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Update from the countess of chester
An update from yesterday’s post.well I’m realising that it takes a further amount of hospital visits and juggling of medication in particular prograf after a liver transplant before you can say your out of the woods finally.although some may not have any issues.so I’m in the hospital in the amazing countess
An update from yesterday’s post.well I’m realising that it takes a further amount of hospital visits and juggling of medication in particular prograf after a liver transplant before you can say your out of the woods finally.although some may not have any issues.so I’m in the hospital in the amazing countess
Popel
in
British Liver Trust
5 years ago
Ibrutinib. To take or not?
Hello, I was diagnosed will CLL 9 years ago & immediately put on FCR, after being given 2 red blood transfusions. 3 years later I had one cycle of Bendamustine & Rituximab & after another 3 years another cycle of Bendamustine & Rituximab. My only symptoms are increased white count & lymphocytes which
Hello, I was diagnosed will CLL 9 years ago & immediately put on FCR, after being given 2 red blood transfusions. 3 years later I had one cycle of Bendamustine & Rituximab & after another 3 years another cycle of Bendamustine & Rituximab. My only symptoms are increased white count & lymphocytes which
Benny12
in
CLL Support
5 years ago
Anyone with CLL, MDS/MPN ?
My Oncologist keeps telling me about this very rare combo of my blood cancers I have! I not only have CLL but also MDS/MPN. The article of my rare blood cancers will be in the AJOM in June or July; I should receive an abstract on this in June. It has something to do with my mutated gene “beta” so
My Oncologist keeps telling me about this very rare combo of my blood cancers I have! I not only have CLL but also MDS/MPN. The article of my rare blood cancers will be in the AJOM in June or July; I should receive an abstract on this in June. It has something to do with my mutated gene “beta” so
Mimi4times
in
CLL Support
5 years ago
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Feeling numb
Just received the 2nd set of blood tests from an un-connected complaint, for the cell markers conclusion to reveal I have CLL. Currently I feel as well as a 59 year old could feel, I am trying to come to terms with what I have been told, my GP has since reffered me to the the local Hematology department
Just received the 2nd set of blood tests from an un-connected complaint, for the cell markers conclusion to reveal I have CLL. Currently I feel as well as a 59 year old could feel, I am trying to come to terms with what I have been told, my GP has since reffered me to the the local Hematology department
1-12-32
in
CLL Support
5 years ago
Chronic Fatigue Syndrome
Hi, from New Zealand. I have been CLL diagnosed for 2years +--No treatment but am not handling the Chronic fatigue at all well . ANY suggestions please !!!. I feel my reason for living is disappearing because of being unable to do as I wish /need each day. Have learnt a lot from this site __thank
Hi, from New Zealand. I have been CLL diagnosed for 2years +--No treatment but am not handling the Chronic fatigue at all well . ANY suggestions please !!!. I feel my reason for living is disappearing because of being unable to do as I wish /need each day. Have learnt a lot from this site __thank
barbkay17
in
CLL Support
5 years ago
Ighv mutated
I found out last week that I am IGHV mutated. (Apparently that’s a good thing) It means I respond really well to the chemo. I was also told by my specialist that next month she wants another CT scan & another bone marrow biopsy. She said if they come back with good results then we might stop a three
I found out last week that I am IGHV mutated. (Apparently that’s a good thing) It means I respond really well to the chemo. I was also told by my specialist that next month she wants another CT scan & another bone marrow biopsy. She said if they come back with good results then we might stop a three
Puckie
in
CLL Support
5 years ago
kidney transplant support
last two years i am doing dialysis and i had a gallbladder removal surgery and Coronary artery bypass graft i am without a job for last two years i spend all my saving for dialysis and two surgery. i have to do three dialysis per week i have a donor for a kidney transplant i need some financial support
last two years i am doing dialysis and i had a gallbladder removal surgery and Coronary artery bypass graft i am without a job for last two years i spend all my saving for dialysis and two surgery. i have to do three dialysis per week i have a donor for a kidney transplant i need some financial support
Shami
in
Kidney Dialysis
5 years ago
chronic leukemia issues
I have stage 2 B chronic lymphocyte leukemia refractory, I have started chemo (leukeran) 2 months ago.2 weeks ago I started to have sharp pain in my right side, can this be cause by the chemo or the lymph nodes in my liver?
