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Cutaneous T cell lymphoma (CTCL)
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My Recovery so far post Stem cell Transplant
Sorry I've been absent for so long, my stem cell transplant journey has been a difficult one to be honest and only now do I feel able to be able to tell the story so far. Thank you to everyone who kindly messaged me to see how I was and apologies for asking so long to respond. I really appreciated
Sorry I've been absent for so long, my stem cell transplant journey has been a difficult one to be honest and only now do I feel able to be able to tell the story so far. Thank you to everyone who kindly messaged me to see how I was and apologies for asking so long to respond. I really appreciated
Jm954
Administrator
in
CLL Support
1 year ago
Anyone had a coronary sinus reducer?
I haven't been on here in a long while. My medical history is pretty complex, I'm seen locally at the Bristol Heart Institute but also under the care of the Cardio-oncology team at the Royal Brompton which a forum member told me about years ago thankfully. Basically my bone marrow transplant and other
I haven't been on here in a long while. My medical history is pretty complex, I'm seen locally at the Bristol Heart Institute but also under the care of the Cardio-oncology team at the Royal Brompton which a forum member told me about years ago thankfully. Basically my bone marrow transplant and other
SomersetJo
in
British Heart Foundation
1 year ago
Antioxidants can help cancerous tumors grow new blood vessels, which helps the cancer to grow and spread.
They didn't expressly refer to prostate cancer. But this is an issue that has been on my mind for a while. Antioxidants can help cancerous tumors grow new blood vessels, which helps the cancer to grow and spread. Https://m.jpost.com/health-and-wellness/article-757233 While many people may take
They didn't expressly refer to prostate cancer. But this is an issue that has been on my mind for a while. Antioxidants can help cancerous tumors grow new blood vessels, which helps the cancer to grow and spread. Https://m.jpost.com/health-and-wellness/article-757233 While many people may take
cesanon
in
Advanced Prostate Cancer
1 year ago
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Positive IFA, Negative Parietal Cell, B-12 injections affect IFA test
Hello, I recently tested positive for intrinsic factor blocking antibody but the result of my parietal cell antibody test was negative. I’m curious if other members have had this same experience? My doctors have suspected a PA diagnosis for several years. An IFA test about five years ago produced
Hello, I recently tested positive for intrinsic factor blocking antibody but the result of my parietal cell antibody test was negative. I’m curious if other members have had this same experience? My doctors have suspected a PA diagnosis for several years. An IFA test about five years ago produced
mcg-woo
in
Pernicious Anaemia Society
1 year ago
pink patches on skin
Hi I am 44 days post SCT and am at home recovering . I’m feeling quite well . I am 68 and have no other health issues . My blood counts are ok considering it’s not long since I had the transplant . haemoglobin is 94 with the help of some jabs in my stomach Platelets 61 WBC 3.8 Neutrofils
Hi I am 44 days post SCT and am at home recovering . I’m feeling quite well . I am 68 and have no other health issues . My blood counts are ok considering it’s not long since I had the transplant . haemoglobin is 94 with the help of some jabs in my stomach Platelets 61 WBC 3.8 Neutrofils
Tortina
in
MPN Voice
1 year ago
Surviving in retirement
At age 52 I was diagnosed with stage 3 Multiple Myeloma ; after 2 bone marrow transplants in 2007 & 2009 I was able to continue my engineering job until age 65. At 66 my PSA was 3400 with Gleason score 4 ; started Docetaxel and Jevtana until July 23 ; Now on Pluvicto have 5 more treatments to
At age 52 I was diagnosed with stage 3 Multiple Myeloma ; after 2 bone marrow transplants in 2007 & 2009 I was able to continue my engineering job until age 65. At 66 my PSA was 3400 with Gleason score 4 ; started Docetaxel and Jevtana until July 23 ; Now on Pluvicto have 5 more treatments to
chipspesto
in
Advanced Prostate Cancer
1 year ago
