of the three driver mutations and the importance of using the more sensitive tests to diagnose patients with low allele burden. Also discussion regarding prognosis. https://www.youtube.com/watch?v=jb9dJILZWGQ
hunter5582
in
MPN Voice
1 year ago
I have Polycythemia with Jak 2 Mutations and /Thrombocytopenia
Hi I wonder if someone could please advise me x I’ve recently been started on I tablet 500mgs of Hydroxycarbamide a day x I’m in a new relationship and I wondered is it okay for intimate relations or should I be using some sort of protection for my partner? ie condoms? we are both early 60’s x
Hi I wonder if someone could please advise me x I’ve recently been started on I tablet 500mgs of Hydroxycarbamide a day x I’m in a new relationship and I wondered is it okay for intimate relations or should I be using some sort of protection for my partner? ie condoms? we are both early 60’s x
fairytabu
in
MPN Voice
1 year ago
Momelotinib Found Superior to Danazol for the Treatment of Myelofibrosis
Clinically significant improvements in myelofibrosis-associated symptoms, anemia, and spleen response were achieved with momelotinib, compared with danazol, in patients with myelofibrosis. These findings were published in The Lancet. Danazol has often been used to treat patients with myelofibrosis,
Clinically significant improvements in myelofibrosis-associated symptoms, anemia, and spleen response were achieved with momelotinib, compared with danazol, in patients with myelofibrosis. These findings were published in The Lancet. Danazol has often been used to treat patients with myelofibrosis,
PhysAssist
in
MPN Voice
1 year ago
Progress update - Pirtobrutinib triple trial for treatment naive
I finished Cycle 4 of the fixed duration Pirtobrutinib combo trial at M.D. Anderson for Pirtobrutinib, Obinutuzumab, and Venetoclax on June 13, 2023. https://clinicaltrials.gov/study/NCT05536349?tab=table In addition to the usual blood tests - CBC, differential, metabolic, electrolyte, and immunoglobulin
I finished Cycle 4 of the fixed duration Pirtobrutinib combo trial at M.D. Anderson for Pirtobrutinib, Obinutuzumab, and Venetoclax on June 13, 2023. https://clinicaltrials.gov/study/NCT05536349?tab=table In addition to the usual blood tests - CBC, differential, metabolic, electrolyte, and immunoglobulin
SeymourB
in
CLL Support
10 months ago
Chorea and PV
Hi - I don't post very often but I thought that this might be worthy of sharing. It is second hand experience as it is my mother who suffers with Polycythaemia vera (PV). She is 86 and is taking Hydroxycarbamide for PV (amongst other medications). Around a couple of years ago my mother started to experience
Hi - I don't post very often but I thought that this might be worthy of sharing. It is second hand experience as it is my mother who suffers with Polycythaemia vera (PV). She is 86 and is taking Hydroxycarbamide for PV (amongst other medications). Around a couple of years ago my mother started to experience
PFR1937
in
MPN Voice
1 year ago
CLL and Hyperthroid
I was treated for CLL in 2018 - chlorambucil and Gazyvaro. No problems at all until last month a random blood test indicated an over active thyroid, for which I am now taking medication. I understand that both conditions relate to the immune system. I will see an endocrinologist in 3 months to check
I was treated for CLL in 2018 - chlorambucil and Gazyvaro. No problems at all until last month a random blood test indicated an over active thyroid, for which I am now taking medication. I understand that both conditions relate to the immune system. I will see an endocrinologist in 3 months to check
Hidden
in
CLL Support
10 months ago
Discovery of a signaling feedback circuit that defines interferon responses in myeloproliferative neoplasms- Published: 01 April 2022
This gets a little deep, but nonetheless may explain some things:
Abstract
Interferons (IFNs) are key initiators and effectors of the immune response against malignant cells and also directly inhibit tumor growth. IFNα is highly effective in the treatment of myeloproliferative neoplasms (MPNs
This gets a little deep, but nonetheless may explain some things:
Abstract
Interferons (IFNs) are key initiators and effectors of the immune response against malignant cells and also directly inhibit tumor growth. IFNα is highly effective in the treatment of myeloproliferative neoplasms (MPNs
PhysAssist
in
MPN Voice
1 year ago
Dosing Jakafi
After 2 years on Hydrea for CALR ET, 4 weeks ago I started jakafi 10mg twice a day . Getting cbc every two weeks has shown platelets increasing each time. When I started they were 620ish, 2 weeks later 702, Then yesterday they were 820. Now doc wants me to go to 15mg twice daily. I’ve been feeling
After 2 years on Hydrea for CALR ET, 4 weeks ago I started jakafi 10mg twice a day . Getting cbc every two weeks has shown platelets increasing each time. When I started they were 620ish, 2 weeks later 702, Then yesterday they were 820. Now doc wants me to go to 15mg twice daily. I’ve been feeling
George1976
in
MPN Voice
1 year ago
'Astonishing' Results: Skip Salvage Chemo, Go Straight to HSCT from ASH 2022 [For Refractory AML/Relapsed AML]
NEW ORLEANS — Investigators confessed to being "astonished" by results of a randomized trial showing that patients with acute myeloid leukemia who have a poor response following induction therapy do just as well going on to immediate allogeneic transplant as they would if they had received an intensive
NEW ORLEANS — Investigators confessed to being "astonished" by results of a randomized trial showing that patients with acute myeloid leukemia who have a poor response following induction therapy do just as well going on to immediate allogeneic transplant as they would if they had received an intensive
PhysAssist
in
MPN Voice
1 year ago
1
...
9
10
11
...
100
Next page
10
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1614 results
MPN Voice
774 results
Leukaemia CARE
170 results
View top 10 communities
Sort by
Most Relevant
Newest