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Lung transplant second opinion update.
Saw the very nice team at the Royal Papworth following the Harefields decision to delist me. Where do i begin? First of all what a place, futuristic, buzzing with energy and you just knew you were in a different league. They haven’t said yes but more importantly not a no either. Bottom line is they
Saw the very nice team at the Royal Papworth following the Harefields decision to delist me. Where do i begin? First of all what a place, futuristic, buzzing with energy and you just knew you were in a different league. They haven’t said yes but more importantly not a no either. Bottom line is they
Mrbojangles
in
Lung Conditions Community Forum
2 years ago
Please join us tomorrow,Tuesday April 19th for our Lung Cancer Living Room: "Treatment Options for Late-Stage Lung Cancer "
Hello Everyone! I wanted to send a reminder to please join our Lung Cancer Living Room Support group, tomorrow at 5:30pm PST/8:30pm EST. The Topic is: "Treatment Options for Late-Stage Lung Cancer " Dr. Gerber will be detailing treatment considerations for patients with late-stage lung cancer, including
Hello Everyone! I wanted to send a reminder to please join our Lung Cancer Living Room Support group, tomorrow at 5:30pm PST/8:30pm EST. The Topic is: "Treatment Options for Late-Stage Lung Cancer " Dr. Gerber will be detailing treatment considerations for patients with late-stage lung cancer, including
Michelezeh
Partner
in
Lung Cancer Support
2 years ago
International Caregiver Survey
Calling all caregivers: Please help by completing this survey: https://www.connection.solutions.iqvia.com/Desktop/Portal/Signup?id=LungCancerRegistry&lang=en Anyone who has cared for a person with lung cancer, either now or in the past, is eligible to complete the survey, which is part of the global
Calling all caregivers: Please help by completing this survey: https://www.connection.solutions.iqvia.com/Desktop/Portal/Signup?id=LungCancerRegistry&lang=en Anyone who has cared for a person with lung cancer, either now or in the past, is eligible to complete the survey, which is part of the global
Miranda_GO2
Partner
in
Lung Cancer Support
2 years ago
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Nintedanib offers new hope as transplant recommendation approaches
Hi all, It's been a fair while since I last updated - longer than I'd have liked - but in a way its a good thing as I actually have a fair bit to update on as a result... The additional heart tests involving tracers, a CT scan and an hour long MRI which really tested my lung capacity with one or two
Hi all, It's been a fair while since I last updated - longer than I'd have liked - but in a way its a good thing as I actually have a fair bit to update on as a result... The additional heart tests involving tracers, a CT scan and an hour long MRI which really tested my lung capacity with one or two
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
2 years ago
Only 288 hours until my second opinion assessment at the Royal Papworth for my lung transplant.
Who says i’m nervous and counting the days or hours??😜 Looking forward to spending the morning in Cambridge, a place i have never visited. Stay safe everyone…xx
Who says i’m nervous and counting the days or hours??😜 Looking forward to spending the morning in Cambridge, a place i have never visited. Stay safe everyone…xx
Mrbojangles
in
Lung Conditions Community Forum
2 years ago
Please join me in meeting with Congress to ask for Lung Cancer Research Funding
The most important thing you can do as a participant is share your experience with your representative in DC. You put a face on lung cancer which is the most powerful tool we have. You will be matched with other people from your state and the state leader will make the ask for the funding. First
The most important thing you can do as a participant is share your experience with your representative in DC. You put a face on lung cancer which is the most powerful tool we have. You will be matched with other people from your state and the state leader will make the ask for the funding. First
Denzie
Volunteer
in
Lung Cancer Support
2 years ago
Newby here seeking advice please.
Just been delisted for lung transplant (IPF) by the Harefield as my heart maybe too weak to withstand operation. Looking through medical notes i have, for the first time seen a radiologist report stating “volume mediastinal lymph nodes measuring 10mm short axis in the subcarinal location”. This was in
Just been delisted for lung transplant (IPF) by the Harefield as my heart maybe too weak to withstand operation. Looking through medical notes i have, for the first time seen a radiologist report stating “volume mediastinal lymph nodes measuring 10mm short axis in the subcarinal location”. This was in
Mrbojangles
in
Lung Cancer Support
2 years ago
Thank you!
