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CALR Type 1 & 2 Have Contrasting OS Outcomes
Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I recently came across some very useful articles concerning the CALR mutations & ASXL1 and their ability to be included as Prognostically significant, and naturally wanted to share those findings hopefully to the benefit of others
Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I recently came across some very useful articles concerning the CALR mutations & ASXL1 and their ability to be included as Prognostically significant, and naturally wanted to share those findings hopefully to the benefit of others
socrates_8
in
MPN Voice
6 years ago
The History of BMT
BMTInfonet’s video on the history of bone marrow and stem cell transplant. I have always been aware of the Anthony Nolan registry but never knew just what a profound impact it had worldwide. https://www.bmtinfonet.org/transplant-article/what-blood-stem-cell-transplant
BMTInfonet’s video on the history of bone marrow and stem cell transplant. I have always been aware of the Anthony Nolan registry but never knew just what a profound impact it had worldwide. https://www.bmtinfonet.org/transplant-article/what-blood-stem-cell-transplant
MFBMT2011
in
MPN Voice
6 years ago
Myelofibrosis & Yransplant Symposium
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
MFBMT2011
in
MPN Voice
6 years ago
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Transplant Viability
I started showing visible signs of AMN when I was 21 and am currently experiencing a constant, stiff aching pain in my legs from mid thigh down. I was diagnosed last year and the amount of study into my condition by the various health care teams has been admirable. Before the disease started having a
I started showing visible signs of AMN when I was 21 and am currently experiencing a constant, stiff aching pain in my legs from mid thigh down. I was diagnosed last year and the amount of study into my condition by the various health care teams has been admirable. Before the disease started having a
Laird_Mac
in
AMN EASIER
6 years ago
Stem cell transplant?
Hi everyone, am glad to join this society of inspiring and strong people. I have been reading a lot of posts on here but no one seems to be talking about the only possible cure for this disease. So has anyone ever thought of having a transplant, especially for the little kids?
Hi everyone, am glad to join this society of inspiring and strong people. I have been reading a lot of posts on here but no one seems to be talking about the only possible cure for this disease. So has anyone ever thought of having a transplant, especially for the little kids?
Bellamie09
in
Sickle Cell Society
6 years ago
Hello from North Carolina USA
As of today, I have been officially diagnosed with ET following the results of my BMB and bloodwork. My name is Pam and I am a 62 year old woman who transplanted from Maine to North Carolina about two years ago -the weather is surely better here! My PCP originally suspected a problem when my platelets
As of today, I have been officially diagnosed with ET following the results of my BMB and bloodwork. My name is Pam and I am a 62 year old woman who transplanted from Maine to North Carolina about two years ago -the weather is surely better here! My PCP originally suspected a problem when my platelets
PamelaNC
in
MPN Voice
6 years ago
How do you know that you are in remission?
Hi, I had a stem cell transplant in feb 2016 which has been successful although I did suffer from very severe gut gvhd and to some extent skin gvhd which left me hospitalised at Kings for 5 months. I’ve been out of hospital for just over a year now and have been receiving chemo as a preventative measure
Hi, I had a stem cell transplant in feb 2016 which has been successful although I did suffer from very severe gut gvhd and to some extent skin gvhd which left me hospitalised at Kings for 5 months. I’ve been out of hospital for just over a year now and have been receiving chemo as a preventative measure
StarryRoo
in
Leukaemia Support
6 years ago
Symptoms masked
October, 2015 my husband, TJ fell off our front veranda dislocating & fracturing C6/C7. Was active plumber, civil engineer, blacksmith. 14 weeks in local hospital -underwent 2 operations, bone graft, screws, rods and cage- diagnosed with R frontal lobe traumatic brain injury. Transferred to rehab hospital
October, 2015 my husband, TJ fell off our front veranda dislocating & fracturing C6/C7. Was active plumber, civil engineer, blacksmith. 14 weeks in local hospital -underwent 2 operations, bone graft, screws, rods and cage- diagnosed with R frontal lobe traumatic brain injury. Transferred to rehab hospital
Caz49
in
PSP Association
7 years ago
CLL and Myeloma anyone?
I've had CLL with no treatment for 11 years but recently broke my collarbone and xray and CT scan revealed multiple myeloma. Treatment for myeloma started 4 days ago and the plan is to have stem cell transplant in 3-4 months. Anyone in the same boat and could stem cell transplant also help the CLL.
I've had CLL with no treatment for 11 years but recently broke my collarbone and xray and CT scan revealed multiple myeloma. Treatment for myeloma started 4 days ago and the plan is to have stem cell transplant in 3-4 months. Anyone in the same boat and could stem cell transplant also help the CLL.
