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Mantle cell lymphoma (MCL)
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Russell was diagnosed with a lethal cancer called non-hodgkin’s lymphoma in 2016 and conventional treatments gave only a temporary reprieve.
Russell was diagnosed with a lethal cancer called non-hodgkin’s lymphoma in 2016 and conventional treatments gave only a temporary reprieve. He refused stem cell transplant therapy after researching it, and instead started his own research. He was later treated for Graves’ disease which led him to LDN
Russell was diagnosed with a lethal cancer called non-hodgkin’s lymphoma in 2016 and conventional treatments gave only a temporary reprieve. He refused stem cell transplant therapy after researching it, and instead started his own research. He was later treated for Graves’ disease which led him to LDN
liveurlife
Volunteer
in
LDN Research Trust
5 years ago
Spots that are turning nasty! Dapsone
Hi everybody, tried Cotrimoxazole but could not tolerate. My haematologist has put me one Dapsone which is bringing me out in nasty sores, they take a long time to clear. Apparently this drug helps with the very bad cough that I have all the time along with heavy mucus. Has anyone out there had a problem
Hi everybody, tried Cotrimoxazole but could not tolerate. My haematologist has put me one Dapsone which is bringing me out in nasty sores, they take a long time to clear. Apparently this drug helps with the very bad cough that I have all the time along with heavy mucus. Has anyone out there had a problem
Broadbent
in
CLL Support
5 years ago
I have TP53
I was told I will not react to chemo (anymore) and based on my mutations is either CarT or Stem Cell Transplant. I am deadly afraid of the latter and can't afford CarT. Are there any Clinical trials for CarT at this point? Presently I am on Ibrutinib (have been for 10 months and doing relatively well
I was told I will not react to chemo (anymore) and based on my mutations is either CarT or Stem Cell Transplant. I am deadly afraid of the latter and can't afford CarT. Are there any Clinical trials for CarT at this point? Presently I am on Ibrutinib (have been for 10 months and doing relatively well
Doremefasol
in
CLL Support
5 years ago
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10 months post Stem Cell Transplant
It's been a long time since I last posted on here! 10 months ago I was lucky enough to receive donor cells from a 10/10 match. It's been a rollercoaster ride but looking back, I've been very lucky as it has been nowhere near as bad as I had read it could be. Yes there have been some challenges, felt
It's been a long time since I last posted on here! 10 months ago I was lucky enough to receive donor cells from a 10/10 match. It's been a rollercoaster ride but looking back, I've been very lucky as it has been nowhere near as bad as I had read it could be. Yes there have been some challenges, felt
KAS8
in
CLL Support
5 years ago
IF, H pylori, parietal cell antibody, vitamin b12 deficiency
Hi All, I am new to this group. I am miss diagnosed of not having any issues with various blood tests. I have PA diagnosed my self and cyanocobalamin and hydroxobalamin doesn’t work. Lot of neurological symptoms body shaking and what not. Only methycobalamin works and that too only from particular brand
Hi All, I am new to this group. I am miss diagnosed of not having any issues with various blood tests. I have PA diagnosed my self and cyanocobalamin and hydroxobalamin doesn’t work. Lot of neurological symptoms body shaking and what not. Only methycobalamin works and that too only from particular brand
Thulasi1
in
Pernicious Anaemia Society
5 years ago
ED after Leukaemia (CML)
New to this. Anyone part of this group had Leukaemia and bone marrow transplant and suffered ED?
New to this. Anyone part of this group had Leukaemia and bone marrow transplant and suffered ED?
Cryptogamia
in
Erectile Dysfunction Support
5 years ago
Transplant birthday/Mental Health Awareness Week/Lung Transplant Consultation
Today marks 15 years since my bone marrow transplant for leukaemia. Crazy to think so many years have gone by and a definite cause for celebration tonight with my Dad and wife - we're going for a curry. Been a lot of up and downs along the way not least the development of my PPFE which as you many of
Today marks 15 years since my bone marrow transplant for leukaemia. Crazy to think so many years have gone by and a definite cause for celebration tonight with my Dad and wife - we're going for a curry. Been a lot of up and downs along the way not least the development of my PPFE which as you many of
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
5 years ago
Need to know about any DSide Effects when on Venetalax/ rituximab
Hi Everyone. Seems I have the P53 gene deletion. I will be commencing on a regime of Venetaclax/ rituximab in late may- will be monitored for 3 days each week for 5 weeks as an inpatient. I would like to hear from people who have been on this medication regime to please tell me about side effects they
Hi Everyone. Seems I have the P53 gene deletion. I will be commencing on a regime of Venetaclax/ rituximab in late may- will be monitored for 3 days each week for 5 weeks as an inpatient. I would like to hear from people who have been on this medication regime to please tell me about side effects they
roszika
in
CLL Support
5 years ago
New started
Just started c25k this week. Never run in my life ( unless for an ice cream van ) . Just had all clear after stem cell transplant so decided to get fit and loose weight . Oh my god it’s hard , knees really hurt after yesterday , think I just run really badly not naturally like people I see , but determined
Just started c25k this week. Never run in my life ( unless for an ice cream van ) . Just had all clear after stem cell transplant so decided to get fit and loose weight . Oh my god it’s hard , knees really hurt after yesterday , think I just run really badly not naturally like people I see , but determined
Strugglingsurvivor
in
Couch to 5K
5 years ago
Please Help!