start of my SCT journey
Hi pawb I’m primary MF and Cal-r positive. I’ve been on Epo injections for 30 weeks which has kept my red cells in the high 90s. My platelets are in the low 40s. I have started to take Ruxolitinib but because of my low platelets 5mg 2 times a day. This will hopefully reduce my spleen. I have been told
Hi pawb I’m primary MF and Cal-r positive. I’ve been on Epo injections for 30 weeks which has kept my red cells in the high 90s. My platelets are in the low 40s. I have started to take Ruxolitinib but because of my low platelets 5mg 2 times a day. This will hopefully reduce my spleen. I have been told
Grizly
in
MPN Voice
1 year ago
Stem Cell Transplant update
I am now close to 6 months from my sct. I feel well in myself except for side affects from steroids which I should be off in a week. They make it difficult to sleep, make me hungry and over full of energy . Many of my blood counts are in normal range except for platelets. These keep yo-yoing around
I am now close to 6 months from my sct. I feel well in myself except for side affects from steroids which I should be off in a week. They make it difficult to sleep, make me hungry and over full of energy . Many of my blood counts are in normal range except for platelets. These keep yo-yoing around
Scaredy_cat
in
MPN Voice
1 year ago
How to pass the day
Eternities Day
Dawn whispers to your sleepy ears as nature awakens to herald daybreak. Quiet colours will bless your eyes, as suns soft rays do gently entice those leaden lids to rise and see the glory of my being. Stay with me awhile and see that glowing orb in haloed radiance
Eternities Day
Dawn whispers to your sleepy ears as nature awakens to herald daybreak. Quiet colours will bless your eyes, as suns soft rays do gently entice those leaden lids to rise and see the glory of my being. Stay with me awhile and see that glowing orb in haloed radiance
cycli
in
PMRGCAuk
1 year ago
An indicator in the blood could guide lupus treatment
A clinical trial (called “BEAT-Lupus”) has found that using a combination of two biologic treatments, rituximab and belimumab, may be more effective than using rituximab alone in patients who have not responded well to other treatment. They also found that people with a particular indicator in their
A clinical trial (called “BEAT-Lupus”) has found that using a combination of two biologic treatments, rituximab and belimumab, may be more effective than using rituximab alone in patients who have not responded well to other treatment. They also found that people with a particular indicator in their
Debbie_kinsey
Administrator
in
LUPUS UK
2 years ago
Brother’s passing away
it is with great devastation and heartbreak that my 65 yo brother passed on Monday 13/3/23. He was released from his 10th hospital admit in recent weeks and was approaching the chemist area when he collapsed. The staff made a valiant attempt to revive him. The ambulance medics kept doing CPR he
it is with great devastation and heartbreak that my 65 yo brother passed on Monday 13/3/23. He was released from his 10th hospital admit in recent weeks and was approaching the chemist area when he collapsed. The staff made a valiant attempt to revive him. The ambulance medics kept doing CPR he
honeybug
in
Fibromyalgia Action UK
2 years ago
Strategic Masking to Protect Patients from All Respiratory Viral Infections
https://www.nejm.org/doi/full/10.1056/NEJMp2306223 - The end of the public health emergency in the United States is a richly symbolic milestone in the course of the SARS-CoV-2 pandemic. During the height of the pandemic, the virus killed millions of people worldwide, upended lives, and radically altered
https://www.nejm.org/doi/full/10.1056/NEJMp2306223 - The end of the public health emergency in the United States is a richly symbolic milestone in the course of the SARS-CoV-2 pandemic. During the height of the pandemic, the virus killed millions of people worldwide, upended lives, and radically altered
lankisterguy
Volunteer
in
CLL Support
1 year ago
8 week check up
Had an 8 week check up at Herbert Herman Cancer Center today. Doc says I'm doing excellent. He ordered a PET scan a month after my final Gazyva infusion 3/20. Is this normal procedure for those on O&V 12 month course? I though I wouldn't have any more scary test until the end of treatment. On bright
