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I’m Coco & today Joolsg suggested I post re upcoming NHS Iron Infusion
Hello RLS people I’ve been here for a while reading & learning, getting the impression this is a very well informed serious & supportive community. You’ve helped me understand a lot…but am very aware there’s lots more to get my head around, so thanks for being here! now am about to have this IV
Hello RLS people I’ve been here for a while reading & learning, getting the impression this is a very well informed serious & supportive community. You’ve helped me understand a lot…but am very aware there’s lots more to get my head around, so thanks for being here! now am about to have this IV
Barnclown
in
Restless Legs Syndrome
2 months ago
Meeting with our oncologist for castrate resistance metastatic prostate cancer
We met with my Dad's MO yesterday. (Diagnosed 10/22 with advanced metastatic cancer, became castrate resistant about a year ago.) He shared that the Xtandi is still blocking some cancer growth, but not all of it. His PSA is 2.8 (currently doubling every four weeks.) His PetScan shows some growth (
We met with my Dad's MO yesterday. (Diagnosed 10/22 with advanced metastatic cancer, became castrate resistant about a year ago.) He shared that the Xtandi is still blocking some cancer growth, but not all of it. His PSA is 2.8 (currently doubling every four weeks.) His PetScan shows some growth (
lgutman
in
Advanced Prostate Cancer
2 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
11 months ago
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In need of a hug
I am sitting with my dad tonight in hospital. He is getting palliative care for inoperable brain bleeds. The night is so dark (no moonlight) and the feelings of gloom and helplessness seems darker and heavier than the day before.
I am sitting with my dad tonight in hospital. He is getting palliative care for inoperable brain bleeds. The night is so dark (no moonlight) and the feelings of gloom and helplessness seems darker and heavier than the day before.
blackcat64013
in
Anxiety and Depression Support
2 months ago
Docxtel triple therapy?
Thank you for sharing your thoughts. My dad--81, advanced metastatic castrate resistant Diagnosed at 79 with stage 4 met 8 bones, including skull, no Gleason, never even saw a urologist. Diagnosed in ER and sent straight to the oncologist and palliative care doctor. PSA initially at 137 Lupron
Thank you for sharing your thoughts. My dad--81, advanced metastatic castrate resistant Diagnosed at 79 with stage 4 met 8 bones, including skull, no Gleason, never even saw a urologist. Diagnosed in ER and sent straight to the oncologist and palliative care doctor. PSA initially at 137 Lupron
lgutman
in
Advanced Prostate Cancer
3 months ago
Moving on to hospice care
many of you have heard from me before at this point. My dad (68, diagnosed almost 2 years ago) had his last appointment with his MO two weeks ago or so. Radium 223 is out of the picture for him as he is just not well and it would not aid his survival at this point. They suggested some radiation for the
many of you have heard from me before at this point. My dad (68, diagnosed almost 2 years ago) had his last appointment with his MO two weeks ago or so. Radium 223 is out of the picture for him as he is just not well and it would not aid his survival at this point. They suggested some radiation for the
StayingSTRNG
in
Advanced Prostate Cancer
3 months ago
Butron patch
hi I’ve had the hospice nurse around this week and les is now under the palliative care team , she’s prescribed Butron Parches for les along with morphine tablets for under the tongue and then injection vials , I’ve no idea why the vials as obviously it’s not for me to administer, I worry that they
hi I’ve had the hospice nurse around this week and les is now under the palliative care team , she’s prescribed Butron Parches for les along with morphine tablets for under the tongue and then injection vials , I’ve no idea why the vials as obviously it’s not for me to administer, I worry that they
DeeMilo25
in
Multiple System Atrophy Trust
3 months ago
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
3 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
3 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
4 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
4 months ago
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
3 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
4 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
4 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
5 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
5 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
5 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
5 months ago
Iopidine
Hello everyone, is anyone having problem with getting GP to prescibe Iopidine eye drops? My GP is refusing to prescribe it, saying its coming up as a red flag. Does anyone know what it means? This was prescribed by a consultant at hospital on 22nd March, when I was put on a waiting list for presserflo
Hello everyone, is anyone having problem with getting GP to prescibe Iopidine eye drops? My GP is refusing to prescribe it, saying its coming up as a red flag. Does anyone know what it means? This was prescribed by a consultant at hospital on 22nd March, when I was put on a waiting list for presserflo
Amjan
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
6 months ago
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