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Autoimmune Registry
I didn't know there was an Autoimmune Registry. However polymyalgia rheumatica is not found through their opening page search although it is on the list as a vascular disease, as is giant cell arteritis. Maybe their search function is as useful as HU's (used to be)? :D Or maybe they just haven't got
I didn't know there was an Autoimmune Registry. However polymyalgia rheumatica is not found through their opening page search although it is on the list as a vascular disease, as is giant cell arteritis. Maybe their search function is as useful as HU's (used to be)? :D Or maybe they just haven't got
HeronNS
in
PMRGCAuk
11 months ago
lung surgery
morning everyone been a member since 2014 don’t contribute very often but read everyday I have a large lung bulla and waiting to have it removed via robotic surgery I’m hoping someone has had this surgery and tell me there experience I’m 74 so any surgery is higher risk Thanks in advance Lyn
morning everyone been a member since 2014 don’t contribute very often but read everyday I have a large lung bulla and waiting to have it removed via robotic surgery I’m hoping someone has had this surgery and tell me there experience I’m 74 so any surgery is higher risk Thanks in advance Lyn
lynisa48
in
Lung Conditions Community Forum
1 year ago
CBD; worth a try for pain relief..?
Hello all, hope you're all reasonably well! As have posted here before, Dad is weak with Stage 4 Lung cancer an the immunotherapy that he's having. There's some pain and he keeps this at bay with paracetamol3x/day. I understand that CBD oil could be a good thing to try for pan relief. wondering
Hello all, hope you're all reasonably well! As have posted here before, Dad is weak with Stage 4 Lung cancer an the immunotherapy that he's having. There's some pain and he keeps this at bay with paracetamol3x/day. I understand that CBD oil could be a good thing to try for pan relief. wondering
Vip1
in
The Roy Castle Lung Cancer Foundation
1 year ago
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RA and live flu vaccine
HiMy daughter has rung to say my 2 year old grandson has just had a live flu vaccine. She said the GP has said to avoid people with very compromised immune systems, eg. they said, having bone marrow transplants, for a week. She asked if it was safe for them to see me and was told they had no guidance
HiMy daughter has rung to say my 2 year old grandson has just had a live flu vaccine. She said the GP has said to avoid people with very compromised immune systems, eg. they said, having bone marrow transplants, for a week. She asked if it was safe for them to see me and was told they had no guidance
Julia31
in
NRAS
11 months ago
Post stem cell transplant vaccinations
Hi. I am 11 months post transplant (AML). I am due to have my childhood vaccines next week. Just worried about reactions etc and it not being in the safety of the hospital.
Hi. I am 11 months post transplant (AML). I am due to have my childhood vaccines next week. Just worried about reactions etc and it not being in the safety of the hospital.
Platelets2022
in
Leukaemia Support
11 months ago
Severe reaction to immunotherapy
Hi My husband has mesothelioma and has been having immunotherapy (Ipilimumab and Nivolumab) every 3 weeks since early January this year. All was going well until last week when he had a severe reaction - diabetic ketoacidosis - and has been in hospital for a week while they try to stabilise his blood
Hi My husband has mesothelioma and has been having immunotherapy (Ipilimumab and Nivolumab) every 3 weeks since early January this year. All was going well until last week when he had a severe reaction - diabetic ketoacidosis - and has been in hospital for a week while they try to stabilise his blood
toffeepudding
in
The Roy Castle Lung Cancer Foundation
1 year ago
Strategic Masking to Protect Patients from All Respiratory Viral Infections
https://www.nejm.org/doi/full/10.1056/NEJMp2306223 - The end of the public health emergency in the United States is a richly symbolic milestone in the course of the SARS-CoV-2 pandemic. During the height of the pandemic, the virus killed millions of people worldwide, upended lives, and radically altered
https://www.nejm.org/doi/full/10.1056/NEJMp2306223 - The end of the public health emergency in the United States is a richly symbolic milestone in the course of the SARS-CoV-2 pandemic. During the height of the pandemic, the virus killed millions of people worldwide, upended lives, and radically altered
lankisterguy
Volunteer
in
CLL Support
1 year ago
Lung Cancer Research
Are you interested in being part of research but there is no clinical trial open to you at present? By using Your Health Companion, you will be part of a long-term research project designed to improve your experience and open the door to new and better cancer medicines for all. Many research projects
Are you interested in being part of research but there is no clinical trial open to you at present? By using Your Health Companion, you will be part of a long-term research project designed to improve your experience and open the door to new and better cancer medicines for all. Many research projects
YourHealthCompanion
in
The Roy Castle Lung Cancer Foundation
1 year ago
Blip in Immunitherapy ?
