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Pain everywhere.
I've been 10+ yrs searching for answers. I had some bladder problems in 2013. Doctors did surgery. I almost died. Apparently they told me my blood vessels looked funny. They didn't know if they "knicked " me or what but I lost 8 pints of blood very quickly. They barely got me transfusion in time. I chalked
I've been 10+ yrs searching for answers. I had some bladder problems in 2013. Doctors did surgery. I almost died. Apparently they told me my blood vessels looked funny. They didn't know if they "knicked " me or what but I lost 8 pints of blood very quickly. They barely got me transfusion in time. I chalked
CountryGirl9636
in
Partners for Behcet's
5 months ago
How you can help make ibrutinib plus venetoclax fixed duration therapy a reality for Australians with previously untreated CLL
In Australia, no new medicine can be listed on the Pharmaceutical Benefits Scheme (PBS) unless it has first been recommended by the Pharmaceutical Benefits Advisory Committee (PBAC). In March 2024, PBAC will again consider a submission to recommend a 15-month combination therapy of ibrutinib plus venetoclax
In Australia, no new medicine can be listed on the Pharmaceutical Benefits Scheme (PBS) unless it has first been recommended by the Pharmaceutical Benefits Advisory Committee (PBAC). In March 2024, PBAC will again consider a submission to recommend a 15-month combination therapy of ibrutinib plus venetoclax
CLLerinOz
Volunteer
in
CLL Support
5 months ago
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks
From MedPage Today, by Charles Bankhead, Senior Editor, MedPage Today November 28, 2023, Last Updated November 29, 2023. Posted FYI without comment: [i]
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks, agency
From MedPage Today, by Charles Bankhead, Senior Editor, MedPage Today November 28, 2023, Last Updated November 29, 2023. Posted FYI without comment: [i]
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks, agency
cujoe
in
CLL Support
5 months ago
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Genetic therapy: for solid malignancy hopefully soon
ok, I post them also because they are fellow Italians! But the platform is very promising even if clinical use has been approved only for glioma and glioblastoma at the moment. But there are clinical trials going on for solid tumors, prostate included. https://www.genenta.com/wp-content/uploads/2021
ok, I post them also because they are fellow Italians! But the platform is very promising even if clinical use has been approved only for glioma and glioblastoma at the moment. But there are clinical trials going on for solid tumors, prostate included. https://www.genenta.com/wp-content/uploads/2021
Maxone73
in
Advanced Prostate Cancer
5 months ago
coming off rotigotine patches
Hello, First post… Could someone please share their experience coming off rotigotine patches, and what helped you throughout this experience? Been on rotigotine for 4 or so years, and more recently started experiencing augmentation. Was on 2mg, in August GP suggested increasing to 3mg but that hardly
Hello, First post… Could someone please share their experience coming off rotigotine patches, and what helped you throughout this experience? Been on rotigotine for 4 or so years, and more recently started experiencing augmentation. Was on 2mg, in August GP suggested increasing to 3mg but that hardly
Artifcial
in
Restless Legs Syndrome
5 months ago
Where Are My People?
I was diagnosed with major depressive disorder over 5 years ago. It started with speech therapy but didn’t seem to help. I’ve been medicated since then but it doesn’t feel like it’s doing its job anymore. The last couple years have been a rollercoaster with changing meds multiple times, worsening depression
I was diagnosed with major depressive disorder over 5 years ago. It started with speech therapy but didn’t seem to help. I’ve been medicated since then but it doesn’t feel like it’s doing its job anymore. The last couple years have been a rollercoaster with changing meds multiple times, worsening depression
RottieFlood37
in
Major Depressive Disorder (MDD) Support
5 months ago
COMBINATION THERAPY IS NOW UNDER REVIEW
This review indicates how and why combination therapy may be used in treatment. Interesting in itself, but another example of cherry-picking evidence ( we aren't mentioned in spite of starting this concept in 2012. Good cliquish admission where the "nonprofessionals"are best kept well out of the limelight
This review indicates how and why combination therapy may be used in treatment. Interesting in itself, but another example of cherry-picking evidence ( we aren't mentioned in spite of starting this concept in 2012. Good cliquish admission where the "nonprofessionals"are best kept well out of the limelight
diogenes
in
Thyroid UK
5 months ago
Does this sound like Fibromyalgia?
Years of a seasonal skin rash (winter is worse) that no dermatologist can diagnose, starting
light
therapy
soon as they don't know what else to offer (looking forward to that actaully, in this cold weather!) IBS symtoms for over 2 years. Colonsocopy negative. Scan normal, mild fatty liver.
Years of a seasonal skin rash (winter is worse) that no dermatologist can diagnose, starting
light
therapy
soon as they don't know what else to offer (looking forward to that actaully, in this cold weather!) IBS symtoms for over 2 years. Colonsocopy negative. Scan normal, mild fatty liver.
Classigreen
in
Fibromyalgia Action UK
1 year ago
some great news….
