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I have 3 sons who have just been diagnosed with ALD
The youngest 2 will be having bone marrow transplants. Was wondering what peoples experiences were. Also my eldest is in an arrested state at present, but due to his LOES score being 14 and already having suffered nerve damage there is nothing the doctors will do when it starts progressing again. Was
The youngest 2 will be having bone marrow transplants. Was wondering what peoples experiences were. Also my eldest is in an arrested state at present, but due to his LOES score being 14 and already having suffered nerve damage there is nothing the doctors will do when it starts progressing again. Was
littlelegs2
in
Leukodystrophy Support
11 years ago
W7R2: For my colleague who died on Wednesday
So my close colleague for 13 years died on Wednesday after a failed stem cell transplant. (We are both doctors) He was planning to be back at work in March after a week in ICU and recovery. In fact he had 3 months in ICU then 2 weeks on a normal ward then his last 3 days ventilated in ICU. What a shitty
So my close colleague for 13 years died on Wednesday after a failed stem cell transplant. (We are both doctors) He was planning to be back at work in March after a week in ICU and recovery. In fact he had 3 months in ICU then 2 weeks on a normal ward then his last 3 days ventilated in ICU. What a shitty
PhilippaB
Graduate
in
Couch to 5K
11 years ago
Can you have sickle cell crisis when you're just a sickle cell carrier?
Hello, my name is Dorothee, I am french. My daughter is called Clara, She is 10 years old, Her father is African (Gambia), but has hardly ever been there in her life. We live in Portsmouth and lived in France before. Clara grew "very quickly" recently, she is even more developed than some of the pupils
Hello, my name is Dorothee, I am french. My daughter is called Clara, She is 10 years old, Her father is African (Gambia), but has hardly ever been there in her life. We live in Portsmouth and lived in France before. Clara grew "very quickly" recently, she is even more developed than some of the pupils
Dottie62930
in
Sickle Cell Society
12 years ago
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Richter's in a Nut Shell
'Richter's transformation, or Richter's syndrome, is an uncommon clinicopathological condition observed in about 5% to 10% of patients with chronic lymphocytic leukemia (CLL). "Richter's transformation" refers to the development of aggressive lymphoma during the course of CLL. Diffuse large B-cell lymphoma
'Richter's transformation, or Richter's syndrome, is an uncommon clinicopathological condition observed in about 5% to 10% of patients with chronic lymphocytic leukemia (CLL). "Richter's transformation" refers to the development of aggressive lymphoma during the course of CLL. Diffuse large B-cell lymphoma
Cllcanada
Top Poster CURE Hero
in
CLL Support
12 years ago
EBMT Transplant Patient and Family Day
EBMT – European Group for Blood and Marrow Transplantation will be holding a patient and family day on Saturday 6th April 2013 from 9.30 am – 6 pm in The Mermaid Theatre, Puddle Dock, Blackfriars, London, EC4V 3DB, registration fee is £10 per person. What the day is about On the day you will
EBMT – European Group for Blood and Marrow Transplantation will be holding a patient and family day on Saturday 6th April 2013 from 9.30 am – 6 pm in The Mermaid Theatre, Puddle Dock, Blackfriars, London, EC4V 3DB, registration fee is £10 per person. What the day is about On the day you will
Mazcd
MPNVoice
in
MPN Voice
12 years ago
Brilliant News
Hi everyone, I just wanted to update you all about some brilliant news I received on Friday... I was transferred to The Christie a couple of weeks ago once I had finished my IVF treatment with the plan being to have my transplant there and my new consultant did a re test of my bone marrow and it turns
Hi everyone, I just wanted to update you all about some brilliant news I received on Friday... I was transferred to The Christie a couple of weeks ago once I had finished my IVF treatment with the plan being to have my transplant there and my new consultant did a re test of my bone marrow and it turns
Jennie_Barnes
in
MPN Voice
12 years ago
