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Genetic Mutation Driven lung Cancer Support
As our last online support group for genetically mutated lung cancer was so succesful we are starting up a new group. We provide a safe space for peer support and a chance to make true connections with others who understand. Our groups are hosted by trained facilitators and this group will run weekly
As our last online support group for genetically mutated lung cancer was so succesful we are starting up a new group. We provide a safe space for peer support and a chance to make true connections with others who understand. Our groups are hosted by trained facilitators and this group will run weekly
ConnectRoyCastle
Administrator
in
The Roy Castle Lung Cancer Foundation
1 year ago
immuno stopped due to inflammation
morning everyone , I’m currently on immunotherapy ( only had two so far) but this month I’ve developed a cough , chest infection, the hospital checked and say there is inflammation and infection in my lungs , either as a result of immunotherapy or previous radiotherapy… they’ve stopped my immunotherapy
morning everyone , I’m currently on immunotherapy ( only had two so far) but this month I’ve developed a cough , chest infection, the hospital checked and say there is inflammation and infection in my lungs , either as a result of immunotherapy or previous radiotherapy… they’ve stopped my immunotherapy
mishamilo53
in
The Roy Castle Lung Cancer Foundation
1 year ago
Diagnosed with Adenosquamous lung cancer
hi all First of all just wanted to say a big thank you to all that have posted on here and those that have replied - it's been a great help and a great resource ... I've been diagnosed with T4 N3 M1b Adenosquamous lung cancer ("predominantly adenocarcinoma with some squamous features" according
hi all First of all just wanted to say a big thank you to all that have posted on here and those that have replied - it's been a great help and a great resource ... I've been diagnosed with T4 N3 M1b Adenosquamous lung cancer ("predominantly adenocarcinoma with some squamous features" according
beesgood
in
The Roy Castle Lung Cancer Foundation
1 year ago
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Never rains just pours….😡😡
Now being tested for rheumatoid arthritis due to extremely painful ankles, knee and wrists. Hopefully if positive this new addition to the family will get on well with my IPF but as long as the lung transplant can proceed I’m cool. 🤪🤪 Stay safe xx
Now being tested for rheumatoid arthritis due to extremely painful ankles, knee and wrists. Hopefully if positive this new addition to the family will get on well with my IPF but as long as the lung transplant can proceed I’m cool. 🤪🤪 Stay safe xx
Mrbojangles
in
Lung Conditions Community Forum
1 year ago
lungwort
I was recently diagnosed with lung cancer and I’m having radiotherapy at this time. My daughter saw a supplement called Lungwort which she thought might help me. I bought it but I’m now a bit worried about taking it in case it does me harm. My question is - has anyone with a lung condition tried it
I was recently diagnosed with lung cancer and I’m having radiotherapy at this time. My daughter saw a supplement called Lungwort which she thought might help me. I bought it but I’m now a bit worried about taking it in case it does me harm. My question is - has anyone with a lung condition tried it
deni-123red_
in
Lung Conditions Community Forum
1 year ago
Lung cancer concern
Please help following a chest infection that wouldn't clear I've had s CT scan the area has grown its 4cm biopsy will be in the following days. I'm terrified I can't eat, sleep I'm convinced its cancer and I won't survive. I already have copd. Im 48 I'm just in dispair. Any advice would be appreciated
Please help following a chest infection that wouldn't clear I've had s CT scan the area has grown its 4cm biopsy will be in the following days. I'm terrified I can't eat, sleep I'm convinced its cancer and I won't survive. I already have copd. Im 48 I'm just in dispair. Any advice would be appreciated
tracyball1
in
Lung Cancer Support
1 year ago
First timer. Anyone taking Mychophenolate
Hello all. Have been getting the benefit reading all the posts from all you lovely fellow sufferers but have been reluctant for no real reason to posts my own. So here goes. Is anyone taking or any experience of Mychophenolate as a steroid sparing medication for GCA. I've been prescribed it as I need
Hello all. Have been getting the benefit reading all the posts from all you lovely fellow sufferers but have been reluctant for no real reason to posts my own. So here goes. Is anyone taking or any experience of Mychophenolate as a steroid sparing medication for GCA. I've been prescribed it as I need
