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Gaucher disease type 1 (GD1)
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Father’s CRPCa Failed chemo (Cabazitaxel,Docetaxel) and Failed LU177
Father’s current Age: 78 At age 70, Diagnosed with Pca in 2015 after seeing initial PSA as ~ 270. 2015 - 2019 - BICALUTAMIDE - Failed 2019 - 2020 - Radiation- Ineffective 2020 Oct - 2021 October - Zytiga (Aberiterone) - Failed - PSA 98 2021 Dec - 2022 Apr - Docetaxel- Ineffective - PSA 120 2022
Father’s current Age: 78 At age 70, Diagnosed with Pca in 2015 after seeing initial PSA as ~ 270. 2015 - 2019 - BICALUTAMIDE - Failed 2019 - 2020 - Radiation- Ineffective 2020 Oct - 2021 October - Zytiga (Aberiterone) - Failed - PSA 98 2021 Dec - 2022 Apr - Docetaxel- Ineffective - PSA 120 2022
Vishwa1890
in
Advanced Prostate Cancer
3 months ago
free from psp
My husband is free from this horrible disease. He passed away 1/24/24 at 68. I miss him horribly but I’m so glad he’s not suffering anymore. He was diagnosed with Parkinson’s in 2019 and then later with PSP in 2020. The last 1 1/2 years was really tough and if it wasn’t for my kids, this forum and
My husband is free from this horrible disease. He passed away 1/24/24 at 68. I miss him horribly but I’m so glad he’s not suffering anymore. He was diagnosed with Parkinson’s in 2019 and then later with PSP in 2020. The last 1 1/2 years was really tough and if it wasn’t for my kids, this forum and
Kathylou62
in
PSP Association
3 months ago
Metastatic prostate cancer in the lungs
Radical prostatectomy in 2003 with PSA of 3.9. PSA slowly rose to .07 in 2023. PET scan in May, 2023 found nodules in my lungs with the largest being 1.4 cm. Needle biopsy identified it as metastatic adenocarcinoma from prostatic origin. 5 sessions of 50Gy cyberknife treatments on the 1.4 cm nodule
Radical prostatectomy in 2003 with PSA of 3.9. PSA slowly rose to .07 in 2023. PET scan in May, 2023 found nodules in my lungs with the largest being 1.4 cm. Needle biopsy identified it as metastatic adenocarcinoma from prostatic origin. 5 sessions of 50Gy cyberknife treatments on the 1.4 cm nodule
S4survivor
in
Advanced Prostate Cancer
3 months ago
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One month on alternative meds only
Three pluses and one negative. Breast met is gone, prostate shrunk to near normal size, nagalase dropped from 1.55 to 1.37 . The negative is PSA jumped from 14 to 22. Which is more accurate the nagalase test or the PSA?
Three pluses and one negative. Breast met is gone, prostate shrunk to near normal size, nagalase dropped from 1.55 to 1.37 . The negative is PSA jumped from 14 to 22. Which is more accurate the nagalase test or the PSA?
agnut
in
Fight Prostate Cancer
3 months ago
Methane dominant breath test - Aire 2
I purchased the FoodMarble Aire2 two weeks ago and have been logging meals and doing breath tests. Early days of course but most meals rarely go above 4 - except for one day when I experimented with 6 danish butter cookies and that scored a 6.7 after one hour! I notice that on all my readings that
I purchased the FoodMarble Aire2 two weeks ago and have been logging meals and doing breath tests. Early days of course but most meals rarely go above 4 - except for one day when I experimented with 6 danish butter cookies and that scored a 6.7 after one hour! I notice that on all my readings that
hankpym
in
IBS Network
3 months ago
prostate met to esophagus
on the road for 9 years. Short story.. biopsy 4+3. Surg. Found in margins, pelvic lymphs. PSA 3 after. C11 found in lymph in chest. Chemo, then zytiga, Lupron, then 37 radiation, and meds then meds a year. Non detectable NED 7 years no meds tx 6 years. PSA started going up, slowly, bout 18 mo
on the road for 9 years. Short story.. biopsy 4+3. Surg. Found in margins, pelvic lymphs. PSA 3 after. C11 found in lymph in chest. Chemo, then zytiga, Lupron, then 37 radiation, and meds then meds a year. Non detectable NED 7 years no meds tx 6 years. PSA started going up, slowly, bout 18 mo
Kittenlover50
in
Advanced Prostate Cancer
3 months ago
Could Someone Explain The TTGIgA Test Please?