New-latest- updated-exercise-guidelines-for-cancer-survivors
Survivors may soon get their very own exercise prescription, following new guidelines presented today at the American Society of Clinical Oncology's annual meeting. Scientific evidence about cancer and exercise has grown greatly in the past few decades, as has the number of cancer survivors, which has
Survivors may soon get their very own exercise prescription, following new guidelines presented today at the American Society of Clinical Oncology's annual meeting. Scientific evidence about cancer and exercise has grown greatly in the past few decades, as has the number of cancer survivors, which has
Robertlowe
in
The Roy Castle Lung Cancer Foundation
12 years ago
New clinical trial planned in Giant Cell Arteritis (GCA)
Pharma company Roche are planning a clinical trial of tocilizumab (TCZ) with GCA to start in a few months time. TCZ has been trialled with success in the treatment of RA (rheumatoid arthritis). The objective of the GCA trial is to gather data on whether using TCZ alongside pred can enable the patient
Pharma company Roche are planning a clinical trial of tocilizumab (TCZ) with GCA to start in a few months time. TCZ has been trialled with success in the treatment of RA (rheumatoid arthritis). The objective of the GCA trial is to gather data on whether using TCZ alongside pred can enable the patient
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
12 years ago
talking
Well i have had my first chat with a councellor so thought i would share, she was a very nice lady and sadly our chat was very brief but i felt it helped shift some weight as i will put it. Not to confuse this is not the councellor i am scheduled to see in a few weeks this is my sons diabetic physcologist
Well i have had my first chat with a councellor so thought i would share, she was a very nice lady and sadly our chat was very brief but i felt it helped shift some weight as i will put it. Not to confuse this is not the councellor i am scheduled to see in a few weeks this is my sons diabetic physcologist
Hidden
in
Anxiety Support
12 years ago
Has anyone here had bone marrow transplant for lupus?
fragorosvar
in
LUPUS UK
12 years ago
Big Brother (or is that Big Pharma?) strikes again
This morning I checked my supply of my winter standby of Echinacea, and decided it was time to buy some more. To my horror the price from my usual supplier has rocketed, so I checked other sites only to discover that the same high prices applied, and on none of the sites was it now called straightforward
This morning I checked my supply of my winter standby of Echinacea, and decided it was time to buy some more. To my horror the price from my usual supplier has rocketed, so I checked other sites only to discover that the same high prices applied, and on none of the sites was it now called straightforward
Hidden
Administrator
in
Thyroid UK
12 years ago
Happy birthday to me
The day after my 51st birthday, I was diagnosed with PD. I received the dx. during my lunch break. My profession is one I loved deeply and felt so proud to be-a Registered Nurse specializing in Oncology/Bone Marrow Transplant. I hadn't been feeling well-tired, anxious-little shaky-my handwriting was
The day after my 51st birthday, I was diagnosed with PD. I received the dx. during my lunch break. My profession is one I loved deeply and felt so proud to be-a Registered Nurse specializing in Oncology/Bone Marrow Transplant. I hadn't been feeling well-tired, anxious-little shaky-my handwriting was
sulka
in
Cure Parkinson's
12 years ago
People experiences.
Sharing your stories does help others, the heterogeneous nature of CLL means we are likely to experience our own version of the disease and will handle it in our own way. But I remember when first reading other's experiences how much these helped me. This year Christmas feels whole for me for the
Sharing your stories does help others, the heterogeneous nature of CLL means we are likely to experience our own version of the disease and will handle it in our own way. But I remember when first reading other's experiences how much these helped me. This year Christmas feels whole for me for the
HAIRBEAR_UK
Administrator
in
CLL Support
12 years ago
So what is a Neutropenic Diet? Why should we follow it post treatment?
