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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
8 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
9 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
9 months ago
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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
9 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
9 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
9 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
9 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
9 months 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
10 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
10 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
10 months ago
CDK12 gene mutation
My husband continues to be hormone sensitive but Sept. 4, 2023 he developed intense and unrelenting pain in his right mandible. The oncologist and palliative care nurse prescribed morphine and dilaudid to help reduce the pain. These pain meds are helping although he can still feel pain and gets breakthrough
My husband continues to be hormone sensitive but Sept. 4, 2023 he developed intense and unrelenting pain in his right mandible. The oncologist and palliative care nurse prescribed morphine and dilaudid to help reduce the pain. These pain meds are helping although he can still feel pain and gets breakthrough
Decktime
in
Advanced Prostate Cancer
10 months ago
First line of treatment
Well, I finally got to see my oncologist at Fred Hutchinson cancer center today. And finally a treatment plan! This all took time because I moved from South Carolina to Seattle for cancer treatment and to be with my kids. My oncologist was grateful I had done all the tests and biopsies prior to my appointment
Well, I finally got to see my oncologist at Fred Hutchinson cancer center today. And finally a treatment plan! This all took time because I moved from South Carolina to Seattle for cancer treatment and to be with my kids. My oncologist was grateful I had done all the tests and biopsies prior to my appointment
monkeygirl62
in
SHARE Metastatic Breast Cancer
11 months ago
Care Home response
Please can I thank everyone who sent a response to my original post. It is encouraging to hear from so many of you who have similar stories. My husband is responding well to the care home and the staff are lovely. I have had a lot of support from the health professionals , consultant, physio, speech
Please can I thank everyone who sent a response to my original post. It is encouraging to hear from so many of you who have similar stories. My husband is responding well to the care home and the staff are lovely. I have had a lot of support from the health professionals , consultant, physio, speech
Wybert
in
PSP Association
11 months ago
Palliative care, does it still exist?
I saw a consultant , for the first time since well before lockdown, on the 14th September. I'd never met him before but he was really great. He'd obviously read my notes as he asked about all my conditions, osteoporosis, swollen legs etc. He said my lung condition is now too far gone to put me through
I saw a consultant , for the first time since well before lockdown, on the 14th September. I'd never met him before but he was really great. He'd obviously read my notes as he asked about all my conditions, osteoporosis, swollen legs etc. He said my lung condition is now too far gone to put me through
wheezyof
in
Lung Conditions Community Forum
11 months ago
Nintedanib
Hi, I am absolutely useless with technology…… I wrote a lengthy update about myself, this drug, other drugs, hospital stay, decline of lung transplant at Harefield, referral to palliative care, oxygen - sorry goes on and on, just wanted to share the year’s overall experience. I can’t find the update
Hi, I am absolutely useless with technology…… I wrote a lengthy update about myself, this drug, other drugs, hospital stay, decline of lung transplant at Harefield, referral to palliative care, oxygen - sorry goes on and on, just wanted to share the year’s overall experience. I can’t find the update
Bonchops10
in
Living with Interstitial Lung Disease (ILD)
11 months ago
what is this exactly. ?
hi there. I have experienced the most intense pain ever to my righ thigh eventually spreading to my left leg also. I’m October 23 Doctors decided to fit a 7 inch titanium rod to the right femur as they believe that will provide support to the cancerous leg. I continue to have pain from the femur
hi there. I have experienced the most intense pain ever to my righ thigh eventually spreading to my left leg also. I’m October 23 Doctors decided to fit a 7 inch titanium rod to the right femur as they believe that will provide support to the cancerous leg. I continue to have pain from the femur
db1966
in
Advanced Prostate Cancer
11 months ago
Hello - I’m struggling
My brother almost died from sepsis due to a huge abscess left untreated by the hospital. On the scans they found him to have child Pugh class C decompensated liver cirrhosis. Total shock to us. He’s no longer decompensated but is seriously ill after being in hospital for two months, having three surgery
My brother almost died from sepsis due to a huge abscess left untreated by the hospital. On the scans they found him to have child Pugh class C decompensated liver cirrhosis. Total shock to us. He’s no longer decompensated but is seriously ill after being in hospital for two months, having three surgery
MrsAlien
in
British Liver Trust
11 months ago
Update on mum
Since my last post things have deteriorated quickly, mums swallowing has got a lot worse and she has choked twice and has crackles on her lungs which she has been given antibiotics for ( not quite sure how they will get these into her) the community matron updated me today and has told me that she is
Since my last post things have deteriorated quickly, mums swallowing has got a lot worse and she has choked twice and has crackles on her lungs which she has been given antibiotics for ( not quite sure how they will get these into her) the community matron updated me today and has told me that she is
Walking18
in
PSP Association
1 year ago
Oct 14th FREE live workshop!!!
Here's your chance to gain insights from an exceptional panel, discussing important healthcare challenges and solutions! 🌟 Spotlight on Ryne Wilson, DNP, RN, OCN: As a Clinical Assistant Professor at the University of Minnesota School of Nursing, Ryne brings a wealth of knowledge from his varied experiences
Here's your chance to gain insights from an exceptional panel, discussing important healthcare challenges and solutions! 🌟 Spotlight on Ryne Wilson, DNP, RN, OCN: As a Clinical Assistant Professor at the University of Minnesota School of Nursing, Ryne brings a wealth of knowledge from his varied experiences
MichelleL_BlueFaery
Editor
in
Blue Faery Liver Cancer
1 year ago
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