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High volume, advanced metastatic prostate cancer
Hello. I am looking for guidance. My dad (now 81) was diagnosed with metastatic prostate cancer at the initial point of diagnosis in the ER on 10/25/2022. It had spread to 8 bones and was all over his spine, hip, base of skull, etc, but also as far as the base of the skull, and shoulder. His PSA was
Hello. I am looking for guidance. My dad (now 81) was diagnosed with metastatic prostate cancer at the initial point of diagnosis in the ER on 10/25/2022. It had spread to 8 bones and was all over his spine, hip, base of skull, etc, but also as far as the base of the skull, and shoulder. His PSA was
lgutman
in
Advanced Prostate Cancer
5 months ago
Ibrance/Letrozole Fail
Been through the wringer and back over the past month. Scans showed progression. Had bone only mets and now showing inflammation in my lungs. Had more scans and genomic testing for mutations and it turns out I have no mutations that have been studied yet. My oncologist is putting me on Xeloda and says
Been through the wringer and back over the past month. Scans showed progression. Had bone only mets and now showing inflammation in my lungs. Had more scans and genomic testing for mutations and it turns out I have no mutations that have been studied yet. My oncologist is putting me on Xeloda and says
CTGirl1962
in
SHARE Metastatic Breast Cancer
5 months ago
RIP Debbie
My dear wife Debbie died last Thursday morning, aged 60. We are of course heartbroken, but Debbie is now at peace. Debbie was initially diagnosed with Parkinson's / Parkinsonism this time 4 years ago, with diagnosis changing to MSA 2 years ago, although I strongly suspected MSA a year into initial Parkinson's
My dear wife Debbie died last Thursday morning, aged 60. We are of course heartbroken, but Debbie is now at peace. Debbie was initially diagnosed with Parkinson's / Parkinsonism this time 4 years ago, with diagnosis changing to MSA 2 years ago, although I strongly suspected MSA a year into initial Parkinson's
leroybrown
in
Multiple System Atrophy Trust
6 months ago
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Carbomer eye gel
Good morning. I was at the ophthalmologist yesterday getting umpteen scans and things due to taking hydroxychloroquine. I have very dry eyes once the UV starts to increase (usually February so bang on time). The ophthalmologist gave me carbomer eye gel to use before I go to bed and told me to continue
Good morning. I was at the ophthalmologist yesterday getting umpteen scans and things due to taking hydroxychloroquine. I have very dry eyes once the UV starts to increase (usually February so bang on time). The ophthalmologist gave me carbomer eye gel to use before I go to bed and told me to continue
Whippet_lady
in
LUPUS UK
5 months ago
Answer to unknown question
Jan 2024 (after lots of research and nearly 3 years on from original diagnosis of Metastatic Prostate Cancer with extensive bone metastases) I have just worked out the answer to the question I didn't know I wanted to ask. Instead of worrying about PSA and other test results my real concern was "what
Jan 2024 (after lots of research and nearly 3 years on from original diagnosis of Metastatic Prostate Cancer with extensive bone metastases) I have just worked out the answer to the question I didn't know I wanted to ask. Instead of worrying about PSA and other test results my real concern was "what
Brendan1904
in
Advanced Prostate Cancer
6 months ago
End of life information for heart disease sufferers
I have severe LMS coronary artery disease, cannot have surgery, have had five PCI interventions, am on 18 diffrerent medications and am now probably out of options. No-one is willing to discuss with me what my final time will be like tnor what can be done to ease it, hough one doctor did say that dying
I have severe LMS coronary artery disease, cannot have surgery, have had five PCI interventions, am on 18 diffrerent medications and am now probably out of options. No-one is willing to discuss with me what my final time will be like tnor what can be done to ease it, hough one doctor did say that dying
Jessica37
in
British Heart Foundation
6 months ago
What's next?
