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Sorry I have not posted for a while
I am really sorry no one has heard from me for a while. Sadly I have not been too well being struck down with a nasty coughing /flu like virus( not Covid). So last chemo was postponed.On top of this my haemoglobin has dropped to 68! So I am completely exhausted. Blood transfusion tomorrow so hopefully
I am really sorry no one has heard from me for a while. Sadly I have not been too well being struck down with a nasty coughing /flu like virus( not Covid). So last chemo was postponed.On top of this my haemoglobin has dropped to 68! So I am completely exhausted. Blood transfusion tomorrow so hopefully
BadgerBright
in
My Ovacome
11 months ago
Update.
Just arrived home from having my Blood transfusion. Breathing less laboured already. Two bags infused. Hopefully things will pick up now love and strength to all.
Just arrived home from having my Blood transfusion. Breathing less laboured already. Two bags infused. Hopefully things will pick up now love and strength to all.
Jacksc06
in
CLL Support
11 months ago
3rd Rituxin infusion completed.
Had my 3rd infusion today. Feeling generally burned out but determined to fight on. Blood transfusion on Thursday and final infusion next Tuesday. Love and strength to all.
Had my 3rd infusion today. Feeling generally burned out but determined to fight on. Blood transfusion on Thursday and final infusion next Tuesday. Love and strength to all.
Jacksc06
in
CLL Support
11 months ago
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Busy week ahead.
Has a call from my macmillan nurse this morning. I am to have a blood transfusion next Thursday. Chemo on Tuesday and a CT scan on Friday. Hoping that all of this will give some answers and improvements.
Has a call from my macmillan nurse this morning. I am to have a blood transfusion next Thursday. Chemo on Tuesday and a CT scan on Friday. Hoping that all of this will give some answers and improvements.
Jacksc06
in
CLL Support
11 months ago
the curse of lifelong RLS…
I have had RLS for 33 years, I am 63 now with two grown up daughters. My symptoms first presented when I was pregnant, they were annoying but relatively intermittent and manageable - this is how it continued for many years with symptoms presenting during the night. I coped without medication, massaging
I have had RLS for 33 years, I am 63 now with two grown up daughters. My symptoms first presented when I was pregnant, they were annoying but relatively intermittent and manageable - this is how it continued for many years with symptoms presenting during the night. I coped without medication, massaging
soundofmetal
in
Restless Legs Syndrome
11 months ago
Pluvicto, Not Helping
I just had round 5 of Pluvicto on August 10th. I don't see where is is helping much, if any, at all. My PSA before entering round 5 is now over 400. I'm so anemic I've had two blood transfusions in the past 30 days. When I went in for round 5 I was so weak and frail that I had to be pushed around in
I just had round 5 of Pluvicto on August 10th. I don't see where is is helping much, if any, at all. My PSA before entering round 5 is now over 400. I'm so anemic I've had two blood transfusions in the past 30 days. When I went in for round 5 I was so weak and frail that I had to be pushed around in
bglendi53
in
Advanced Prostate Cancer
11 months ago
is it menopause?
