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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
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
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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
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
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
What if venetoclax and/or ibritinib stops working?
Hi all, I am a 33 year old dutch male. I have had CLL since i am 24 and have been dealing with CLL for 9 years. I have mutated genes wich put me into a poor prognossis. I have had FCR when i was arround 26/27. I gave me 2 years of no threatment. Then it came back and i was place in a studie group
Hi all, I am a 33 year old dutch male. I have had CLL since i am 24 and have been dealing with CLL for 9 years. I have mutated genes wich put me into a poor prognossis. I have had FCR when i was arround 26/27. I gave me 2 years of no threatment. Then it came back and i was place in a studie group
JanAmsterdam
in
CLL Support
6 years ago
So confusing continued
Long talk with GP today and getting a better understanding of his reasoning I have pmr...... amongst other things. I had a large shwanoma removed from my spine as well as a second attempt at a 3 level fusion, which still isn't fused. I get two different pain collections from these. Layer over leukemia
Long talk with GP today and getting a better understanding of his reasoning I have pmr...... amongst other things. I had a large shwanoma removed from my spine as well as a second attempt at a 3 level fusion, which still isn't fused. I get two different pain collections from these. Layer over leukemia
Angiejnz
in
PMRGCAuk
6 years ago
Rheumatoid Arthritis or ?????
He found much inflammation, removed
bone
spur
. Bad pain still in left shoulder and left hip. Other side of body does not hurt as bad. I’m now on Enbrel, Methotrexate and 7.5mg prednisone. I don’t have pain in my small joints could this still be rheumatoid arthritis?
He found much inflammation, removed
bone
spur
. Bad pain still in left shoulder and left hip. Other side of body does not hurt as bad. I’m now on Enbrel, Methotrexate and 7.5mg prednisone. I don’t have pain in my small joints could this still be rheumatoid arthritis?
Judyp1203
in
NRAS
6 years ago
Managing the Complications of Chronic Lymphocytic Leukemia (CLL) Online Program by The CancerCare Education Department (USA)
We appreciate your participation in Managing the Complications of Chronic Lymphocytic Leukemia (CLL), which took place on May 17. We hope you found this workshop informative and look forward to your feedback. If you were not able to attend this workshop, it is available on telephone replay 24 hours a
We appreciate your participation in Managing the Complications of Chronic Lymphocytic Leukemia (CLL), which took place on May 17. We hope you found this workshop informative and look forward to your feedback. If you were not able to attend this workshop, it is available on telephone replay 24 hours a
lankisterguy
Volunteer
in
CLL Support
6 years ago
Male hypo's support and advice
Hello everyone. I'm 41 male in the United States. I had aplastic anemia and a follow-up bone marrow transplant in 1998. The complications are GVH of the gut, low thyroid, and skin vitiligo. 200 mcg levo. Blood tests in April are the following Vit D 25, D3 19mg/dl Vit D D2 6mg D 25mg Folate 7.8 ng/ml
Hello everyone. I'm 41 male in the United States. I had aplastic anemia and a follow-up bone marrow transplant in 1998. The complications are GVH of the gut, low thyroid, and skin vitiligo. 200 mcg levo. Blood tests in April are the following Vit D 25, D3 19mg/dl Vit D D2 6mg D 25mg Folate 7.8 ng/ml
Jeffreyt
in
Thyroid UK
6 years ago
Thoughts on CLL treatment and watch and wait
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
AdrianUK
in
CLL Support
6 years ago
Here it is. Times piece today on CLL and access to drugs. Skip dumb comments....
The Times chief reporter, Sean O’Neill, is writing about his leukaemia for the first time to highlight the unfair NHS policy on who can be offered life-saving drugs We had spent a glorious August day high in the Picos mountains in northern Spain, whizzing by cable car to the 1,800m peak of Fuenta De
The Times chief reporter, Sean O’Neill, is writing about his leukaemia for the first time to highlight the unfair NHS policy on who can be offered life-saving drugs We had spent a glorious August day high in the Picos mountains in northern Spain, whizzing by cable car to the 1,800m peak of Fuenta De
romarin
in
CLL Support
6 years ago
Unbearable ankle pain
Hello! I am new to this community.. I just want to Express my pain. Here's some background... My ankle pain started getting in the way of my normal activities about 5 years ago. I've been to 4 doctors and no one seems to be able to fix me. I have had 4 surgeries, the first two done by one doctor who
Hello! I am new to this community.. I just want to Express my pain. Here's some background... My ankle pain started getting in the way of my normal activities about 5 years ago. I've been to 4 doctors and no one seems to be able to fix me. I have had 4 surgeries, the first two done by one doctor who
Annielane
in
Pain Concern
6 years ago
Stem cell transplant outcomes
Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone. I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which
Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone. I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which
jane13
in
MPN Voice
6 years ago
High GGT post treatment for Acute Myeloid Leukaemia
Hi I have a GGT reading of 900. It has been rising steadily since a successful stem cell transplant in August. I drink very little and am only a bit overweight. My disease is in remission but am still not feeling well. Many of my symptoms - nausea, fatigue and loss of appetite could be caused by liver
Hi I have a GGT reading of 900. It has been rising steadily since a successful stem cell transplant in August. I drink very little and am only a bit overweight. My disease is in remission but am still not feeling well. Many of my symptoms - nausea, fatigue and loss of appetite could be caused by liver
Hidden
in
British Liver Trust
6 years ago
reducing
haven,t posted for long time, but been reading some of your reduction plans, i started at 40 mg, oct 2016, got down to 10 mg last spring, when i told my rheumy in august last yr about my 49 yr son diagnosed , with cancer, multiple myeloma, and that he would be having a stem cell transplant in januar
haven,t posted for long time, but been reading some of your reduction plans, i started at 40 mg, oct 2016, got down to 10 mg last spring, when i told my rheumy in august last yr about my 49 yr son diagnosed , with cancer, multiple myeloma, and that he would be having a stem cell transplant in januar
arvine
in
PMRGCAuk
6 years ago
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