As I've written before, my husband stopped all treatment and is receiving palliative care. Just got the results of his 3-mo. PSA and it's jumped from 40 to 91. Wondering if there's any way to know if/when symptoms will start appearing due to PCa's further or worsening spread? He experiences some pain
As I've written before, my husband stopped all treatment and is receiving palliative care. Just got the results of his 3-mo. PSA and it's jumped from 40 to 91. Wondering if there's any way to know if/when symptoms will start appearing due to PCa's further or worsening spread? He experiences some pain
Shamrock46
in
Advanced Prostate Cancer
6 months ago
Update finally on treatment
Hello ladies and gentlemen, I am finally on treatment, it took nearly 4 months from dx to treatment (due to moving from South Carolina to Seattle area). I am on Ibrance (Dec. 13th) and letrozole (Nov. 16th). And I am on palliative care for pain management since I have neuropathy in my left arm and hand
Hello ladies and gentlemen, I am finally on treatment, it took nearly 4 months from dx to treatment (due to moving from South Carolina to Seattle area). I am on Ibrance (Dec. 13th) and letrozole (Nov. 16th). And I am on palliative care for pain management since I have neuropathy in my left arm and hand
monkeygirl62
in
SHARE Metastatic Breast Cancer
6 months ago
PSA suppression
My PSA lows tend to be around 3.3, and it occurs to me that some might think it odd that I don't drive it lower. I think it is very common for men on ADT to draw too much comfort from a significant PSA reduction, if not a near-zero PSA. I have witnessed men misinterpret a dramatic drop in PSA as
My PSA lows tend to be around 3.3, and it occurs to me that some might think it odd that I don't drive it lower. I think it is very common for men on ADT to draw too much comfort from a significant PSA reduction, if not a near-zero PSA. I have witnessed men misinterpret a dramatic drop in PSA as
pca2004
in
Fight Prostate Cancer
7 months ago
Confusing news from oncologist
Hi all, looking for some insight or direction based off of any experiences or similar ones. My dad started chemo in October with a PSA of 126. After 2 rounds of chemo, his PSA rose to 153, we saw some increase in his bone metastasis as according to the scans (posted about this previously). My dad
Hi all, looking for some insight or direction based off of any experiences or similar ones. My dad started chemo in October with a PSA of 126. After 2 rounds of chemo, his PSA rose to 153, we saw some increase in his bone metastasis as according to the scans (posted about this previously). My dad
StayingSTRNG
in
Advanced Prostate Cancer
7 months ago
QoL: "The berries remain, though the leaves are gone."
I travelled to Scotland to see my father for an early Christmas, and then to West Yorkshire to see my mum. My dad had requested a couple of paintings to hang on his wall as a reminder for when I am no longer here, this being part of his adjustment that I am now receiving care for pain management only
I travelled to Scotland to see my father for an early Christmas, and then to West Yorkshire to see my mum. My dad had requested a couple of paintings to hang on his wall as a reminder for when I am no longer here, this being part of his adjustment that I am now receiving care for pain management only
BrentW
in
Advanced Prostate Cancer
7 months ago
Hair thinning
This is probably a silly question, however I have had multiple different eye drops over the past 7 years for my Glaucoma, and are currently using Travatan and Combigan. Had anybody noticed any changes in hair thinning or hair loss. I seem to have thinning of my hair and are concerned, if this continues
This is probably a silly question, however I have had multiple different eye drops over the past 7 years for my Glaucoma, and are currently using Travatan and Combigan. Had anybody noticed any changes in hair thinning or hair loss. I seem to have thinning of my hair and are concerned, if this continues
Moana64
in
Glaucoma UK
1 year ago
Off Topic Friday: Jessie's Woodland Walk VIII
A fellow member of the cabaret group with which I sing (more like squawk and croak nowadays) continues to send me photographs of what she refers to as being 'Brent's Corner'. I in turn do what I can to abstract paintings from them -- meaning in the sense of abstracting an image. This is my eight attempt
A fellow member of the cabaret group with which I sing (more like squawk and croak nowadays) continues to send me photographs of what she refers to as being 'Brent's Corner'. I in turn do what I can to abstract paintings from them -- meaning in the sense of abstracting an image. This is my eight attempt
BrentW
in
Care Community
8 months ago
QoL: Jessie's Woodland Walk VIII
A fellow member of the cabaret group with which I sing (more like squawk and croak nowadays) continues to send me photographs of what she refers to as being '[i]Brent's Corner[/i]'. I in turn do what I can to abstract paintings from them -- meaning in the sense of abstracting an image. This is my eight
A fellow member of the cabaret group with which I sing (more like squawk and croak nowadays) continues to send me photographs of what she refers to as being '[i]Brent's Corner[/i]'. I in turn do what I can to abstract paintings from them -- meaning in the sense of abstracting an image. This is my eight
BrentW
in
Advanced Prostate Cancer
8 months ago
Yes to trial.