I am 47. I had an eblasion about 15 years ago due to extremely heavy periods. I became very sick and anemic and it was either a blood transfusion every month or an eblasion. I have gotten to the point of horrible night sweats, nightmares, not sleeping,and even lost weight bc I am not eating much. I
I am 47. I had an eblasion about 15 years ago due to extremely heavy periods. I became very sick and anemic and it was either a blood transfusion every month or an eblasion. I have gotten to the point of horrible night sweats, nightmares, not sleeping,and even lost weight bc I am not eating much. I
Blugirl76
in
Menopause and Perimenopause Support
11 months ago
update and advice on flights
understanding. She has given me the form to get my iron tested but did say it would be difficult to get anybody to agree to an iv iron transfusion but let’s wait and see what my bloods come back as first. She has prescribed me gabapentin, at my request, but think I may try to manage it a bit again first
understanding. She has given me the form to get my iron tested but did say it would be difficult to get anybody to agree to an iv iron transfusion but let’s wait and see what my bloods come back as first. She has prescribed me gabapentin, at my request, but think I may try to manage it a bit again first
Patters56
in
Restless Legs Syndrome
11 months ago
Dr's visited didn't go as I
[u]Hi everyone,[/u]
[u] [/u]
[u]Yesterday was my 3 month visit with the Neurologist didn't go as I hoped, we talked about my potassium being quite high, and what were my only two options. One would be giving a blocker or another option was to poop it out. "Sorry" for that detail, but
[u]Hi everyone,[/u]
[u] [/u]
[u]Yesterday was my 3 month visit with the Neurologist didn't go as I hoped, we talked about my potassium being quite high, and what were my only two options. One would be giving a blocker or another option was to poop it out. "Sorry" for that detail, but
bbeba103
in
Kidney Disease
11 months ago
Anaemia
Well, seems that I am anaemic after all: blood tests at Marsden showef Hb of 114: low enough for me to feel lousy but not low enough for transfusion. Maybe one unit in s couple of weeks time if on retesting. Its dropprd below 110. Will then try starting EPO injections when I get back from holiday
Well, seems that I am anaemic after all: blood tests at Marsden showef Hb of 114: low enough for me to feel lousy but not low enough for transfusion. Maybe one unit in s couple of weeks time if on retesting. Its dropprd below 110. Will then try starting EPO injections when I get back from holiday
Rachelthepotter
in
MPN Voice
11 months ago
Latest update on my FEDORA trials experience and ongoing treatment.
I am being treated at University Hospital Southampton, I’ve now been on the FEDORA trial since beginning of November 2022 and am (or was) starting cycle 10 (4-week cycles). I came back from holiday yesterday and had blood tests today which didn’t go as well as hoped for as my platelet count is below
I am being treated at University Hospital Southampton, I’ve now been on the FEDORA trial since beginning of November 2022 and am (or was) starting cycle 10 (4-week cycles). I came back from holiday yesterday and had blood tests today which didn’t go as well as hoped for as my platelet count is below
Flyingsteamer
in
MPN Voice
11 months ago
FDA approves niraparib and abiraterone acetate plus prednisone for BRCA-mutated metastatic castration-resistant prostate cancer - 08/11/2023
On August 11, 2023, the Food and Drug Administration approved the fixed dose combination of niraparib and abiraterone acetate (Akeega, Janssen Biotech, Inc.), with prednisone, for adult patients with deleterious or suspected deleterious BRCA-mutated castration-resistant prostate cancer (mCRPC), as determined
On August 11, 2023, the Food and Drug Administration approved the fixed dose combination of niraparib and abiraterone acetate (Akeega, Janssen Biotech, Inc.), with prednisone, for adult patients with deleterious or suspected deleterious BRCA-mutated castration-resistant prostate cancer (mCRPC), as determined
cujoe
in
Fight Prostate Cancer
11 months ago
Grateful but ….
I am extremely grateful to all you wonderful people who have contacted me throughout this ordeal. Yes I’ve survived the operation but I didn’t fully realise how bad things could be in the immediate aftermath. I had to have two transfusions last night of something because my heart was racing. Also I
I am extremely grateful to all you wonderful people who have contacted me throughout this ordeal. Yes I’ve survived the operation but I didn’t fully realise how bad things could be in the immediate aftermath. I had to have two transfusions last night of something because my heart was racing. Also I
highburyted
in
British Heart Foundation
11 months ago
Hello strangers.
Hello, just thought that having been banned from the Cllforum years ago for no good reason, I would catch up with what has been happening to some of the people I liked so much. (I was banned for complaining about the ALT-MED stuff that used to appear so regularly there, and the fact that it was treated
Hello, just thought that having been banned from the Cllforum years ago for no good reason, I would catch up with what has been happening to some of the people I liked so much. (I was banned for complaining about the ALT-MED stuff that used to appear so regularly there, and the fact that it was treated
andysnat
in
CLL Support
11 months ago
Side effects of Zytiga?
