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18 year old Son Diagnosed with ALD
My son was just recently diagnosed with ALD and will be getting a Bone Marrow transplant soon. We are all very scared and lost right now and if you have any advice we would love to hear it.
My son was just recently diagnosed with ALD and will be getting a Bone Marrow transplant soon. We are all very scared and lost right now and if you have any advice we would love to hear it.
ballml
in
Leukodystrophy Support
7 years ago
Update - my Foundation One report is in. 😯
Friends, My last scan at the end of June made it official: no new spots, but everything is growing. I had already had a biopsy with a removal of a lymph node by that time so that we could get a comprehensive genomic analysis of where I'm at right now. The past month has been an exercise in patience as
Friends, My last scan at the end of June made it official: no new spots, but everything is growing. I had already had a biopsy with a removal of a lymph node by that time so that we could get a comprehensive genomic analysis of where I'm at right now. The past month has been an exercise in patience as
scifiknitter
Blogger
in
Lung Cancer Support
7 years ago
Just the facts / In Summer Heat Stay Hydrated - Please
FACT about sickle cell trait "The defect in urine concentrating ability in persons with sickle cell trait is thought to result from intracellular polymerization of Hb S in erythrocytes, leading to microvascular occlusion, in the vasa recta of the renal medulla. Reasoning that the severity of the concentration
FACT about sickle cell trait "The defect in urine concentrating ability in persons with sickle cell trait is thought to result from intracellular polymerization of Hb S in erythrocytes, leading to microvascular occlusion, in the vasa recta of the renal medulla. Reasoning that the severity of the concentration
RadiantSue
in
Sickle Cell Society
7 years ago
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Hi I'm new to this group low vitamin B9 folate
Hi I'm new to this group I have slightly low vitamin B9 folate I'm told I was looking it up and this group came up. Can anyone tell me what this means as I have long term health problems too many to mention, I suffer with lots of muscle joint pain and fatigue recently suffered a bout of moderate gastritis
Hi I'm new to this group I have slightly low vitamin B9 folate I'm told I was looking it up and this group came up. Can anyone tell me what this means as I have long term health problems too many to mention, I suffer with lots of muscle joint pain and fatigue recently suffered a bout of moderate gastritis
GillyGangGong
in
Pernicious Anaemia Society
7 years ago
Donor identified
It's been a while since my last update but I'm pleased to say that I have a donor lined up for a stem cell transplant. A young man from Germany. I am to stay on Ibruitinin for 6 more months and then good to go.
It's been a while since my last update but I'm pleased to say that I have a donor lined up for a stem cell transplant. A young man from Germany. I am to stay on Ibruitinin for 6 more months and then good to go.
KAS8
in
CLL Support
7 years ago
For those diagnosed with Giant Cell Arteritis - this was tweeted just a few minutes ago
A breakthrough in the treatment of GCA @RheumatologyUK @PMRGCAuk @vascuk Please follow this link https://www.ncbi.nlm.nih.gov/pubmed/28745999
A breakthrough in the treatment of GCA @RheumatologyUK @PMRGCAuk @vascuk Please follow this link https://www.ncbi.nlm.nih.gov/pubmed/28745999
Suzym2u
Vasculitis UK
in
Vasculitis UK
7 years ago
Cat scan report after one year of lung lobectomy surgery
Greetings and blessings to this wonderful community. My report was slightly indeterminate, which, has me feeling edgy. It states numerous new bilateral tiny subsolid lung nodules might be infection or inflammatory, but neoplama cannot be excluded. Oncologist didn't seem to be worried and recommended
Greetings and blessings to this wonderful community. My report was slightly indeterminate, which, has me feeling edgy. It states numerous new bilateral tiny subsolid lung nodules might be infection or inflammatory, but neoplama cannot be excluded. Oncologist didn't seem to be worried and recommended
Faith17
in
Lung Cancer Support
7 years ago
CT scan Saturday...very frightened
Hi...I posted previously about a small lung opacity being picked up by x-ray. I have got my appointment through today for my ct scan...its on Saturday. I'm pleased it's so soon but have no idea what to expect, and am terrified of the outcome. There's part of me thinking this time next week my anxiety
Hi...I posted previously about a small lung opacity being picked up by x-ray. I have got my appointment through today for my ct scan...its on Saturday. I'm pleased it's so soon but have no idea what to expect, and am terrified of the outcome. There's part of me thinking this time next week my anxiety
evizza
in
Lung Conditions Community Forum
7 years ago
Opdivo vs katruda?