wonder if anyone has experience of a blip in immunotherapy treatment? My husband has stage 4 non small cell lung cancer He was diagnosed about 10 months ago and has been responding well to immunotherapy and chemotherapy (3 weekly treatments of pemetrexed and pembrolizubmab spelling maybe a bit wrong
wonder if anyone has experience of a blip in immunotherapy treatment? My husband has stage 4 non small cell lung cancer He was diagnosed about 10 months ago and has been responding well to immunotherapy and chemotherapy (3 weekly treatments of pemetrexed and pembrolizubmab spelling maybe a bit wrong
Holepunch
in
The Roy Castle Lung Cancer Foundation
1 year ago
Genetics - Children of Lung Cancer Patients
Hi all - I am a young mom who just underwent a lung wedge resection. I will be monitored for life, most likely - but I am wondering about my child. I have two EGFR mutations and am concerned about what this means for my son. Does anyone know much about testing younger patients -he is much too young now
Hi all - I am a young mom who just underwent a lung wedge resection. I will be monitored for life, most likely - but I am wondering about my child. I have two EGFR mutations and am concerned about what this means for my son. Does anyone know much about testing younger patients -he is much too young now
JustBreathe82
in
The Roy Castle Lung Cancer Foundation
1 year ago
Diagnosed 5 months post Operation with Fluid on the lung. Is this normal & will it clear up? Should I be concerned?
Hi everyone, I hope someone can help me understand my recent diagnosis. I'd a lower left lung lobectomy last November and recently had my follow up appointment which will be annually from now on. I was told by the registrar not the consultant that I'd fluid on my lung. I wasn't told anything more than
Hi everyone, I hope someone can help me understand my recent diagnosis. I'd a lower left lung lobectomy last November and recently had my follow up appointment which will be annually from now on. I was told by the registrar not the consultant that I'd fluid on my lung. I wasn't told anything more than
Eaglewings1
in
The Roy Castle Lung Cancer Foundation
1 year ago
My Recovery so far post Stem cell Transplant
Sorry I've been absent for so long, my stem cell transplant journey has been a difficult one to be honest and only now do I feel able to be able to tell the story so far. Thank you to everyone who kindly messaged me to see how I was and apologies for asking so long to respond. I really appreciated
Sorry I've been absent for so long, my stem cell transplant journey has been a difficult one to be honest and only now do I feel able to be able to tell the story so far. Thank you to everyone who kindly messaged me to see how I was and apologies for asking so long to respond. I really appreciated
Jm954
Administrator
in
CLL Support
11 months ago
FDA Program discussion with leaders from patient advocacy groups.
When: Jun 8, 2023 2:30 PM- 4:00 PM Eastern Time (US and Canada) Topic: FDA Patient Listening Session – Non-Small Cell Lung Cancer Patient Advocacy Groups Join us for a discussion with patient advocacy groups, patients, and caregivers, who will share challenges and opportunities as they advocate for
When: Jun 8, 2023 2:30 PM- 4:00 PM Eastern Time (US and Canada) Topic: FDA Patient Listening Session – Non-Small Cell Lung Cancer Patient Advocacy Groups Join us for a discussion with patient advocacy groups, patients, and caregivers, who will share challenges and opportunities as they advocate for
Denzie
Volunteer
in
Lung Cancer Support
1 year ago
Anxiety between CT scans
Hi, I have an 8mm lung nodule found incidentally about 9 mins ago. I've had a 3 month scan and coming up on the 6 mos one to see if it's changed. I'm worried all of the time that they will find it's grown tremendously and then all that comes with that. My spouse is no longer supportive of me because
Hi, I have an 8mm lung nodule found incidentally about 9 mins ago. I've had a 3 month scan and coming up on the 6 mos one to see if it's changed. I'm worried all of the time that they will find it's grown tremendously and then all that comes with that. My spouse is no longer supportive of me because
Beadygrl
in
Lung Conditions Community Forum
1 year ago
Anyone had a coronary sinus reducer?
