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to anyone new to the group.....
Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. If you are new to your diagnosis, first of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop
Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. If you are new to your diagnosis, first of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
Wednesday's Word
[i]
encephalopathy
[/i] This is a term used for a condition of toxic brain dysfunction. In those with PBC, it is known as hepatic encephalopathy. This occurs in advanced cirrhosis as the liver fails to filter the toxins. It occurs rarely, a liver transplant being the only help. HE (Hepatic Encephalopathy
[i]
encephalopathy
[/i] This is a term used for a condition of toxic brain dysfunction. In those with PBC, it is known as hepatic encephalopathy. This occurs in advanced cirrhosis as the liver fails to filter the toxins. It occurs rarely, a liver transplant being the only help. HE (Hepatic Encephalopathy
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
Needing answers....
Emergency OHS in May 2023 to deal with Aortic Aneurysm, tear, hole, clot and valve replacement. Been back and forth to local A&E since with Pneumonia, atrial fib and chest pain. Still having crushing chest and neck pain, problems with speech vocal palsy, exhaustion and light headedness. Just had follow
Emergency OHS in May 2023 to deal with Aortic Aneurysm, tear, hole, clot and valve replacement. Been back and forth to local A&E since with Pneumonia, atrial fib and chest pain. Still having crushing chest and neck pain, problems with speech vocal palsy, exhaustion and light headedness. Just had follow
Hugomum
in
British Heart Foundation
11 months ago
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Organ Donation for Transplant and Research
This post is talking about Organ Donation upon Death, so please take care to choose to read on further.
I recently went down to the Blood and Transplant Service Head Office in Bristol and attended a workshop on the importance of organ research. There were four of us fellow liver transplantees
This post is talking about Organ Donation upon Death, so please take care to choose to read on further.
I recently went down to the Blood and Transplant Service Head Office in Bristol and attended a workshop on the importance of organ research. There were four of us fellow liver transplantees
Richard-Allen
in
British Liver Trust
3 months ago
Thoughts on bloods please
These are my bloods from Jan past….. (due to get them updated shortly) ….but just wanted to know what your thoughts on these are please? I’m not converting T4 to T3 and really struggling. Your thoughts on iron, ferritin etc please would be greatly appreciated. I was given a trial of low dose T3
These are my bloods from Jan past….. (due to get them updated shortly) ….but just wanted to know what your thoughts on these are please? I’m not converting T4 to T3 and really struggling. Your thoughts on iron, ferritin etc please would be greatly appreciated. I was given a trial of low dose T3
FoxyTed
in
Thyroid UK
3 months ago
Scott completed the almost 11,000 mile cycle trip
Some of you have been following Scott's cycle trip around the perimeter of the United States while he was treated for advanced, metastatic prostate cancer. We are happy to report he finished. ESPN OTL did a nice piece summarizing the journey at the following link, hope it encourages and inspires you
Some of you have been following Scott's cycle trip around the perimeter of the United States while he was treated for advanced, metastatic prostate cancer. We are happy to report he finished. ESPN OTL did a nice piece summarizing the journey at the following link, hope it encourages and inspires you
Katyandscott
in
Advanced Prostate Cancer
3 months ago
What does ‘neuroendocrine differentiation' mean in metastatic prostate cancer?
