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MPN RESEARCH FOUNDATION LAUNCHES STEM CELL TRANSPLANT TIMING TOOL FOR MPN PATIENTS WITH MF
A new tool to improve stem cell transplant outcomes was announced today by the MPN Research Foundation (MPNRF). The SCT Spectrum Transplant Timing tool (SSTT) was created to facilitate communication between myelofibrosis patients and their physicians. The SSTT is a portable on-line tool based on a
A new tool to improve stem cell transplant outcomes was announced today by the MPN Research Foundation (MPNRF). The SCT Spectrum Transplant Timing tool (SSTT) was created to facilitate communication between myelofibrosis patients and their physicians. The SSTT is a portable on-line tool based on a
Mazcd
MPNVoice
in
MPN Voice
6 years ago
Mirena coil: allergic reaction
Wanted to post on here to make people aware that despite the low incident rate of 1 in 100 patients having an allergic reaction to the Mirena IUS, it does happen. I had just had one! Here's a quick description of me & my symptoms so people can note what an allergic reaction to Mirena hormonal coil looks
Wanted to post on here to make people aware that despite the low incident rate of 1 in 100 patients having an allergic reaction to the Mirena IUS, it does happen. I had just had one! Here's a quick description of me & my symptoms so people can note what an allergic reaction to Mirena hormonal coil looks
Bobo77
in
BASHH
6 years ago
Getting there,!!
Almost 9 months since my stem cell transplant tho still breathless getting stronger and being more positive daily,!!
Almost 9 months since my stem cell transplant tho still breathless getting stronger and being more positive daily,!!
Topteam
in
Leukaemia Support
6 years ago
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Aml.
In 2014 I was diagnosed with aml was lucky enough to go into remission after two cycles of chemo but still needed bone marrow transplant which I had in the August 2014.after few set backs mainly with gvhd of the skin things are going well .
In 2014 I was diagnosed with aml was lucky enough to go into remission after two cycles of chemo but still needed bone marrow transplant which I had in the August 2014.after few set backs mainly with gvhd of the skin things are going well .
Islay55
in
Leukaemia Support
6 years ago
Remicade made things worse for anyone?
Hi. I am new to this forum, but not new to Behcets. My question is, have any of you gotten worse after Remade infusions? Long story short, I was diagnosed about 10 yrs ago. Symptoms at the time of diagnosis were really bad wrist and ankle pain, superficial blood clot in arm, mouth ulcers and blurred
Hi. I am new to this forum, but not new to Behcets. My question is, have any of you gotten worse after Remade infusions? Long story short, I was diagnosed about 10 yrs ago. Symptoms at the time of diagnosis were really bad wrist and ankle pain, superficial blood clot in arm, mouth ulcers and blurred
amtrose
in
Behçet's UK
6 years ago
Stem Cell Transplants
https://mpnforum.com/nicrev Hope this link works. Interesting interview about Stem Cell Transplant risk:reward and timing. I thought quite reassuring, especially since odds improving all the time. Five year survival rates are based on transplants pre 2013. The odds and risks should be even better by
https://mpnforum.com/nicrev Hope this link works. Interesting interview about Stem Cell Transplant risk:reward and timing. I thought quite reassuring, especially since odds improving all the time. Five year survival rates are based on transplants pre 2013. The odds and risks should be even better by
Paul123456
in
MPN Voice
6 years ago
Possible new diagnosis, thoughts?
