Search
Search
About
Log in
Join
Experiences with
Myelofibrosis
Posts
Communities
466 public posts
Filter results
Petachie
My partner, (having a difficult time since diagnosis this year) has. post ET
myelofibrosis
.
My partner, (having a difficult time since diagnosis this year) has. post ET
myelofibrosis
.
Goldfish212
in
MPN Voice
5 years ago
Clinical trial
I have
myelofibrosis
. I am on ruxolitinib at the moment but my platelets keeping dropping. My oncologist put me forward for a clinical trial I went to London talked the very nice Dr. He gave me 2 literature books to read regarding the trial. I really don't know what to do.
I have
myelofibrosis
. I am on ruxolitinib at the moment but my platelets keeping dropping. My oncologist put me forward for a clinical trial I went to London talked the very nice Dr. He gave me 2 literature books to read regarding the trial. I really don't know what to do.
Ven61
in
MPN Voice
5 years ago
Scientists develop possible strategy for cancer drug resistance
. :-) This is exactly the type of article that I believe holds much promise for preventing the Transition from
Myelofibrosis
to AML... The Reference below to the Full – Peer Reviewed – article. However, it still requires payment for complete access at this point.
. :-) This is exactly the type of article that I believe holds much promise for preventing the Transition from
Myelofibrosis
to AML... The Reference below to the Full – Peer Reviewed – article. However, it still requires payment for complete access at this point.
socrates_8
in
MPN Voice
5 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Myelofibrosis
I have stage two MF. 72 years old. Live in California. They want to put me on JAKAFI. Anybody else out there in my situation?
I have stage two MF. 72 years old. Live in California. They want to put me on JAKAFI. Anybody else out there in my situation?
Jerrymohler
in
MPN Voice
5 years ago
After 15 years of high platelets my platelets have suddenly dropped into normal range
Anybody with post ET/PV
myelofibrosis
can you tell me the first changes you noticed in your bloodwork. Were the changes fast or slow?
Anybody with post ET/PV
myelofibrosis
can you tell me the first changes you noticed in your bloodwork. Were the changes fast or slow?
clubdino
in
MPN Voice
5 years ago
NEW HOPE FOR AML...
For example, in
Myelofibrosis
, Ruxolitinib (Jakafi) is used to suppress the 'Proliferation' of our blood cells, and hopefully thereby create some improvement in Quality of Life (QoL), and maybe even add a few years to our longevity (?)
For example, in
Myelofibrosis
, Ruxolitinib (Jakafi) is used to suppress the 'Proliferation' of our blood cells, and hopefully thereby create some improvement in Quality of Life (QoL), and maybe even add a few years to our longevity (?)
socrates_8
in
MPN Voice
5 years ago
Worsening symptoms of myelofibrosis
Hi Can anyone tell me the worsening symptoms of myleofibrosis as I am very concerned about my partner who has post ET
myelofibrosis
and since diagnosis has become more and more tired.
Hi Can anyone tell me the worsening symptoms of myleofibrosis as I am very concerned about my partner who has post ET
myelofibrosis
and since diagnosis has become more and more tired.
Goldfish212
in
MPN Voice
5 years ago
Potential New MF Drug
CPI-0610 Demonstrates Activity in Patients With
After Ruxolitinib Failure Post by socrates_8 » Tue Aug 20, 2019 7:43 am Morning everyone, thought some of you might find this of interest.
CPI-0610 Demonstrates Activity in Patients With
After Ruxolitinib Failure Post by socrates_8 » Tue Aug 20, 2019 7:43 am Morning everyone, thought some of you might find this of interest.
socrates_8
in
MPN Voice
5 years ago
Any news,trials or progress on use of CAR T-cell therapy for Myelofibrosis or related conditions?
A true breakthrough in several diseases , especially cancers eg Leukemia. Costly ( $1m per treatment) but costs will decline . This is the use of your own (tweaked) immune suppression systems to fight cancers.( see TED Talks etc).
A true breakthrough in several diseases , especially cancers eg Leukemia. Costly ( $1m per treatment) but costs will decline . This is the use of your own (tweaked) immune suppression systems to fight cancers.( see TED Talks etc).
Innessant
in
MPN Voice
5 years ago
Myelofibrosis
Just wondering if anyone has a diagnosis of advanced or progressive post ET
myelofibrosis
. My partner was diagnosed a few months ago (ET diagnosed in 2016) with
myelofibrosis
. Since then he has been hospitalised with pneumonia and required potassium and a four units of blood.
Just wondering if anyone has a diagnosis of advanced or progressive post ET
myelofibrosis
. My partner was diagnosed a few months ago (ET diagnosed in 2016) with
myelofibrosis
. Since then he has been hospitalised with pneumonia and required potassium and a four units of blood.
Goldfish212
in
MPN Voice
5 years ago
Extreme fatigue
My partner has post ET
myelofibrosis
. (ET for 5 years, diagnosed with
myelofibrosis
in April this year) He was taking hydroxycarbamide (not sure if I have spelt this right) for his ET and was started on Rux for
myelofibrosis
. However he continues to need the hydro at the same time.