My 71 year old dad has been diagnosed with metastatic prostate cancer with neuroendocrine differentiation - he had absolutely zero symptoms until a lymph node on his neck swelled up. It’s metastasised to his lower spine and sternum too. He’s just had his oncology appointment today and they’re going to
My 71 year old dad has been diagnosed with metastatic prostate cancer with neuroendocrine differentiation - he had absolutely zero symptoms until a lymph node on his neck swelled up. It’s metastasised to his lower spine and sternum too. He’s just had his oncology appointment today and they’re going to
NikkiJayne
in
Advanced Prostate Cancer
3 months ago
Some 'tips' for new/already diagnosed members
If at all possible, see a knowledgable hepatologist Only use trusted and reputable sources for information Don’t google unless the article is current and from a reputable source such as The American Liver Foundation, Canadian PBC Society,The PBC Foundation, LivingWithPBC, Cleveland and Mayo Clinics
If at all possible, see a knowledgable hepatologist Only use trusted and reputable sources for information Don’t google unless the article is current and from a reputable source such as The American Liver Foundation, Canadian PBC Society,The PBC Foundation, LivingWithPBC, Cleveland and Mayo Clinics
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
Part 1 of my liver assessment
Finally got put forward for part 1 of my liver assessment for a possible transplant, it's going to be a very long day on Monday and I will be 7 days post drain, so I will be like a beached whale again, grateful to be finally put forward for it and a bit nervous, any advice on what to expect or what to
Finally got put forward for part 1 of my liver assessment for a possible transplant, it's going to be a very long day on Monday and I will be 7 days post drain, so I will be like a beached whale again, grateful to be finally put forward for it and a bit nervous, any advice on what to expect or what to
bushburywolf
in
British Liver Trust
3 months ago
Syncromune Granted FDA Fast-Track Designation for SYNC-T SV-102 for the Treatment of Metastatic Castrate-Resistant Prostate Cancer (mCRPC)
FORT LAUDERDALE, Fla., July 01, 2024 (GLOBE NEWSWIRE) -- Syncromune® Inc., a clinical-stage biopharmaceutical company dedicated to developing innovative therapies for solid tumor cancers, today announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation for SYNC-T SV
FORT LAUDERDALE, Fla., July 01, 2024 (GLOBE NEWSWIRE) -- Syncromune® Inc., a clinical-stage biopharmaceutical company dedicated to developing innovative therapies for solid tumor cancers, today announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation for SYNC-T SV
God_Loves_Me
in
Advanced Prostate Cancer
3 months ago
What would cause spontaneous prostate stimulation?
What would cause spontaneous prostate stimulation while lying on my back? When I lie down, in a few seconds it feels like someone is manually stimulating my prostate. This lasts for hours at a time and I cannot sleep. This started immediately after a nocturnal emission, and I haven't had one since, even
What would cause spontaneous prostate stimulation while lying on my back? When I lie down, in a few seconds it feels like someone is manually stimulating my prostate. This lasts for hours at a time and I cannot sleep. This started immediately after a nocturnal emission, and I haven't had one since, even
Hidden
in
Men's Health Forum
3 months ago
Estradiol Patch
Hi Everyone My husband (diagnosed November 2013 see bio ) November 2023 prescribed 2nd generation Xtandi as Zoladex injections became castrate resistent, he has no mets. The full dose became intolerable so Onc lowered it to 2 x 80mg, things were going ok psa was dropping good, then started to slow
Hi Everyone My husband (diagnosed November 2013 see bio ) November 2023 prescribed 2nd generation Xtandi as Zoladex injections became castrate resistent, he has no mets. The full dose became intolerable so Onc lowered it to 2 x 80mg, things were going ok psa was dropping good, then started to slow
Knittingque
in
Advanced Prostate Cancer
3 months ago
Antiandrogen Withdrawal Syndrome After Stopping Enzalutamide in Metastatic Castration-Resistant Prostate Cancer: Two Case Reports & Review
https://www.cureus.com/articles/267994-antiandrogen-withdrawal-syndrome-after-discontinuation-of-enzalutamide-in-patients-with-metastatic-castration-resistant-prostate-cancer-a-report-of-two-clinical-cases-and-a-literature-review#!/ Abstract Metastatic prostate cancer treatment is based on
https://www.cureus.com/articles/267994-antiandrogen-withdrawal-syndrome-after-discontinuation-of-enzalutamide-in-patients-with-metastatic-castration-resistant-prostate-cancer-a-report-of-two-clinical-cases-and-a-literature-review#!/ Abstract Metastatic prostate cancer treatment is based on
God_Loves_Me
in
Advanced Prostate Cancer
3 months ago
Protein in urine
I have protein in my urine so where on my blood results would this show up would it be under Albumin level
I have protein in my urine so where on my blood results would this show up would it be under Albumin level
bevgt
in
Early CKD Support
3 months ago
Amino acid urine test finds taurine “wasting”, elevated beta alanine and anserine - anyone else?
