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ASXL1 mutation 39% Worried about MF turning into leukemia
Hello Everyone, I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets. and I also have the ASXL1
Hello Everyone, I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets. and I also have the ASXL1
merlisa
in
Fight MPN
1 month ago
Transplant.vs dialysis
Hi. I am going through the process for a kidney transplant. I had my first appointment with the transplant deans was supposed by what he was saying. I felt like he was trying to talk me ougetting a transplant. He told me there was no guarantee a transplant would improve my life more than dialysis.
Hi. I am going through the process for a kidney transplant. I had my first appointment with the transplant deans was supposed by what he was saying. I felt like he was trying to talk me ougetting a transplant. He told me there was no guarantee a transplant would improve my life more than dialysis.
Jade1982
in
Kidney Transplant Patient Support
1 year ago
latest news on liver transplants fo4 young people
take a look at this link where young people are waiting longer than people over age of 60 for transplant decisions made by computer algorithms https://www.bbc.co.uk/news/health-66259618 any thoughts? I’ve just been given probably 5 years to live without a transplant, and some have been waiting for
take a look at this link where young people are waiting longer than people over age of 60 for transplant decisions made by computer algorithms https://www.bbc.co.uk/news/health-66259618 any thoughts? I’ve just been given probably 5 years to live without a transplant, and some have been waiting for
Harriet-sarah
in
British Liver Trust
1 year ago
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Continued Journey
I’ve had the Bone Marrow Transplant!!! That was actually the easiest part. 5 hours of fluids leading up to the BMT and the previous 5 days of chemo infusions (day5 was the worst) were much harder. Chemo: Fladarabine -6 thru-2 with addition of Melphalan on day-2. When you start treatment (chemo) for
I’ve had the Bone Marrow Transplant!!! That was actually the easiest part. 5 hours of fluids leading up to the BMT and the previous 5 days of chemo infusions (day5 was the worst) were much harder. Chemo: Fladarabine -6 thru-2 with addition of Melphalan on day-2. When you start treatment (chemo) for
FiArt12X
in
CLL Support
2 months ago
Continued Journey
Getting my forth chemo treatment today. This has been much easier than the O CHOP. It has been smooth sailing especially with the surgically implanted port.( I forgot to mention). I am starting to notice some fatigue and energy slow down which is quite natural. One more chemo treatment tomorrow then
Getting my forth chemo treatment today. This has been much easier than the O CHOP. It has been smooth sailing especially with the surgically implanted port.( I forgot to mention). I am starting to notice some fatigue and energy slow down which is quite natural. One more chemo treatment tomorrow then
FiArt12X
in
CLL Support
2 months ago
Myelofibrosis- GVHD graft, versus, host, disease.
Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
FreemanSaviors
in
MPN Voice
2 months ago
Myelofibrosis - GVHD - graft, versus, host, disease
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
FreemanSaviors
in
MPN Voice
2 months ago
STEM CELL TRANSPLANT FINALLY SCHEDULED (WE HOPE)
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
dwolden
in
CLL Support
2 months ago
Continued Journey
I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I have 5 days of chemo starting Friday this week, with a rest day before the BMT. Apprehension has been growing in me but it is balanced by others that have successfully made this journey. Also, my Drs. And team give an
I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I have 5 days of chemo starting Friday this week, with a rest day before the BMT. Apprehension has been growing in me but it is balanced by others that have successfully made this journey. Also, my Drs. And team give an
FiArt12X
in
CLL Support
2 months ago
SCT journey update No.3
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell transplant, my transplant team @ Addenbrookes Hospital are working towards me starting chemotherapy at the end of July with the transplant taking place approx one week later at start of August. I have one more appointment
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell transplant, my transplant team @ Addenbrookes Hospital are working towards me starting chemotherapy at the end of July with the transplant taking place approx one week later at start of August. I have one more appointment
