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Hypomyelination and congenital cataract
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QUICK TAPER; CRP RISING STEADILY; FLARING
As suspected, the very quick taper rheumy thought up (2.5 mg per week til I get to 10, then reducing 1 mg per month), has caused a flare and I'm in pre-PMR pain - almost). Currently at 12 mg but should be down to 9 by now, if I was to go with her guidelines. GP refuses to let me up the pred saying "it's
As suspected, the very quick taper rheumy thought up (2.5 mg per week til I get to 10, then reducing 1 mg per month), has caused a flare and I'm in pre-PMR pain - almost). Currently at 12 mg but should be down to 9 by now, if I was to go with her guidelines. GP refuses to let me up the pred saying "it's
Missus835
in
PMRGCAuk
5 months ago
Biopsy Results
Hi all, went to clinic today and as I suspected, my adenoid cystic carcinoma has metastersised to my lungs. I am told I am being refered to the head & neck cancer in Liverpool where I sent 21yrs ago! Still no idea of treatment until I go for my appointment whenever that may be! Frustrating 3 months on
Hi all, went to clinic today and as I suspected, my adenoid cystic carcinoma has metastersised to my lungs. I am told I am being refered to the head & neck cancer in Liverpool where I sent 21yrs ago! Still no idea of treatment until I go for my appointment whenever that may be! Frustrating 3 months on
Mindini1964
in
The Roy Castle Lung Cancer Foundation
8 months ago
First time Colonoscopy
I have my first colonoscopy on Thursday the 14th. I have been given Picolax. I am concerned about the prep as my friend told me you don't have time to get up the stairs to the toilet, and I should stay upstairs after taking the prep solution; is this correct? I'm really not sure about the sedative
I have my first colonoscopy on Thursday the 14th. I have been given Picolax. I am concerned about the prep as my friend told me you don't have time to get up the stairs to the toilet, and I should stay upstairs after taking the prep solution; is this correct? I'm really not sure about the sedative
Lesleyr14
in
Colon Cancer Connected
5 months ago
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AML update
Hello MPN friends, I thought I would post an update on my AML. I am now having Azacitadine and Venetoclax as an in-patient and so far so good - I just have red marks around the injection sites and constipation. I am otherwise well. Shockingly, my husband has been diagnosed with a melanoma just last
Hello MPN friends, I thought I would post an update on my AML. I am now having Azacitadine and Venetoclax as an in-patient and so far so good - I just have red marks around the injection sites and constipation. I am otherwise well. Shockingly, my husband has been diagnosed with a melanoma just last
Otterfield
in
MPN Voice
8 months ago
Indigestion symptoms
Hi … I’m still waiting on results of colonoscopy biopsies- it will be 3 weeks on Monday - I’ve chased results with secretaries and results were in last week so waiting on appointment with gastro consultant. Secretary said she will send email for me as I am having really bad symptoms that are sometimes
Hi … I’m still waiting on results of colonoscopy biopsies- it will be 3 weeks on Monday - I’ve chased results with secretaries and results were in last week so waiting on appointment with gastro consultant. Secretary said she will send email for me as I am having really bad symptoms that are sometimes
Lastboyscout6
in
IBS Network
5 months ago
Does biopsy spread cancer?
