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Cutaneous T cell lymphoma (CTCL)
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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
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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
CANCER VACCINE
My husband saw his Oncol. last Fri. for his monthly treatment. She mentioned that UCSF is doing a clinical trial for a cancer vaccine I think called Sipuleucel-T . This vaccine is for all cancers. She referred us to UCSF so are waiting to see if he is accepted. Question: Is anyone familiar with this
My husband saw his Oncol. last Fri. for his monthly treatment. She mentioned that UCSF is doing a clinical trial for a cancer vaccine I think called Sipuleucel-T . This vaccine is for all cancers. She referred us to UCSF so are waiting to see if he is accepted. Question: Is anyone familiar with this
ROLNCIN1
in
Advanced Prostate Cancer
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
Ra-223 Treatment for Bone Metastases in Castrate-Resistant Prostate Cancer
New paper below. The sub-title is "Practical Management Issues for Patient Selection", so I figured that potential patients might be interested. The full text is available. For those contemplating Ra-223, use the following link & click on "Article as PDF": https://journals.lww.com/amjclinicaloncology
New paper below. The sub-title is "Practical Management Issues for Patient Selection", so I figured that potential patients might be interested. The full text is available. For those contemplating Ra-223, use the following link & click on "Article as PDF": https://journals.lww.com/amjclinicaloncology
pjoshea13
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
What is a non chemotherapy treatment regimen to treat CLl
I have just had my regular 6 week visit to my oncologist/haematologist .My readings have jumped after being stable since last November. ALC 84. Has been at 69 since last April. Dx 2016 Alc 21 has gradually increased . However my eGFR has dropped to 44 reference no is > 59. Creatinine is 139.above the
I have just had my regular 6 week visit to my oncologist/haematologist .My readings have jumped after being stable since last November. ALC 84. Has been at 69 since last April. Dx 2016 Alc 21 has gradually increased . However my eGFR has dropped to 44 reference no is > 59. Creatinine is 139.above the
Joffre1
in
CLL Support
5 years ago
Looking for CLL specialist in Denver, CO
Hi, so my hematologist has said I need to start chemo , undergoing lymph node biopsy tomorrow to make sure its CLL and not lymphoma since I was dx only on blood work, but before I actually start chemo was thinking I should see a CLL specialist (esp. because you all have recommended it). Does anyone
Hi, so my hematologist has said I need to start chemo , undergoing lymph node biopsy tomorrow to make sure its CLL and not lymphoma since I was dx only on blood work, but before I actually start chemo was thinking I should see a CLL specialist (esp. because you all have recommended it). Does anyone
jgamberg
in
CLL Support
5 years ago
Arzerra for Marginal Zone B Cell Lymphoma
My grandmother was diagnosed with marginal zone B cell lymphoma and unable to tolerate Rituxan due to infusion reactions. She is now trying Arzerra. Wondering if anyone has had Arzerra as a treatment for this as what I read shows it as a treatment for CLL.
My grandmother was diagnosed with marginal zone B cell lymphoma and unable to tolerate Rituxan due to infusion reactions. She is now trying Arzerra. Wondering if anyone has had Arzerra as a treatment for this as what I read shows it as a treatment for CLL.
Hidden
in
Non Hodgkin's Lymphoma Friends
5 years ago
Bit of waffle
Just treading water waiting for another set of PET scans and psychometry - see if any change. Bradycardia - autonomic unit at National hospital have referred me to cardiology at Uclh. Beverley Thomas did a new set of bloods -my b12 is now low and TSH is 6 - has asked gp to reheat them. So possibly
Just treading water waiting for another set of PET scans and psychometry - see if any change. Bradycardia - autonomic unit at National hospital have referred me to cardiology at Uclh. Beverley Thomas did a new set of bloods -my b12 is now low and TSH is 6 - has asked gp to reheat them. So possibly
Fusch
in
Hughes Syndrome APS Forum
5 years ago
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