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B1 History April 2020
ALERT 2: Dr. Costantini office: Dear all, I unfortunately have to share some sad news with you all. As you all know we submitted to the Michael J Fox Foundation a project proposal for a clinical trial involving the High Dose Thiamine treatment. Although the pre-proposal was invited for further development
ALERT 2: Dr. Costantini office: Dear all, I unfortunately have to share some sad news with you all. As you all know we submitted to the Michael J Fox Foundation a project proposal for a clinical trial involving the High Dose Thiamine treatment. Although the pre-proposal was invited for further development
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Cure Parkinson's
3 years ago
Update, MRI Brain
Hi everyone, Last Wednesday I had the MRI of my brain after a head CT had shown some enhancements. Well today I had a call and it has confirmed these enhancements are brain metastases, some are calcified with scar tissue so they must have been there for some time and responded to treatments I've had
Hi everyone, Last Wednesday I had the MRI of my brain after a head CT had shown some enhancements. Well today I had a call and it has confirmed these enhancements are brain metastases, some are calcified with scar tissue so they must have been there for some time and responded to treatments I've had
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SHARE Metastatic Breast Cancer
3 years ago
Covid vaccination, thrombosis and GHIC
Covid vaccination, thrombosis and GHIC Arvind Kaul Consultant Rheumatologist, St. George’s Hospital, London and Medical Expert for GHIC March 14th, 2021 What are the concerns about the AstraZeneca coronavirus vaccine? Patients with Antiphospholipid Syndrome will have read with concern reports in
Covid vaccination, thrombosis and GHIC Arvind Kaul Consultant Rheumatologist, St. George’s Hospital, London and Medical Expert for GHIC March 14th, 2021 What are the concerns about the AstraZeneca coronavirus vaccine? Patients with Antiphospholipid Syndrome will have read with concern reports in
lupus-support1
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LUpus Patients Understanding and Support
3 years ago
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Covid Vaccination, Thrombosis and GHIC
Covid vaccination, thrombosis and GHIC Arvind Kaul Consultant Rheumatologist, St. George’s Hospital, London and Medical Expert for GHIC March 14th, 2021 What are the concerns about the AstraZeneca coronavirus vaccine? Patients with Antiphospholipid Syndrome will have read with concern reports in the
Covid vaccination, thrombosis and GHIC Arvind Kaul Consultant Rheumatologist, St. George’s Hospital, London and Medical Expert for GHIC March 14th, 2021 What are the concerns about the AstraZeneca coronavirus vaccine? Patients with Antiphospholipid Syndrome will have read with concern reports in the
MaryF
Administrator
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Hughes Syndrome APS Forum
3 years ago
Clinical Trial
Hi everyone. I’ve started a clinical trial in London again - my last one was 3 years ago - unfortunately I got the placebo which was disappointing as everyone on the trial felt so well. Anyway this one they change my meds to Trelegy and I take tablets - first time I’ve ever done tablets so I’ll be
Hi everyone. I’ve started a clinical trial in London again - my last one was 3 years ago - unfortunately I got the placebo which was disappointing as everyone on the trial felt so well. Anyway this one they change my meds to Trelegy and I take tablets - first time I’ve ever done tablets so I’ll be
pepparuby1
in
Lung Conditions Community Forum
3 years ago
Mission Accomplished; Return to HU
What a year! Covid or not, I focused on the necessary task of relocating my husband and myself to another city in order to be closer to family. He has Lewy Body Dementia, and I have PD, so it's a no-brainer, right?! Selling a house, buying a house, downsizing, packing, moving are stressful at best
What a year! Covid or not, I focused on the necessary task of relocating my husband and myself to another city in order to be closer to family. He has Lewy Body Dementia, and I have PD, so it's a no-brainer, right?! Selling a house, buying a house, downsizing, packing, moving are stressful at best
katherinecompton22
in
Cure Parkinson's
3 years ago
Scientists move closer to developing 'game-changing' test to diagnose Parkinson's
FYI https://medicalxpress.com/news/2021-03-scientists-closer-game-changing-parkinson.html Immunohistochemistry for alpha-synuclein showing positive staining (brown) of an intraneural Lewy-body in the Substantia nigra in Parkinson's disease. Credit: Wikipedia Results published today show it is possible
FYI https://medicalxpress.com/news/2021-03-scientists-closer-game-changing-parkinson.html Immunohistochemistry for alpha-synuclein showing positive staining (brown) of an intraneural Lewy-body in the Substantia nigra in Parkinson's disease. Credit: Wikipedia Results published today show it is possible
John_morris71
in
Cure Parkinson's
3 years ago
Nobody Wants Cancer. But a ‘Big C’ Label Has Surprising Upsides.
