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Non driving gene mutation-ASXL1
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
merlisa
in
Fight MPN
2 years ago
Comparison can be good for the soul...
I do not often write on here but it seemed these musing may be of interest to others so here goes... ONE of the great advantages I find from attending the courses run by the Pulmonary Rehabilitation Service (PRS) is comparison. And after today's session I feel encouraged. Not that I am significantly
I do not often write on here but it seemed these musing may be of interest to others so here goes... ONE of the great advantages I find from attending the courses run by the Pulmonary Rehabilitation Service (PRS) is comparison. And after today's session I feel encouraged. Not that I am significantly
Timberman
in
COPD Friends
2 years ago
will these hot flashes ever end ?
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Mofred
in
PMRGCAuk
2 years ago
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Join Us tonight! July12th, 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 tonight on our ZOOM link at 5pm PT/8pm ET. At this meeting, we
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 tonight on our ZOOM link at 5pm PT/8pm ET. At this meeting, we
Michelezeh
Partner
in
Lung Cancer Support
2 years ago
ALK lung cancer: First sign of progression?
Hi. My brother has lung cancer and I wrote about it in the post below. He has taken Alectinib for few months and the results has been great so far. However he just received result from his latest Xray and the comment the doctor wrote online was that he can see "some slightly prominent lymph nodes in
Hi. My brother has lung cancer and I wrote about it in the post below. He has taken Alectinib for few months and the results has been great so far. However he just received result from his latest Xray and the comment the doctor wrote online was that he can see "some slightly prominent lymph nodes in
Hidden
in
The Roy Castle Lung Cancer Foundation
2 years ago
Durvalumab not working, based on Guardant 360 Tumor Response Map...
Hello All, I've been a frequent reader/follower of this discussion forum, albeit never poster (until now), but just want to let everyone know I'm very appreciative of all the technical advice and positive supportive messages that are shared on a daily basis here. I've finally decided to jump in and
Hello All, I've been a frequent reader/follower of this discussion forum, albeit never poster (until now), but just want to let everyone know I'm very appreciative of all the technical advice and positive supportive messages that are shared on a daily basis here. I've finally decided to jump in and
yenlilly
in
Lung Cancer Support
2 years ago
Lung transplant clinic appointment
Thankyou for all your good wishes. Well my first visit to Harefield was quite overwhelming. I only learnt as we were traveling down on Tuesday that I wld be having 'some' tests. Some! A lung function test, ecg, chest xray, blood pressure and sats, urine test and I couldn't count the number of vials
Thankyou for all your good wishes. Well my first visit to Harefield was quite overwhelming. I only learnt as we were traveling down on Tuesday that I wld be having 'some' tests. Some! A lung function test, ecg, chest xray, blood pressure and sats, urine test and I couldn't count the number of vials
Karenanne61
in
Lung Conditions Community Forum
2 years ago
Sharing a video - ASCO 2022 highlights
Hi everyone The Lung Cancer Research Foundation ran a session yesterday to share the highlights of the major developments in lung cancer treatments presented at ASCO this year. ASCO is one of the major cancer conferences for researchers and doctors. I've posted the link here. Its an hour long and
Hi everyone The Lung Cancer Research Foundation ran a session yesterday to share the highlights of the major developments in lung cancer treatments presented at ASCO this year. ASCO is one of the major cancer conferences for researchers and doctors. I've posted the link here. Its an hour long and
sassassas
in
The Roy Castle Lung Cancer Foundation
2 years ago
Visit with new Hem/Onc Dr went well!
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Wewo01
in
MPN Voice
2 years ago
Growth inhibitory effect of doxazosin on prostate and bladder cancer cells. Is the serotonin receptor pathway involved?
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Gefitinib
for treatment of
non
-
small
-
cell
lung
carcinoma
.
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Gefitinib
for treatment of
non
-
small
-
cell
lung
carcinoma
.
Hidden
in
Advanced Prostate Cancer
2 years ago
Officially on the lung transplant waiting list
Last Friday I made the decision to join the lung transplant waiting list after months of tests, conversations with the various medical teams and a whole lot of soul searching. Lung transplant was an option that I have thought about from a very early stage after my diagnosis and when the time came I think
Last Friday I made the decision to join the lung transplant waiting list after months of tests, conversations with the various medical teams and a whole lot of soul searching. Lung transplant was an option that I have thought about from a very early stage after my diagnosis and when the time came I think
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
2 years ago
First appointment at lung transplant centre.
I have my first appointment on Wednesday at the Harefield. Can any of you wise people give me any idea what to expect? I have written down a few questions. We are going Tuesday and stopping in a b and b as the area is completely new to us. ( We live in Oxfordshire) Thank you.
I have my first appointment on Wednesday at the Harefield. Can any of you wise people give me any idea what to expect? I have written down a few questions. We are going Tuesday and stopping in a b and b as the area is completely new to us. ( We live in Oxfordshire) Thank you.
Karenanne61
in
Lung Conditions Community Forum
2 years ago
Should I ask for a new assessment
I was diagnosed with terminal squamous cell lung cancer last October. My upper left lung had collapsed with a 10cm tumour and the tumour was blocking the lower lobe and caused it to overinflate. I had two sessions of palliative radiotherapy, one week apart, in Nov 21 to help keep the lower lobe functional
I was diagnosed with terminal squamous cell lung cancer last October. My upper left lung had collapsed with a 10cm tumour and the tumour was blocking the lower lobe and caused it to overinflate. I had two sessions of palliative radiotherapy, one week apart, in Nov 21 to help keep the lower lobe functional
ginkgo
in
The Roy Castle Lung Cancer Foundation
2 years ago
Please join us tomorrow Tuesday, June 21st, Living Room
Hello, Please join us tomorrow, Tuesday, June 21st , for our Living Room discussion. We will have speaker Dr. Ross Camidge, from University of Colorado Cancer Center. Dr. Camidge will be speaking on "Targeted Therapies and their Role in Treating Lung Cancer " The conversation will be focused on how
Hello, Please join us tomorrow, Tuesday, June 21st , for our Living Room discussion. We will have speaker Dr. Ross Camidge, from University of Colorado Cancer Center. Dr. Camidge will be speaking on "Targeted Therapies and their Role in Treating Lung Cancer " The conversation will be focused on how
Michelezeh
Partner
in
Lung Cancer Support
2 years ago
Lung Cancer diagnosis update
Hi everyone, Went for my appointment yesterday but was a bit disappointed coz my CT scan staging where not there. So have to wait until the doctor gets the results. So will keep you updated. Thanks to everyone for support. Xx
Hi everyone, Went for my appointment yesterday but was a bit disappointed coz my CT scan staging where not there. So have to wait until the doctor gets the results. So will keep you updated. Thanks to everyone for support. Xx
Pipido36
in
The Roy Castle Lung Cancer Foundation
2 years ago
help with drinking 2 to 3 litres of water a day.
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
Kraskie1915
in
CLL Support
2 years ago
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
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
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
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
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