Search
Search
About
Log in
Join
Experiences with
Acute leukaemia
Posts
Communities
2,727 public posts
Filter results
Itching in Myelofibrosis
I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfusions. In the last few months I've noticed increased itching. Last night I woke at 2.30am and the itching made it impossible for me to lie still and go back to sleep. I am on 10mg of Cetirizine Hydrochloride daily and though
I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfusions. In the last few months I've noticed increased itching. Last night I woke at 2.30am and the itching made it impossible for me to lie still and go back to sleep. I am on 10mg of Cetirizine Hydrochloride daily and though
Bullace
in
MPN Voice
2 months ago
Co pay assistance exhausted for Jakafi
My BCBS coverage through my employer was changed at the new year. Someone decided I was too expensive and changed how drugs were covered. They used to apply toward my deductible and then covered 100%. At the beginning of this year that changed. Drugs no longer factor into the deductible and I have a
My BCBS coverage through my employer was changed at the new year. Someone decided I was too expensive and changed how drugs were covered. They used to apply toward my deductible and then covered 100%. At the beginning of this year that changed. Drugs no longer factor into the deductible and I have a
Wewo01
in
MPN Voice
2 months ago
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis.
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis. To the Editor: Myelofibrosis is a Philadelphia-negative chronic myelo-proliferative-neoplasm (MPN) characterized by alteration of the JAK–STAT path-way, primarily through activating mutations in
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis. To the Editor: Myelofibrosis is a Philadelphia-negative chronic myelo-proliferative-neoplasm (MPN) characterized by alteration of the JAK–STAT path-way, primarily through activating mutations in
PhysAssist
in
MPN Voice
2 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Just wanted to share my Primary Myelofibrosis journey so far…….
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
LFCLove
in
MPN Voice
2 months ago
Scientists devise novel strategy to seek and destroy leukemia stem cells
** Scientists at City of Hope, one of the largest cancer research and treatment organizations in the United States, have devised an innovative approach to target and destroy hard-to-kill leukemia stem cells. The journal Blood has published the preclinical findings. By overcoming challenges, such as
** Scientists at City of Hope, one of the largest cancer research and treatment organizations in the United States, have devised an innovative approach to target and destroy hard-to-kill leukemia stem cells. The journal Blood has published the preclinical findings. By overcoming challenges, such as
PhysAssist
in
MPN Voice
2 months ago
BESREMi now recommended as a Preferred First-line Cytoreductive Therapy for PV in Updated NCCN Clinical Practice Guidelines in Oncology
« The National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology (NCCN Guidelines®) have recently been updated to include ropeginterferon alfa-2b-njft, marketed as BESREMi®, as a preferred first-line cytoreductive therapy option for the treatment of adults with symptomatic, low-risk
« The National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology (NCCN Guidelines®) have recently been updated to include ropeginterferon alfa-2b-njft, marketed as BESREMi®, as a preferred first-line cytoreductive therapy option for the treatment of adults with symptomatic, low-risk
Manouche
in
MPN Voice
2 months ago
HU and Osteoblasts
Hi Group, I have ET Jak2 + and am 64yrs old My bone mass has been declining faster than I would have expected given my level of activity, genetic history and diet. I have seen some information that HU affects the production of osteoblasts as well. My info is from a quick read of Hydroxyurea Induces
Hi Group, I have ET Jak2 + and am 64yrs old My bone mass has been declining faster than I would have expected given my level of activity, genetic history and diet. I have seen some information that HU affects the production of osteoblasts as well. My info is from a quick read of Hydroxyurea Induces
nightshadow
in
MPN Voice
2 months ago
Best treatment for Post PV/MF ?
I'm wondering Which medication is more effective for post pv/mf. Ruxolitinib or interferon? I was diagnosed with pv in 2017. 2 years of hydroxy, then ruxolitinib at 20mg a day. A bmb in december showed progression to mf. Grade 2 fibrosis. The rux has recently been increased to 30mg a day along with
I'm wondering Which medication is more effective for post pv/mf. Ruxolitinib or interferon? I was diagnosed with pv in 2017. 2 years of hydroxy, then ruxolitinib at 20mg a day. A bmb in december showed progression to mf. Grade 2 fibrosis. The rux has recently been increased to 30mg a day along with
MCW22
in
MPN Voice
2 months ago
Anyone with CLL and Myelodysplasia
Anyone with CLL and Myelodysplasia? A month ago I was diagnosed with Myelodysplasia after undergoing a biopsy when I was at the end of the Venetoclax treatment.
Anyone with CLL and Myelodysplasia? A month ago I was diagnosed with Myelodysplasia after undergoing a biopsy when I was at the end of the Venetoclax treatment.
Priss69
in
CLL Support
2 months ago
Transplant Route
Hi everyone. I was diagnosed with primary MF 9 years ago and have been relatively well managed on Ruxolitinib for most of that time. Recently however my platelets have been consistently low, 37, 56, 59 and about same now. My spleen has enlarged again and I have been put on a reduced dose of Ruxolitinib
Hi everyone. I was diagnosed with primary MF 9 years ago and have been relatively well managed on Ruxolitinib for most of that time. Recently however my platelets have been consistently low, 37, 56, 59 and about same now. My spleen has enlarged again and I have been put on a reduced dose of Ruxolitinib
Cazbolac
in
MPN Voice
3 months ago
We're closing this forum
After thorough consideration and evaluation, we want to inform you that Leukaemia Care's HealthUnlocked Online Forum Service will be closing on the 30th April 2024. Despite the closure of the HealthUnlocked forum, Leukaemia Care remains committed to supporting individuals affected by leukaemia through
After thorough consideration and evaluation, we want to inform you that Leukaemia Care's HealthUnlocked Online Forum Service will be closing on the 30th April 2024. Despite the closure of the HealthUnlocked forum, Leukaemia Care remains committed to supporting individuals affected by leukaemia through
NicoleLeukaemiaCare
Administrator
in
Leukaemia CARE
3 months ago
JAK2 Allele Frequency/Burden
I am a 69-year-old female and was diagnosed with polycythemia vera in November 2023. I have been taking hydroxyurea since the middle of November it has helped my numbers and my symptoms. I am seeing a very reputable oncologist/hematologist - there are no MPN specialist in my area. I am JAK-2 positive
I am a 69-year-old female and was diagnosed with polycythemia vera in November 2023. I have been taking hydroxyurea since the middle of November it has helped my numbers and my symptoms. I am seeing a very reputable oncologist/hematologist - there are no MPN specialist in my area. I am JAK-2 positive
FlannelPJs
in
MPN Voice
3 months ago
GVHD and skin dryness.