Hello! I have recently had some blood tests done due to low vitamin B12 and long term issues with iron deficiency. My GP did some tests to rule out Celiacs as a cause, and I just wondered if somebody could explain the Tissu Transglutaminase IgA test please - my result came back at 0.4 (range 0-6.9) I
Hello! I have recently had some blood tests done due to low vitamin B12 and long term issues with iron deficiency. My GP did some tests to rule out Celiacs as a cause, and I just wondered if somebody could explain the Tissu Transglutaminase IgA test please - my result came back at 0.4 (range 0-6.9) I
Hidden
in
Gluten Free Guerrillas
3 months ago
Low B12 but Negative Parietal Cell Autoantibodies
Hi! I had some blood tests done last week (a brief history - I haven’t been 100% since I had Covid 14 months ago and been suffering with extreme tiredness and fatigue.. I was found to have iron deficiency anaemia and was successfully treated last year), it has shown I have low B12 (173 - range 197-771
Hi! I had some blood tests done last week (a brief history - I haven’t been 100% since I had Covid 14 months ago and been suffering with extreme tiredness and fatigue.. I was found to have iron deficiency anaemia and was successfully treated last year), it has shown I have low B12 (173 - range 197-771
Hidden
in
Pernicious Anaemia Society
3 months ago
PSA rise
2 months ago my PSA was 20. I have had extensive screening done prior to starting a clinical trial on Tuesday. My PSA has gone up to 367 since then. CT scan showed no significant change and I had bone scan yesterday. Onco says it may just be increased activity of existing cancer cells and not necessarily
2 months ago my PSA was 20. I have had extensive screening done prior to starting a clinical trial on Tuesday. My PSA has gone up to 367 since then. CT scan showed no significant change and I had bone scan yesterday. Onco says it may just be increased activity of existing cancer cells and not necessarily
konichiwa12
in
Advanced Prostate Cancer
3 months ago
new and looking for resources Stage 4 metastatic. Gleason 9
New and concerned wife here. The Reddit group suggested to come to this form. Yesterday we got the worst news possible after waiting 3+ weeks for results. I waffle back and forth between anger, sadness and hope. My husband was diagnosed at 61 with metastatic prostate cancer. Gleason 9, it has
New and concerned wife here. The Reddit group suggested to come to this form. Yesterday we got the worst news possible after waiting 3+ weeks for results. I waffle back and forth between anger, sadness and hope. My husband was diagnosed at 61 with metastatic prostate cancer. Gleason 9, it has
Sunnysailor
in
Advanced Prostate Cancer
3 months ago
Triglycerides
I’m very pleased to say my total cholesterol has gone from 6.4 to 4.6 from March this year to August. I worked hard with diet mainly and exercise. However my triglycerides weren’t included in this blood test. Has anyone found that due to their thyroid problems that their triglycerides are raised?
I’m very pleased to say my total cholesterol has gone from 6.4 to 4.6 from March this year to August. I worked hard with diet mainly and exercise. However my triglycerides weren’t included in this blood test. Has anyone found that due to their thyroid problems that their triglycerides are raised?
292426
in
Thyroid UK
8 months ago
Advice with Graves Disease
Hi All - I was diagnosed with Graves Disease in June 2023 and prescribed Carbimazole 20mg plus Propranolol 80mg Sustained Release. I have never actually met my endocrinologist owing to NHS strikes, so as a 60yo man I feel pretty alone with this condition as I don't know anyone else who has it. After
Hi All - I was diagnosed with Graves Disease in June 2023 and prescribed Carbimazole 20mg plus Propranolol 80mg Sustained Release. I have never actually met my endocrinologist owing to NHS strikes, so as a 60yo man I feel pretty alone with this condition as I don't know anyone else who has it. After
CharlieUK
in
Thyroid UK
3 months ago
high liver enzymes
Hello there. I was wondering if anyone had any experiences or knowledge over what I’m going through right now. Recently I had my blood test done. My ALT,AST, and alkaline phosphates came out super high (131, 89, 146) respectfully. I was struggling with a really bad flu at the time of these tests. Could
Hello there. I was wondering if anyone had any experiences or knowledge over what I’m going through right now. Recently I had my blood test done. My ALT,AST, and alkaline phosphates came out super high (131, 89, 146) respectfully. I was struggling with a really bad flu at the time of these tests. Could
Dna4christ
in
Liver4Life
3 months ago
Adrenal tumour - anyone here with experience with it?
