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Permanent atrial fibrillation
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I'm excited to be leaving for The International PBC Summit in Edinburgh the end of next week. I'll be bringing back as much information to you as I can about research being done for the cause of PBC, itching and fatigue. All of these issues have impacted all of our lives to some degree. Many of us have
I'm excited to be leaving for The International PBC Summit in Edinburgh the end of next week. I'll be bringing back as much information to you as I can about research being done for the cause of PBC, itching and fatigue. All of these issues have impacted all of our lives to some degree. Many of us have
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
Falling platelet counts after achieving Undetectable Minimal Residual Diseaese
Hello folks I completed a course of Venetoclax & Obinituzumab (Gazyva) last March, and happily achieved UMRD (undetectable minimal residual disease). I'm part of a clinical trial, which stopped treatment once I reached UMRD (with a minimum of 6-9 months of treatment); I was treated for 9 months. Have
Hello folks I completed a course of Venetoclax & Obinituzumab (Gazyva) last March, and happily achieved UMRD (undetectable minimal residual disease). I'm part of a clinical trial, which stopped treatment once I reached UMRD (with a minimum of 6-9 months of treatment); I was treated for 9 months. Have
DinosaurDad
in
CLL Support
3 months ago
Migraine on tapering
Just a quick question - I began DL's slow taper from 9mg to 8.5mg on Saturday 18/3/23 and suffered a migraine aura so took a sumatriptans tablet. Gradually recovered over the next couple of days. The second reduction to 8.5mg is today (22/3/23) and, again, I have had a migraine aura and taken sumatriptans
Just a quick question - I began DL's slow taper from 9mg to 8.5mg on Saturday 18/3/23 and suffered a migraine aura so took a sumatriptans tablet. Gradually recovered over the next couple of days. The second reduction to 8.5mg is today (22/3/23) and, again, I have had a migraine aura and taken sumatriptans
Miserere
in
PMRGCAuk
1 year ago
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OCD Institute - Houston
My adult son was recently referred to the OCD Institute in Houston for residential treatment. Has anyone had success there or can anyone share their experience there? He has been in outpatient treatment since the beginning of January and so far it is not working well. We are looking for any help we can
My adult son was recently referred to the OCD Institute in Houston for residential treatment. Has anyone had success there or can anyone share their experience there? He has been in outpatient treatment since the beginning of January and so far it is not working well. We are looking for any help we can
BrooksideBliss
in
My OCD Community
3 months ago
slow release liothyronine
Like many people on here I miss the wise opinion and knowledge of Diogenes enormously. I know he was working on the formulation of a slow release liothyronine which was in clinical trial. Does anyone have an update on this? is it any closer? In the meantime I am tempted to try sustained release compounded
Like many people on here I miss the wise opinion and knowledge of Diogenes enormously. I know he was working on the formulation of a slow release liothyronine which was in clinical trial. Does anyone have an update on this? is it any closer? In the meantime I am tempted to try sustained release compounded
Mollyfan
in
Thyroid UK
3 months ago
AFIB ATTACK TRIGGER???
Has anyone been AFIB free for several months on Flecainide, but then get an attack when you have a 100.5 fever and cold sweats (not feeling well)??? Just wondering if anyone has had an experience similar to mine? Thank you for any and all replies as I love you all!!!!!!!
Has anyone been AFIB free for several months on Flecainide, but then get an attack when you have a 100.5 fever and cold sweats (not feeling well)??? Just wondering if anyone has had an experience similar to mine? Thank you for any and all replies as I love you all!!!!!!!
Jpot34
in
AF Association
1 year ago
Smell Training (Olfactory Training)
Smell Training (Olfactory Training)
March 18, 2024
This post is about Smell Training and is building on an earlier HU post “Olfactory enrichment improves olfactory ability in humans with olfactory loss due to Parkinson’s”
https://healthunlocked.com/cure-parkinsons/posts/150588869/olfactory-enrichment-improves-olfactory-ability-in-humans-with-olfactory-loss-due-to-parkinson-s
Smell Training (Olfactory Training)
March 18, 2024
This post is about Smell Training and is building on an earlier HU post “Olfactory enrichment improves olfactory ability in humans with olfactory loss due to Parkinson’s”
https://healthunlocked.com/cure-parkinsons/posts/150588869/olfactory-enrichment-improves-olfactory-ability-in-humans-with-olfactory-loss-due-to-parkinson-s
Bolt_Upright
in
Cure Parkinson's
3 months ago
Seeking anyone familiar with aggressive small cell neuroendocrine prostate cancer and/or with lurbinectedin as 2nd line chemotherapy.
