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5th Anniversary
Hi Folks , , many of you will be aware of my Stem Cell Transplant for Primary Myelofibrosis which happened 5 years ago today. . It wasn't an easy ride in my case and my battle with Graft Versus Host Disease is well documented on the Forum. Also the issues caused by high dose steroids needed to save my
Hi Folks , , many of you will be aware of my Stem Cell Transplant for Primary Myelofibrosis which happened 5 years ago today. . It wasn't an easy ride in my case and my battle with Graft Versus Host Disease is well documented on the Forum. Also the issues caused by high dose steroids needed to save my
JediReject
in
MPN Voice
4 years ago
Occasional sore tongue
It seems my tongue and sometimes the roof of my mouth feel like I burnt myself with a hot beverage when that is not the case. Sometimes brushing the area with my tooth brush seems to help. I’ve tried all sorts of toothpaste formulations. In can vary during the day and from day to day. I avoid any toothpastes
It seems my tongue and sometimes the roof of my mouth feel like I burnt myself with a hot beverage when that is not the case. Sometimes brushing the area with my tooth brush seems to help. I’ve tried all sorts of toothpaste formulations. In can vary during the day and from day to day. I avoid any toothpastes
Karenjaninaz
in
PMRGCAuk
4 years ago
Omg how do some doctors get there degree
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
sbadd
in
Pernicious Anaemia Society
4 years ago
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Omg how do some doctors get a degree
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
sbadd
in
Thyroid UK
4 years ago
Welcome
Welcome all the new people who joined in the last few months, I appreciate you don’t want to be here but it is a good place to get help. We have heard from a few of you but it would be great to hear from all of you in new posts. It helps us by knowing how we can help you. Key items are: Which MPN?
Welcome all the new people who joined in the last few months, I appreciate you don’t want to be here but it is a good place to get help. We have heard from a few of you but it would be great to hear from all of you in new posts. It helps us by knowing how we can help you. Key items are: Which MPN?
MFBMT2011
in
MPN Voice
4 years ago
Mother with CMML2
Hi everyone, My mother had a heart attack on her birthday in August 2018... then shortly after was diagnosed with CMML2. Anyone on here have CMML2? She is not a candidate for Stem Cell transplant due to heart function being damaged from the heart attack, they feel she would not survive the host-graft
Hi everyone, My mother had a heart attack on her birthday in August 2018... then shortly after was diagnosed with CMML2. Anyone on here have CMML2? She is not a candidate for Stem Cell transplant due to heart function being damaged from the heart attack, they feel she would not survive the host-graft
ckurtz
in
Leukaemia Support
4 years ago
Hi, I'm 20 years old. I have sickle cell disorder. But what bothers me most is that my eyes is always yellow, and it makes me feel shy.
I try to always drink water but most times drinking water makes me feel nauseated. I don't know why?
I try to always drink water but most times drinking water makes me feel nauseated. I don't know why?
Claregie
in
Sickle Cell Society
4 years ago
MDS
Doctors found out its MDS for my father, so they want to control it with medicines similar to cemo and then will decide after 4 months for bone marrow transplant. I am just wondering we had this problem of low hemoglobin since his radiation 2.5 years but still hemotologist never realised this is the
Doctors found out its MDS for my father, so they want to control it with medicines similar to cemo and then will decide after 4 months for bone marrow transplant. I am just wondering we had this problem of low hemoglobin since his radiation 2.5 years but still hemotologist never realised this is the
Kshiprakapoor
in
Advanced Prostate Cancer
4 years ago
Anemia related to bone marrow
It's bone marrow problem as per doctors and test result, its been since radiation 3 yrs back and testicals removal, my father kept saying about hemoglobin declining but doctors never suggested bone marrow tests since then, it was gradually rising, it could have been easily cured. Now doctor said we got
It's bone marrow problem as per doctors and test result, its been since radiation 3 yrs back and testicals removal, my father kept saying about hemoglobin declining but doctors never suggested bone marrow tests since then, it was gradually rising, it could have been easily cured. Now doctor said we got
Kshiprakapoor
in
Advanced Prostate Cancer
4 years ago
Stem Cell Transplant
I heard this can cure PV. Why the he is this not legal in the USA?! Obviously I can't fly to Panama to get this done and can't afford it. I'm sick of being fatigued!