Puffin3
in
PMRGCAuk
1 year ago
Transplant delays and oxygen referrals
First things first, huge apologies for not getting back to those that left a comment on my last post which was now more than 2 months ago. It's safe to say that a lot has happened since then so hold on to your hats! After getting over the disappointment of a third transplant call not working out and
First things first, huge apologies for not getting back to those that left a comment on my last post which was now more than 2 months ago. It's safe to say that a lot has happened since then so hold on to your hats! After getting over the disappointment of a third transplant call not working out and
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
1 year ago
Kras g12c
i was diagnosed with stage IIIA nsclc Nov 2023. Im currently doing carboplatin/paclitaxel 7 rounds 1x weekly and 37 daily radiation treatment. I have been fortunate to not have any side effects other than severe acid reflux and fatigue. This past week found out i have BRCA2, and Kras g12c and STK11
i was diagnosed with stage IIIA nsclc Nov 2023. Im currently doing carboplatin/paclitaxel 7 rounds 1x weekly and 37 daily radiation treatment. I have been fortunate to not have any side effects other than severe acid reflux and fatigue. This past week found out i have BRCA2, and Kras g12c and STK11
DJL10
in
Lung Cancer Support
1 year ago
Vancouver liquid biopsy NGS for lung cancer?
Hi all, I first signed up to this support group when my Mum was diagnosed NSCLC in 2018, she sadly passed away in 2021 after trying Iressa (~1yr), chemo (~1yr), and Tagrisso (~10m). Unfortunately, my ~70yr old uncle who lives in Vancouver had a CT scan last week that showed a change (from one year
Hi all, I first signed up to this support group when my Mum was diagnosed NSCLC in 2018, she sadly passed away in 2021 after trying Iressa (~1yr), chemo (~1yr), and Tagrisso (~10m). Unfortunately, my ~70yr old uncle who lives in Vancouver had a CT scan last week that showed a change (from one year
waterchestnut
in
Lung Cancer Support
1 year ago
Join Us! Tuesday, February 14th, Gathering HOPE, a 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 now on our ZOOM link this coming Tuesday, February 14th, at 5pm PT
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 now on our ZOOM link this coming Tuesday, February 14th, at 5pm PT
Michelezeh
Partner
in
Lung Cancer Support
2 years ago
Severe breathlessness
I had robotic surgery upper right lobectomy in June this year. Initially I made a good recovery and after about 2 months was experiencing hardly any breathlessness. However after about 4 months I have become extremely breathless on the slightest exertion eg getting up or talking. This seems to be getting
I had robotic surgery upper right lobectomy in June this year. Initially I made a good recovery and after about 2 months was experiencing hardly any breathlessness. However after about 4 months I have become extremely breathless on the slightest exertion eg getting up or talking. This seems to be getting
Daisybarnes
in
The Roy Castle Lung Cancer Foundation
2 years ago
An update on my father’s immunotherapy for his lung cancer.
Hello , an update on my father’s immunotherapy for lung cancer. Would really appreciate any thoughts , insight or experiences. Especially, but no only, those which can give my father some further hope. My father was disagnosed with Stage 4 lung cancer around 10 months ago. He started on chemo but
Hello , an update on my father’s immunotherapy for lung cancer. Would really appreciate any thoughts , insight or experiences. Especially, but no only, those which can give my father some further hope. My father was disagnosed with Stage 4 lung cancer around 10 months ago. He started on chemo but
Vip1
in
The Roy Castle Lung Cancer Foundation
2 years ago
Lung Surgery Cancelled Twice
After an incidental find of a 19mm lung nodule and a clear PET scan in late October my respiratory consultant was sure it was a slow growing cancer caught early and recommended, which was agreed by me, that rather than a biopsy I go straight to surgery for a lung wedge resection to remove the nodule
After an incidental find of a 19mm lung nodule and a clear PET scan in late October my respiratory consultant was sure it was a slow growing cancer caught early and recommended, which was agreed by me, that rather than a biopsy I go straight to surgery for a lung wedge resection to remove the nodule
Domino13
in
The Roy Castle Lung Cancer Foundation
2 years ago
Biopsy Results
I had a thoracotamy to perform top
lobectomy
on my right
lung
on 10th October at University Hospital North Midlands in Stoke. The TNM staging was T4N2M0. Today I saw the surgeon and was informed there were NO cancer cells in the lobe or lymph nodes.