Unfortunately I have chronic graft versus host desiese of the skin and have controlled it with a steroid cream since my ASCT a year and a half ago. My only issue currently is that I find it hard to look after the skin on my hands and feet that are dry and chapped. I have used quite a few emoluments
Unfortunately I have chronic graft versus host desiese of the skin and have controlled it with a steroid cream since my ASCT a year and a half ago. My only issue currently is that I find it hard to look after the skin on my hands and feet that are dry and chapped. I have used quite a few emoluments
Kraskie1915
in
CLL Support
4 months ago
PV and AMD?
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
sbs_patient
in
MPN Voice
4 months ago
itchy skin
Hi all, I have this terrible itchy skin,mostly arms and legs,after any contact with water,apart from the swimming pool,strangely,and wondered if anyone could recommend a cream that would help. I take a high dose fexofenadine before water but it doesnt really help.I asked my GP,who prescribed a tube
Hi all, I have this terrible itchy skin,mostly arms and legs,after any contact with water,apart from the swimming pool,strangely,and wondered if anyone could recommend a cream that would help. I take a high dose fexofenadine before water but it doesnt really help.I asked my GP,who prescribed a tube
Nursey30
in
MPN Voice
4 months ago
Ruxolitinib is intolerant, what should I do
I started taking Ruxolitinib at the end of 2018, when I had a huge spleen, MF3, and was 31 years old. I have been taking this medication for 5 years now. Maybe it's because my situation is worse, because I've been feeling like I have PMF since 2012, but I wasn't diagnosed or intervened until 2017 when
I started taking Ruxolitinib at the end of 2018, when I had a huge spleen, MF3, and was 31 years old. I have been taking this medication for 5 years now. Maybe it's because my situation is worse, because I've been feeling like I have PMF since 2012, but I wasn't diagnosed or intervened until 2017 when
merlisa
in
MPN Voice
4 months ago
Just diagnosed with 4.0 cm aneurysm of ascending aorta and severe calcification
Hi Friends I cannot express how shocked and dismayed I am finding out that I have severe calcification of my aorta and a 4.0 cm aneurysm. I have read that the aneurysm can be monitored yearly with imaging but there is nothing that can be done for the calcification. In the past 3 years, I have had
Hi Friends I cannot express how shocked and dismayed I am finding out that I have severe calcification of my aorta and a 4.0 cm aneurysm. I have read that the aneurysm can be monitored yearly with imaging but there is nothing that can be done for the calcification. In the past 3 years, I have had
Wewo01
in
MPN Voice
4 months ago
New Treatment Guidelines to Chronic Lymphocytic Leukemia (CLL): Latest advances and emerging treatments.
The Leukemia & Lymphoma Society of Canada recently presented this webinar that I thought was well done and would be of interest to members of this group. To watch the recording of the presentation, follow this link: https://zoom.us/rec/share/n-rsSAwoRlbIj2t2a4IQyN4JKBRAkp1thAGueR0MWS6Vt7lgVFGXpglJ-GyzIyda.H_TslN1eLCB_bs-Y
The Leukemia & Lymphoma Society of Canada recently presented this webinar that I thought was well done and would be of interest to members of this group. To watch the recording of the presentation, follow this link: https://zoom.us/rec/share/n-rsSAwoRlbIj2t2a4IQyN4JKBRAkp1thAGueR0MWS6Vt7lgVFGXpglJ-GyzIyda.H_TslN1eLCB_bs-Y
Northland
in
CLL Support
5 months ago
Imetelstat Users?
Hi All, I have Myelofibrosis and have been taking Jakavi for about 3 years, and it has been pretty successful in suppressing my symptoms. Unfortunately my symptoms are slowly returning, my spleen has enlarged to 215mm and a bone marrow biopsy has shown that the fibrosis is now pretty advanced. I
Hi All, I have Myelofibrosis and have been taking Jakavi for about 3 years, and it has been pretty successful in suppressing my symptoms. Unfortunately my symptoms are slowly returning, my spleen has enlarged to 215mm and a bone marrow biopsy has shown that the fibrosis is now pretty advanced. I
TimGS
in
MPN Voice
5 months ago
cancer in blood 6 months after STC
Hi everyone, Goodness me a lot has happened in the 2 years since my last post. In April 2022, I was finally diagnosed with MF. It is my MPL gene that is defective. I was informed very soon thereafter that I was ‘high risk’ and was a suitable candidate for a SCT. I received the transplant in May this
Hi everyone, Goodness me a lot has happened in the 2 years since my last post. In April 2022, I was finally diagnosed with MF. It is my MPL gene that is defective. I was informed very soon thereafter that I was ‘high risk’ and was a suitable candidate for a SCT. I received the transplant in May this
PiperAlfie
in
CLL Support
5 months ago
1
2
3
...
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