hi. Input much appreciated on a mystery . First background: I have had elevated ALT, AST, and GGT for decades along with poor health and some little recognized chronic conditions. I would like to know if anyone else with liver disease has or has heard of the following odd metabolic derangement. I
hi. Input much appreciated on a mystery . First background: I have had elevated ALT, AST, and GGT for decades along with poor health and some little recognized chronic conditions. I would like to know if anyone else with liver disease has or has heard of the following odd metabolic derangement. I
SkinNBones
in
British Liver Trust
3 months ago
Old Guy Update
I was diagnosed in November 2020 with stage 4 Ductal adenocarcinoma of the prostate. I had EBRT and 24 months of ADT which was terminated in October of 2022. My PSA at that time was undetectable and my Testosterone was also undetectable. It’s now July 2024, and my PSA is 0.2 and my Testosterone is 10
I was diagnosed in November 2020 with stage 4 Ductal adenocarcinoma of the prostate. I had EBRT and 24 months of ADT which was terminated in October of 2022. My PSA at that time was undetectable and my Testosterone was also undetectable. It’s now July 2024, and my PSA is 0.2 and my Testosterone is 10
TottenhamMan
in
Advanced Prostate Cancer
3 months ago
Unexpected rise in PSA
Hi guys (and girls) My Husbands psa has been climbing steadily over the past year, got up to 47in Jan , hes six years in with MPC from the start . psa 310, five mets.Had Doxytaxel straight away, now on Abi/Pred/or the last 3 years, plus lupron from the beginning. I have been pushing our OC for spot
Hi guys (and girls) My Husbands psa has been climbing steadily over the past year, got up to 47in Jan , hes six years in with MPC from the start . psa 310, five mets.Had Doxytaxel straight away, now on Abi/Pred/or the last 3 years, plus lupron from the beginning. I have been pushing our OC for spot
16starsky
in
Advanced Prostate Cancer
3 months ago
New Clinical Trial Starting: A Study of AAV2-GDNF in Adults With Moderate Parkinson's Disease (REGENERATE-PD) (REGENERATE-PD)
Here is a link to the trial on clinicaltrials.gov https://clinicaltrials.gov/study/NCT06285643?term=REGENERATE-PD&rank=1 Below is an excerpt from a news article about the trial: A new Phase II trial, REGENERATE-PD, will study AB-1005, an adeno-associated virus 2 (AAV2) glial cell line-derived neurotrophic
Here is a link to the trial on clinicaltrials.gov https://clinicaltrials.gov/study/NCT06285643?term=REGENERATE-PD&rank=1 Below is an excerpt from a news article about the trial: A new Phase II trial, REGENERATE-PD, will study AB-1005, an adeno-associated virus 2 (AAV2) glial cell line-derived neurotrophic
Canddy
in
Cure Parkinson's
3 months ago
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
3 months ago
PSA at 0.285
I had my RP last January but the cancers had sneaked out to my lymph node already (no other met) so my PSA was always detectable. I started hormonal therapy last April and my PSA went down right away. It had been that way till this week ( PSA was up and down, the lowest was 0.02, usually was 0.05.).
I had my RP last January but the cancers had sneaked out to my lymph node already (no other met) so my PSA was always detectable. I started hormonal therapy last April and my PSA went down right away. It had been that way till this week ( PSA was up and down, the lowest was 0.02, usually was 0.05.).
Formosan
in
Advanced Prostate Cancer
3 months ago
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