I had a thoracotamy to perform top
lobectomy
on my right
lung
on 10th October at University Hospital North Midlands in Stoke. The TNM staging was T4N2M0. Today I saw the surgeon and was informed there were NO cancer cells in the lobe or lymph nodes.
Ianhick
in
The Roy Castle Lung Cancer Foundation
2 years ago
Would you be interested in new support if you have a mutation driven lung cancer, or have surgery as a treatment?
Hello all, On 16th February we will be starting an eight week programme of hour long on line support sessions for people with genetic mutation driven lung cancer. The sessions will be run by our facilitator and share coping ideas, practical tips and experience of treatment. If you would like to participate
Hello all, On 16th February we will be starting an eight week programme of hour long on line support sessions for people with genetic mutation driven lung cancer. The sessions will be run by our facilitator and share coping ideas, practical tips and experience of treatment. If you would like to participate
LorraineD
Roy Castle
in
The Roy Castle Lung Cancer Foundation
2 years ago
Pregnancy
Hi all I am 6.5 years post single lung transplant and recently found out I am 7 weeks pregnant . I'm super shocked as I was told I would never have another child ( I also have a 13 year old daughter) And im super worried about how my body is going to cope with this pregnancy. My transplant unit have
Hi all I am 6.5 years post single lung transplant and recently found out I am 7 weeks pregnant . I'm super shocked as I was told I would never have another child ( I also have a 13 year old daughter) And im super worried about how my body is going to cope with this pregnancy. My transplant unit have
Hidden
in
Lung Conditions Community Forum
2 years ago
Recurrence of lung cancer?
I haven't been here for a while though I have been on other forum's because of the health problems I have been left with after the
lung
cancer misdiagnosis and subsequent ( but late )
Lobectomy
!
I haven't been here for a while though I have been on other forum's because of the health problems I have been left with after the
lung
cancer misdiagnosis and subsequent ( but late )
Lobectomy
!
Danni54
in
Lung Cancer Support
2 years ago
Exhausted but happy.
I spent seven hours at the lung transplant clinic at Harefield yesterday. I was weighed and measured many times, sometimes with boots (dockers!) on sometimes off, ECG, echocardiogram, chest xray, blood tests, blood pressure test, lung function test, urine test, and finally mrsa test! Everone
I spent seven hours at the lung transplant clinic at Harefield yesterday. I was weighed and measured many times, sometimes with boots (dockers!) on sometimes off, ECG, echocardiogram, chest xray, blood tests, blood pressure test, lung function test, urine test, and finally mrsa test! Everone
Karenanne61
in
Lung Conditions Community Forum
2 years ago
Hello there - any advice about Chemo (Carboplatin and Pemetrexed) and Immunotherapy (Pembrolizomab)?
Hi, so I was diagnosed just before Christmas (Is cancer the Christmas Grinch? 🤔 It was in my case....) Anyway, having been diagnosed with NSCL cancer I've now been put on a treatment plan, and start on Monday next week. Has anyone got any top tips for getting through the next few months? It all sounds
Hi, so I was diagnosed just before Christmas (Is cancer the Christmas Grinch? 🤔 It was in my case....) Anyway, having been diagnosed with NSCL cancer I've now been put on a treatment plan, and start on Monday next week. Has anyone got any top tips for getting through the next few months? It all sounds
Boo_Radley
in
The Roy Castle Lung Cancer Foundation
2 years ago
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