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Life after transplant
I read a lot about people struggling after transplant to get back to normal life and it’s clear that for many “normal” is not what they had before diagnosis. I don’t know if I am in a minority or we only tend to speak out when things are bad but my life is amazing now. My bloods are all in normal ranges
I read a lot about people struggling after transplant to get back to normal life and it’s clear that for many “normal” is not what they had before diagnosis. I don’t know if I am in a minority or we only tend to speak out when things are bad but my life is amazing now. My bloods are all in normal ranges
KAS8
in
CLL Support
4 years ago
MDS and AML
Despite feeling lethargic and tired for over two years and going to the doctors on a regular basis and having over a dozen blood tests abd no referrals earlier we have had the awful news this week that my partner has both MDS and AML and goes into hospital today for 4/5 weeks of chemo with view to stem
Despite feeling lethargic and tired for over two years and going to the doctors on a regular basis and having over a dozen blood tests abd no referrals earlier we have had the awful news this week that my partner has both MDS and AML and goes into hospital today for 4/5 weeks of chemo with view to stem
sportydad
in
Leukaemia CARE
4 years ago
Ntpobnp blood test
Hi all. I had a bone marrow transplant 2 years ago. It put stress on my heart. Last week i had a echocardiogram which has come back good!!! Though my bnp level is 600... i am 38. So too high. My consultant is not worried though. Does this sound right?? Does a high bnp always mean heart failure? Back
Hi all. I had a bone marrow transplant 2 years ago. It put stress on my heart. Last week i had a echocardiogram which has come back good!!! Though my bnp level is 600... i am 38. So too high. My consultant is not worried though. Does this sound right?? Does a high bnp always mean heart failure? Back
Jalola
in
British Heart Foundation
4 years ago
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Car-T and a bone marrow transplant
Is someone in their late 70's and older too old to have Car-T therapy or a bone marrow transplant?
Is someone in their late 70's and older too old to have Car-T therapy or a bone marrow transplant?
Bmarbler
in
CLL Support
4 years ago
Brain Inflammation
Last week I completed the MIN-102 trial which concluded with an MRI. The next day I received a call from the neurologist saying there are changes from the last MRI (9/19) and what is brain inflammation. She felt it urgent enough to prompt a video visit with me and my neurologist. I got the radiologist
Last week I completed the MIN-102 trial which concluded with an MRI. The next day I received a call from the neurologist saying there are changes from the last MRI (9/19) and what is brain inflammation. She felt it urgent enough to prompt a video visit with me and my neurologist. I got the radiologist
SongStream
in
AMN EASIER
4 years ago
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
I had surgery for a huge bone spur digging into my Achilles tendon
I've been in a boot-splint for 6 weeks. I noticed I walk like Tim Conway as the 90yr old man in the Carol Burnett show. Then looking at videos on U-tube I see PD patients have the same slow, shuffling gait. I'm worried the boot is not the reason for the shuffling gait but PD is. Supposed to
I've been in a boot-splint for 6 weeks. I noticed I walk like Tim Conway as the 90yr old man in the Carol Burnett show. Then looking at videos on U-tube I see PD patients have the same slow, shuffling gait. I'm worried the boot is not the reason for the shuffling gait but PD is. Supposed to
kaypeeoh
in
Cure Parkinson's
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 CARE
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
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
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
Stuck at Week 4
I went to physio and got an x-ray, and apparently I have a
bone
spur
near my heal which is irritating my plantar fascia. Bummer! Anyway, 16 minutes of running interspersed with 18 minutes of walking isn't too shabby as an regular exercise routine.
I went to physio and got an x-ray, and apparently I have a
bone
spur
near my heal which is irritating my plantar fascia. Bummer! Anyway, 16 minutes of running interspersed with 18 minutes of walking isn't too shabby as an regular exercise routine.
DNB2512
Graduate
in
Couch to 5K
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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