Hi everyone, First time posting but I was hoping to get some thoughts from those that have been suffering from this terrible illness for awhile. I am currently in medical school and am studying for one of the biggest exams we have, i.e lots of stress going on. Anyways, a week ago, I noticed I had a
Hi everyone, First time posting but I was hoping to get some thoughts from those that have been suffering from this terrible illness for awhile. I am currently in medical school and am studying for one of the biggest exams we have, i.e lots of stress going on. Anyways, a week ago, I noticed I had a
rcamos
in
Behçet's UK
6 years ago
Roof of mouth
Hi. I was wondering if anyone has had a roof of mouth that is extremely painful. It feel like it’s blistered from a burn but I can’t see any obvious signs of ulcers. I have other ulcers in my mouth right now, but palate feels like someone has beaten it over and over and then set on fire. Eating is out
Hi. I was wondering if anyone has had a roof of mouth that is extremely painful. It feel like it’s blistered from a burn but I can’t see any obvious signs of ulcers. I have other ulcers in my mouth right now, but palate feels like someone has beaten it over and over and then set on fire. Eating is out
Lovingdragonflies
in
Behçet's UK
6 years ago
Waking after neurotoxicity
My dad suffered from neurotoxicity, pneumonia, and a fungal infection after Stem Cell Transplant. He had a unexpected and terrible reaction to anti-rejection medications and has been in a coma/ICU for 6 weeks. He recently emerged from coma is very weak and is still not able to speak or utter any sound
My dad suffered from neurotoxicity, pneumonia, and a fungal infection after Stem Cell Transplant. He had a unexpected and terrible reaction to anti-rejection medications and has been in a coma/ICU for 6 weeks. He recently emerged from coma is very weak and is still not able to speak or utter any sound
skatergirl
in
ICUsteps
6 years ago
Interesting Question for the Psychiatrists and Geneticists Out There
I have always wanted to ask these two closely related questions; especially since my Psychiatrist told me that he had never heard of any situation even remotely close to mine and/or of any studies related at all to it. I am now a 54-year-old man with ADD. My symptoms are mainly "tactile" and "attention
I have always wanted to ask these two closely related questions; especially since my Psychiatrist told me that he had never heard of any situation even remotely close to mine and/or of any studies related at all to it. I am now a 54-year-old man with ADD. My symptoms are mainly "tactile" and "attention
strawbjt
in
CHADD's Adult ADHD Support
6 years ago
Cold Sores
Hi , Has anyone had a cold sore in the eye. Very painful. Lasts about a week. Take painkillers and zovirax . Have been occurring for past 6 years . Wondering what brings it on. Diagnosed pbc -aih 9 years go
Hi , Has anyone had a cold sore in the eye. Very painful. Lasts about a week. Take painkillers and zovirax . Have been occurring for past 6 years . Wondering what brings it on. Diagnosed pbc -aih 9 years go
chasper
in
PBC Foundation
6 years ago
10 years ago today I received my allogeneic hematopoietic stem cell transplant (HSCT) for my CLL
Hi, I just posted a very brief blog update on my 10 year anniversary of my first radical move to save my life. You can read it about here: https://cllsociety.org/2018/07/10-years-ago-today-i-received-my-allogeneic-hematopoietic-stem-cell-transplant-hsct-for-my-cll-chronic-lymphocytic-leukemia/ Since
Hi, I just posted a very brief blog update on my 10 year anniversary of my first radical move to save my life. You can read it about here: https://cllsociety.org/2018/07/10-years-ago-today-i-received-my-allogeneic-hematopoietic-stem-cell-transplant-hsct-for-my-cll-chronic-lymphocytic-leukemia/ Since
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
Hello
Iv found a doctor that seems to listen that I'm in pain wish is better for a change now iv been put on naproxen I really hope this work me as fed up of trying lots of different meds the only thing I was up set with she said I may have to try a the intrauterine system ius as already try the pill and
Iv found a doctor that seems to listen that I'm in pain wish is better for a change now iv been put on naproxen I really hope this work me as fed up of trying lots of different meds the only thing I was up set with she said I may have to try a the intrauterine system ius as already try the pill and
Alarna
in
Endometriosis UK
6 years ago
Mouth Sores from Pegasys
Any suggestions for treating mouth sores? I have been taking Pegasys since November, and recently started getting mouth sores. It seems to occur weekly, and lasts for about 3 days, then resolves on its own. Thank you for any advice on how to manage the days when it flares up.
