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Interstitial lung disease (ILD)
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ONLINE SUPPORT GROUPS
Our support groups are such a good way to connect with other's in a similar situation, they have really helped so many people make friendships and gain valuable knowledge around their treatment and care. If you have any queries about anything please get in touch, we would love to hear from you and help
Our support groups are such a good way to connect with other's in a similar situation, they have really helped so many people make friendships and gain valuable knowledge around their treatment and care. If you have any queries about anything please get in touch, we would love to hear from you and help
ConnectRoyCastle
Administrator
in
The Roy Castle Lung Cancer Foundation
6 months ago
new procedure
Using metered cryospray technology, pre-determined doses (based on patient anatomy) of liquid nitrogen are delivered systematically through the airways,” says Professor Shah. The RejuvenAir® System is designed with safety cut-off technology, which stops the flow of nitrogen once it reaches the required
Using metered cryospray technology, pre-determined doses (based on patient anatomy) of liquid nitrogen are delivered systematically through the airways,” says Professor Shah. The RejuvenAir® System is designed with safety cut-off technology, which stops the flow of nitrogen once it reaches the required
Trevor6
in
COPD Friends
6 months ago
Time flies... when you're having babies!
Afternoon all, Apologies for the radio silence for the best part of six months. I never intended to leave it this long before updating you all but life (and a certain little miss) got in the way! Cassie Jean Jackson came kicking and screaming in to the world at 8.28 am on Monday 16th October last
Afternoon all, Apologies for the radio silence for the best part of six months. I never intended to leave it this long before updating you all but life (and a certain little miss) got in the way! Cassie Jean Jackson came kicking and screaming in to the world at 8.28 am on Monday 16th October last
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
7 months ago
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X-ray vs Ct scan
Hi All, I just wanted to ask if anyone has had a clear normal X-ray result of their lungs then had different result from CT scan with contrast please thank you xx
Hi All, I just wanted to ask if anyone has had a clear normal X-ray result of their lungs then had different result from CT scan with contrast please thank you xx
Nat107
in
The Roy Castle Lung Cancer Foundation
7 months ago
Radiotherapy for lung cancer
After an oncologist appointment I was left deflated. I did know the risk of extra damage to the lung and possibly needing oxygen. She was talking like she didn't want me to try. At the moment they said I have 18 months to 2 years left and the Radiotherapy would give me an extra year . All of this is
After an oncologist appointment I was left deflated. I did know the risk of extra damage to the lung and possibly needing oxygen. She was talking like she didn't want me to try. At the moment they said I have 18 months to 2 years left and the Radiotherapy would give me an extra year . All of this is
Lizzielock
in
The Roy Castle Lung Cancer Foundation
7 months ago
Lung damage, ECMO, time taken to recover.
Hi, my uncle was diagnosed with pnemonia and a 90% lung damage on 18Dec. He was put on ventilator and ECMO on 20th, its been 35 days ans there has been no improvement in the lungs. he took about 20 days to come out of induced coma, doctors are now making him sit occasionally and hoping for some improvement
Hi, my uncle was diagnosed with pnemonia and a 90% lung damage on 18Dec. He was put on ventilator and ECMO on 20th, its been 35 days ans there has been no improvement in the lungs. he took about 20 days to come out of induced coma, doctors are now making him sit occasionally and hoping for some improvement
shivnajain
in
ICUsteps
7 months ago
Mum getting biopsy results tomorrow
Hi all, my beautiful mum is getting her biopsy results tomorrow (Friday) but has been told she has a tumour and there is potential spread to lymph nodes and that the plan will be chemotherapy and immunotherapy. She has had two x rays, a chest CT and bronchoscope/biopsies but no further tests just yet
Hi all, my beautiful mum is getting her biopsy results tomorrow (Friday) but has been told she has a tumour and there is potential spread to lymph nodes and that the plan will be chemotherapy and immunotherapy. She has had two x rays, a chest CT and bronchoscope/biopsies but no further tests just yet
DaughterofDiane
in
The Roy Castle Lung Cancer Foundation
7 months ago
Mycophenolate instead of Perfinedine or Nintenanib?
Hi everyone I became breathless suddenly in August 2023. This was initially dismissed by my GP even though O2 was 90% as my chest was clear and I had no cough. A fortnight later I was able to get an appointment with a different GP who sent me for a chest X ray which showed I had pulmonary fibrosis.
Hi everyone I became breathless suddenly in August 2023. This was initially dismissed by my GP even though O2 was 90% as my chest was clear and I had no cough. A fortnight later I was able to get an appointment with a different GP who sent me for a chest X ray which showed I had pulmonary fibrosis.
DaveLister
in
Lung Conditions Community Forum
7 months ago
Stopping Tagrisso
Hi, I was diagnosed in May 2021 with lung cancer, adenocarcinoma, EFGR, I was very breathless, couldn’t eat and fatigued at the beginning. When I had results of lung biopsy, I was told I was suitable to be treated with Tagrisso, a target treatment, daily tablet, this was July 2021. I had few side
Hi, I was diagnosed in May 2021 with lung cancer, adenocarcinoma, EFGR, I was very breathless, couldn’t eat and fatigued at the beginning. When I had results of lung biopsy, I was told I was suitable to be treated with Tagrisso, a target treatment, daily tablet, this was July 2021. I had few side
Goldmoon
in
The Roy Castle Lung Cancer Foundation
7 months ago
Another Xray but why ?
