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Update
Hi ladies. I haven’t posted or even looked at this site for a few weeks now, as I defaulted to my usual stance of avoidance. If I don’t talk about it or read about it, it will go away. I’m in a better head space now and want to share the update, in the hope of some positive stories from anyone with
Hi ladies. I haven’t posted or even looked at this site for a few weeks now, as I defaulted to my usual stance of avoidance. If I don’t talk about it or read about it, it will go away. I’m in a better head space now and want to share the update, in the hope of some positive stories from anyone with
Beaver54
in
My Ovacome
9 months ago
set back
my mind is going in overdrive with worry and anxiety. I’ve told someone about a couple of my anxiety triggers that I’ve never told anyone before. The thing is they’re so pathetic and small that I feel so ashamed and embarrassed and wished I’d never let the cat out of the bag so to speak. I was under
my mind is going in overdrive with worry and anxiety. I’ve told someone about a couple of my anxiety triggers that I’ve never told anyone before. The thing is they’re so pathetic and small that I feel so ashamed and embarrassed and wished I’d never let the cat out of the bag so to speak. I was under
Junkjournal1
in
Anxiety and Depression Support
6 months ago
New member - Post ET MF (Australia)
I'm 42, married with six children, and I live in Australia. In 2013, I was diagnosed with CAL-R positive ET. I started taking aspirin and managed pretty well. After a spontaneous bleed in my right quadricep, it was discovered that I also had a genetic bleeding disorder, dysfibrinogenemia. After that
I'm 42, married with six children, and I live in Australia. In 2013, I was diagnosed with CAL-R positive ET. I started taking aspirin and managed pretty well. After a spontaneous bleed in my right quadricep, it was discovered that I also had a genetic bleeding disorder, dysfibrinogenemia. After that
Hatchie
in
MPN Voice
3 months ago
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Hello all I've had crohns and stomas since 1976 I now have short bowel and an Ileostomy
I've had crohns since 1976 and my first resection june 1977 colostomy formed I spent six weeks in hospital because I couldn't accept mt colostomy at first I wouldn't touch it or change the bag, then after five weeks I thought I've got to accept it and get on with my life, after 46 years I've had five
I've had crohns since 1976 and my first resection june 1977 colostomy formed I spent six weeks in hospital because I couldn't accept mt colostomy at first I wouldn't touch it or change the bag, then after five weeks I thought I've got to accept it and get on with my life, after 46 years I've had five
SoFedUp2023
in
Crohn's and Colitis Support
8 months ago
Metastasized to Bones
I have been seeing post saying poeple being diagnosed with metastasized PC. I was diagnosed with PC metastasized to my bones, after being under urologist care for 18 months I am wondering if poeple who get initially diagnosed with metastasized PC, whether it is because they were not under medical care
I have been seeing post saying poeple being diagnosed with metastasized PC. I was diagnosed with PC metastasized to my bones, after being under urologist care for 18 months I am wondering if poeple who get initially diagnosed with metastasized PC, whether it is because they were not under medical care
hopefull99
in
Advanced Prostate Cancer
10 months ago
Prostate cancer in liver
Have recently had a PSMA scan. This did show some hot spots for sure. But also, three smaller spots on my liver that did not give off PSMA. Did a liver Biopsy. which is rather painful I might add. Will meet with my 0ncologist on Monday to look at options. Any suggestion for the three rather small spots
Have recently had a PSMA scan. This did show some hot spots for sure. But also, three smaller spots on my liver that did not give off PSMA. Did a liver Biopsy. which is rather painful I might add. Will meet with my 0ncologist on Monday to look at options. Any suggestion for the three rather small spots
Parscore
in
Advanced Prostate Cancer
10 months ago
Thank you all
I wanted to get on here and thank everyone for there input on my questions about PIQRAY. After all my do diligence on PIQRAY my oncologist threw me a curve ball and decided to go with Verzenio faslodex and xgeva. Because i had higher % of Ers1 mutations then Pik3ca mutations. So this past thursday i
I wanted to get on here and thank everyone for there input on my questions about PIQRAY. After all my do diligence on PIQRAY my oncologist threw me a curve ball and decided to go with Verzenio faslodex and xgeva. Because i had higher % of Ers1 mutations then Pik3ca mutations. So this past thursday i
Justme153
in
SHARE Metastatic Breast Cancer
10 months ago
Please check!