Wow. Thanks to all of you for saying g’day. PPFE is idiopathic pleuro parenchymal fibroelastosis. Rare. Diagnosed by lung biopsy. I am not suitable for lung transplants. I will contact you all. 😊
Wow. Thanks to all of you for saying g’day. PPFE is idiopathic pleuro parenchymal fibroelastosis. Rare. Diagnosed by lung biopsy. I am not suitable for lung transplants. I will contact you all. 😊
Hidden
in
Lung Conditions Community Forum
2 years ago
I am Alive and fine
Hi Friends, Just to let you all know and keep you all up to date. I am absolutely fine. Just to keep everyone up to date I am sure many of you know I was diagnosed with bowel cancer at the end of January. Since then have been up and down to the hospital many of time and it is now starting to feel like
Hi Friends, Just to let you all know and keep you all up to date. I am absolutely fine. Just to keep everyone up to date I am sure many of you know I was diagnosed with bowel cancer at the end of January. Since then have been up and down to the hospital many of time and it is now starting to feel like
Hidden
in
IBS Network
2 years ago
Treatments and Surviving Cancer
I am a stage 3 lung cancer survivor that was diagnosed in August of 2018, so I have now been in remission for 3 1/2 years. When I first found out that I had cancer it was very scary because I thought that I was going to die, so I began depressed and sad. I had a lot of prayer warriors, family members
I am a stage 3 lung cancer survivor that was diagnosed in August of 2018, so I have now been in remission for 3 1/2 years. When I first found out that I had cancer it was very scary because I thought that I was going to die, so I began depressed and sad. I had a lot of prayer warriors, family members
Linnie1430
in
Lung Cancer Support
2 years ago
Refusing Lung Transplant
A few weeks ago my wife's neurologist put her forward for consideration for lung transplant surgery. After consideration, my wife has declined as she feels it represents a great deal of change to her life, in which she is quite content. I go along with her wishes but wondered if this was a decision made
A few weeks ago my wife's neurologist put her forward for consideration for lung transplant surgery. After consideration, my wife has declined as she feels it represents a great deal of change to her life, in which she is quite content. I go along with her wishes but wondered if this was a decision made
hillclimber1
in
Lung Conditions Community Forum
2 years ago
Hello all
Hi everyone. I am new to this group only having been diagnosed last November with stage 4 lung cancer. I have a secondary in my brain but am lucky to have the EGFR Exon 19 mutation so now on targeted table therapy Osimertinib. Slowly working through the shock and trying to find informed and positive
Hi everyone. I am new to this group only having been diagnosed last November with stage 4 lung cancer. I have a secondary in my brain but am lucky to have the EGFR Exon 19 mutation so now on targeted table therapy Osimertinib. Slowly working through the shock and trying to find informed and positive
Musicgirl71
in
The Roy Castle Lung Cancer Foundation
2 years ago
Lung Cancer
Was diagnosed with Lung cancer Feb 2021 small stem approx. 4cm Tumour in lower right Lobe and had imbedded itself in the lining and on main archery and other blood vessels and therefore inoperable. Had 3 sessions of chemo and 6. 1/2 weeks of radiotherapy treatment finishing on 9/5/21. Then 3 monthly
Was diagnosed with Lung cancer Feb 2021 small stem approx. 4cm Tumour in lower right Lobe and had imbedded itself in the lining and on main archery and other blood vessels and therefore inoperable. Had 3 sessions of chemo and 6. 1/2 weeks of radiotherapy treatment finishing on 9/5/21. Then 3 monthly
Lainey100
in
The Roy Castle Lung Cancer Foundation
2 years ago
Lung cancer
Hi, I was wondering if ya'll know how long it takes to start seeing results from being on Keytruda. My husband, who was diagnosed with lung cancer last year just recently started Keytruda and has had two treatments, but he doesn't feel any better. He's tired, has pain and nausea. Thank ya'll
Hi, I was wondering if ya'll know how long it takes to start seeing results from being on Keytruda. My husband, who was diagnosed with lung cancer last year just recently started Keytruda and has had two treatments, but he doesn't feel any better. He's tired, has pain and nausea. Thank ya'll
Orchid2583
in
Lung Cancer Support
2 years ago
Trikafta drug US Name - Kaftrio drug UK Name
Trikafta drug US Name - Kaftrio drug UK Name Can someone please tell me if the above drug is only offered to people who have Cystic Fibrosis in the UK? i.e Would it not be offered to anyone who has Severe Bronchiectasis or anyone who could no longer have a Lung Transplant? Kind regards as always Joe
Trikafta drug US Name - Kaftrio drug UK Name Can someone please tell me if the above drug is only offered to people who have Cystic Fibrosis in the UK? i.e Would it not be offered to anyone who has Severe Bronchiectasis or anyone who could no longer have a Lung Transplant? Kind regards as always Joe
Joseph260268
in
Lung Conditions Community Forum
2 years ago
Gathering HOPE- new Wellness focus social event!