My son will be turning 4 this January and that in and of itself is great news. Nothing is scarier than having just given birth and not knowing what the future of your precious new child will hold, like simply living. my son was born with PUV and severe reflux bilaterally. Of course there was renal
My son will be turning 4 this January and that in and of itself is great news. Nothing is scarier than having just given birth and not knowing what the future of your precious new child will hold, like simply living. my son was born with PUV and severe reflux bilaterally. Of course there was renal
MotherofBarbearians
in
Parents of Children with Kidney Disease
5 months ago
Newly diagnosed metastatic PC treatment options
Hi, I'm 68 years old. Here are the key points in my story so far: In July 2023 a blood test showed a PSA value of 45. On September 26 2023, prostate MRI showed a dominant tumor in the prostate with extension into the right seminal vesicle. Also the fat plane between the rectum and prostate is lost
Hi, I'm 68 years old. Here are the key points in my story so far: In July 2023 a blood test showed a PSA value of 45. On September 26 2023, prostate MRI showed a dominant tumor in the prostate with extension into the right seminal vesicle. Also the fat plane between the rectum and prostate is lost
ShorePine
in
Advanced Prostate Cancer
5 months ago
Robert
Robert was diagnosed with Parkinson’s in 2018 PSP in 2021 progression was slow at first. Last year Robert was walking with a cane and dragging his feet. In September he began to fall daily sometimes more. He got weaker every day and finally allowed me to call a rescue. What followed was a whirlwind
Robert was diagnosed with Parkinson’s in 2018 PSP in 2021 progression was slow at first. Last year Robert was walking with a cane and dragging his feet. In September he began to fall daily sometimes more. He got weaker every day and finally allowed me to call a rescue. What followed was a whirlwind
Wrski
in
PSP Association
6 months ago
Care Home response
Please can I thank everyone who sent a response to my original post. It is encouraging to hear from so many of you who have similar stories. My husband is responding well to the care home and the staff are lovely. I have had a lot of support from the health professionals , consultant, physio, speech
Please can I thank everyone who sent a response to my original post. It is encouraging to hear from so many of you who have similar stories. My husband is responding well to the care home and the staff are lovely. I have had a lot of support from the health professionals , consultant, physio, speech
Wybert
in
PSP Association
6 months ago
Extremely interesting....
The Swinging Pendulum in Treatment for Hypothyroidism: From (and Toward?) Combination Therapy - PMC https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6629976/
The Swinging Pendulum in Treatment for Hypothyroidism: From (and Toward?) Combination Therapy - PMC https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6629976/
Easylover
in
Thyroid UK
6 months ago
Combination therapy T4 + T3
Hi, since 2 weeks I started to take 10 mcg T3/ 2 days on top of my daily levothyroxine. I remember my periodic cycle was 24 days instead of 28 days when TSH was rising before. Today I was surprised to get my period at d23?! I am confused again. Was expecting the opposite.
Hi, since 2 weeks I started to take 10 mcg T3/ 2 days on top of my daily levothyroxine. I remember my periodic cycle was 24 days instead of 28 days when TSH was rising before. Today I was surprised to get my period at d23?! I am confused again. Was expecting the opposite.
Balou23
in
Thyroid UK
6 months ago
Covid advice
Has anybody got any advice on how to deal with Covid when on combination therapy? I've just gone down with it for the first time and I'm wondering if I should just continue as normal. Have a pretty high fever and heart rate...wd the T3 exacerbate this?
Has anybody got any advice on how to deal with Covid when on combination therapy? I've just gone down with it for the first time and I'm wondering if I should just continue as normal. Have a pretty high fever and heart rate...wd the T3 exacerbate this?
SilverSavvy
in
Thyroid UK
6 months ago
Update on trametinib (Mekinist) for low grade serous ovarian cancer
Good morning everyone We are delighted that NHS England has recommended that the MEK-inhibitor trametinib (Mekinist) should be routinely available as an off-label treatment option for adults with recurrent or progressive low grade serous ovarian cancer (LGSOC). This is for people who have received
Good morning everyone We are delighted that NHS England has recommended that the MEK-inhibitor trametinib (Mekinist) should be routinely available as an off-label treatment option for adults with recurrent or progressive low grade serous ovarian cancer (LGSOC). This is for people who have received
OvacomeSupport
My Ovacome Team
in
My Ovacome
6 months ago
Occupational Therapy ‘drop-in’ event
Occupational Therapists play an important role in supporting people living with ataxia! We do occupations from the moment we’re born – they’re essential to living. They give our lives meaning and purpose, they shape who we are, and help us connect with others. This week is Occupational (OT) week!
Occupational Therapists play an important role in supporting people living with ataxia! We do occupations from the moment we’re born – they’re essential to living. They give our lives meaning and purpose, they shape who we are, and help us connect with others. This week is Occupational (OT) week!
wobblybee
in
Ataxia UK
6 months ago
Aphasia
My husband is one month out of his tumor being 100% removed. His aphasia seems to be worse then it was 2 weeks out from surgery. He just started speech therapy this week. Is the decline normal?
My husband is one month out of his tumor being 100% removed. His aphasia seems to be worse then it was 2 weeks out from surgery. He just started speech therapy this week. Is the decline normal?
Nylo
in
Glioblastoma Support
6 months ago
Replace or reorganize neurons
Can someone explain :Does the parkinson's glove therapy assume we don't have a loss of Dopa. Neurons but they just need to be reorganized. Via vibration Where gene therapy assume we have a loss of Neurons that need to be replaced ? Which is it, replace or reorganize?
Can someone explain :Does the parkinson's glove therapy assume we don't have a loss of Dopa. Neurons but they just need to be reorganized. Via vibration Where gene therapy assume we have a loss of Neurons that need to be replaced ? Which is it, replace or reorganize?
bigl62
in
Cure Parkinson's
6 months ago
Targeted Gene Therapy for Symptom Relief in Parkinson’s Disease
Very early, still a looooong way out, and results were only in animal models, but something to keep an eye on. https://www.brainpost.co/weekly-brainpost/2023/11/7/targeted-gene-therapy-for-symptom-relief-in-parkinsons-disease
Very early, still a looooong way out, and results were only in animal models, but something to keep an eye on. https://www.brainpost.co/weekly-brainpost/2023/11/7/targeted-gene-therapy-for-symptom-relief-in-parkinsons-disease
Neurosmith
in
Cure Parkinson's
6 months ago
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