A needle biopsy Oct 15, 2023 revealed that at least some of my metastatic prostate cancer in a lymph node had mutated to an aggressive small cell neuroendocrine prostate cancer. (notable for CDK N1B, RB1, Tp53 mutations. MSS, TMB low) I had 4 cycles of carboplatin/etoposide chemotherapy, which ended
A needle biopsy Oct 15, 2023 revealed that at least some of my metastatic prostate cancer in a lymph node had mutated to an aggressive small cell neuroendocrine prostate cancer. (notable for CDK N1B, RB1, Tp53 mutations. MSS, TMB low) I had 4 cycles of carboplatin/etoposide chemotherapy, which ended
silver5
in
Advanced Prostate Cancer
3 months ago
Weighing the pros and possible risks of treatment holiday.
I am looking for reliable articles (not too scientific please). We will be discussing w oncologist this week and again with his clinical trial people next month. My husband's only treatment has been 1st & 2nd generation hormone therapy (Eligard & Darolutamide) for 20 months. He reached >.1 nadar
I am looking for reliable articles (not too scientific please). We will be discussing w oncologist this week and again with his clinical trial people next month. My husband's only treatment has been 1st & 2nd generation hormone therapy (Eligard & Darolutamide) for 20 months. He reached >.1 nadar
Decktime
in
Advanced Prostate Cancer
3 months ago
Webinar:Do magnifying intraocular lenses work for people with macular disease?
Magnifying lenses, which are implanted are available to help those with macular disease see better. But, no trials have been done to prove how useful they are or who they are most suitable for. Dr Julie Silvestri from Royal Hospitals, Belfast, will be joining us for our first webinar of the month to
Magnifying lenses, which are implanted are available to help those with macular disease see better. But, no trials have been done to prove how useful they are or who they are most suitable for. Dr Julie Silvestri from Royal Hospitals, Belfast, will be joining us for our first webinar of the month to
Carol_MacularSociety
Partner
in
Macular Society
3 months ago
Advice please
Went to see my EP last night and he gave me news I didn't want to hear.I am on sotalol 40mg X3 per day plus apixaban. I have been having episodes about every 4 months but this time I have had 3 episodes, I believe triggered by the covid vaccine and the other time when I was away eating rich food, not
Went to see my EP last night and he gave me news I didn't want to hear.I am on sotalol 40mg X3 per day plus apixaban. I have been having episodes about every 4 months but this time I have had 3 episodes, I believe triggered by the covid vaccine and the other time when I was away eating rich food, not
Karendeena
in
AF Association
1 year ago
Chemo or clinical trial?
Am scheduled for bone biopsy of met(s) from my hip tomorrow. Stopped Pluvicto after #3 due to rising PSA and progression. Hoping to get next gen. sequencing from biopsy sample and (maybe) functional testing. But, it's going to take some time to get results and I feel I can't wait. Pain has been getting
Am scheduled for bone biopsy of met(s) from my hip tomorrow. Stopped Pluvicto after #3 due to rising PSA and progression. Hoping to get next gen. sequencing from biopsy sample and (maybe) functional testing. But, it's going to take some time to get results and I feel I can't wait. Pain has been getting
rsgdmd
in
Advanced Prostate Cancer
3 months ago
Berberine - does anyone have experience of taking this for PAF?