Any suggestions for treating mouth sores? I have been taking Pegasys since November, and recently started getting mouth sores. It seems to occur weekly, and lasts for about 3 days, then resolves on its own. Thank you for any advice on how to manage the days when it flares up.
clevemic
in
MPN Voice
6 years ago
left shoulder hurting again
been on pred since oct 2016, 40 to start, then tapered well to 10 up til august 2017, rheu my wanted to keep me at that dose of 10 until into new year 2018, as my son who was diagnosed with multiple myeloma was having stem cell transplant in jan 2018, she said with the additional stress, did not want
been on pred since oct 2016, 40 to start, then tapered well to 10 up til august 2017, rheu my wanted to keep me at that dose of 10 until into new year 2018, as my son who was diagnosed with multiple myeloma was having stem cell transplant in jan 2018, she said with the additional stress, did not want
arvine
in
PMRGCAuk
6 years ago
Medication I have found successful
Hello Everyone, I am writing this post as I have finally found a combination of medications which has allowed me to control my BD with some regularity. I will provide a brief description of my BD history, medications I have tried, and also provide the names of the medications which finally helped. I
Hello Everyone, I am writing this post as I have finally found a combination of medications which has allowed me to control my BD with some regularity. I will provide a brief description of my BD history, medications I have tried, and also provide the names of the medications which finally helped. I
JulienF
in
Behçet's UK
6 years ago
I feel sad and alone
Hello, It has been about a year since I posted here for the first time and this is the second time. I have COPD from the complication called GVHD from my stem cell transplant for my lukimia. It has been getting worse and I was in hospital a few times last year and twice already this year. Last year I
Hello, It has been about a year since I posted here for the first time and this is the second time. I have COPD from the complication called GVHD from my stem cell transplant for my lukimia. It has been getting worse and I was in hospital a few times last year and twice already this year. Last year I
mnonchan
in
Lung Conditions Community Forum
6 years ago
Dovetailing
Wow getting red hair to warn bad news to stay away is certainly working. Saw osteo surgeon again today regarding the initial hip pain and looked at all scan and MRI results. Seeing as I had a bone marrow transplant and radiation 27 years ago, which made me post menopausal, I have really good bones for
Wow getting red hair to warn bad news to stay away is certainly working. Saw osteo surgeon again today regarding the initial hip pain and looked at all scan and MRI results. Seeing as I had a bone marrow transplant and radiation 27 years ago, which made me post menopausal, I have really good bones for
Angiejnz
in
PMRGCAuk
6 years ago
Breakthrough therapy saves Mike's life - reports of innovative precision medicines for cancers from ASCO in Daily Mail
One man to have already benefited from the advances in precision medicine is leukaemia sufferer Mike Brandon. The 34-year-old from Bristol was desperately ill when he underwent pioneering CAR T therapy in the US city of Philadelphia in 2016. Mike was suffering from chronic lymphocytic leukaemia (
One man to have already benefited from the advances in precision medicine is leukaemia sufferer Mike Brandon. The 34-year-old from Bristol was desperately ill when he underwent pioneering CAR T therapy in the US city of Philadelphia in 2016. Mike was suffering from chronic lymphocytic leukaemia (
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
Yay good bones
Because I had a bone marrow transplant in the 90's I have a density scan every 5 years and just had the latest done after being diagnosed with pmr. My back with compressed vertebrae and failed fusions has improved, with t score going from .7 to .8 and z score going from -0.1to 0.2, forearm score going
Because I had a bone marrow transplant in the 90's I have a density scan every 5 years and just had the latest done after being diagnosed with pmr. My back with compressed vertebrae and failed fusions has improved, with t score going from .7 to .8 and z score going from -0.1to 0.2, forearm score going
Angiejnz
in
PMRGCAuk
6 years ago
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