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New to Essential Thrombocythemia
I am a 44yr old woman and was diagnosed in February 2020 with essential thrombocythemia even though my bone marrow test and bloodwork said otherwise and no sign of MPN per the pathology report. Due to my high platelets my dr has started to treat me with hydroxyurea 500mg once daily for ET. On my last
I am a 44yr old woman and was diagnosed in February 2020 with essential thrombocythemia even though my bone marrow test and bloodwork said otherwise and no sign of MPN per the pathology report. Due to my high platelets my dr has started to treat me with hydroxyurea 500mg once daily for ET. On my last
Beths3
in
MPN Voice
4 years ago
Phyllis George dies of polycythemia Vera at age 70
https://www.nkytribune.com/2020/05/phyllis-george-former-miss-america-and-first-lady-of-kentucky-dies-of-rare-blood-disease-at-age-70/ George was diagnosed with polycythemia vera, a rare blood cancer that was diagnosed 35 years ago
https://www.nkytribune.com/2020/05/phyllis-george-former-miss-america-and-first-lady-of-kentucky-dies-of-rare-blood-disease-at-age-70/ George was diagnosed with polycythemia vera, a rare blood cancer that was diagnosed 35 years ago
Manouche
in
MPN Voice
4 years ago
Herpes infection within the body,couses platelets to go down even on nplate?
Hi there. My wife is diagnosed with ITP 2 years ago,she is on nplate and has her ups and down with increasing and decreasing the dose to stay round 100, she never had any bleading even when the platelets were 3000. Every time she gets a herpes on her lips or nose her platelets dive down and she has to
Hi there. My wife is diagnosed with ITP 2 years ago,she is on nplate and has her ups and down with increasing and decreasing the dose to stay round 100, she never had any bleading even when the platelets were 3000. Every time she gets a herpes on her lips or nose her platelets dive down and she has to
Jon1
in
ITP Support Association
4 years ago
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Hi my story starts 2 yrs ago when I was diagnosed with an aggressive leukaemia for which I needed a stem cell transplant to survive,a year after transplant it was found that my thyroid had stopped working due to effects of chemotherapy,not sure if damage is permanent but the last year has been nearly
Hi my story starts 2 yrs ago when I was diagnosed with an aggressive leukaemia for which I needed a stem cell transplant to survive,a year after transplant it was found that my thyroid had stopped working due to effects of chemotherapy,not sure if damage is permanent but the last year has been nearly
Bate
in
Thyroid UK
4 years ago
Shielding, update
I'm JAK2+ PV under control... I got my letter 5 weeks ago and have been staying in besides walking my dog in remote fields etc, keeping well away from humans. This morning I decided to write to my consultant asking for confirmation re shielding, this was his reply.. "No, according to our Departmental
I'm JAK2+ PV under control... I got my letter 5 weeks ago and have been staying in besides walking my dog in remote fields etc, keeping well away from humans. This morning I decided to write to my consultant asking for confirmation re shielding, this was his reply.. "No, according to our Departmental
shiftzz
in
MPN Voice
4 years ago
BMB (Bone Marrow Biopsy)
I had a series of blood tests over the course of 12 months between gp and then my referral into my local hospital haemotology department . As all tests turned up negative for mutations, while my platelets continued to stay up/increase Haemotologist explained BMB (Bone Marrow Biopsy) was necessary
I had a series of blood tests over the course of 12 months between gp and then my referral into my local hospital haemotology department . As all tests turned up negative for mutations, while my platelets continued to stay up/increase Haemotologist explained BMB (Bone Marrow Biopsy) was necessary
Woodlandgarden
in
MPN Voice
4 years ago
Ibutrinib plus venetoclax?