I heard this can cure PV. Why the he is this not legal in the USA?! Obviously I can't fly to Panama to get this done and can't afford it. I'm sick of being fatigued!
lebowski42
in
MPN Voice
4 years ago
New Kid on the Block
Hi,everyone,just joined the group and reading the posts really feel for those suffering with fatigue, something fortunately I have never had with P.M.R..I do however get flare ups with SEVERE pain mainly in the neck and shoulders.Difficult sometimes to know whether its P.M.R. or a trapped nerve or pulled
Hi,everyone,just joined the group and reading the posts really feel for those suffering with fatigue, something fortunately I have never had with P.M.R..I do however get flare ups with SEVERE pain mainly in the neck and shoulders.Difficult sometimes to know whether its P.M.R. or a trapped nerve or pulled
BeeDee1940
in
PMRGCAuk
4 years ago
Living with Chronic Neuropathic Pain
There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements mean percentage increases at any cost. It is sad that chronic pain patients are made to feel like drug addicts and treated in a most callous way.
There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements mean percentage increases at any cost. It is sad that chronic pain patients are made to feel like drug addicts and treated in a most callous way.
Hidden
in
Pain Concern
4 years ago
NHS rapid policy statement on Tocilizumab for GCA during the Covid-19 pandemic
Hello everyone, and I hope you are all staying safe ( and sane) in these scary times. Forgive me if someone has already brought this to people’s attention, but I only just came across this important statement put out by the NHS which most certainly affects me, and could affect other GCA sufferers who
Hello everyone, and I hope you are all staying safe ( and sane) in these scary times. Forgive me if someone has already brought this to people’s attention, but I only just came across this important statement put out by the NHS which most certainly affects me, and could affect other GCA sufferers who
Suzita76
in
PMRGCAuk
4 years ago
OVERCOMING GVHD AFTER ASCT
Post by MPN-MATE Admin » Thu Jul 16, 2020 9:56 am Morning all... :D For some of us here, (but hopefully not all...?), some may eventually have to travel down the path of having an Allogenic Stem Cell Transplant (ASCT), when and if it becomes necessary... ... If, and when that occurs, one of the known
Post by MPN-MATE Admin » Thu Jul 16, 2020 9:56 am Morning all... :D For some of us here, (but hopefully not all...?), some may eventually have to travel down the path of having an Allogenic Stem Cell Transplant (ASCT), when and if it becomes necessary... ... If, and when that occurs, one of the known
socrates_8
in
MPN Voice
4 years ago
The Salt Room ...
Hi Everyone, thought I would tell you about what has happened to me over the last couple of days. I have been travelling quite well on 6 mgs of pred and tocilizumab jabs weekly and some girlfriends invited me to come along with them to “The Salt Room”. It sounded fab, described as a cure for all sorts
Hi Everyone, thought I would tell you about what has happened to me over the last couple of days. I have been travelling quite well on 6 mgs of pred and tocilizumab jabs weekly and some girlfriends invited me to come along with them to “The Salt Room”. It sounded fab, described as a cure for all sorts
LemonZest11
in
PMRGCAuk
4 years ago
Why can't I be happy?!
I feel I need to apologise about my post before I even start, as I'm sure it will sound silly and ridiculous. My husband had a stem cell transplant in January after being diagnosed with all last year. His counts are all good so far, he feels well in himself. I've recently had to return to work, so back
I feel I need to apologise about my post before I even start, as I'm sure it will sound silly and ridiculous. My husband had a stem cell transplant in January after being diagnosed with all last year. His counts are all good so far, he feels well in himself. I've recently had to return to work, so back
Clarence45
in
Positive Wellbeing During Self-Isolation
4 years ago
PBC and stem cells
Hello- I am newly diagnosed with PBC and am curious if anyone here has done a stem cell transplant to reverse/treat your PBC,?
Hello- I am newly diagnosed with PBC and am curious if anyone here has done a stem cell transplant to reverse/treat your PBC,?
K-nirk
in
PBCers Organization
4 years ago
Face masks - recommendations?
My husband is still recovering from a stem cell transplant earlier this year and will need to shield until end of July. I have to go back to work next week. I work in a supermarket and although they say they have social distancing measures in place, they are not always followed. I want to invest in some
My husband is still recovering from a stem cell transplant earlier this year and will need to shield until end of July. I have to go back to work next week. I work in a supermarket and although they say they have social distancing measures in place, they are not always followed. I want to invest in some
Clarence45
in
Positive Wellbeing During Self-Isolation
4 years ago
New to site
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
A JEDI WARRIOR's TALE
Post by MPN-MATE Admin » Sun Jun 21, 2020 10:52 am Morning everyone... :-) I am feeling quite chuffed and privileged today as we have just had someone that has always inspired my own MPN journey, (join us here at MATES), by penning his arduous account of what is was like to go through the whole process
Post by MPN-MATE Admin » Sun Jun 21, 2020 10:52 am Morning everyone... :-) I am feeling quite chuffed and privileged today as we have just had someone that has always inspired my own MPN journey, (join us here at MATES), by penning his arduous account of what is was like to go through the whole process
socrates_8
in
MPN Voice
4 years ago
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