LFCLove
in
MPN Voice
2 months ago
Hubby diagnosed with Bowel Cancer today
My hubby had a colonoscopy today. They had to stop part way as they found a huge tumour!They told us he has bowel cancer. They said he will be referred to colorectal MDT to plan treatment but does anyone know how long will this take? No further appointments made yet. Sorry if this seems impatient
My hubby had a colonoscopy today. They had to stop part way as they found a huge tumour!They told us he has bowel cancer. They said he will be referred to colorectal MDT to plan treatment but does anyone know how long will this take? No further appointments made yet. Sorry if this seems impatient
123toyouto
in
Colon Cancer Connected
1 year ago
Borderline TSH during cancer treatment
Hi folks! Haven't been on here for some time but in the interim I have been treated for Chronic Myeloid Leukaemia. Had chemo in September last year which was successful (minus a few hiccups like fungal pneumonia that put me in ICU!) and currently on home oral chemo, antifungals and antibiotics daily
Hi folks! Haven't been on here for some time but in the interim I have been treated for Chronic Myeloid Leukaemia. Had chemo in September last year which was successful (minus a few hiccups like fungal pneumonia that put me in ICU!) and currently on home oral chemo, antifungals and antibiotics daily
spongecat
in
Thyroid UK
2 months ago
CYSTOSCOPY NEGATIVE August 2023
Hey Ladies and Gents. The urologist/oncologist says we can stop the monthly chemo infusions since my urinary bladder looks free of any neoplasm. And next April (2024), if it holds, I’ll be cancer free for three years and can get back on the lung transplant list. “Let your last thinks all be thanks
Hey Ladies and Gents. The urologist/oncologist says we can stop the monthly chemo infusions since my urinary bladder looks free of any neoplasm. And next April (2024), if it holds, I’ll be cancer free for three years and can get back on the lung transplant list. “Let your last thinks all be thanks
Sharp5Flat13
in
Lung Conditions Community Forum
1 year ago
Kidney disease and inheritance.
Hello everyone, I have kidney transplant 32 years ago. I now have 2 boys. My question is does kidney disease pass on to my children? My tenage son just went to have a urine test, and the result show there is a trace amount of blood in his urine. I am so worry because I don't want my kids to have
Hello everyone, I have kidney transplant 32 years ago. I now have 2 boys. My question is does kidney disease pass on to my children? My tenage son just went to have a urine test, and the result show there is a trace amount of blood in his urine. I am so worry because I don't want my kids to have
nlee
in
Kidney Transplant
1 year ago
Kidney transplant and children
Hello everyone, I have kidney transplant 32 years ago. I now have 2 boys. My question is does kidney disease pass on to my children? My tenage son just went to have a urine test, and the result show there is a trace amount of blood in his urine. I am so worry because I don't want my kids to have
Hello everyone, I have kidney transplant 32 years ago. I now have 2 boys. My question is does kidney disease pass on to my children? My tenage son just went to have a urine test, and the result show there is a trace amount of blood in his urine. I am so worry because I don't want my kids to have
nlee
in
Kidney Transplant Patient Support
1 year ago
Lightheadedness and Knee heaviness/dull pain after kidney transplant
Hi everyone, My client developed lightheadedness after kidney transplant, he's 3 months post transplant now. Actually, he had dizziness and imbalance pre-transplant and it worsen after the transplant. Moreover, he complains of knee heaviness, sometimes with dull pain. His BP is quite stable, not taking
Hi everyone, My client developed lightheadedness after kidney transplant, he's 3 months post transplant now. Actually, he had dizziness and imbalance pre-transplant and it worsen after the transplant. Moreover, he complains of knee heaviness, sometimes with dull pain. His BP is quite stable, not taking
Jeeeemv
in
Kidney Transplant
1 year ago
continuing the journey
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
FiArt12X
in
CLL Support
3 months ago
Sorry it has been a while with an update on Ruxolitinib
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
wendycu
in
MPN Voice
3 months ago
Quite the CLL journey
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
FiArt12X
in
CLL Support
3 months ago
Japan and stem cells treatment
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Bluebell2022
in
Cure Parkinson's
3 months ago
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