Had an 8 week check up at Herbert Herman Cancer Center today. Doc says I'm doing excellent. He ordered a PET scan a month after my final Gazyva infusion 3/20. Is this normal procedure for those on O&V 12 month course? I though I wouldn't have any more scary test until the end of treatment. On bright
Gradyboy
in
CLL Support
2 years ago
Insurance company refusing to pay out saying my Lymphoma is related to my CLL
I was diagnosed with CLL 14 years ago and had been on W&W for 12 years before I needed medical intervention. I was successfully treated with Alcalbrutinib and my CLL has been under control ever since.As I am self employed, I took out an income protection policy about 5 years ago, knowing that my CLL
I was diagnosed with CLL 14 years ago and had been on W&W for 12 years before I needed medical intervention. I was successfully treated with Alcalbrutinib and my CLL has been under control ever since.As I am self employed, I took out an income protection policy about 5 years ago, knowing that my CLL
duncangarnham
in
CLL Support
2 years ago
Blood Negative MRD
History: My husband learned he had CLL in March 2022 (he is muted TP53 and 17p depleted) - he was accepted in a Dana-Farber study for his particular CLL with treatments of A&O&V. (Acalabrutinib, obinutuzumab and venetoclax).He finished obinutuzumab. Currently: after 11 months, February 2023, of immunotherapy
History: My husband learned he had CLL in March 2022 (he is muted TP53 and 17p depleted) - he was accepted in a Dana-Farber study for his particular CLL with treatments of A&O&V. (Acalabrutinib, obinutuzumab and venetoclax).He finished obinutuzumab. Currently: after 11 months, February 2023, of immunotherapy
spi3
in
CLL Support
2 years ago
A critical review of Provenge. Your inputs welcomed?
Any thoughts on this critical review. One thing that strikes me as odd, is how there is no information regarding efficacy since 2012. That's 10 years. If something works well, then why isn't there new data showing that? Some people say, it can't hurt, so just do it. That makes sense if it is true
Any thoughts on this critical review. One thing that strikes me as odd, is how there is no information regarding efficacy since 2012. That's 10 years. If something works well, then why isn't there new data showing that? Some people say, it can't hurt, so just do it. That makes sense if it is true
GeorgeGlass
in
Advanced Prostate Cancer
2 years ago
What first?: Provenge or Nubeqa?
I have not used 2d line AR drugs yet. CRPC just started six months ago. My PSA is below 1. One small, suspected area on last month's PSMA PET scan. That is the same area that looked suspicious on PSMA PET in 2016 and on Axumin in early 2021. I did IADT 2016-2020, with continuous ADT since Jan 2021
I have not used 2d line AR drugs yet. CRPC just started six months ago. My PSA is below 1. One small, suspected area on last month's PSMA PET scan. That is the same area that looked suspicious on PSMA PET in 2016 and on Axumin in early 2021. I did IADT 2016-2020, with continuous ADT since Jan 2021
GeorgeGlass
in
Advanced Prostate Cancer
2 years ago
Stem cell transplant starts on Monday
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
Jm954
Administrator
in
CLL Support
1 year ago
Newswire Spring 2023 - my thoughts
I just finally got round to reading this and am left feeling more inspired and positive on the whole. There is still a long way to go and so much to learn about the baffling diseases of PMR and GCA but when I think back to when I was first diagnosed and struggling between 2012 and 2015, there are definite
I just finally got round to reading this and am left feeling more inspired and positive on the whole. There is still a long way to go and so much to learn about the baffling diseases of PMR and GCA but when I think back to when I was first diagnosed and struggling between 2012 and 2015, there are definite
tangocharlie
in
PMRGCAuk
1 year ago
follow up !!!
just back home from mD Anderson Both bone marrow and PET scan showed no detected cancer Hopefully this will last a long time Thanks everyone 😎
just back home from mD Anderson Both bone marrow and PET scan showed no detected cancer Hopefully this will last a long time Thanks everyone 😎
Cactusroadster
in
CLL Support
2 years ago
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