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My brother
Hi me again - my brother has started treatment- 2nd chemo & immunotherapy yesterday - he’s doing ok ish but his cough is getting worse & he’s exceptionally breathless - is it normal for that to happen ? He has to put the phone down because he gets so stressed. I’m flying in for his appointment with his
Hi me again - my brother has started treatment- 2nd chemo & immunotherapy yesterday - he’s doing ok ish but his cough is getting worse & he’s exceptionally breathless - is it normal for that to happen ? He has to put the phone down because he gets so stressed. I’m flying in for his appointment with his
Brianderrick12
in
The Roy Castle Lung Cancer Foundation
2 years ago
Immunotherapy and the 2 year limit
There are many people on here worried about what happens when they or their loved ones 2 years are up with their immunotherapy treatment. I was the same. My mum was put on this when chemotherapy didnt work on her stage 4 NSCLC and it amazingly shrunk her cancer by 80% in just a few months. When it
There are many people on here worried about what happens when they or their loved ones 2 years are up with their immunotherapy treatment. I was the same. My mum was put on this when chemotherapy didnt work on her stage 4 NSCLC and it amazingly shrunk her cancer by 80% in just a few months. When it
nlg1405
in
The Roy Castle Lung Cancer Foundation
2 years ago
ET progression to MF - anxiety issues
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
SRH55
in
MPN Voice
2 years ago
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Join Us! June 14th, Gathering HOPE, a Social Hour
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 Hour hosted on our new ZOOM platform on Tuesday June 14th, at 5pm PT/8pm
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 Hour hosted on our new ZOOM platform on Tuesday June 14th, at 5pm PT/8pm
Michelezeh
Partner
in
Lung Cancer Support
2 years ago
The oncologist wants to do a PET and CT scan the same day. Is it necessary to do both?
The oncologist wants to do a CT and PET scan on the same day this month. My husband is now stage IV NSCLC and had both these tests done in February. They have not started any treatment yet for him . He only saw the oncologist two weeks ago. He also ended up with congested heart failure late last year
The oncologist wants to do a CT and PET scan on the same day this month. My husband is now stage IV NSCLC and had both these tests done in February. They have not started any treatment yet for him . He only saw the oncologist two weeks ago. He also ended up with congested heart failure late last year
Keepingstrong
in
The Roy Castle Lung Cancer Foundation
2 years ago
The Polymyalgia Rheumatica Diet: The Ultimate Nutritional Guide To Reversing And Managing Polymyalgia Rheumatica And Giant Cell Arteritis
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Yorksman
in
PMRGCAuk
2 years ago
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. By Kate Gilbert
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
SouthStrand
in
PMRGCAuk
2 years ago
Parietal Cell Antibody test refused by GP
I posted a few weeks back about my Dad who I suspect has b12 absorption problems either as a result of low stomach acid or PA. He tested negative for IF antibodies so zi asked a GP at his surgery if they would test for Parietal Cell antibodies. She didn't seem to know what I was talking about?! Said
I posted a few weeks back about my Dad who I suspect has b12 absorption problems either as a result of low stomach acid or PA. He tested negative for IF antibodies so zi asked a GP at his surgery if they would test for Parietal Cell antibodies. She didn't seem to know what I was talking about?! Said
Needleandthread44
in
Pernicious Anaemia Society
2 years ago
Update and meeting the team.
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
wendycu
in
MPN Voice
2 years ago
Stem Cell Transplant-update
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
ConniesDad
in
MPN Voice
2 years ago
MF high risk Mutations
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
EPguy
in
MPN Voice
2 years ago
Advice
I have just been diagnosed with lung cancer, I had no symptoms and haven’t been unwell. I went to the Gp after developing a wheeze as I thought I had asthma. I am due to start immunotherapy the middle of June. I am due to go on holiday the middle of next week for 7 days and would like advice on travel
I have just been diagnosed with lung cancer, I had no symptoms and haven’t been unwell. I went to the Gp after developing a wheeze as I thought I had asthma. I am due to start immunotherapy the middle of June. I am due to go on holiday the middle of next week for 7 days and would like advice on travel
Hidden
in
The Roy Castle Lung Cancer Foundation
2 years ago
Another Brain Met
I had two brain mets from my lung cancer and radiotherapy got rid of them. I have just had another scan to check progress and it seems another small one has popped up on the opposite side, I'm devastated, it's determined to get me. I'm having a CT scan of thorax abdomen and pelvis. Consultant says if
I had two brain mets from my lung cancer and radiotherapy got rid of them. I have just had another scan to check progress and it seems another small one has popped up on the opposite side, I'm devastated, it's determined to get me. I'm having a CT scan of thorax abdomen and pelvis. Consultant says if
Tike3
in
The Roy Castle Lung Cancer Foundation
2 years ago
My father has Peripheral t cell lymphoma
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
NikhilSantosh
in
CLL Support
2 years ago
Cancer in broncial tube
Hi everyone i got diagnosed with lung cancer in my broncial tube nearly a year ago. I'm being treated with immunotherapy i have a year left of treatment my doctors just told me. Why because the government have a deal with the pharmaceutical company for a 2yr period but its working ok for me then it
Hi everyone i got diagnosed with lung cancer in my broncial tube nearly a year ago. I'm being treated with immunotherapy i have a year left of treatment my doctors just told me. Why because the government have a deal with the pharmaceutical company for a 2yr period but its working ok for me then it
Bulldog242
in
Lung Cancer Support
2 years ago
Join Us! May 10th, Gathering HOPE, a Social Hour
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 hour, click here: http://gatheringhope05-2022.event.gatherly.io/ on Tuesday
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 hour, click here: http://gatheringhope05-2022.event.gatherly.io/ on Tuesday
Michelezeh
Partner
in
Lung Cancer Support
2 years ago
Update on “20 years old and Scared”
Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Lc06091
in
MPN Voice
2 years ago
Has anyone been involved in a clinical trial with osmertinib? It’s an option for my dad or have chemo/radiotherapy concurrently.
My dad has stage 3b lung cancer with PDL1 positive and edfr, a rare mutation. He’s a non smoker and we need to choose between chemo/ radio then surgery or a clinical trial (computer randomly assigns either osmertinib tablets only or osimertinib + chemo or osimertinib + placebo) and then surgery to remove
My dad has stage 3b lung cancer with PDL1 positive and edfr, a rare mutation. He’s a non smoker and we need to choose between chemo/ radio then surgery or a clinical trial (computer randomly assigns either osmertinib tablets only or osimertinib + chemo or osimertinib + placebo) and then surgery to remove
Jaynelovestravel
in
The Roy Castle Lung Cancer Foundation
2 years ago
CBD OIL
Just read an article about an 80 year old lady who had stage 4 lung cancer and took liquid CBD oil daily, and refused all treatment. The tumour disappeared. Is this made up, surely the experts would have found that CBD is a cure. It's like diet, there's no diet that can cure cancer.
Just read an article about an 80 year old lady who had stage 4 lung cancer and took liquid CBD oil daily, and refused all treatment. The tumour disappeared. Is this made up, surely the experts would have found that CBD is a cure. It's like diet, there's no diet that can cure cancer.
Tike3
in
The Roy Castle Lung Cancer Foundation
2 years ago
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
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