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Thoughts on CLL treatment and watch and wait
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
AdrianUK
in
CLL Support
6 years ago
Lung Cancer Registry - Have You Participated?
I wonder if any of you have heard of the Lung Cancer Registry? https://www.lungcancerregistry.org/ The Registry is a joint effort of the Bonnie J Addario Lung Cancer Foundation (ALCF), the American Lung Association (ALA), and the International Association for the Study of Lung Cancer (IASLC). Its purpose
I wonder if any of you have heard of the Lung Cancer Registry? https://www.lungcancerregistry.org/ The Registry is a joint effort of the Bonnie J Addario Lung Cancer Foundation (ALCF), the American Lung Association (ALA), and the International Association for the Study of Lung Cancer (IASLC). Its purpose
Surviventhrive
in
Lung Cancer Support
6 years ago
Husband with Stage 4 lung cancer
My husband feels very weak. Does anyone have any suggestions to help him feel stronger or is this how it is going to be? He was diagnosed a little over a year ago. Has had Chemo and is now on Opdivo.
My husband feels very weak. Does anyone have any suggestions to help him feel stronger or is this how it is going to be? He was diagnosed a little over a year ago. Has had Chemo and is now on Opdivo.
Horselover13
in
Lung Cancer Support
6 years ago
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Here it is. Times piece today on CLL and access to drugs. Skip dumb comments....
The Times chief reporter, Sean O’Neill, is writing about his leukaemia for the first time to highlight the unfair NHS policy on who can be offered life-saving drugs We had spent a glorious August day high in the Picos mountains in northern Spain, whizzing by cable car to the 1,800m peak of Fuenta De
The Times chief reporter, Sean O’Neill, is writing about his leukaemia for the first time to highlight the unfair NHS policy on who can be offered life-saving drugs We had spent a glorious August day high in the Picos mountains in northern Spain, whizzing by cable car to the 1,800m peak of Fuenta De
romarin
in
CLL Support
6 years ago
Stage 4 adenocarcinom
My husband was diagnosed with adenocarcinoma stage 4 nsc lung cancer poorly differentiated. He had a liquid biopsy and dna sequencing done and was started on 2 chemo drugs and immunotherapy (kaytruda). He also has a plural effusion and the lung is collapsed. We were told that the tumors were massive
My husband was diagnosed with adenocarcinoma stage 4 nsc lung cancer poorly differentiated. He had a liquid biopsy and dna sequencing done and was started on 2 chemo drugs and immunotherapy (kaytruda). He also has a plural effusion and the lung is collapsed. We were told that the tumors were massive
Marian54
in
Lung Cancer Support
6 years ago
Stem cell transplant outcomes
Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone. I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which
Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone. I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which
jane13
in
MPN Voice
6 years ago
High GGT post treatment for Acute Myeloid Leukaemia
Hi I have a GGT reading of 900. It has been rising steadily since a successful stem cell transplant in August. I drink very little and am only a bit overweight. My disease is in remission but am still not feeling well. Many of my symptoms - nausea, fatigue and loss of appetite could be caused by liver
Hi I have a GGT reading of 900. It has been rising steadily since a successful stem cell transplant in August. I drink very little and am only a bit overweight. My disease is in remission but am still not feeling well. Many of my symptoms - nausea, fatigue and loss of appetite could be caused by liver
Hidden
in
British Liver Trust
6 years ago
Any bowel problems with GPA?
Hi, for several months now I've had a change in bowel habit. Colonoscopy clear thank goodness. But the problem continues and have had a couple of episodes of near incontince of faeces. And deep rectal pain. Just wondered if any one else has had similar symptoms.
Hi, for several months now I've had a change in bowel habit. Colonoscopy clear thank goodness. But the problem continues and have had a couple of episodes of near incontince of faeces. And deep rectal pain. Just wondered if any one else has had similar symptoms.
ludo
in
Vasculitis UK
6 years ago
Lobotomy right top lung lobe
I am 72 and had robot-assisted surgery on 3/20/18. While I was in the hospital 2 days I did not experience any problems during my stay, my only problem since has been a shortness of breath and feeling tired. Has anyone else had this problem and how long did it last?
I am 72 and had robot-assisted surgery on 3/20/18. While I was in the hospital 2 days I did not experience any problems during my stay, my only problem since has been a shortness of breath and feeling tired. Has anyone else had this problem and how long did it last?