Hello HealthUnlocked Community, We want your input! I am excited to invite you to a very special Gathering HOPE social hour on Tuesday, March 8th at 5pm PT/8pm ET to explore and discuss the needs of the lung cancer community beyond your diagnosis, and the way that wellness-specific activities can support
Hello HealthUnlocked Community, We want your input! I am excited to invite you to a very special Gathering HOPE social hour on Tuesday, March 8th at 5pm PT/8pm ET to explore and discuss the needs of the lung cancer community beyond your diagnosis, and the way that wellness-specific activities can support
Michelezeh
Partner
in
Lung Cancer Support
2 years ago
My brother has lung cancer
Few weeks ago my brother received information that he has lung cancer (no talks on staging yet). The information we received is that he has a small tumor on his right lung. Currently we are waiting for the result of the tumor sample they took and we should receive it this week. While waiting for the
Few weeks ago my brother received information that he has lung cancer (no talks on staging yet). The information we received is that he has a small tumor on his right lung. Currently we are waiting for the result of the tumor sample they took and we should receive it this week. While waiting for the
Hidden
in
The Roy Castle Lung Cancer Foundation
2 years ago
What to do about T3 anxiety?
Hi Everyone, I was Diagnosed with Hashimotos in 2011. Started with 25mcg Synthroid, over a number of years settled on 80 mcg Levothyroxine compounded SR with 12 mcg Liothyronine. Had thyroid lobectomy in November 2021 and my new endocrinologist switched me to 88 mcg Tirosint and 5 mcg Cytomel. I am experiencing
Hi Everyone, I was Diagnosed with Hashimotos in 2011. Started with 25mcg Synthroid, over a number of years settled on 80 mcg Levothyroxine compounded SR with 12 mcg Liothyronine. Had thyroid lobectomy in November 2021 and my new endocrinologist switched me to 88 mcg Tirosint and 5 mcg Cytomel. I am experiencing
KarmaMaya
in
Thyroid UK
2 years ago
Removed from Transplant
Sadly I have been removed from the lung transplant list . Harefield say the pulmonary hypertension I have has worsened so much that I wouldn’t survive surgery. I have no idea what will happen next. I’m on 24/7 oxygen, my lungs have approximately 10% capacity and I have no idea what to expect. My respiratory
Sadly I have been removed from the lung transplant list . Harefield say the pulmonary hypertension I have has worsened so much that I wouldn’t survive surgery. I have no idea what will happen next. I’m on 24/7 oxygen, my lungs have approximately 10% capacity and I have no idea what to expect. My respiratory
mary1956
in
Lung Conditions Community Forum
2 years ago
Pulmonary Hypertension
I’ve just returned from a pre lung transplant check up at Harefield. Last seen in November when all was ok except pulmonary hypertension was noted. The pressure was 40 mm of mercury. Normal is 25. They weren’t too bothered as walking to the room could have raised it. However today I needed a wheel chair
I’ve just returned from a pre lung transplant check up at Harefield. Last seen in November when all was ok except pulmonary hypertension was noted. The pressure was 40 mm of mercury. Normal is 25. They weren’t too bothered as walking to the room could have raised it. However today I needed a wheel chair
mary1956
in
Lung Conditions Community Forum
2 years ago
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