Hidden
in
CLL Support
6 years ago
Jakafi scare - MPN Research Foundation reply
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional
Paul123456
in
MPN Voice
7 years ago
Stem Cell Transplant
I've just been watching the BBC new and they were talking about a relatively new treatment for MS that kills off your immune system with chemo and then transplants your own stem cells back in, re-booting your immune system. Can all autoimmune disease patients benefit from a stem cell transplant and would
I've just been watching the BBC new and they were talking about a relatively new treatment for MS that kills off your immune system with chemo and then transplants your own stem cells back in, re-booting your immune system. Can all autoimmune disease patients benefit from a stem cell transplant and would
AMDP
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Gamma globulin
Today I go for my monthly gamma globulin infusion I usually do well except I get very tired and at times nauseous. Anyone here gets these infusions? I have been on Imbruvica for 4 years with little side affects, but recently my wbc and lymphocytes are climbing and my platelets are dropping slowly. I
Today I go for my monthly gamma globulin infusion I usually do well except I get very tired and at times nauseous. Anyone here gets these infusions? I have been on Imbruvica for 4 years with little side affects, but recently my wbc and lymphocytes are climbing and my platelets are dropping slowly. I
MartiP2009
in
CLL Support
7 years ago
Outcomes of haploidentical stem cell transplantation for chronic lymphocytic leukemia: a retrospective study
[i]An allogeneic haemopoietic stem cell (HPC) transplant involves matching a patient’s tissue type, specifically their human leukocyte antigen (HLA) tissue type, with that of a related or unrelated donor. HLA proteins are found on all cells of our body and are the main way the immune system tells the
[i]An allogeneic haemopoietic stem cell (HPC) transplant involves matching a patient’s tissue type, specifically their human leukocyte antigen (HLA) tissue type, with that of a related or unrelated donor. HLA proteins are found on all cells of our body and are the main way the immune system tells the
Cllcanada
Top Poster CURE Hero
in
CLL Support
7 years ago
Thoughts on PV/ET
There are a lot of new posters here (I’ve been here 3 months and feel like an old hand!) who are understandably nervous and worried. The dreaded cancer word and for many of us, our first real brush with our own mortality. However, there are two really important factors we need to focus on. PV and especially
There are a lot of new posters here (I’ve been here 3 months and feel like an old hand!) who are understandably nervous and worried. The dreaded cancer word and for many of us, our first real brush with our own mortality. However, there are two really important factors we need to focus on. PV and especially
Paul123456
in
MPN Voice
7 years ago
stem cell transplantation
Did anyone try stem cell transplantation?
Did anyone try stem cell transplantation?
Anne_08
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Back to the Middle ages
Earth is flat or bone marrow transplant. Sad stories.
Earth is flat or bone marrow transplant. Sad stories.
nikolahn
in
AMN EASIER
7 years ago
Newly diagnosed – ET Jak2+ with added drama!
Hi everyone! I've been wanting to post here for some time, but it's taken me a couple of months to get a diagnosis and it's been a bit of a rollercoaster! Back in September 2017 I went to the doctor with weight loss and fatigue. Blood tests came back "normal" but a scan revealed I had a very enlarged
Hi everyone! I've been wanting to post here for some time, but it's taken me a couple of months to get a diagnosis and it's been a bit of a rollercoaster! Back in September 2017 I went to the doctor with weight loss and fatigue. Blood tests came back "normal" but a scan revealed I had a very enlarged
Timjonze
in
MPN Voice
7 years ago
Numbness and tingling after wrist fusion surgery
I’m nearly 2 weeks post op after having a wrist fusion and existing metal work in my hand moved about. The day after the first surgery I had no feeling or movement in my thumb, index or middle finger… so was then taken back down to theatre for carpel tunnel syndrome surgery. Was a definite improvement
I’m nearly 2 weeks post op after having a wrist fusion and existing metal work in my hand moved about. The day after the first surgery I had no feeling or movement in my thumb, index or middle finger… so was then taken back down to theatre for carpel tunnel syndrome surgery. Was a definite improvement
Sjmjep
in
NRAS
7 years ago
Advice for veno-occlusive/sinosoidal obstruction disease
Hi everyone, I’m new here. I’m 30 years old and I started having right upper abdomen pain about 18 months ago. To cut a very long story short I have now had a tentative diagnosis of VOD/SOD following many scans and liver biopsy. I am in pain every day but my LFTs are all normal and I don’t have ascites
Hi everyone, I’m new here. I’m 30 years old and I started having right upper abdomen pain about 18 months ago. To cut a very long story short I have now had a tentative diagnosis of VOD/SOD following many scans and liver biopsy. I am in pain every day but my LFTs are all normal and I don’t have ascites
Beedee87
in
British Liver Trust
7 years ago
Hilarious
Hi I been under the microscope again liver results are fine so I am happy,. But I have been diagnosed with severe anaemia (explains why I am knackered constantly) anyway they are now trying to figure out the cause of this and consistent low RBC, WBC and platelets there have been talk of bone marrow transplant
Hi I been under the microscope again liver results are fine so I am happy,. But I have been diagnosed with severe anaemia (explains why I am knackered constantly) anyway they are now trying to figure out the cause of this and consistent low RBC, WBC and platelets there have been talk of bone marrow transplant
jojokarak
in
British Liver Trust
7 years ago
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