My husband has stage 4 nsc lung cancer. Diagnosed in 2011. He first had proton radiation therapy but mass was behind his heart so they didn't get it all. He had 2 Opdivo last year but got bilateral pneumonia and blood clots in his lung. He survived but had a hard time of it. Pet showed reduction because
My husband has stage 4 nsc lung cancer. Diagnosed in 2011. He first had proton radiation therapy but mass was behind his heart so they didn't get it all. He had 2 Opdivo last year but got bilateral pneumonia and blood clots in his lung. He survived but had a hard time of it. Pet showed reduction because
GMC1
in
Lung Cancer Support
7 years ago
Looking for advice.
Hi. I've just joined this site for two reasons. My daughter has Graves disease. I have primary hyperparathyroidism with possible 4 gland hyperplasia. I had a parathyroidectomy 5 weeks ago with half my thyroid removed during the operation. My daughters blood results are good at the moment but she is only
Hi. I've just joined this site for two reasons. My daughter has Graves disease. I have primary hyperparathyroidism with possible 4 gland hyperplasia. I had a parathyroidectomy 5 weeks ago with half my thyroid removed during the operation. My daughters blood results are good at the moment but she is only
hollyhobbi
in
Thyroid UK
7 years ago
Being a sickle cell
I never knew I was had the SCT trait until I was 15years. I always had pain and fell sick easily with malaria and a times typhoid. And even d sickle cell crisis . It's not easy to be a carrier of this trait but with good diet, medication and love from families and friends, I bliv all is well.
I never knew I was had the SCT trait until I was 15years. I always had pain and fell sick easily with malaria and a times typhoid. And even d sickle cell crisis . It's not easy to be a carrier of this trait but with good diet, medication and love from families and friends, I bliv all is well.
dinah9927
in
Sickle Cell Society
7 years ago
Lung transplant register
Well I went to Wythenshawe hospital last week to see a transplant consultant, my next step is my 3 day assessment for all the test on my other organs and then fingers crossed I may be placed on the register. Small Steps but feeling positive.
Well I went to Wythenshawe hospital last week to see a transplant consultant, my next step is my 3 day assessment for all the test on my other organs and then fingers crossed I may be placed on the register. Small Steps but feeling positive.
Joseph260268
in
Lung Conditions Community Forum
7 years ago
Phenomenal News
Some of you may have seen my recent post inquiring about full remission. The reason is that I have been in full remission since June 2nd without any of my prior symptoms. I have not had one moment of cog fog, muscle spasm, fatigue, numbness, or loss of balance. I have not: changed my diet, changed my
Some of you may have seen my recent post inquiring about full remission. The reason is that I have been in full remission since June 2nd without any of my prior symptoms. I have not had one moment of cog fog, muscle spasm, fatigue, numbness, or loss of balance. I have not: changed my diet, changed my
Karen-x
in
My MSAA Community
7 years ago
DYSPHAGIA - Medications that can cause Swallowing Problems
Here is a list of the medications that can impact swallowing and why this happens: Dysphagia as a side effect of medication Medications that affect the smooth and striated muscles of the esophagus which are involved in swallowing may cause dysphagia. Medications with anticholinergic or antimuscarinic
Here is a list of the medications that can impact swallowing and why this happens: Dysphagia as a side effect of medication Medications that affect the smooth and striated muscles of the esophagus which are involved in swallowing may cause dysphagia. Medications with anticholinergic or antimuscarinic
gutlesswonder
in
Oesophageal & Gastric Cancer
7 years ago
How to identify the correct symptoms of lung cancer?