Earlier today I posted the link to the PBC Foundaton's Urso calculator. There are so many posts and questions relating to Urso that I thought it was important for everyone to make sure they are on the right dose. This 'calculator' is also available on the PBC app. Knowing you are taking the right dose
Earlier today I posted the link to the PBC Foundaton's Urso calculator. There are so many posts and questions relating to Urso that I thought it was important for everyone to make sure they are on the right dose. This 'calculator' is also available on the PBC app. Knowing you are taking the right dose
DonnaBoll
Administrator
in
PBC Foundation
6 months ago
Stem cell transplant (SCT) 15 months on
I'm now 15 months after my SCT and in my my recent review my figures are improving:WBC 4.0 HB 139 Neut 2.3, lymph1.12 and platelets 106 ( highest for a couple of years). I also had my CD4 lymphocytes measured and can now come off Acyclovir and pentamidine. Hooray! I hated those nebulisers. This leaves
I'm now 15 months after my SCT and in my my recent review my figures are improving:WBC 4.0 HB 139 Neut 2.3, lymph1.12 and platelets 106 ( highest for a couple of years). I also had my CD4 lymphocytes measured and can now come off Acyclovir and pentamidine. Hooray! I hated those nebulisers. This leaves
Scaredy_cat
in
MPN Voice
3 months ago
my son is not recovering from widraal symptoms of clonotill
over 8 months now he is in out psychiatry clinic a lot of pills and antidepresants and still feels bad . he was put on faverin 150mg and after 3 months he stoped and he is on bretellix 10 mg he coplains of brain zaps and looks excausted and dosent talk much and once again his gone to
over 8 months now he is in out psychiatry clinic a lot of pills and antidepresants and still feels bad . he was put on faverin 150mg and after 3 months he stoped and he is on bretellix 10 mg he coplains of brain zaps and looks excausted and dosent talk much and once again his gone to
morcan54
in
Anxiety and Depression Support
6 months ago
Weak positive
Hi there I had a weak positive ANA it said speckled and 1.80 My dr has said no other action needed. Do I have the beginning of lupus. I already have type 1 diabetes, hashimoto and vitiligo. Thanks for any advice
Hi there I had a weak positive ANA it said speckled and 1.80 My dr has said no other action needed. Do I have the beginning of lupus. I already have type 1 diabetes, hashimoto and vitiligo. Thanks for any advice
Demilouise
in
LUPUS UK
7 months ago
Sitting is a pain 😖
Does anyone experience anal/rectal discomfort when sitting on hard surfaces? I feel it comes and goes. I'm female and don't have hemorrhoids What have doctors told you? Have you been diagnosed with anything? Has anything helped?
Does anyone experience anal/rectal discomfort when sitting on hard surfaces? I feel it comes and goes. I'm female and don't have hemorrhoids What have doctors told you? Have you been diagnosed with anything? Has anything helped?
Catsandsunsets
in
IBS Network
8 months ago
Shingrix side effects
just wondered what people’s experiences are with side effects after Shingrix? I had the first vaccine and was ill the next day with headaches, chills and feeling awful. However after the second vaccine the side effects have been worse, add in : headaches, unable to concentrate, weakness and wave upon
just wondered what people’s experiences are with side effects after Shingrix? I had the first vaccine and was ill the next day with headaches, chills and feeling awful. However after the second vaccine the side effects have been worse, add in : headaches, unable to concentrate, weakness and wave upon
Mandy56
in
CLL Support
6 months ago
Implications of positive if ‘weak ANA test’?