« “The cancer designation did open up significant new funding opportunities, for example from the National Cancer Institute,” said Barbara Van Husen, board chair of the MPN Research Foundation. “It has definitely accelerated research.” There are more than 200 clinical trials underway for various MPNs
« “The cancer designation did open up significant new funding opportunities, for example from the National Cancer Institute,” said Barbara Van Husen, board chair of the MPN Research Foundation. “It has definitely accelerated research.” There are more than 200 clinical trials underway for various MPNs
Manouche
in
MPN Voice
3 years ago
NICE not playing nice again.
UK’s NICE Advises Against NHS Use of Lynparza for Prostate Cancer
[i]{Olaparib, sold under the brand name Lynparza, is a medication for the maintenance treatment of BRCA-mutated advanced ovarian cancer in adults. It is a PARP inhibitor, inhibiting poly ADP ribose polymerase (PARP), an enzyme involved
UK’s NICE Advises Against NHS Use of Lynparza for Prostate Cancer
[i]{Olaparib, sold under the brand name Lynparza, is a medication for the maintenance treatment of BRCA-mutated advanced ovarian cancer in adults. It is a PARP inhibitor, inhibiting poly ADP ribose polymerase (PARP), an enzyme involved
pjoshea13
in
Advanced Prostate Cancer
3 years ago
Top Institutes doing Parkinson’s Research and Treatment
Esteemed colleagues ( in our own self care, LOL), What institutes (internationally) do you see as the leaders in EITHER traditional or non-traditional treatment? Who leads in helping their patients identify traditional, emerging or alternative approaches to treatment? Who is plugged in to knowing the
Esteemed colleagues ( in our own self care, LOL), What institutes (internationally) do you see as the leaders in EITHER traditional or non-traditional treatment? Who leads in helping their patients identify traditional, emerging or alternative approaches to treatment? Who is plugged in to knowing the
GinnyBerry
in
Cure Parkinson's
3 years ago
The glaucoma treatment that only takes seconds
Belkin Laser’s Eagle device delivers healing laser beams quickly and without touching the patient; any ophthalmologist can use it. By Brian Blum MARCH 10, 2021 One hundred and forty million people suffer from glaucoma, a degenerative eye disease that can lead to blindness. It is most prevalent among
Belkin Laser’s Eagle device delivers healing laser beams quickly and without touching the patient; any ophthalmologist can use it. By Brian Blum MARCH 10, 2021 One hundred and forty million people suffer from glaucoma, a degenerative eye disease that can lead to blindness. It is most prevalent among
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
3 years ago
V & O combination therapy
..... i must add to my previous posts: I asked my Consultant how many patients he has treated with this combo. His answer shocked me: He said 55 patients. I was expecting 2 or 3 more zeros after that number. That is both in The London Clinic and Barts but excluding clinical trials.
..... i must add to my previous posts: I asked my Consultant how many patients he has treated with this combo. His answer shocked me: He said 55 patients. I was expecting 2 or 3 more zeros after that number. That is both in The London Clinic and Barts but excluding clinical trials.
RitaBa
in
CLL Support
3 years ago
The roller coaster ride with its twists and turns continues...