I have stage 2 B chronic lymphocyte leukemia refractory, I have started chemo (leukeran) 2 months ago.2 weeks ago I started to have sharp pain in my right side, can this be cause by the chemo or the lymph nodes in my liver?
dannydann
in
CLL Support
5 years ago
CLLSA Cambridge Members Conference Mar 2019
The first talk of the day was a team presentation from the Psycho-Oncology Service, Liaison Psychiatry, Addenbrooke’s Hospital - Approaches to Psychological health in Cancer This was followed by Jackie talking about her diagnosis and treatment under the Flair trial. This was followed by an update on
The first talk of the day was a team presentation from the Psycho-Oncology Service, Liaison Psychiatry, Addenbrooke’s Hospital - Approaches to Psychological health in Cancer This was followed by Jackie talking about her diagnosis and treatment under the Flair trial. This was followed by an update on
Myrddin
in
CLL Support
5 years ago
Treatment ”options”
Hello all you wonderful people! I'm looking for hope and positive energy here... My dad was diagnosed with CLL just in December. He lives in Barcelona, Spain (edited as advised, thanks Bubnjay1) He was being treated as a private patient through his full comprehensive health insurance policy Very short
Hello all you wonderful people! I'm looking for hope and positive energy here... My dad was diagnosed with CLL just in December. He lives in Barcelona, Spain (edited as advised, thanks Bubnjay1) He was being treated as a private patient through his full comprehensive health insurance policy Very short
LurkerEmma
in
CLL Support
5 years ago
Curling 123
Imbruvica appears to be the preferred therapy from reading these posts. As a senior and in Ontario, I wonder if it is covered by OHIP or Ontario Drug Program. Seems drugs if not administered in hospital are not covered even though many cancer drugs are taken orally now. Anyone from Ontario with CLL,
Imbruvica appears to be the preferred therapy from reading these posts. As a senior and in Ontario, I wonder if it is covered by OHIP or Ontario Drug Program. Seems drugs if not administered in hospital are not covered even though many cancer drugs are taken orally now. Anyone from Ontario with CLL,
Curling123
in
CLL Support
5 years ago
Advagraf dosage
I reduce the dose of advagraf for 9 months after the transplant, but the level of tacrolimus does not decrease. I started with 9mg, but now I use only 5mg. Tacrolimus levels are around 11-12. My doctor recommends that I use only 3mg - is it not too small?
I reduce the dose of advagraf for 9 months after the transplant, but the level of tacrolimus does not decrease. I started with 9mg, but now I use only 5mg. Tacrolimus levels are around 11-12. My doctor recommends that I use only 3mg - is it not too small?
uking
in
Kidney Transplant Patient Support
5 years ago
I am CLL patient previusly treate with FR. I need to be treated again. I need some advice please.
I am a CLL patient. I have been previously treated with FR regimen for CLL. (Rituximaba plus Fludarabina) After 2.5 years, the WBC are around 30 K/ul, and platelets around 41 K. Doctors have decided to treat me again. Due to cost, unsufficient Insurance coverage, it is not possible to go to Imbruvica
I am a CLL patient. I have been previously treated with FR regimen for CLL. (Rituximaba plus Fludarabina) After 2.5 years, the WBC are around 30 K/ul, and platelets around 41 K. Doctors have decided to treat me again. Due to cost, unsufficient Insurance coverage, it is not possible to go to Imbruvica
tropicsurvivor
in
CLL Support
5 years ago
Living on dialysis
Hi jayhawker its Mj 1965, its been a while.b4 I started dialysis I wanted to go on haemodialysis but I was advised by my nephrologist to go on PD dialysis because if I went on haemodialysis it would make me feel worse and I would feel drained all the time. You know what its the best decision I made.