As I told you my brother is in the rump up with venetoclax. Now he is in 100 mg now. This month he start relapsing his treatment with imbruvica monotherapy. He was 18 months with very good results with imbruvica, but as I said his cll start relapsing. And his doctors consider add venetoclax. He put
As I told you my brother is in the rump up with venetoclax. Now he is in 100 mg now. This month he start relapsing his treatment with imbruvica monotherapy. He was 18 months with very good results with imbruvica, but as I said his cll start relapsing. And his doctors consider add venetoclax. He put
Cgr2018
in
CLL Support
4 years ago
Venetoclax, acalabrutnib, obitunzimab
Good morning all! Hope you are all doing well today. I’ve been reading a lot, but not posted much, so hear it goes! I have b en struggling with fatigue for years, I will not go through all the details of the past 6 years, but it’s been a ride, I only found out last year I have Cll, 11q del (although
Good morning all! Hope you are all doing well today. I’ve been reading a lot, but not posted much, so hear it goes! I have b en struggling with fatigue for years, I will not go through all the details of the past 6 years, but it’s been a ride, I only found out last year I have Cll, 11q del (although
Tton46
in
CLL Support
4 years ago
Unmutated patients on venetoclax?
I just watched the video "Evolving Front-Line Therapy in Chronic Lymphocytic Leukemia" posted by EugeneL2. In it, she refers to the trial where patients on venetoclax + obinutuzumab had much better results than those on chlorambucil + obinutuzumab. However, she also noted that mutated patients on both
I just watched the video "Evolving Front-Line Therapy in Chronic Lymphocytic Leukemia" posted by EugeneL2. In it, she refers to the trial where patients on venetoclax + obinutuzumab had much better results than those on chlorambucil + obinutuzumab. However, she also noted that mutated patients on both
HikerBiker
in
CLL Support
4 years ago
Lost my Haematologist to Covid19
I am so shocked and deeply saddened by the awful news that my consultant haematologist, Dr Tariq Shafi has been taken by Covid19. Coronavirus: 'Greatly respected and loved' hospital doctor dies https://www.bbc.co.uk/news/uk-england-kent-52578715 I have been with Dr Shafi for under 2 years but he has
I am so shocked and deeply saddened by the awful news that my consultant haematologist, Dr Tariq Shafi has been taken by Covid19. Coronavirus: 'Greatly respected and loved' hospital doctor dies https://www.bbc.co.uk/news/uk-england-kent-52578715 I have been with Dr Shafi for under 2 years but he has
MrDeanC
in
MPN Voice
4 years ago
Giant Cell Arteritis
Hi, can someone help with describing what the double vision element is with GCA? Most of the time my eye sight feels ok... except at certain distances say watching a game of football I see two copies of the player.. if I close one eye it’s ok! Also when driving I don’t necessarily see two cars as I wouldn
Hi, can someone help with describing what the double vision element is with GCA? Most of the time my eye sight feels ok... except at certain distances say watching a game of football I see two copies of the player.. if I close one eye it’s ok! Also when driving I don’t necessarily see two cars as I wouldn
Hidden
in
PMRGCAuk
4 years ago
How long does Neupogen effects like fever go away?
My brother had 3 shots of neopogen on Monday, Tuesday and Wednesday this week, and he has fever, no more than 38 for 3 days. He takes paracetamol and the fever get away for hours, but cone back. How long that’s usually take to go away the fever with Neupogen He hasn’t got another side effect, just a
My brother had 3 shots of neopogen on Monday, Tuesday and Wednesday this week, and he has fever, no more than 38 for 3 days. He takes paracetamol and the fever get away for hours, but cone back. How long that’s usually take to go away the fever with Neupogen He hasn’t got another side effect, just a
Cgr2018
in
CLL Support
4 years ago
Stem cell transplant anniversary
It is now exactly 12 months almost to the minute since I watched the bag of stem cells slowly drain into the Hickman line. It's been a very eventful 12 months to say the least. Since my last post 9 months ago I had a difficult end to 2019. I was hospitalised for pneumonia in October which turned out
It is now exactly 12 months almost to the minute since I watched the bag of stem cells slowly drain into the Hickman line. It's been a very eventful 12 months to say the least. Since my last post 9 months ago I had a difficult end to 2019. I was hospitalised for pneumonia in October which turned out
Dodders
in
MPN Voice
