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update on genetics testeing
hi everyone. Some will know me some won’t. October 2022 I was diagnosed with cardiomyopathy and severe heart failure aged 36. I’m now 38 and medication has helped me improve and I’m living a pretty much normal life again. I was offered genetic testing because of a strong family history and I finally
hi everyone. Some will know me some won’t. October 2022 I was diagnosed with cardiomyopathy and severe heart failure aged 36. I’m now 38 and medication has helped me improve and I’m living a pretty much normal life again. I was offered genetic testing because of a strong family history and I finally
MyHF
in
British Heart Foundation
5 months ago
PSA rising on Triplet Therapy after <18m
Hi all. Hope you are keeping your spirits high. This is a follow up to a post I made in 2022 about my father. I haven't posted since, which reflects the period of relative normalcy that followed the commencement of ADT (triplet therapy) at MSK. I want to pause to appreciate that since I know most of
Hi all. Hope you are keeping your spirits high. This is a follow up to a post I made in 2022 about my father. I haven't posted since, which reflects the period of relative normalcy that followed the commencement of ADT (triplet therapy) at MSK. I want to pause to appreciate that since I know most of
nyc_son
in
Advanced Prostate Cancer
5 months ago
Free Genetic Testing Promise Trial
When I was diagnosed with this cancer and looked into this forum for guidance the topic of genetic testing and its potential applications sounded like something I should investigate since I had no info on my biological father’s medical history and my mom died of cervical cancer. My local urologist wanted
When I was diagnosed with this cancer and looked into this forum for guidance the topic of genetic testing and its potential applications sounded like something I should investigate since I had no info on my biological father’s medical history and my mom died of cervical cancer. My local urologist wanted
Mgtd
in
Advanced Prostate Cancer
23 days ago
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Cholesterol
Where can I find reliable information regarding cholesterol levels. I am in the US and cardio specialist who is also a lipid specialist is confused due to so much conflicting info for people with PBC and cholesterol. My LDL is high, so is my HDL and my Triglycerides are normal. I don't have any heart
Where can I find reliable information regarding cholesterol levels. I am in the US and cardio specialist who is also a lipid specialist is confused due to so much conflicting info for people with PBC and cholesterol. My LDL is high, so is my HDL and my Triglycerides are normal. I don't have any heart
Lawyers
in
PBC Foundation
5 months ago
Is anyone in the group interested in genetic research about NASH?
We are working with Sano Genetics to encourage more research into the genetics that predispose someone to liver disease. As part of that they are convening a focus group to gather patient perspectives. We want to encourage the adoption of genetic testing as part of normal patient care. If you have
We are working with Sano Genetics to encourage more research into the genetics that predispose someone to liver disease. As part of that they are convening a focus group to gather patient perspectives. We want to encourage the adoption of genetic testing as part of normal patient care. If you have
nash2
Partner
in
Living with Fatty Liver and NASH
6 months ago
PSA Ultrasensitive 0.015 six months after prostatectomy
Urologist wants to see what the 9-month PSA
test
looks like, and to get a second Decipher
genetic
test
. (I had one prior to surgery.) Pathology from surgery showed margins were positive, but Gleason score was only 3+3. Full pathology reports below.
Urologist wants to see what the 9-month PSA
test
looks like, and to get a second Decipher
genetic
test
. (I had one prior to surgery.) Pathology from surgery showed margins were positive, but Gleason score was only 3+3. Full pathology reports below.
SmasherOfAjumma
in
Prostate Cancer Network
1 year ago
liver Mets, Pluvicto failed
diagnosed 2021, spread to distant lymph nodes. Castrate resistant within 6 months. Had platinum based chemo. Stabilized for bit. 4 Pluvicto treatments. PSA went from 4 to 70. Latest scans show new mets to liver. Genetic testing shows ATM mutation. Where to go from here?
diagnosed 2021, spread to distant lymph nodes. Castrate resistant within 6 months. Had platinum based chemo. Stabilized for bit. 4 Pluvicto treatments. PSA went from 4 to 70. Latest scans show new mets to liver. Genetic testing shows ATM mutation. Where to go from here?
mysticmini
in
Advanced Prostate Cancer
6 months ago
Genetic testing - nutrigenomics? Nutrahacker, Genetic genie, etc.