I've been diagnosed with Stage 2/3 PC. I wonder whether biopsies, by piercing the prostrate wall, allow cancer sells to migrate outside the prostate. Certainly e-coli can be pushed into it, since I got sepsis from my directed biopsy. What is the danger of METS being introduced to organs outside it with
I've been diagnosed with Stage 2/3 PC. I wonder whether biopsies, by piercing the prostrate wall, allow cancer sells to migrate outside the prostate. Certainly e-coli can be pushed into it, since I got sepsis from my directed biopsy. What is the danger of METS being introduced to organs outside it with
Eadgbe
in
Prostate Cancer Network
8 months ago
B12 Manufacturing Process
I was reading a post about an Etsy shop offering injectable B12 doses so I decided to research where B12 is manufactured. I found this really interesting site and thought others might also find it interesting. https://quadram.ac.uk/case_studies/an-environmentally-friendly-vitamin-b12-production-method-that-makes-manufacture-more-affordable
I was reading a post about an Etsy shop offering injectable B12 doses so I decided to research where B12 is manufactured. I found this really interesting site and thought others might also find it interesting. https://quadram.ac.uk/case_studies/an-environmentally-friendly-vitamin-b12-production-method-that-makes-manufacture-more-affordable
MoKayD
in
Pernicious Anaemia Society
5 months ago
Bad urgency with little result
Hi all, I have Proctitis and IBS.My IBS has severely flared up this week,I have not been for a poo for 5 days. ive been experiencing really bad urgency but only the size of my little finger watery poo comes out and causing pain in my bum. Im on Biscopyl and Pentasa suppositories for inflammation. Can
Hi all, I have Proctitis and IBS.My IBS has severely flared up this week,I have not been for a poo for 5 days. ive been experiencing really bad urgency but only the size of my little finger watery poo comes out and causing pain in my bum. Im on Biscopyl and Pentasa suppositories for inflammation. Can
AGB111
in
IBS Network
5 months ago
serotonin syndrome
I have a mild case of serotin syndrome… done stuff I shouldn’t have but anxiety and depression is creeping back up on me…. The issue is I’m not sure if I’m really disappointed in people or if the syndrome talking … there times where it just easier to get lost in my made up reality then live in funk
I have a mild case of serotin syndrome… done stuff I shouldn’t have but anxiety and depression is creeping back up on me…. The issue is I’m not sure if I’m really disappointed in people or if the syndrome talking … there times where it just easier to get lost in my made up reality then live in funk
CorgiPower
in
Anxiety and Depression Support
2 months ago
Adding Kisqali to Letrozale treatment
It was just suggested to me to add Kisqali to my treatment of Letrozole. I am "cancer free" since I had a masectomy and everything was taken out. Are there any others on this chat with the same experience?
It was just suggested to me to add Kisqali to my treatment of Letrozole. I am "cancer free" since I had a masectomy and everything was taken out. Are there any others on this chat with the same experience?
mimosa412
in
SHARE Metastatic Breast Cancer
8 months ago
Before Fireworks and BallDrops, Where ever you live, please read this now
Please make your year-end secure donation in any currency to Malecare now at https://malecare.org/donate Malecare is more than our massive and active online, Zoom, and in-person support groups. We're one of the world's most productive patient advocacy research groups, with several university and
Please make your year-end secure donation in any currency to Malecare now at https://malecare.org/donate Malecare is more than our massive and active online, Zoom, and in-person support groups. We're one of the world's most productive patient advocacy research groups, with several university and
Darryl
Partner
in
Prostate Cancer Network
8 months ago
Before Fireworks and BallDrops, Where ever you live, please read this now.
Please make your year-end secure donation in any currency to Malecare now at https://malecare.org/donate Malecare is more than our massive and active online, Zoom, and in-person support groups. We're one of the world's most productive patient advocacy research groups, with several university and
Please make your year-end secure donation in any currency to Malecare now at https://malecare.org/donate Malecare is more than our massive and active online, Zoom, and in-person support groups. We're one of the world's most productive patient advocacy research groups, with several university and
Darryl
Partner
in
Advanced Prostate Cancer
8 months ago
Docetaxel not working so stopped