4 years ago
CAR-NK and using Interlukin-27 to boost the cytotoxic effect of NK cells on CLL in the bone marrow
[i]"A chimeric antigen receptor (CAR) construct using transduced natural killer cells instead of T cells was associated with a high complete remission rate without the cytokine release syndrome (CRS) frequently seen with CAR T cell therapy, early clinical trial results show.[/i] [i]:[/i] [i]..there were
[i]"A chimeric antigen receptor (CAR) construct using transduced natural killer cells instead of T cells was associated with a high complete remission rate without the cytokine release syndrome (CRS) frequently seen with CAR T cell therapy, early clinical trial results show.[/i] [i]:[/i] [i]..there were
AussieNeil
Partner
in
CLL Support
4 years ago
Thoughts on Covid
Or rather, what I’m watching out for! A vaccine is clearly not a short term solution. It appears likely there will be a vaccine but not a given. Hence world can’t wait in lockdown without destroying economies. Our best hopes for a quick return to the ‘new’ normal are therefore game changing therapeutics
Or rather, what I’m watching out for! A vaccine is clearly not a short term solution. It appears likely there will be a vaccine but not a given. Hence world can’t wait in lockdown without destroying economies. Our best hopes for a quick return to the ‘new’ normal are therefore game changing therapeutics
Paul123456
in
MPN Voice
4 years ago
SMALL THINGS, BIG DIFFERENCE
Small Things, Big Difference is a booklet bringing together a collection of carefully selected insights, practical tips and wisdom from members of the (CLL) community. Small things can make a big difference to the everyday lives of those living with CLL, from those recently diagnosed, to those who have
Small Things, Big Difference is a booklet bringing together a collection of carefully selected insights, practical tips and wisdom from members of the (CLL) community. Small things can make a big difference to the everyday lives of those living with CLL, from those recently diagnosed, to those who have
pkguk2
Administrator
in
CLL Support
4 years ago
Richter syndrome - Resonance result of the breast
Hello friends. I want to update my status. Yesterday they gave me the results of my breast tumors. They told me they were totally clean of cancer. I was diagnosed with two breast tumors after being treated with Ibrutinib for eight months. In August I have a consultation with the hematologist to control
Hello friends. I want to update my status. Yesterday they gave me the results of my breast tumors. They told me they were totally clean of cancer. I was diagnosed with two breast tumors after being treated with Ibrutinib for eight months. In August I have a consultation with the hematologist to control
Priss69
in
CLL Support
4 years ago
Myelofibrosis advice
Im new here.just one previous post.My bone marrow test results show after waiting 7 weks that i have primary myelofibrosis.I am upset that it is worse than I thought.I dont seem to be able to get any straight answers about life expectancy and really how I am going to be feeling and how soon. I have
Im new here.just one previous post.My bone marrow test results show after waiting 7 weks that i have primary myelofibrosis.I am upset that it is worse than I thought.I dont seem to be able to get any straight answers about life expectancy and really how I am going to be feeling and how soon. I have
caroline_284
in
MPN Voice
4 years ago
Has anyone suffered Gastro intestinal bleeding with ET. How high were their platelets?
I may have Gastro intestinal bleeding with Essential Thrombocythemia. I would like to see posts from friends on MPN Voice with their experience ofbthis
I may have Gastro intestinal bleeding with Essential Thrombocythemia. I would like to see posts from friends on MPN Voice with their experience ofbthis
azaelea
in
MPN Voice
4 years ago
Front-Runners Emerge in the Race for a Covid-19 Vaccine
Herd immunity via a vaccine that produces a good immune response is the best way forward for CLL and other immunocompromised patients all over the world. From WIRED Science Science 05.08.2020 Two leading candidates are headed for mass clinical trials, and everything’s on the table—including deliberately
Herd immunity via a vaccine that produces a good immune response is the best way forward for CLL and other immunocompromised patients all over the world. From WIRED Science Science 05.08.2020 Two leading candidates are headed for mass clinical trials, and everything’s on the table—including deliberately
Jm954
Administrator
in
CLL Support
4 years ago
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