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Hypomyelination and congenital cataract
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Afinitor +ESR1 mutation for the hive mind.
Hi I am starting Afinitor on Wednesday after a mixed scan a few weeks ago after 6 months on Orserdu. It suddenly dawned on me that Afinitor is combined with estrogen therapy, likely an AI. But doesn't the ESR1 mutation cause AI resistance? In which case does that make Afinitor less effective? I will
Hi I am starting Afinitor on Wednesday after a mixed scan a few weeks ago after 6 months on Orserdu. It suddenly dawned on me that Afinitor is combined with estrogen therapy, likely an AI. But doesn't the ESR1 mutation cause AI resistance? In which case does that make Afinitor less effective? I will
Pbsoup
in
SHARE Metastatic Breast Cancer
9 months ago
Familial Polycythemia
Hi,I wondered if anyone could advise on what care we should be getting for familial polycythemia? my 2 children (age 24 & 27) and I were tested at Guys a few years ago for the Jak2 gene, it was negative & we were discharged. Our blood tests always show a red cell count around 5.6, Haemoglobin 160
Hi,I wondered if anyone could advise on what care we should be getting for familial polycythemia? my 2 children (age 24 & 27) and I were tested at Guys a few years ago for the Jak2 gene, it was negative & we were discharged. Our blood tests always show a red cell count around 5.6, Haemoglobin 160
Vicky_b
in
MPN Voice
7 months ago
Post Rheumatology Appointment
Thank you to everyone who gave me advice for my Rheumatologist appointment yesterday......it was my first one and I thought I'd give an update on my experience at Benenden Hospital. I have posted this as a response in my original thread too but thought I'd start a new post to see if people found it useful
Thank you to everyone who gave me advice for my Rheumatologist appointment yesterday......it was my first one and I thought I'd give an update on my experience at Benenden Hospital. I have posted this as a response in my original thread too but thought I'd start a new post to see if people found it useful
Paulx222
in
PMRGCAuk
9 months ago
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Dental Issues on Finesteride
Five weeks after starting on finesteride 5 mg I developed painfully sensitive teeth both top and bottom on left side of my mouth. Here's what a google search turned up: https://forum.propeciahelp.com/t/propecia-and-dental-problems/1254 https://www.ehealthme.com/ds/finasteride/toothaches/ I became
Five weeks after starting on finesteride 5 mg I developed painfully sensitive teeth both top and bottom on left side of my mouth. Here's what a google search turned up: https://forum.propeciahelp.com/t/propecia-and-dental-problems/1254 https://www.ehealthme.com/ds/finasteride/toothaches/ I became
fast_eddie
in
Fight Prostate Cancer
7 months ago
Vitamin D and Dementia
Vitamin D is a topic that gets a regular airing on this forum. In the context of CLL, here is a good place to review past posts https://healthunlocked.com/cllsupport/posts/149126536/recent-research-report?responses=149129259 (reply by Lankisterguy). Personally, the idea of dying with CLL just doesn't
Vitamin D is a topic that gets a regular airing on this forum. In the context of CLL, here is a good place to review past posts https://healthunlocked.com/cllsupport/posts/149126536/recent-research-report?responses=149129259 (reply by Lankisterguy). Personally, the idea of dying with CLL just doesn't
bennevisplace
in
CLL Support
7 months ago
new MBC drug for PIK3CA mutation in Hr+HER- breast cancer survivors
On Nov 16, 2023, the FDA approved another drug for those who have developed the PIK3CA. Mutation after first line treatment for the HR+HER- type. It’s another drug in the same vein as PIQRAY which also has to be used with Fulvestrant. This one is from AstraZeneca but it seems to have all the same side
On Nov 16, 2023, the FDA approved another drug for those who have developed the PIK3CA. Mutation after first line treatment for the HR+HER- type. It’s another drug in the same vein as PIQRAY which also has to be used with Fulvestrant. This one is from AstraZeneca but it seems to have all the same side
Dragonfly2
in
SHARE Metastatic Breast Cancer
9 months ago
Chronic diarrhea after chemo; any suggestions?