And so it starts. I’ve made the decision,. Starting a new post here because the other one was getting too confusing for me. I’ve been asked to go in for an Echocardiogram on Friday. In 2 days time. Preparation for trial. But nothing worries me much right now more than how terrible I am feeling. Just
And so it starts. I’ve made the decision,. Starting a new post here because the other one was getting too confusing for me. I’ve been asked to go in for an Echocardiogram on Friday. In 2 days time. Preparation for trial. But nothing worries me much right now more than how terrible I am feeling. Just
Timtam56
in
SHARE Metastatic Breast Cancer
8 months ago
Great progress on Pegasys!
I’ve been on Pegasys for 16 months. When I started, my JAK-2 Allele burden was 29%. Today it is 14%! I was one of the folks who needed a higher dose of Peg to respond. Over 7 months, my dose was gradually increased, and I didn’t see a response until I was at 180mg/week. My blood work is now 100%
I’ve been on Pegasys for 16 months. When I started, my JAK-2 Allele burden was 29%. Today it is 14%! I was one of the folks who needed a higher dose of Peg to respond. Over 7 months, my dose was gradually increased, and I didn’t see a response until I was at 180mg/week. My blood work is now 100%
Minify
in
MPN Voice
48 minutes ago
Worried- pressure at 5 at trabeculectomy follow up today
Has anyone had to deal with low pressure after trabeculecyomy? I had the fourth of my weekly post- trabeculectomy follow ups today. The pressure was 5. Before the operation the pressure was consistently around 15. Week one after surgery it was 15, week two, 17 ( then stitch removed) Week 3 was 20. Stitch
Has anyone had to deal with low pressure after trabeculecyomy? I had the fourth of my weekly post- trabeculectomy follow ups today. The pressure was 5. Before the operation the pressure was consistently around 15. Week one after surgery it was 15, week two, 17 ( then stitch removed) Week 3 was 20. Stitch
Iona57
in
Glaucoma UK
20 hours ago
Filling the syringe
I did my first 8 subcutaneous b12 injections as I was shown by the doctor. Since then the nurse at my g.p. surgery has been doing my injections every 2 weeks as prescribed. (She offered me the choice of continuing to do it myself or she would do it.)The consultant had told me if I wanted to give myself
I did my first 8 subcutaneous b12 injections as I was shown by the doctor. Since then the nurse at my g.p. surgery has been doing my injections every 2 weeks as prescribed. (She offered me the choice of continuing to do it myself or she would do it.)The consultant had told me if I wanted to give myself
Suesue246
in
Pernicious Anaemia Society
21 hours ago
SSI Registration - any reason not to?
Hi, I asked my previous eye consultant if they would fill a form out to say I was visually impaired. It was a few years ago but they refused which was frustrating because I wanted to apply for a disabled railcard :-). Anyway pretty much out of the blue my current eye consultant proactively asked
Hi, I asked my previous eye consultant if they would fill a form out to say I was visually impaired. It was a few years ago but they refused which was frustrating because I wanted to apply for a disabled railcard :-). Anyway pretty much out of the blue my current eye consultant proactively asked
Blindbatuk
in
Glaucoma UK
23 hours ago
MPN and vision problems
Hi all I'd like to ask if anyone has experienced vision problems associated with their MPN? I have ET (Jak2+) and in recent months have had frequent/daily disturbances in the periphery (bottom right) of my vision. It's different from the 'classic' scintillating scotoma (visual migraine/migraine with
Hi all I'd like to ask if anyone has experienced vision problems associated with their MPN? I have ET (Jak2+) and in recent months have had frequent/daily disturbances in the periphery (bottom right) of my vision. It's different from the 'classic' scintillating scotoma (visual migraine/migraine with
junebuggy
in
MPN Voice
2 days ago
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