A cancer that begins in the lungs and most often occurs in people who have a habit of smoking but it is can be caused to passive smokers too. Here are the symptoms to identify lung cancer: 1.A cough that does not go away or gets worse 2.Coughing up blood or rust-colored sputum (spit or phlegm) 3.
A cancer that begins in the lungs and most often occurs in people who have a habit of smoking but it is can be caused to passive smokers too. Here are the symptoms to identify lung cancer: 1.A cough that does not go away or gets worse 2.Coughing up blood or rust-colored sputum (spit or phlegm) 3.
LindaMa
in
The Roy Castle Lung Cancer Foundation
7 years ago
just found out i have lung cancer
Hi this is my first post , found out i have lung cancer 3 days ago. I went to my DR,late April for joint pain . She arranged for bloods and 2 xrays 1 for my hands and the other for chest i asked her why chest ?you have clubbing nails and this is a sign of lung problems !! never heard of this and
Hi this is my first post , found out i have lung cancer 3 days ago. I went to my DR,late April for joint pain . She arranged for bloods and 2 xrays 1 for my hands and the other for chest i asked her why chest ?you have clubbing nails and this is a sign of lung problems !! never heard of this and
hollyboo
in
Lung Conditions Community Forum
7 years ago
NSCLC EDFR Migration Stage 4 LC at 37.
Hi guys. I'm Adam, I was diagnosed last April at the age of 37 with Stage 4 Lung Cancer which had spread to my spine. It was caught on an X-ray of my throat completely unrelated to the cancer. As a lifetime non-smoker it was a complete shock (and still is). Turns out it was due to DNA mutation). Ive
Hi guys. I'm Adam, I was diagnosed last April at the age of 37 with Stage 4 Lung Cancer which had spread to my spine. It was caught on an X-ray of my throat completely unrelated to the cancer. As a lifetime non-smoker it was a complete shock (and still is). Turns out it was due to DNA mutation). Ive
AdamLaver
in
The Roy Castle Lung Cancer Foundation
7 years ago
PIP payments after a double lung transplant
I wonder if anyone from the UK could answer this questions. If you are receiving PIP payment do you have to inform them before your operation or after? Once you have had your operation will your PIP payment be stopped? All responses would be welcome Kind regards Joe
I wonder if anyone from the UK could answer this questions. If you are receiving PIP payment do you have to inform them before your operation or after? Once you have had your operation will your PIP payment be stopped? All responses would be welcome Kind regards Joe
Joseph260268
in
Lung Conditions Community Forum
7 years ago
It's a Nice Day for a White Wedding
Hi Folks , , just a social post to prove that despite my current issues battling my inner GVHD 'friend', there is life after undergoing a Stem cell transplant. My beautiful wife and I attended a Nieces wedding this weekend. It was a casual event as weddings go and very enjoyable. I was keeping everything
Hi Folks , , just a social post to prove that despite my current issues battling my inner GVHD 'friend', there is life after undergoing a Stem cell transplant. My beautiful wife and I attended a Nieces wedding this weekend. It was a casual event as weddings go and very enjoyable. I was keeping everything
JediReject
in
MPN Voice
7 years ago
Newbie here
62 years old, PCD with SI and polysplenia. Have a 66yo sister PCD/SI, too. Normal sister and brother as well. On oxygen 24/7, currently living at sea level, but am about to move in next couple of months; we'll see if I can tolerate 1800 feet above sea level or not. But I need a dryer climate, now
62 years old, PCD with SI and polysplenia. Have a 66yo sister PCD/SI, too. Normal sister and brother as well. On oxygen 24/7, currently living at sea level, but am about to move in next couple of months; we'll see if I can tolerate 1800 feet above sea level or not. But I need a dryer climate, now
shannielars
in
PCD Family Support Group (UK)
7 years ago
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