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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
Crime: Pastor With 5 SS Children Receives Judgment July 6
For the past 6 years, Pastor Abel Olukayode Adewale, 57, has been embroiled in legal tussles against one of Nigeria’s biggest and most powerful banks. The whole saga began on March 5 2012, when the Apostolic Church pastor received an alert for the sum of N1 million on his account with Wema Bank Plc.
For the past 6 years, Pastor Abel Olukayode Adewale, 57, has been embroiled in legal tussles against one of Nigeria’s biggest and most powerful banks. The whole saga began on March 5 2012, when the Apostolic Church pastor received an alert for the sum of N1 million on his account with Wema Bank Plc.
sicklecellnews
in
Sickle Cell Society
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
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Well got my results back and I guess this explains alot 🤦🏼♀️
Sorry for the lighting, if you cant see it it says 96.6 for parietal cell antibody range 0.0 - 24.9 Thank you for pointing me in the right direction. Im not sure if this qualifies me as auto immune gastritis but thankfully we have discovered this.
Sorry for the lighting, if you cant see it it says 96.6 for parietal cell antibody range 0.0 - 24.9 Thank you for pointing me in the right direction. Im not sure if this qualifies me as auto immune gastritis but thankfully we have discovered this.
JennaShi
in
Thyroid UK
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
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
Muscle heaviness .
Hello I can feel the PMR is active in my body ,it is a wierd feeling which I expect you all can relate too.I also have intermittent one -sided shoulder pain.The question which I would like to ask however ,concerns the muscles in my upper arms and thighs (including lower buttocks!)They feel heavy and
Hello I can feel the PMR is active in my body ,it is a wierd feeling which I expect you all can relate too.I also have intermittent one -sided shoulder pain.The question which I would like to ask however ,concerns the muscles in my upper arms and thighs (including lower buttocks!)They feel heavy and
Dewdrop456
in
PMRGCAuk
6 years ago
Low b12, paretial antibodies negative, is it PA?
Hi all 👋🏼 Please bear with me, this is my first time posting. After a loooong time of feel tired beyond belief, low mood, gastro issues and irregular periods (is that a low b12 thing???) my dr tested my b12. My serum levels came back as 126 and my active b12 was 27. I’ve just finished the 6 loading
Hi all 👋🏼 Please bear with me, this is my first time posting. After a loooong time of feel tired beyond belief, low mood, gastro issues and irregular periods (is that a low b12 thing???) my dr tested my b12. My serum levels came back as 126 and my active b12 was 27. I’ve just finished the 6 loading
Emmy2018
in
Pernicious Anaemia Society
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
Pred tapering starts tomorrow
I was diagnosed with GCA/PMR May 7th and started on 60mg of prednisone. I will be lowering that dose to 50mg tomorrow. The doctor wants me to consider Tocilizumab weekly infusions. I have read the study and understand the side effects, but I would like to hear some of your thoughts and/or experiences
I was diagnosed with GCA/PMR May 7th and started on 60mg of prednisone. I will be lowering that dose to 50mg tomorrow. The doctor wants me to consider Tocilizumab weekly infusions. I have read the study and understand the side effects, but I would like to hear some of your thoughts and/or experiences
kay7954
in
PMRGCAuk
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
Eejit!!!!
Well, I guess there's a first time for everything... but feel I like a right idiot!!! It was 1:30 this afternoon, before I realised, I had forgotten to take my Prednisolone! I wondered why I felt weird and sluggish, just off... it was like I was going in slow motion and couldn't get going. Not
Well, I guess there's a first time for everything... but feel I like a right idiot!!! It was 1:30 this afternoon, before I realised, I had forgotten to take my Prednisolone! I wondered why I felt weird and sluggish, just off... it was like I was going in slow motion and couldn't get going. Not
Hidden
in
PMRGCAuk
6 years ago
CALR Type 1 & 2 Have Contrasting OS Outcomes
Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I recently came across some very useful articles concerning the CALR mutations & ASXL1 and their ability to be included as Prognostically significant, and naturally wanted to share those findings hopefully to the benefit of others
Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I recently came across some very useful articles concerning the CALR mutations & ASXL1 and their ability to be included as Prognostically significant, and naturally wanted to share those findings hopefully to the benefit of others
socrates_8
in
MPN Voice
6 years ago
Lumber puncture
So today a neurologist came in at 11:00. Did a lumber puncture right in the room. Now it’s a waiting game. Which I hate. Gave me gababapentin. For headache. I only had 2 doses and I can’t tell if it’s working. Or how long it takes to kick in. I’m hoping to go home tomorrow. But my right leg is bothering
So today a neurologist came in at 11:00. Did a lumber puncture right in the room. Now it’s a waiting game. Which I hate. Gave me gababapentin. For headache. I only had 2 doses and I can’t tell if it’s working. Or how long it takes to kick in. I’m hoping to go home tomorrow. But my right leg is bothering
Hali12
in
PMRGCAuk
6 years ago
The History of BMT
BMTInfonet’s video on the history of bone marrow and stem cell transplant. I have always been aware of the Anthony Nolan registry but never knew just what a profound impact it had worldwide. https://www.bmtinfonet.org/transplant-article/what-blood-stem-cell-transplant
BMTInfonet’s video on the history of bone marrow and stem cell transplant. I have always been aware of the Anthony Nolan registry but never knew just what a profound impact it had worldwide. https://www.bmtinfonet.org/transplant-article/what-blood-stem-cell-transplant
MFBMT2011
in
MPN Voice
6 years ago
Myelofibrosis & Yransplant Symposium
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
MFBMT2011
in
MPN Voice
6 years ago
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