For people with severely compromised immune systems, food can be a source of infection when pathogens can enter the body, multiply and cause opportunistic infections. These infections are much more serious for people who have lower-than-normal neutrophil counts, such as people receiving treatment for
For people with severely compromised immune systems, food can be a source of infection when pathogens can enter the body, multiply and cause opportunistic infections. These infections are much more serious for people who have lower-than-normal neutrophil counts, such as people receiving treatment for
Cllcanada
Top Poster CURE Hero
in
CLL Support
12 years ago
Is there anyone who'se had a stem cell transplant prepared to help me?
I'm due to have a stem cell transplant very soon as part of a clinical trial. I've got lots of technical info but I'd like to talk informally about the procedure & living with immuno-suppresents afterwards. Any takers? Talking to a doctor over a cup of tea might help but they're not willing to do so
I'm due to have a stem cell transplant very soon as part of a clinical trial. I've got lots of technical info but I'd like to talk informally about the procedure & living with immuno-suppresents afterwards. Any takers? Talking to a doctor over a cup of tea might help but they're not willing to do so
honeycombe3
in
Cure Parkinson's
12 years ago
Blood
Hello guys an update for u all. As u all know I have been feeling pretty crap for a few months now (since June), after having a number of blood transfusions & 2 bone marrow tests done, I have been given a confirmed diagnosis. I saw the consultant today (along with my hubby), who has confirmed
Hello guys an update for u all. As u all know I have been feeling pretty crap for a few months now (since June), after having a number of blood transfusions & 2 bone marrow tests done, I have been given a confirmed diagnosis. I saw the consultant today (along with my hubby), who has confirmed
alyj
in
LUPUS UK
12 years ago
Another new finding !
Key Player in Parkinson's Disease Neuron Loss Pinpointed ScienceDaily (Oct. 19, 2012) — By reprogramming skin cells from Parkinson's disease patients with a known genetic mutation, researchers at the Salk Institute for Biological jjStudies have identified damage to neural stem cells as a powerful player
Key Player in Parkinson's Disease Neuron Loss Pinpointed ScienceDaily (Oct. 19, 2012) — By reprogramming skin cells from Parkinson's disease patients with a known genetic mutation, researchers at the Salk Institute for Biological jjStudies have identified damage to neural stem cells as a powerful player
Hidden
in
Cure Parkinson's
12 years ago
Mylofibrosis
Hi everyone. Three weeks ago my husband diagnosed with mylofibrosis after PRV for six years. However his marrow sample was sent to another hospital for checking and we were told yesterday that the other hospital have said it is accellerated PRV so that is his diagnosis. We were told that he is in the
Hi everyone. Three weeks ago my husband diagnosed with mylofibrosis after PRV for six years. However his marrow sample was sent to another hospital for checking and we were told yesterday that the other hospital have said it is accellerated PRV so that is his diagnosis. We were told that he is in the
tissi
in
MPN Voice
12 years ago
Please help PMRGCAuk raise money for GCA research!
Hi. This forum is free, free, free and always will be. However, PMRGCAuk is run on a shoestring and our shoestring is wearing a bit thin! We desperately need money to help us continue our work. This month, Jennifer from the East Anglia support group and I are doing the Carrots Night Walk around
Hi. This forum is free, free, free and always will be. However, PMRGCAuk is run on a shoestring and our shoestring is wearing a bit thin! We desperately need money to help us continue our work. This month, Jennifer from the East Anglia support group and I are doing the Carrots Night Walk around
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
12 years ago
MF BMT (SCT) Transplant Survivor
Hi, I was diagnosed with MF in 2010 and had a Stem Cell Transplant in March 2011, I live just outside London. I do buddying for MPDVoice and have just taken one buddy through transplant and have two more heading that way. Thanks to the internet I have MF-BMT friends around the globe at varying stages
Hi, I was diagnosed with MF in 2010 and had a Stem Cell Transplant in March 2011, I live just outside London. I do buddying for MPDVoice and have just taken one buddy through transplant and have two more heading that way. Thanks to the internet I have MF-BMT friends around the globe at varying stages
MFBMT2011
in
MPN Voice
12 years ago
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