I myself have tried many supplements ... very trial and error ... but in the spirit of "let the data speak," I finally decided to use data from a 23andme
genetic
test
I'd taken years ago and just got a nutrigenomic test done (Nutrahacker; there are others).
I myself have tried many supplements ... very trial and error ... but in the spirit of "let the data speak," I finally decided to use data from a 23andme
genetic
test
I'd taken years ago and just got a nutrigenomic test done (Nutrahacker; there are others).
kathy775
in
Cure Parkinson's
1 year ago
Cholesterol
How many have high cholesterol 300 plus but LDL is also high and HDL is so high can't be calculated. Triglycerides are normal. Had genetic testing all normal. Calcium CT scan is 0. High Lipoprotein A and B. Where can I find info to give to my cardiologist. He is lost!!
How many have high cholesterol 300 plus but LDL is also high and HDL is so high can't be calculated. Triglycerides are normal. Had genetic testing all normal. Calcium CT scan is 0. High Lipoprotein A and B. Where can I find info to give to my cardiologist. He is lost!!
Lawyers
in
PBCers Organization
6 months ago
Elvanse Vyvanse for ADHD & anxiety - Are these side effects normal or is it the wrong med?
Days 1, 2, 3 of Elvanse felt INCREDIBLE. Like a fog lifted - happier than i remember being in yeaaars with so much motivation and energy to get stuff done. Also waayy more sociable. ...but weeks later I don't feel nearly that amount of stimulation and I'm trying to navigate side effects/increased anxiety
Days 1, 2, 3 of Elvanse felt INCREDIBLE. Like a fog lifted - happier than i remember being in yeaaars with so much motivation and energy to get stuff done. Also waayy more sociable. ...but weeks later I don't feel nearly that amount of stimulation and I'm trying to navigate side effects/increased anxiety
hyperfocusaficionado
in
CHADD's Adult ADHD Support
6 months ago
ATM gene mutation
I just received results from genetic testing that I have a ATM gene mutation. I am currently not on any meds and my last PSMA pet scan was negation. I am scheduled for a follow up PSA test mid march based on rising PSA after 5 years undetectable. Based on the ATM finding will this change any future therapy
I just received results from genetic testing that I have a ATM gene mutation. I am currently not on any meds and my last PSMA pet scan was negation. I am scheduled for a follow up PSA test mid march based on rising PSA after 5 years undetectable. Based on the ATM finding will this change any future therapy
Rfs1975
in
Advanced Prostate Cancer
6 months ago
Fatigue BEFORE treatment (A bit of a rant)
Having a doctor tell you that you need a
genetic
test
. The next saying it doesn't matter, it has no impact on treatment. For example, I got a second opinion from a urological oncologist. He said I was a great candidate for focal therapy such as HIFU or cyro.
Having a doctor tell you that you need a
genetic
test
. The next saying it doesn't matter, it has no impact on treatment. For example, I got a second opinion from a urological oncologist. He said I was a great candidate for focal therapy such as HIFU or cyro.
Chasbearcat999
in
Prostate Cancer Network
1 year ago
Genetic Testing?
Does anyone have an experience to share about getting genetic testing done on your biopsy samples? I'm interested in three tests: (1) a DECIPHER test, (2) a full gene sequencing of tumor DNA and RNA (e.g., at Claris Labs), and (3) the Artera AI analysis of digitized pathology slides. Also, if anyone
Does anyone have an experience to share about getting genetic testing done on your biopsy samples? I'm interested in three tests: (1) a DECIPHER test, (2) a full gene sequencing of tumor DNA and RNA (e.g., at Claris Labs), and (3) the Artera AI analysis of digitized pathology slides. Also, if anyone
janebob99
in
Prostate Cancer Network
7 months ago
GAZYVA & VENCLEXTA…I thought it wasn’t working. Apparently it was, extremely well
Had PET scan yesterday, read the report today. I haven’t spoken to my Doc yet. But according to this report there are no signs of enlarged lymph nodes anywhere. Kind of blows my mind, the main reason I started treatment was because of my abdominal pain (which I still have). I am considered high risk
Had PET scan yesterday, read the report today. I haven’t spoken to my Doc yet. But according to this report there are no signs of enlarged lymph nodes anywhere. Kind of blows my mind, the main reason I started treatment was because of my abdominal pain (which I still have). I am considered high risk
Corgidad
in
CLL Support
7 months ago
ancestry help please?