Hey everyone, My aldosterone levels are very elevated at 409 (range up to 190). I'm waiting for the adrenal MRI. My endo said he's suspecting adrenal adenoma since my ACTH was low, blood cortisol high, unable to raise thyroid meds or raising and having symptoms. Anyone here diagnosed with it or know
Hey everyone, My aldosterone levels are very elevated at 409 (range up to 190). I'm waiting for the adrenal MRI. My endo said he's suspecting adrenal adenoma since my ACTH was low, blood cortisol high, unable to raise thyroid meds or raising and having symptoms. Anyone here diagnosed with it or know
Incoguto
in
Thyroid UK
3 months ago
Confused again 😕
How do you know if your intrinsic factor antibody blood test is good or bad?
How do you know if your intrinsic factor antibody blood test is good or bad?
Popcorn12345
in
Pernicious Anaemia Society
3 months ago
Do I have Graves disease?
After being diagnosed with Thyrotoxicosis and medicated with Carbimazole and Propranolol, they finally did the Thyroid Antibodies test. They said I have hyperthyroidism, likely caused by Graves disease. I have symptoms of Thyroid Eye Disease. My results came back in range! So, do I not have Graves disease
After being diagnosed with Thyrotoxicosis and medicated with Carbimazole and Propranolol, they finally did the Thyroid Antibodies test. They said I have hyperthyroidism, likely caused by Graves disease. I have symptoms of Thyroid Eye Disease. My results came back in range! So, do I not have Graves disease
Opposite
in
Thyroid UK
3 months ago
Terrys nails
hi there, I’m just wondering if anyone with PBC has experience with Terrys nails? I have it on 5 of my finger nails (2 on one hand and 3 on another). My liver bloods are normal just now except for GGT (112) and my last fibroscan was 5.7 with CAP score of 233. Both AMA and ANA positive but my hepatoligist
hi there, I’m just wondering if anyone with PBC has experience with Terrys nails? I have it on 5 of my finger nails (2 on one hand and 3 on another). My liver bloods are normal just now except for GGT (112) and my last fibroscan was 5.7 with CAP score of 233. Both AMA and ANA positive but my hepatoligist
FarahS
in
PBC Foundation
3 months ago
Not like a research from Johns Hopkins, but let's consider it
"Florida Atlantic University's Schmidt College of Medicine and collaborators are the first to demonstrate in vivo the chemo-preventive properties of alpha-santalol against prostate cancer development using a transgenic mouse model." https://www.news-medical.net/news/20240213/Study-demonstrates-chemo-preventive-properties-of-alpha-santalol-against-prostate-cancer-development.aspx
"Florida Atlantic University's Schmidt College of Medicine and collaborators are the first to demonstrate in vivo the chemo-preventive properties of alpha-santalol against prostate cancer development using a transgenic mouse model." https://www.news-medical.net/news/20240213/Study-demonstrates-chemo-preventive-properties-of-alpha-santalol-against-prostate-cancer-development.aspx
Maxone73
in
Fight Prostate Cancer
3 months ago
Third Perianal Abscess Drainage
I just had my third Perianal Abscess drained in an operation. I was diagnosed with Crohn's last year. I have fistula's that haven't closed so they put a Seton in during this operation. I'm wondering what suggestions people might have for diet and how to avoid getting another abscess. It's incredibly
I just had my third Perianal Abscess drained in an operation. I was diagnosed with Crohn's last year. I have fistula's that haven't closed so they put a Seton in during this operation. I'm wondering what suggestions people might have for diet and how to avoid getting another abscess. It's incredibly
MrNewfie17
in
Crohn's and Colitis Support
3 months ago
Newbie to this community and wondering about B12 deficiency
Hello, for the past 4 years I've had symptoms of CFS, plus low FT4 and on occasions, low TSH. I've also had my cortisol tested by saliva and short synacthen test, both showed low levels but the adrenals work when stimulated so it's not Addisons. I've tried levothyroxine, T3 and thyroid glandulars and
Hello, for the past 4 years I've had symptoms of CFS, plus low FT4 and on occasions, low TSH. I've also had my cortisol tested by saliva and short synacthen test, both showed low levels but the adrenals work when stimulated so it's not Addisons. I've tried levothyroxine, T3 and thyroid glandulars and
Jamima
in
Pernicious Anaemia Society
3 months ago
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