Hello lovely ladies; unfortunately my disease came back after 2.5 years and 70 cm of my small intestines had to be removed with surgery. 6 cycle of chemo is given. 4 finished so far. But i'm experiencing terrible diarrhea. Everyday more than 10 (sometimes 18) visits to restroom and pain during after
Hello lovely ladies; unfortunately my disease came back after 2.5 years and 70 cm of my small intestines had to be removed with surgery. 6 cycle of chemo is given. 4 finished so far. But i'm experiencing terrible diarrhea. Everyday more than 10 (sometimes 18) visits to restroom and pain during after
Sybil71
in
My Ovacome
7 months ago
h pylori treatment
hello I’d like to hear from anyone who has successfully eradicated helicobacter pylori with either a natural or antibiotic protocol. I’m on low dose NDT with Dr Frey and have thyroid nodules (biopsy tested benign) Tested positive for h pylori via a breath test in October and was offered quadruple
hello I’d like to hear from anyone who has successfully eradicated helicobacter pylori with either a natural or antibiotic protocol. I’m on low dose NDT with Dr Frey and have thyroid nodules (biopsy tested benign) Tested positive for h pylori via a breath test in October and was offered quadruple
Crankyoldbag
in
Thyroid UK
7 months ago
Does this look like a malar rash? Would it be seen as one by a doctor, do you think?
I have had joint pain and tiredness for the last six years. This last year it has got significantly worse and although I am overweight, the pain is felt in my fingers and elbows sometimes. My heel and ankle are also badly affected. The fatigue is debilitating. I have also developed digestive issues
I have had joint pain and tiredness for the last six years. This last year it has got significantly worse and although I am overweight, the pain is felt in my fingers and elbows sometimes. My heel and ankle are also badly affected. The fatigue is debilitating. I have also developed digestive issues
Fluffymella
in
LUPUS UK
6 months ago
Does anyone have CtDna blood test added In their monitoring routine?
Hi! Kim 43 MBC since 3/2021. I do alot of reading of clinical trials and medical journals. I found this CtDna blood test that SUPPOSEDLY detects cancer cells in the blood up to 10 months sooner than a Petscan. My Oncologist didn't know about this testing so after fielding out all the companies that do
Hi! Kim 43 MBC since 3/2021. I do alot of reading of clinical trials and medical journals. I found this CtDna blood test that SUPPOSEDLY detects cancer cells in the blood up to 10 months sooner than a Petscan. My Oncologist didn't know about this testing so after fielding out all the companies that do
KimberlyB40
in
SHARE Metastatic Breast Cancer
9 months ago
B12 patches
At present I get B12 injection every 8 weeks, however I feel I need more as I am still suffering all the symptoms of B12 deficency/PA. I have found OmniCo B12 patches (high strength) on Amazon. It says the B12 is Methylcobalamin. Has anyone tried them? are they antgood. I, and am sure others would
At present I get B12 injection every 8 weeks, however I feel I need more as I am still suffering all the symptoms of B12 deficency/PA. I have found OmniCo B12 patches (high strength) on Amazon. It says the B12 is Methylcobalamin. Has anyone tried them? are they antgood. I, and am sure others would
Whiskymack
in
Pernicious Anaemia Society
7 months ago
Tumour marker
I have been in Ibrance, Letrozole and six monthly Denusomab shots for 3 years and 9 months with NEADs from the first Pet scan. C15.3 and CEA have fluctuated within the normal range since. PET scan in Sep 23 also showed NEADs. Recent bloods in Thursday showed c15.3 rise to above the normal range
I have been in Ibrance, Letrozole and six monthly Denusomab shots for 3 years and 9 months with NEADs from the first Pet scan. C15.3 and CEA have fluctuated within the normal range since. PET scan in Sep 23 also showed NEADs. Recent bloods in Thursday showed c15.3 rise to above the normal range
Gramat
in
SHARE Metastatic Breast Cancer
9 months ago
Severe reaction to Targinact - please help
Thanks everyone for your help with my last post re: Targinact. I think I am having severe side-effects from the drug, all of which are listed in the leaflet. I thought I was ill due to a seasonal flu/cold, but I now think the sickness, shaking, diarrhoea, nausea, rapid breathing and complete loss of
Thanks everyone for your help with my last post re: Targinact. I think I am having severe side-effects from the drug, all of which are listed in the leaflet. I thought I was ill due to a seasonal flu/cold, but I now think the sickness, shaking, diarrhoea, nausea, rapid breathing and complete loss of
Claire_lc
in
Restless Legs Syndrome
7 months ago
clavicle/collar bone swelling - YouTube Vid