So, after my brothes failure of ARV -110 with an initial big drop in PSA and then steady climb back up, we just received another report from Foundation One that shows growth in the initial mutations along with several other newly developed mutations. His Dana Farber doctor has decided to put him on
So, after my brothes failure of ARV -110 with an initial big drop in PSA and then steady climb back up, we just received another report from Foundation One that shows growth in the initial mutations along with several other newly developed mutations. His Dana Farber doctor has decided to put him on
Faith1111
in
Advanced Prostate Cancer
3 years ago
Update after BMB
It's been awhile since my first BMB, but have been recovering & processing the results. I had a hard time with sedation & took me some time to reset myself from that ordeal (getting sick, having two veins blow out with blood draws & iv). I lost weight & only weighed at 104 lbs that day! I was diagnosed
It's been awhile since my first BMB, but have been recovering & processing the results. I had a hard time with sedation & took me some time to reset myself from that ordeal (getting sick, having two veins blow out with blood draws & iv). I lost weight & only weighed at 104 lbs that day! I was diagnosed
Androg
in
MPN Voice
3 years ago
FDA Updates Approval for Lobrena to First Line Treatment for Advanced NSCLC Patients with Changes in ALK
On March 3rd, 2021, the Food and Drug Administration (FDA) approved Lobrena (lorlatinib) for the first line treatment of non-small cell lung cancer (NSCLC) which has spread outside of the lungs that has a change in ALK identified by an FDA approved test. The FDA based their approval on the results of
On March 3rd, 2021, the Food and Drug Administration (FDA) approved Lobrena (lorlatinib) for the first line treatment of non-small cell lung cancer (NSCLC) which has spread outside of the lungs that has a change in ALK identified by an FDA approved test. The FDA based their approval on the results of
Miranda_GO2
Partner
in
Lung Cancer Support
3 years ago
PolkaDot Mama
Ya'll, it's been a night of mixed feelings. I was blessed to join the Polka Dot Mama Melanoma Research Foundation's Taste For A Cure Gala virtually tonight. There I "saw" fellow advocate Tracy Callahan https://polkadotmama.org/our-story/ open her home kitchen to raise money again for melanoma awareness
Ya'll, it's been a night of mixed feelings. I was blessed to join the Polka Dot Mama Melanoma Research Foundation's Taste For A Cure Gala virtually tonight. There I "saw" fellow advocate Tracy Callahan https://polkadotmama.org/our-story/ open her home kitchen to raise money again for melanoma awareness
missyrand
Ambassador
in
Melanoma Caregivers
3 years ago
Stem cells reprised
There have been a few stem cell posts recently. We could do with someone like Simon at science of Parkinsons, tieing it all together and summarising the state of play. The most promising trial i am aware of at present is the Kyoto human clinical trial which also carried out trials on monkeys as part
There have been a few stem cell posts recently. We could do with someone like Simon at science of Parkinsons, tieing it all together and summarising the state of play. The most promising trial i am aware of at present is the Kyoto human clinical trial which also carried out trials on monkeys as part
WinnieThePoo
in
Cure Parkinson's
3 years ago
Moving on to Provenge
Been a long time since I posted. I’ve been in a clinical trial that began in 2014, that was to study the use of TAK-700 with Eligard/Lupron vs the SOC (Eligard/Lupron) plus daily bicalutamide. It has served me well, as I’ve been in the SOC arm, and have made it 6.5 years with just small increases in
Been a long time since I posted. I’ve been in a clinical trial that began in 2014, that was to study the use of TAK-700 with Eligard/Lupron vs the SOC (Eligard/Lupron) plus daily bicalutamide. It has served me well, as I’ve been in the SOC arm, and have made it 6.5 years with just small increases in
tdouds
in
Advanced Prostate Cancer
3 years ago
Sesame seed extract shows promise for Parkinson’s
Sesame seed husks, a waste product from the manufacture of sesame seed oil, are rich in the antioxidant sesaminol. Scientists have found that sesaminol protects nerve cells in laboratory cultures from damage and prevents Parkinson’s symptoms in an animal model of the disease. Clinical trials are necessary
Sesame seed husks, a waste product from the manufacture of sesame seed oil, are rich in the antioxidant sesaminol. Scientists have found that sesaminol protects nerve cells in laboratory cultures from damage and prevents Parkinson’s symptoms in an animal model of the disease. Clinical trials are necessary
Farooqji
in
Cure Parkinson's
3 years ago
Reporting back on the ARV/110 trial
Four weeks after starting the ARV/110 clinical trial, my brother‘s PSA dropped from 15 to 1.7. It was wonderful news and the doctor was very happy. Unfortunately, that did not last. The next four PSA tests showed it going up each time to 6.1. The scans showed progression. He Stopped the trial two weeks
Four weeks after starting the ARV/110 clinical trial, my brother‘s PSA dropped from 15 to 1.7. It was wonderful news and the doctor was very happy. Unfortunately, that did not last. The next four PSA tests showed it going up each time to 6.1. The scans showed progression. He Stopped the trial two weeks
Faith1111
in
Advanced Prostate Cancer
3 years ago
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