Hi jayhawker its Mj 1965, its been a while.b4 I started dialysis I wanted to go on haemodialysis but I was advised by my nephrologist to go on PD dialysis because if I went on haemodialysis it would make me feel worse and I would feel drained all the time. You know what its the best decision I made.
Mj1965
in
Kidney Dialysis
5 years ago
Creatinine level
My friend already went for Bypass three years back.his sugar level is under well controlled.now his creatinine level is 5.2.but he has no symptoms of kidney failure.he is doing his normal work.he is taking tablets for reducing the level.but it is not under control.can anybody help him
My friend already went for Bypass three years back.his sugar level is under well controlled.now his creatinine level is 5.2.but he has no symptoms of kidney failure.he is doing his normal work.he is taking tablets for reducing the level.but it is not under control.can anybody help him
Lakshmanan1954
in
Diabetes India
5 years ago
CLL apricot kernels and green tea extract.
I am newly diagnosed. White cells were 3.2L. In Ontario top of range is 2.9. I hope it is decided I am wait and see for now. I am taking for now two dried bitter apricot kernels. Read in many posts from US that they reduce white cells, plus green tea extract 750mg. Anyone else familiar with this or taking
I am newly diagnosed. White cells were 3.2L. In Ontario top of range is 2.9. I hope it is decided I am wait and see for now. I am taking for now two dried bitter apricot kernels. Read in many posts from US that they reduce white cells, plus green tea extract 750mg. Anyone else familiar with this or taking
Curling123
in
CLL Support
5 years ago
Rafixamin ..
Hi there everybody. My specialist put me on rifixamin thursday. Iv been totally zonked since. Also put on senna tablets along with all the lactulose and laxido i already take. Got to have camera up my bum. After the senna. My insides where in excruitiating pain. Is this normal?? Any advice??
Hi there everybody. My specialist put me on rifixamin thursday. Iv been totally zonked since. Also put on senna tablets along with all the lactulose and laxido i already take. Got to have camera up my bum. After the senna. My insides where in excruitiating pain. Is this normal?? Any advice??
Tormented
in
British Liver Trust
5 years ago
A New Thyroid Subset For Chronic Fatigue Syndrome (ME/CFS)? The Low T3 Syndrome Group by Cort Johnson www.prohealth.com
Do problems with the gas pedal of the body – the thyroid – play more of a role in ME/CFS than most doctors think? By Cort Johnson • www.ProHealth.com. March 13, 2019 I found this to be a really interesting well written article referencing other aspects of low T3. https://www.prohealth.com/library/new-thyroid-subset-chronic-fatigue-syndrome-cfs-low-t3
Do problems with the gas pedal of the body – the thyroid – play more of a role in ME/CFS than most doctors think? By Cort Johnson • www.ProHealth.com. March 13, 2019 I found this to be a really interesting well written article referencing other aspects of low T3. https://www.prohealth.com/library/new-thyroid-subset-chronic-fatigue-syndrome-cfs-low-t3
mourneadventurer
in
Thyroid UK
5 years ago
Sinus surgery anyone?
Hi all, I hope you are well. **(just a quick warning,some of this post has graphic descriptions.)** So I’m really struggling at the moment,since being diagnosed 3 years ago with asthma/chronic sinus issues plus polyps, I have lost my sense of smell completely and taste is next to nothing, I also can
Hi all, I hope you are well. **(just a quick warning,some of this post has graphic descriptions.)** So I’m really struggling at the moment,since being diagnosed 3 years ago with asthma/chronic sinus issues plus polyps, I have lost my sense of smell completely and taste is next to nothing, I also can
Matilda1
in
Asthma Community Forum
5 years ago
Concerned
My son is 3 years post kidney transplant & his creatinine has never been really stable. He starts to creep up & they do a biopsy & everything is normal. He drinks a gallon of water a day. He will end up going back down only to go up again. Anybody else seen this?
My son is 3 years post kidney transplant & his creatinine has never been really stable. He starts to creep up & they do a biopsy & everything is normal. He drinks a gallon of water a day. He will end up going back down only to go up again. Anybody else seen this?
Wheeling
in
Kidney Transplant Patient Support
5 years ago
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