I haven't been on here in a long while. My medical history is pretty complex, I'm seen locally at the Bristol Heart Institute but also under the care of the Cardio-oncology team at the Royal Brompton which a forum member told me about years ago thankfully. Basically my bone marrow transplant and other
I haven't been on here in a long while. My medical history is pretty complex, I'm seen locally at the Bristol Heart Institute but also under the care of the Cardio-oncology team at the Royal Brompton which a forum member told me about years ago thankfully. Basically my bone marrow transplant and other
SomersetJo
in
British Heart Foundation
11 months ago
Is there always a rash with vasculitis?
Hood morning everyone and thank you so much for your support so far. I’m still investigating how to try and get my my tested for vasculitis. She has a diagnosis of bronchocentric glanulomatosis currently but I would like her tested for vasculitis as she is currently just being treated with steroids
Hood morning everyone and thank you so much for your support so far. I’m still investigating how to try and get my my tested for vasculitis. She has a diagnosis of bronchocentric glanulomatosis currently but I would like her tested for vasculitis as she is currently just being treated with steroids
Muddywater100
in
Vasculitis UK
1 year ago
lung transplant
found this on my computer in box today you have probably seen it too but putting it on here hopefully
found this on my computer in box today you have probably seen it too but putting it on here hopefully
Jaybird19
in
Lung Conditions Community Forum
1 year ago
Join Us! Tomorrow, May 9th, Gathering HOPE Community Social
Hello! For those of you who know me and to those of you I may not have spoken with or met yet, I am Michele Zeh, Manager of the Lung Cancer Living Room Series and I am excited to invite you to our monthly Gathering HOPE Social hosted on our ZOOM link. Tomorrow, May 9th, at 5pm PT/8pm ET. At this meeting
Hello! For those of you who know me and to those of you I may not have spoken with or met yet, I am Michele Zeh, Manager of the Lung Cancer Living Room Series and I am excited to invite you to our monthly Gathering HOPE Social hosted on our ZOOM link. Tomorrow, May 9th, at 5pm PT/8pm ET. At this meeting
Michelezeh
Partner
in
Lung Cancer Support
1 year ago
Positive IFA, Negative Parietal Cell, B-12 injections affect IFA test
Hello, I recently tested positive for intrinsic factor blocking antibody but the result of my parietal cell antibody test was negative. I’m curious if other members have had this same experience? My doctors have suspected a PA diagnosis for several years. An IFA test about five years ago produced
Hello, I recently tested positive for intrinsic factor blocking antibody but the result of my parietal cell antibody test was negative. I’m curious if other members have had this same experience? My doctors have suspected a PA diagnosis for several years. An IFA test about five years ago produced
mcg-woo
in
Pernicious Anaemia Society
1 year ago
squamous cell lung cancer
I see many posts about adenocarcinoma but none on NSCLC Squamous cell. Can anyone share their experience with squamous cell lung cancer. Also if anyone has had PNI (peri neural invasion). After surgery I also have a lot of high grade dysplasia in bronchial margins. I had right upper lobe removed February
I see many posts about adenocarcinoma but none on NSCLC Squamous cell. Can anyone share their experience with squamous cell lung cancer. Also if anyone has had PNI (peri neural invasion). After surgery I also have a lot of high grade dysplasia in bronchial margins. I had right upper lobe removed February
Susie215
in
Lung Cancer Support
1 year ago
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