Hello Everyone! My Husband just had a diagnose of a Follicular non Hodgkin lymphoma stage 1 on his abdomen. The doctor wants to wait 6 months to do a follow up and he doesn't want to start any treatment right now, since my husband doesn't have any symptoms related to cancer. We are very afraid to wait
Hello Everyone! My Husband just had a diagnose of a Follicular non Hodgkin lymphoma stage 1 on his abdomen. The doctor wants to wait 6 months to do a follow up and he doesn't want to start any treatment right now, since my husband doesn't have any symptoms related to cancer. We are very afraid to wait
Natalilali
in
Non Hodgkin's Lymphoma Friends
5 years ago
Probiotics Linked to Poorer Response to Cancer Immunotherapy in Skin Cancer Patients
Parker Institute and MD Anderson researchers found that diet and supplements appear to have an effect on a patient’s ability to respond to cancer immunotherapy, most likely due to changes in the patient’s gut microbiome. Among the findings: Over-the-counter probiotic supplement use was linked to
Parker Institute and MD Anderson researchers found that diet and supplements appear to have an effect on a patient’s ability to respond to cancer immunotherapy, most likely due to changes in the patient’s gut microbiome. Among the findings: Over-the-counter probiotic supplement use was linked to
wmay13241
in
Non Hodgkin's Lymphoma Friends
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
Hodgkin Lymphoma Conference for Adolescents and Young Adults
Join Lymphoma Canada on Saturday, April 6, 2019, at McGill University for the Hodgkin Lymphoma Conference for Adolescents and Young Adults. OUr Keynote Speaker, Dr. Nathalie Johnson, and other experts will discuss Hodgkin lymphoma - how to manage the side effects of chemo, the importance of nutrition
Join Lymphoma Canada on Saturday, April 6, 2019, at McGill University for the Hodgkin Lymphoma Conference for Adolescents and Young Adults. OUr Keynote Speaker, Dr. Nathalie Johnson, and other experts will discuss Hodgkin lymphoma - how to manage the side effects of chemo, the importance of nutrition
LCAdmin
Lymphoma Canada
in
Lymphoma Canada
5 years ago
Bone Marrow Transplant Aftermath
The experimental bone marrow transplant for prostate cancer had no positive effects for me, as far as we can determine, but I keep getting new chronic side effects, which are likely explained by the bone marrow transplant. First it was loss of the ability for my body to regulate my temperature effectively
The experimental bone marrow transplant for prostate cancer had no positive effects for me, as far as we can determine, but I keep getting new chronic side effects, which are likely explained by the bone marrow transplant. First it was loss of the ability for my body to regulate my temperature effectively
Beauxman
in
Advanced Prostate Cancer
5 years ago
Day 2 of hospital
Well I had an appetite today for the first time in 12 days! Food sucks but edible. I think I ate too much even though I still didn’t eat much... For some reason they didn’t start my chemo until super late last night so now it won’t be done until late Friday night. I was very lucky to have visitors
Well I had an appetite today for the first time in 12 days! Food sucks but edible. I think I ate too much even though I still didn’t eat much... For some reason they didn’t start my chemo until super late last night so now it won’t be done until late Friday night. I was very lucky to have visitors
rlyndecker
in
CLL Support
5 years ago
New test for mutations to calculate the profession of MF
Hi good folks, Hope you all are going OK. Last time I was speaking to my Hemo he told me that a test will be available in about 12 months that will identify all a MF patients mutations and will assist in predicting the progression of the illness. He said it should allow for him to predict how the illness
Hi good folks, Hope you all are going OK. Last time I was speaking to my Hemo he told me that a test will be available in about 12 months that will identify all a MF patients mutations and will assist in predicting the progression of the illness. He said it should allow for him to predict how the illness
Hidden
in
MPN Voice
5 years ago
Hello!
Hi everybody! I'm Dave from SW Michigan. I was diagnosed with HCC about 15 months ago. PVVT meant no surgery or transplant. Has a Y90 procedure done last July in Ann Arbor. It killed 75% of the largest tumor but there was 2 new tumors in my lungs on the last MRI so the Dr. put me on Nexavar. Been taking
Hi everybody! I'm Dave from SW Michigan. I was diagnosed with HCC about 15 months ago. PVVT meant no surgery or transplant. Has a Y90 procedure done last July in Ann Arbor. It killed 75% of the largest tumor but there was 2 new tumors in my lungs on the last MRI so the Dr. put me on Nexavar. Been taking
reddog88
Patient
in
Blue Faery Liver Cancer
5 years ago
Update- My Imbruvica plus Venetoclax Captivate trial.
Hello, I am very pleased to report I am still MRD undetectable in the blood and bone Marrow after almost 1 year!! My Doctor prefers to say MRD- undetectable instead of MRD Negative. I am most likely on a placebo. Per the trial I am on either a placebo or imbruvica. I am Very very sure a placebo
Hello, I am very pleased to report I am still MRD undetectable in the blood and bone Marrow after almost 1 year!! My Doctor prefers to say MRD- undetectable instead of MRD Negative. I am most likely on a placebo. Per the trial I am on either a placebo or imbruvica. I am Very very sure a placebo
Hoffy
in
CLL Support
5 years ago
Stressing
Tickle in throat and feeling a little nauseous. First time ill since starting treatments. 2 sessions of BR completed. 4 more to go. I’m probably worrying but getting a cold/flu while immunity is low is concerning me today.
Tickle in throat and feeling a little nauseous. First time ill since starting treatments. 2 sessions of BR completed. 4 more to go. I’m probably worrying but getting a cold/flu while immunity is low is concerning me today.
Estate1
in
CLL Support
5 years ago
CAR T versus Stem Cell transplant for Richter's
Has anyone used CAR T or stem cell transplant for advanced CLL or Richter's?
Has anyone used CAR T or stem cell transplant for advanced CLL or Richter's?
profrich
in
CLL Support
5 years ago
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