I have had a full
genetic
test
done by ancestry and would be very grateful for any tips on how to search for information about relevant SNPs. I have downloaded the ( very large!) file onto my iPad but have no idea how to find the bits that I want. For example, where are the SNPs for DIO1 and 2?
I have had a full
genetic
test
done by ancestry and would be very grateful for any tips on how to search for information about relevant SNPs. I have downloaded the ( very large!) file onto my iPad but have no idea how to find the bits that I want. For example, where are the SNPs for DIO1 and 2?
Mollyfan
in
Thyroid UK
1 year ago
Adding Docetaxel to T3b?
My husband is 63, stage T3b N0M0. His biopsy showed all 12 cores positive with 80%+ cancer, GL 4+5 with
intraductal carcinoma
and original PSA was 12. According to PSMA pet scan 12 months ago, he has additional risk factors such as
ECE, SVI, PNI
, but no other spread. He has completed 39
My husband is 63, stage T3b N0M0. His biopsy showed all 12 cores positive with 80%+ cancer, GL 4+5 with
intraductal carcinoma
and original PSA was 12. According to PSMA pet scan 12 months ago, he has additional risk factors such as
ECE, SVI, PNI
, but no other spread. He has completed 39
Adendino
in
Advanced Prostate Cancer
7 months ago
adult Dad with ADHD who has tried stimulant meds for the last time!
I recently after many years decided to try Vyvanse, after not using meds since my twenties due to terrible side effects, long enough ago were there was no Vyvanse. I’ve been in it for a week, and the anger, and irritability on only 30 mg’s is just too much to consider messing with it any longer. If you
I recently after many years decided to try Vyvanse, after not using meds since my twenties due to terrible side effects, long enough ago were there was no Vyvanse. I’ve been in it for a week, and the anger, and irritability on only 30 mg’s is just too much to consider messing with it any longer. If you
Chelseaguy76
in
CHADD's Adult ADHD Support
7 months ago
Genetic testing for female when using donor sperm
I am in the process of ordering donor straws for IUI treatment and finding it really hard to find donors who are CMV negative in the UK and Europe. I have found a few US samples that match what I am after but there is no genetics testing/matching available on the site for buyers outside the US or Canada
I am in the process of ordering donor straws for IUI treatment and finding it really hard to find donors who are CMV negative in the UK and Europe. I have found a few US samples that match what I am after but there is no genetics testing/matching available on the site for buyers outside the US or Canada
Lostinmaze
in
Fertility Network UK
7 months ago
STAGE 1C1 Grade 2
Hello again everyone Hope you’re all keeping well 😊 I did a reply to my original post a while back but thought I’d give another update I have decided for the one agent only Carboplatin had my first dose yesterday and touch wood feeling ok so far. Thanks for all your replies. The only reason I
Hello again everyone Hope you’re all keeping well 😊 I did a reply to my original post a while back but thought I’d give another update I have decided for the one agent only Carboplatin had my first dose yesterday and touch wood feeling ok so far. Thanks for all your replies. The only reason I
Kscott10
in
My Ovacome
8 months ago
Sacral insufficiency fractures
Thanks so much to everyone who replied to my previous post! I feel encouraged by your good wishes and suggestions as to possible ways forward. I'm away from home at the moment but next week I'm definitely going to get back in contact with the specialist gynaecology nurses to see if there is any ongoing
Thanks so much to everyone who replied to my previous post! I feel encouraged by your good wishes and suggestions as to possible ways forward. I'm away from home at the moment but next week I'm definitely going to get back in contact with the specialist gynaecology nurses to see if there is any ongoing
Poir
in
Pelvic Radiation Disease Association
8 months ago
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