I’m going to have a pace and ablate in a few weeks time, so I started watching videos about it by the York Cadiologist (great guy!). On one of the videos I tripped across a comment where a chap said he had to stop taking Flecainide because of the adverse side effects (that’s me too!) and had started
I’m going to have a pace and ablate in a few weeks time, so I started watching videos about it by the York Cadiologist (great guy!). On one of the videos I tripped across a comment where a chap said he had to stop taking Flecainide because of the adverse side effects (that’s me too!) and had started
Dippy22
in
AF Association
1 year ago
Saxon clinical trial
Hello all, I was recently enrolled in the Saxon clinical trial combining Xofigo with SBRT. Is anyone else in that trial? Diagnosed with prostate Cancer July 2014, Gleason 7 (4+3) in 6 of 12 . After Radiation treatments my PSA was undetectable until July 2019. It rose to 3.9 in January 2020
Hello all, I was recently enrolled in the Saxon clinical trial combining Xofigo with SBRT. Is anyone else in that trial? Diagnosed with prostate Cancer July 2014, Gleason 7 (4+3) in 6 of 12 . After Radiation treatments my PSA was undetectable until July 2019. It rose to 3.9 in January 2020
58Willys
in
Advanced Prostate Cancer
3 months ago
The Importance of Peer-Review
Even renowned oncologists can fall in love with their data. It takes the impartial analysis of an outside expert to see the confirmation bias that may be blinding the lead investigator of a Phase 3 clinical trial. Although Phase 3 trials are Level 1 evidence, they still must be graded by outside experts
Even renowned oncologists can fall in love with their data. It takes the impartial analysis of an outside expert to see the confirmation bias that may be blinding the lead investigator of a Phase 3 clinical trial. Although Phase 3 trials are Level 1 evidence, they still must be graded by outside experts
Tall_Allen
in
Advanced Prostate Cancer
3 months ago
How long on Entresto
I would like to ask what’s the longest anyone on this post has been on Entresto. My cardiologist has patients who started on it back when the clinical trials began in 2015 and doing quite well.
I would like to ask what’s the longest anyone on this post has been on Entresto. My cardiologist has patients who started on it back when the clinical trials began in 2015 and doing quite well.
am1875
in
British Heart Foundation
3 months ago
Upcoming TTALC Workshop 3/23/24
Did you know? Clinical trials provide new treatment options, especially if existing treatments have not worked. You may also receive more attentive care in a clinical trial study because it requires close observation and follow-up from a team of doctors. Join our live interactive workshop to learn more
Did you know? Clinical trials provide new treatment options, especially if existing treatments have not worked. You may also receive more attentive care in a clinical trial study because it requires close observation and follow-up from a team of doctors. Join our live interactive workshop to learn more
AllysonBlueFaery
Community Ambassador
in
Blue Faery Liver Cancer
3 months ago
Clinical Trial Starts Today
Morning folks, Sitting in clinic at Sarah Cannon Research Institute in Nashville getting my first dose of Phase 1 trial of a Xencor drug called XmAb808, which is an antibody that binds to tumor cells and immune cells called T cells. Baseline scans looked decent and all systems are go. Really blessed
Morning folks, Sitting in clinic at Sarah Cannon Research Institute in Nashville getting my first dose of Phase 1 trial of a Xencor drug called XmAb808, which is an antibody that binds to tumor cells and immune cells called T cells. Baseline scans looked decent and all systems are go. Really blessed
Pmann
in
Advanced Prostate Cancer
3 months ago
A different sort of vibrotactile device
Here is a picture of a different sort of vibrotactile device This one is intended for stroke victims. The article, https://www.medscape.com/viewarticle/promising-new-wearable-could-retrain-brain-after-stroke-2024a100044f?ecd=wnl_sci_tech_240306_MSCPEDIT_etid6355241&uac=415290AR&impID=6355241 says
Here is a picture of a different sort of vibrotactile device This one is intended for stroke victims. The article, https://www.medscape.com/viewarticle/promising-new-wearable-could-retrain-brain-after-stroke-2024a100044f?ecd=wnl_sci_tech_240306_MSCPEDIT_etid6355241&uac=415290AR&impID=6355241 says
Ctime
in
Cure Parkinson's
3 months ago
Way to slow /stop metastases
Dear Friends, This is hot of the press. One of the mechanism of metastatic spread is that tiny pieces of broken cancer cells circulate in blood ..they contain Cancer cell DNA and are called Chromatin pieces. These tiny pieces of chromatin enter into healthy cell and transform them into Cancer cells.
Dear Friends, This is hot of the press. One of the mechanism of metastatic spread is that tiny pieces of broken cancer cells circulate in blood ..they contain Cancer cell DNA and are called Chromatin pieces. These tiny pieces of chromatin enter into healthy cell and transform them into Cancer cells.
LearnAll
in
Advanced Prostate Cancer
3 months ago
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