WFM1
in
Lung Cancer Support
6 years ago
reducing
haven,t posted for long time, but been reading some of your reduction plans, i started at 40 mg, oct 2016, got down to 10 mg last spring, when i told my rheumy in august last yr about my 49 yr son diagnosed , with cancer, multiple myeloma, and that he would be having a stem cell transplant in januar
haven,t posted for long time, but been reading some of your reduction plans, i started at 40 mg, oct 2016, got down to 10 mg last spring, when i told my rheumy in august last yr about my 49 yr son diagnosed , with cancer, multiple myeloma, and that he would be having a stem cell transplant in januar
arvine
in
PMRGCAuk
6 years ago
CALR Type 1 & 2 Have Contrasting OS Outcomes
Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I recently came across some very useful articles concerning the CALR mutations & ASXL1 and their ability to be included as Prognostically significant, and naturally wanted to share those findings hopefully to the benefit of others
Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I recently came across some very useful articles concerning the CALR mutations & ASXL1 and their ability to be included as Prognostically significant, and naturally wanted to share those findings hopefully to the benefit of others
socrates_8
in
MPN Voice
6 years ago
Getting back up and running
Earlier this month I braved my first run since my pneumothorax back in January. Unsurprisingly it was considerably slower and more difficult than immediately prior to the collapse but it felt great to be back out there again. Psychologically it's a huge lift as it's a sign that I'm getting stronger
Earlier this month I braved my first run since my pneumothorax back in January. Unsurprisingly it was considerably slower and more difficult than immediately prior to the collapse but it felt great to be back out there again. Psychologically it's a huge lift as it's a sign that I'm getting stronger
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
6 years ago
Just been to see my consultant.
Just been to see my respritory consultant, he asked me about having a lung transplant, this was a surprise as I didn't think I would ever be offered one. I will have to go to Newcastle for tests, I'm not worried. I know it's not gaurnteed be the offer is there. I'm also being assessed for home oxygen
Just been to see my respritory consultant, he asked me about having a lung transplant, this was a surprise as I didn't think I would ever be offered one. I will have to go to Newcastle for tests, I'm not worried. I know it's not gaurnteed be the offer is there. I'm also being assessed for home oxygen
Damon1864
Volunteer
in
Lung Conditions Community Forum
6 years ago
Report on the 2018 Lung Cancer Leadership Conference
“Lung Cancer Leadership Conference” - that is an intriguing title for a conference. Free to Breathe has held this conference for several years. The event was not offered in 2017, as Free to Breathe and the Lung Cancer Research Foundation (LCRF) merged, but it was back this year, and I was invited to
“Lung Cancer Leadership Conference” - that is an intriguing title for a conference. Free to Breathe has held this conference for several years. The event was not offered in 2017, as Free to Breathe and the Lung Cancer Research Foundation (LCRF) merged, but it was back this year, and I was invited to
scifiknitter
Blogger
in
Lung Cancer Support
6 years ago
ADVISE ON HOW TO STOP STOMACH PAIN IN MY 5 YR SICKLE CELL CHILD
My boy is in great stomach pain.what can i do to have him relieved since its late here and i cant find there sickle cell clinic open.any prescriptions.i will be glad
My boy is in great stomach pain.what can i do to have him relieved since its late here and i cant find there sickle cell clinic open.any prescriptions.i will be glad
mosesmale
in
Sickle Cell Society
6 years ago
The History of BMT
BMTInfonet’s video on the history of bone marrow and stem cell transplant. I have always been aware of the Anthony Nolan registry but never knew just what a profound impact it had worldwide. https://www.bmtinfonet.org/transplant-article/what-blood-stem-cell-transplant
BMTInfonet’s video on the history of bone marrow and stem cell transplant. I have always been aware of the Anthony Nolan registry but never knew just what a profound impact it had worldwide. https://www.bmtinfonet.org/transplant-article/what-blood-stem-cell-transplant
MFBMT2011
in
MPN Voice
6 years ago
Myelofibrosis & Yransplant Symposium
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
MFBMT2011
in
MPN Voice
6 years ago
Possibility of secondary mutation ?
Hi my sister starts Iressa this month a supply of 15 pills for now. Just curious if this medication to be taken indefinitely even if the tumor shrink and gone. What is the possibility of secondary mutation ( she is EGFR positive with Exon 19 deletion )
Hi my sister starts Iressa this month a supply of 15 pills for now. Just curious if this medication to be taken indefinitely even if the tumor shrink and gone. What is the possibility of secondary mutation ( she is EGFR positive with Exon 19 deletion )
CCheng8346
in
The Roy Castle Lung Cancer Foundation
6 years ago
Shocked
My dear husband was diagnosed with lung cancer stage 4 today , I cannot breath , it was so shocking to both of us , he never smoked , no even a drinker , healthy eater . He started his HVAC company last year and has 5 workers . We don’t know what to do , I don’t know if is he going to manage his company
My dear husband was diagnosed with lung cancer stage 4 today , I cannot breath , it was so shocking to both of us , he never smoked , no even a drinker , healthy eater . He started his HVAC company last year and has 5 workers . We don’t know what to do , I don’t know if is he going to manage his company
Parisaeshg
in
Lung Cancer Support
6 years ago
Strength in numbers
A couple of weeks ago I visited the BLF Direct Helpline team up in Liverpool as part of my induction training after joining the BLF in December. I was enormously impressed by everything that I saw and what struck me the most was just how passionate, friendly and hard-working the whole team are. Their
A couple of weeks ago I visited the BLF Direct Helpline team up in Liverpool as part of my induction training after joining the BLF in December. I was enormously impressed by everything that I saw and what struck me the most was just how passionate, friendly and hard-working the whole team are. Their
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
6 years ago
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