hi there, A few of us have been talking about swelling in the pits of the collar bone. Instagram must’ve been listening 👂🏼 as this expert popped up in my feed. apparently this area is called the terminus, left and right so different jobs. I’ve watched this YouTube and immediately had gunk running
hi there, A few of us have been talking about swelling in the pits of the collar bone. Instagram must’ve been listening 👂🏼 as this expert popped up in my feed. apparently this area is called the terminus, left and right so different jobs. I’ve watched this YouTube and immediately had gunk running
Regenallotment
in
Thyroid UK
5 months ago
Can’t cope anymore
To make a long story short, im having panic attacks because me and my gf broke up recently and we both agreed to stay friends bc we are attached, but i feel so hurt and scared of messing things up moving forward. On top of my normal mental health which was already doing poor, i don’t know what to do
To make a long story short, im having panic attacks because me and my gf broke up recently and we both agreed to stay friends bc we are attached, but i feel so hurt and scared of messing things up moving forward. On top of my normal mental health which was already doing poor, i don’t know what to do
catbones0421
in
Anxiety and Depression Support
5 months ago
Gazyva and Ventalox
I started G/V treatment 4 months ago. Everything went smoothly for 3.5 months. Now some lymph nodes are appearing on my neck. My Doc stopped the treatment and called for a Pet scan and a biopsy of lymphnode. Anybody been in my situation and what was the plan, diagnosis, options etc.?? Very Nervous, Rob
I started G/V treatment 4 months ago. Everything went smoothly for 3.5 months. Now some lymph nodes are appearing on my neck. My Doc stopped the treatment and called for a Pet scan and a biopsy of lymphnode. Anybody been in my situation and what was the plan, diagnosis, options etc.?? Very Nervous, Rob
CityL
in
CLL Support
9 months ago
probiotics stomach upset
Hi, I was interested in trying probiotics, namely Kefir to help restore gut microbiome since the Lanzoprazole destroys them. The dietitian recommended this too, as did my surgeon. I already eat lots of live yoghurt with no problems. However I’ve been getting a lot of wind and diarrhoea since I started
Hi, I was interested in trying probiotics, namely Kefir to help restore gut microbiome since the Lanzoprazole destroys them. The dietitian recommended this too, as did my surgeon. I already eat lots of live yoghurt with no problems. However I’ve been getting a lot of wind and diarrhoea since I started
PopandMo
in
Oesophageal & Gastric Cancer
7 months ago
B12 deficiency
I was diagnosed with a B12 deficiency. I'm recovering from covid it's been 3 weeks. Not sure if the covid knocked my B12 down. I had first injection today. I woke up out of my sleep my body burning and dry month. I had that feeling first week of covid it went away. Now I'm not sure if the B12 is fighting
I was diagnosed with a B12 deficiency. I'm recovering from covid it's been 3 weeks. Not sure if the covid knocked my B12 down. I had first injection today. I woke up out of my sleep my body burning and dry month. I had that feeling first week of covid it went away. Now I'm not sure if the B12 is fighting
Michbell45
in
Pernicious Anaemia Society
7 months ago
solaraze for actinic keratosis
I’ve been suffering from what’s known as solar keratosis which is sun damaged skin on my scalp. The effects include scabs on the scalp as well as slightly inflamed spots. Anyway doctor has given me solaraze to clear it. I’ve been on it for around four weeks of a twelve week course and have found that
I’ve been suffering from what’s known as solar keratosis which is sun damaged skin on my scalp. The effects include scabs on the scalp as well as slightly inflamed spots. Anyway doctor has given me solaraze to clear it. I’ve been on it for around four weeks of a twelve week course and have found that
Profound15
in
Atrial Fibrillation Support
9 months ago
Wheat Diet may Exacerbate Multiple Sclerosis Severity
Wheat diet may exacerbate multiple sclerosis severity, research finds - Jan 2024
by Natkritta Hüppe, Universitätsmedizin der Johannes Gutenberg-Universität Mainz https://medicalxpress.com/news/2024-01-wheat-diet-exacerbate-multiple-sclerosis.html
Highlights:
A research team at the University
Wheat diet may exacerbate multiple sclerosis severity, research finds - Jan 2024
by Natkritta Hüppe, Universitätsmedizin der Johannes Gutenberg-Universität Mainz https://medicalxpress.com/news/2024-01-wheat-diet-exacerbate-multiple-sclerosis.html
Highlights:
A research team at the University
Bolt_Upright
in
Cure Parkinson's
7 months ago
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