My partner has post ET
myelofibrosis
. (ET for 5 years, diagnosed with
myelofibrosis
in April this year) He was taking hydroxycarbamide (not sure if I have spelt this right) for his ET and was started on Rux for
myelofibrosis
. However he continues to need the hydro at the same time.
Goldfish212
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]
TL-895 is a highly potent, selective, orally available,
[/i][u][i]
covalent
[/i][/u][i]
inhibitor of Bruton tyrosine kinase (BTK) and bone marrow tyrosine kinase X-linked (BMX), under development for treatment of
and chronic lymphocytic leukemia."
[i]
TL-895 is a highly potent, selective, orally available,
[/i][u][i]
covalent
[/i][/u][i]
inhibitor of Bruton tyrosine kinase (BTK) and bone marrow tyrosine kinase X-linked (BMX), under development for treatment of
and chronic lymphocytic leukemia."
AussieNeil
Partner
in
CLL Support
5 years ago
Don't know what to think 😟
And then my second hematologist wrote in his report that he "spoke to me at length" about how my disease can turn into leukemia or
myelofibrosis
at any moment but that wasn't the truth he didn't speak to me at length.
And then my second hematologist wrote in his report that he "spoke to me at length" about how my disease can turn into leukemia or
myelofibrosis
at any moment but that wasn't the truth he didn't speak to me at length.
clubdino
in
MPN Voice
5 years ago
Tiredness
Hi have had
Myelofibrosis
for 10 years I don’t know anyone else who has this feel so tired my legs ache feel as if I have the flu all the time 😩thanks Diana
Hi have had
Myelofibrosis
for 10 years I don’t know anyone else who has this feel so tired my legs ache feel as if I have the flu all the time 😩thanks Diana
D1i2a3
in
MPN Voice
5 years ago
Blood results
Haematologist said my partner (post ET
myelofibrosis
) WBC's are 90 but she wants them down to 50 (he is on hydroxeacarbomide for this). His platelets are 60 (these were recently 29) and his haemoglobin is 98. He is also on Rux. What should 'normal' blood results be?
Haematologist said my partner (post ET
myelofibrosis
) WBC's are 90 but she wants them down to 50 (he is on hydroxeacarbomide for this). His platelets are 60 (these were recently 29) and his haemoglobin is 98. He is also on Rux. What should 'normal' blood results be?
Goldfish212
in
MPN Voice
5 years ago
Myelofibrosis and bloodshot eye
Has anyone with
Myelofibrosis
experienced blood in an eye? My husband has
Myelofibrosis
and woke up a couple of days ago with the outer part of the white his right eye blood-red. It had dissipated somewhat later the next day but now (day three) his whole eye is somewhat bloodshot.
Has anyone with
Myelofibrosis
experienced blood in an eye? My husband has
Myelofibrosis
and woke up a couple of days ago with the outer part of the white his right eye blood-red. It had dissipated somewhat later the next day but now (day three) his whole eye is somewhat bloodshot.
Fika500
in
MPN Voice
5 years ago
Pre Fibrotic Myelodibrosis
Apparently it may or may not develop into full
Myelofibrosis
. I have minimal symptoms. Apparently it is pretty rare.
Apparently it may or may not develop into full
Myelofibrosis
. I have minimal symptoms. Apparently it is pretty rare.
kiwitraveller
in
MPN Voice
5 years ago
Update after Haemo appointment.
She informed me that a definite diagnosis hadn't been made but it's certainly one of the MPN's and definitely not
Myelofibrosis
or Polycythemia and because it's Jak2+ that's what I'm being treated for.
She informed me that a definite diagnosis hadn't been made but it's certainly one of the MPN's and definitely not
Myelofibrosis
or Polycythemia and because it's Jak2+ that's what I'm being treated for.
azaelea
in
MPN Voice
5 years ago
ET since 2001, now anxious about changes in blood counts
My haematologist is switching me to Interferon, which I don't mind, but I'm feeling very anxious because he also suggested that my ET might be transforming to
Myelofibrosis
. He says it will take three months for the Interferon to work and then if necessary he will look at my bone marrow again.
My haematologist is switching me to Interferon, which I don't mind, but I'm feeling very anxious because he also suggested that my ET might be transforming to
Myelofibrosis
. He says it will take three months for the Interferon to work and then if necessary he will look at my bone marrow again.
Otterfield
in
MPN Voice
5 years ago
Prm-151 trial. Why so many patients you think discontinued therapy with prm-151 according to article?
https://www.ashclinicalnews.org/on-location/evaluating-prm-151-patients-
myelofibrosis
-resistant-intolerant-ruxolitinib/
https://www.ashclinicalnews.org/on-location/evaluating-prm-151-patients-
myelofibrosis
-resistant-intolerant-ruxolitinib/
Aneliv9
in
MPN Voice
5 years ago
1
...
14
15
16
...
24
Next page
10
20
Filter results
Clear filters
Posted in
All communities
MPN Voice
438 results
CLL Support
10 results
Fight MPN
7 results
View top 10 communities
Sort by
Most Relevant
Newest