I promised I would update you after my scan to see how the chemo was progressing. Well, the main reason for the chemo was that spots had appeared in my liver. Last week's CT scan showed that the spots have grown "significantly" so the chemo is not working. Also, my liver function blood test results -
I promised I would update you after my scan to see how the chemo was progressing. Well, the main reason for the chemo was that spots had appeared in my liver. Last week's CT scan showed that the spots have grown "significantly" so the chemo is not working. Also, my liver function blood test results -
Benkaymel
in
Advanced Prostate Cancer
8 months ago
HIFU 2023 article does not seem positive
This article from early 2023 does not seem positive on HIFU. https://link.springer.com/article/10.1007/s00345-023-04352-9 I have a friend looking at HIFU in the setting of a clinical trial. He's Gleason 6 with just 1 of 12 portions of his prostate affected. Technically, he could do active surveillance
This article from early 2023 does not seem positive on HIFU. https://link.springer.com/article/10.1007/s00345-023-04352-9 I have a friend looking at HIFU in the setting of a clinical trial. He's Gleason 6 with just 1 of 12 portions of his prostate affected. Technically, he could do active surveillance
A0007720
in
Prostate Cancer Network
8 months ago
Promising, especially for people with LBD mutation: NEJM Evidence publishes results from Phase I/IIa CYPIDES trial with ODM-208
"In phase I, 20 out of the total 47 patients had AR LBD mutation. In phase IIa, all 45 patients had AR LBD mutation. A decrease in PSA (prostate-specific antigen) levels of 50% or more occurred in 14/19 (73.7%) patients with AR LBD mutation and 2/23 (8.7%) AR-wild-type patients in phase I, and in 24/
"In phase I, 20 out of the total 47 patients had AR LBD mutation. In phase IIa, all 45 patients had AR LBD mutation. A decrease in PSA (prostate-specific antigen) levels of 50% or more occurred in 14/19 (73.7%) patients with AR LBD mutation and 2/23 (8.7%) AR-wild-type patients in phase I, and in 24/
Maxone73
in
Advanced Prostate Cancer
8 months ago
Clinical trial NCT05898399: for BRCA (ATM as well I suppose) mutations
Study of ART6043 in Advanced/Metastatic Solid Tumors Patients This company is also developing an interesting ATR inhibitor for ATM mutations https://classic.clinicaltrials.gov/ct2/show/NCT05898399
Study of ART6043 in Advanced/Metastatic Solid Tumors Patients This company is also developing an interesting ATR inhibitor for ATM mutations https://classic.clinicaltrials.gov/ct2/show/NCT05898399
Maxone73
in
Advanced Prostate Cancer
8 months ago
vitamin B12 injection
I am SO exhausted and want to see if I’m lacking B12 (I’m vegetarian) please can you let me know a good but cheap company to use. Thank you
I am SO exhausted and want to see if I’m lacking B12 (I’m vegetarian) please can you let me know a good but cheap company to use. Thank you
sidneymark70
in
Thyroid UK
5 months ago
"ive lost myself" updated
"hi guys. just came back to give an update. so i got diagnosed with ocd, panic disorder, gad, whatever. i started buspirone because im generally sensitive to ssris and i thought it was working for a bit, but then it started giving me problems. i went off of it and then it gave me more problems. now i
"hi guys. just came back to give an update. so i got diagnosed with ocd, panic disorder, gad, whatever. i started buspirone because im generally sensitive to ssris and i thought it was working for a bit, but then it started giving me problems. i went off of it and then it gave me more problems. now i
thegoat123
in
Anxiety and Depression Support
2 months ago
Alk phos on Xeloda
Moms just started her 3 cycle today of xeloda. So she’s been on it 6 weeks. Her T bili is normal her ast and alt are normal . But her Alk phos is up. Her doctor said they would continue to monitor it. Anyone else have this elevate on Xeloda ? Thanks so much!
Moms just started her 3 cycle today of xeloda. So she’s been on it 6 weeks. Her T bili is normal her ast and alt are normal . But her Alk phos is up. Her doctor said they would continue to monitor it. Anyone else have this elevate on Xeloda ? Thanks so much!
Flower1513
in
SHARE Metastatic Breast Cancer
8 months ago
potential DILI - advice?
hi everyone, I’m 29F, at the end of April I was hospitalised for e-coli, given anti biotics and PPI’s through my IV line for 3 days, then continued on oral anti biotics with PPI’s for 5 days My symptoms continued and my ALT/AST are at 952/370 and continuing to rise still today, I feel awful, nauseous
hi everyone, I’m 29F, at the end of April I was hospitalised for e-coli, given anti biotics and PPI’s through my IV line for 3 days, then continued on oral anti biotics with PPI’s for 5 days My symptoms continued and my ALT/AST are at 952/370 and continuing to rise still today, I feel awful, nauseous
eljd
in
British Liver Trust
2 months ago
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