My Dad is 73 years old and is currently under generic Zytiga medication for a month now. His latest PSA a week ago was about 9000 and he is experiencing bone pain, nausea and vomiting. He also cannot eat anything and losing weight. His hemoglobin is also low (68) ang got a blood transfusion last week
My Dad is 73 years old and is currently under generic Zytiga medication for a month now. His latest PSA a week ago was about 9000 and he is experiencing bone pain, nausea and vomiting. He also cannot eat anything and losing weight. His hemoglobin is also low (68) ang got a blood transfusion last week
brktym
in
Advanced Prostate Cancer
1 year ago
TW: TFMR and loss
Hi, I've just recently had a TFMR for Trisomy 18 at 13+4. It was really traumatic and ended up with surgery and blood transfusions. My egg collection gave me 2 embryos, my first which resulted in this pregnancy and one that is frozen. I'm nervous about the frozen embryo having the same issues but I'm
Hi, I've just recently had a TFMR for Trisomy 18 at 13+4. It was really traumatic and ended up with surgery and blood transfusions. My egg collection gave me 2 embryos, my first which resulted in this pregnancy and one that is frozen. I'm nervous about the frozen embryo having the same issues but I'm
Molliemoo85
in
Fertility Network UK
1 year ago
CKD new diagnosis.
I have several spinal injuries, successive surgeries etc. blah blah blahDealing with chronic pain 24/7. Recently had bood and iron transfused due to severe Anaemia. HG 72 They also did blood and urine tests and told me I had CKD Stage 3 which was a complete shock, and has left me scared and confused
I have several spinal injuries, successive surgeries etc. blah blah blahDealing with chronic pain 24/7. Recently had bood and iron transfused due to severe Anaemia. HG 72 They also did blood and urine tests and told me I had CKD Stage 3 which was a complete shock, and has left me scared and confused
Jane_the_Pain
in
Pain Concern
1 year ago
Varices
I have just joined this group and hope my story helps. I had an internal bleed Sept 2019 and was extremely lucky to survive. 2 weeks before i'd had a dizzy spell and collapsed in a faint in Aldi. My GP wouldnt allow me to return to work while investigating my BP etc. I felt mildly nauseous for 2
I have just joined this group and hope my story helps. I had an internal bleed Sept 2019 and was extremely lucky to survive. 2 weeks before i'd had a dizzy spell and collapsed in a faint in Aldi. My GP wouldnt allow me to return to work while investigating my BP etc. I felt mildly nauseous for 2
Treble2023
in
British Liver Trust
1 year ago
SCT Indicators
I have had my follow up visit with the transplant team and they have found 6 x 100% matches in their 30s. So this is good and also humbling to think that complete strangers would do this for you. I have been told that right now the risk outweighs the benefit and I should go and enjoy my life and maintain
I have had my follow up visit with the transplant team and they have found 6 x 100% matches in their 30s. So this is good and also humbling to think that complete strangers would do this for you. I have been told that right now the risk outweighs the benefit and I should go and enjoy my life and maintain
UKZA
in
MPN Voice
1 year ago
Seeking options/opinions
I hope you look back on previous posts and background. Finished Pluvicto in spring 23. Started out fine but went sideways. By mid May, psa and alk were on rise. MO suggested going to Xofigo but hemoglobin numbers were too low, sub 7, got transfusion. Decided to rechallenge with taxotere. (Zytiga worked
I hope you look back on previous posts and background. Finished Pluvicto in spring 23. Started out fine but went sideways. By mid May, psa and alk were on rise. MO suggested going to Xofigo but hemoglobin numbers were too low, sub 7, got transfusion. Decided to rechallenge with taxotere. (Zytiga worked
RunThru
in
Advanced Prostate Cancer
1 year ago
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