I have dry-eye confirmed by Moorfield’s. I also have dry mouth and my dentist said she suspected I had Sjorgren’s. When tested I proved to have a ‘weak positive ANA test’. What, if anything does that mean?
I have dry-eye confirmed by Moorfield’s. I also have dry mouth and my dentist said she suspected I had Sjorgren’s. When tested I proved to have a ‘weak positive ANA test’. What, if anything does that mean?
Morganalefaye
in
Scleroderma & Raynaud's UK (SRUK)
7 months ago
Blood in Stool
I have found some blood in stool. I had a postive Qfit Test but just postive at 14. My GP said he was not overly concerned. I have an external hemorrid. I was referred and saw a Gastronelogist today he did a rectal exam and said there was not concerning. I did tell him that I was concerned of
I have found some blood in stool. I had a postive Qfit Test but just postive at 14. My GP said he was not overly concerned. I have an external hemorrid. I was referred and saw a Gastronelogist today he did a rectal exam and said there was not concerning. I did tell him that I was concerned of
Shanlissanna
in
Colon Cancer Connected
10 months ago
Lupus questions
Good afternoon, My doctor has been helping me with some ongoing symptoms, and following a positive ANA test has now referred me to a rheumatologist, theorising I may have Lupus. Anti-nuclear factor level POSITIVE - Titre > 1:640 ANA PATTERN SPECKLED My symptoms are: - mild arthritis in my neck, back
Good afternoon, My doctor has been helping me with some ongoing symptoms, and following a positive ANA test has now referred me to a rheumatologist, theorising I may have Lupus. Anti-nuclear factor level POSITIVE - Titre > 1:640 ANA PATTERN SPECKLED My symptoms are: - mild arthritis in my neck, back
EllsBells591
in
LUPUS UK
7 months ago
UPSET WITH MYSELF
I wanted to go to a Small Group at my church tonight, as time got near, I had a meltdown and didn’t make it out the door. I just don’t know what I am going to do about this agoraphobia! It’s so frustrating! I have been watching my church on-line for months now because I can’t seem to be able to face
I wanted to go to a Small Group at my church tonight, as time got near, I had a meltdown and didn’t make it out the door. I just don’t know what I am going to do about this agoraphobia! It’s so frustrating! I have been watching my church on-line for months now because I can’t seem to be able to face
Littlebit2cute
in
Anxiety and Depression Support
6 months ago
stem cell transplant survival with MF
This link gives some figures for overall survival with or without a transplant. The headline really is the initial mortality close to the transplant is only worth risking if your MF is quite bad. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7218417/
This link gives some figures for overall survival with or without a transplant. The headline really is the initial mortality close to the transplant is only worth risking if your MF is quite bad. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7218417/
Scaredy_cat
in
MPN Voice
3 months ago
5yo Withholding, Soiling, Disimpaction, Soiling Again
Hi, wondering if anyone has had a similar experience. My now 5 year old girl has had problems with withholding and soiling since potty training. We’ve had support from the Gp, health visitor, school nurse and ERIC helpline. Since starting school in September the soiling had become worse, so we
Hi, wondering if anyone has had a similar experience. My now 5 year old girl has had problems with withholding and soiling since potty training. We’ve had support from the Gp, health visitor, school nurse and ERIC helpline. Since starting school in September the soiling had become worse, so we
RubyBeach
in
ERIC
8 months ago
Xeloda
This may be long! Moms journey with mbc started in 2020 . At the time lung Mets . She started ibrance and femara which worked great untill it didn’t this summer 2023. The cancer had spread to bones and 2 small liver and lesion and tiny brain lesion . Which was been taken care of with radiation and
This may be long! Moms journey with mbc started in 2020 . At the time lung Mets . She started ibrance and femara which worked great untill it didn’t this summer 2023. The cancer had spread to bones and 2 small liver and lesion and tiny brain lesion . Which was been taken care of with radiation and
Flower1513
in
SHARE Metastatic Breast Cancer
10 months ago
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