Hi all. I haven't been here for quite a long time so I hope that you are all coping and getting all the help and support you need. This forum helped me so much. Unfortunately, I now have multiple problems because of the lung misdiagnosis and because of negligence by our hospital. Another long story
Hi all. I haven't been here for quite a long time so I hope that you are all coping and getting all the help and support you need. This forum helped me so much. Unfortunately, I now have multiple problems because of the lung misdiagnosis and because of negligence by our hospital. Another long story
Danni54
in
Lung Cancer Support
7 months ago
Please Join Us! Tuesday January 9th, Gathering HOPE Community Social
Hello, Happy New Year! 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. This Tuesday, January 9th, at 5pm
Hello, Happy New Year! 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. This Tuesday, January 9th, at 5pm
Michelezeh
Partner
in
Lung Cancer Support
8 months ago
Appointment update
Well guys, I've had my appointment today at the head and neck cancer clinic.I do not have head & neck cancer on my lungs I have lung cancer of various types in miniscule sizes that are causing me no problems at the moment. I will have 3 monthly ct scan 2 see if they grow if not have anything done, if
Well guys, I've had my appointment today at the head and neck cancer clinic.I do not have head & neck cancer on my lungs I have lung cancer of various types in miniscule sizes that are causing me no problems at the moment. I will have 3 monthly ct scan 2 see if they grow if not have anything done, if
Mindini1964
in
The Roy Castle Lung Cancer Foundation
8 months ago
new diagnosis
Hi I am new here. 49 and Just had the results of my ct scan and it’s looking like lung cancer not much more info. I have no symptoms apart from a sore shoulder blade, I was referred for a chest xray in Dec after having a bad cough from what I think was covid. I have a biopsy on the 3rd and should have
Hi I am new here. 49 and Just had the results of my ct scan and it’s looking like lung cancer not much more info. I have no symptoms apart from a sore shoulder blade, I was referred for a chest xray in Dec after having a bad cough from what I think was covid. I have a biopsy on the 3rd and should have
Clairemc0974
in
The Roy Castle Lung Cancer Foundation
8 months ago
Alone and Surgery 03/01/2024
Hello All, I am 60 on the 1st January 2024 and I am having an upper lobectomy 2 days after. Cancer was picked up by the targeted lung cancer team initiative CT scan and confirmed by PET scan, luckily it seems to have been picked up early and not spread elsewhere I live alone and don't have a support
Hello All, I am 60 on the 1st January 2024 and I am having an upper lobectomy 2 days after. Cancer was picked up by the targeted lung cancer team initiative CT scan and confirmed by PET scan, luckily it seems to have been picked up early and not spread elsewhere I live alone and don't have a support
xinte60
in
The Roy Castle Lung Cancer Foundation
8 months ago
Re Introduction Hi everyone
Hi everyone My name is sara brown.I joined this community a long time ago because I was diagnosed with ILD in 2019 but havent posted for years so I thought Id better re-introduce myself A lot has happened to me -I have been put on Oxygen 24/7 at home which does limit my going out for example
Hi everyone My name is sara brown.I joined this community a long time ago because I was diagnosed with ILD in 2019 but havent posted for years so I thought Id better re-introduce myself A lot has happened to me -I have been put on Oxygen 24/7 at home which does limit my going out for example
horseygirl_0103
in
Living with Interstitial Lung Disease (ILD)
9 months ago
Lung Transplant appointment 28/11/23 Cancellled for the 2nd time due to Failure of Patient Transport
I was supposed to be having my lung transplant assessment today (28/11) at 2.45 but as before the NWAS didnt turn up. The manager at the Transplant section phoned & told me if I didnt come to the hospital they wouldn't see me. We had to explain we were waiting for the ambulance - he then cancelled the
I was supposed to be having my lung transplant assessment today (28/11) at 2.45 but as before the NWAS didnt turn up. The manager at the Transplant section phoned & told me if I didnt come to the hospital they wouldn't see me. We had to explain we were waiting for the ambulance - he then cancelled the
Sara_2611
in
Lung Conditions Community Forum
9 months ago
Newly Diagnosed
Hello every one, I've had a terrible 3 or 4 months. My sister was diagnosed with lung cancer in August and unfortunately died in September aged 61.I was heartbroken and was suffering with a very hoarse voice. My doctor sent me for an xray which showed a shadow on my lung. I have since had a pet scan
Hello every one, I've had a terrible 3 or 4 months. My sister was diagnosed with lung cancer in August and unfortunately died in September aged 61.I was heartbroken and was suffering with a very hoarse voice. My doctor sent me for an xray which showed a shadow on my lung. I have since had a pet scan
Mindini1964
in
The Roy Castle Lung Cancer Foundation
9 months ago
lung cancer
Recently diagnosed and now awaiting surgery to remove lower lung. I feel very anxious and would love to hear from anyone who has gone through this.
Recently diagnosed and now awaiting surgery to remove lower lung. I feel very anxious and would love to hear from anyone who has gone through this.
Sally789
in
The Roy Castle Lung Cancer Foundation
9 months ago
SSc-related bronchiectasis
Does anyone know if you can have both bronchiectasis (which I've been diagnosed with) and
interstitial
lung
disease
(which I haven't)?
Does anyone know if you can have both bronchiectasis (which I've been diagnosed with) and
interstitial
lung
disease
(which I haven't)?
volvox45
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
Please Join us tomorrow, November 16th for our Coming Together Globally to Combat Stigma Living Room
Hello, As we all know it is Lung Cancer Awareness Month (LCAM) so we at GO2 wanted to have a Living Room program that we could reach globally. In order to bring in speakers and a topic in our Living Room from all over the world we had to change the date, time and day. We are excited to bring together
Hello, As we all know it is Lung Cancer Awareness Month (LCAM) so we at GO2 wanted to have a Living Room program that we could reach globally. In order to bring in speakers and a topic in our Living Room from all over the world we had to change the date, time and day. We are excited to bring together
Michelezeh
Partner
in
Lung Cancer Support
9 months ago
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