Still having severe breathing issues after resumption of prednisone, 40 mg per day. It appeared to improve but all of a sudden went sideways on me, now I’m living at the end of air tubing and not handling it very well. The pulmonary and oncologist Dr’s are convinced it’s damage caused by the radiation treatments that were completed in mid January. A CT scan last week showed no malignancy and, according to the Dr’s, confirmed radiation pneumonitis. The possible side effects of the radiation treatments were never discussed or explained to me before hand, otherwise I may have explored other options. Can anyone shed some light on what I can anticipate in the future and/or how much longer this will last??.... Dutch..
I have stage4 Adenocarcinoma lung cancer I was diagnosed with stage 4 in 2019. I first had stage 3a in December 2017 had two right lobes removed, chemo then it was April 19th it reoccurrence I had it on my right adrenal gland and right diagram. I had 10 rounds of radiation and 5 treatments of Keytruda but I had a stroke and very bad arthritis couldn’t get out of bed no quality of life! Now I’m being watched and it is stable but growing a little.
@erv58 |- Welcome to Mayo Clinic Connect and the lung cancer group. I am the mentor for this group and have had lung cancer for many years. Were you shocked that you had lung cancer or not surprised? My heart fell to the ground but I was a heavy smoker and was not surprised.
I bet that it was unnerving to find that you couldn't continue your treatment. What kind of lung cancer do you have? Since your treatments have stopped do you feel better? Did your treaments reduce your tumors?
@erv58 |- Welcome to Mayo Clinic Connect and the lung cancer group. I am the mentor for this group and have had lung cancer for many years. Were you shocked that you had lung cancer or not surprised? My heart fell to the ground but I was a heavy smoker and was not surprised.
I bet that it was unnerving to find that you couldn't continue your treatment. What kind of lung cancer do you have? Since your treatments have stopped do you feel better? Did your treaments reduce your tumors?
I was very surprised as I had no symptoms I was having a test for a hernia and when I stood in front of the X-ray machine the radiologist said are you feeling okay an I said yes then he went on to tell me I had a large mass! I had stopped smoking 12 years before but I also lived in second hand smoke all of my childhood life. So I was surprised but I accepted the diagnosis and wanted to get get it out of my body. Still do but my tumors are fairly small. Adenocarcinoma is the type I have and my PDL1 was 80% so I had Keytruda until I had the stroke and arthritis so awful I couldn’t live like that either so here I’m on the fence not knowing or wanting anymore treatments.
I was very surprised as I had no symptoms I was having a test for a hernia and when I stood in front of the X-ray machine the radiologist said are you feeling okay an I said yes then he went on to tell me I had a large mass! I had stopped smoking 12 years before but I also lived in second hand smoke all of my childhood life. So I was surprised but I accepted the diagnosis and wanted to get get it out of my body. Still do but my tumors are fairly small. Adenocarcinoma is the type I have and my PDL1 was 80% so I had Keytruda until I had the stroke and arthritis so awful I couldn’t live like that either so here I’m on the fence not knowing or wanting anymore treatments.
What a tough decision to make. But I get you, sometimes it's much better to have a good quality of life than suffer like you were. You have an unusual chance here that not many people do and that is to direct what kind of life you want to live until you can't. You have the chance to change things in your life that you don't want and be the decision-maker and architect of the "rest of your life.' Not many people get to do that.
My tumor was found by accident too, I thought that I had a broken rib.
Is your arthritis under control and have you recovered from your stroke? Tel me how I can help you, Ok?
I’ve was diagnosed with stage 4 cancer in right lung Nodules in kidney and cells in let lung and stomach 2 years ago.very aggressive cancer and I was not sick before diagnosis. Had walked up three flights of stairs to deliver meals on wheels and could not breath. Went to Dr same day. My Dr was as shocked as I was cause I was healthy active person. Went to Mayo and was told it was not curable but treatable with some new drugs. Seven months after treatments (was sick 10 days 10 days to recovery next day back for more.) said I had enough and quit all treatments but keytruda and feeling good. Tumor shrunk, nodules in kidney gone and rest was same as it was 4 months ago. God is good.
I’ve was diagnosed with stage 4 cancer in right lung Nodules in kidney and cells in let lung and stomach 2 years ago.very aggressive cancer and I was not sick before diagnosis. Had walked up three flights of stairs to deliver meals on wheels and could not breath. Went to Dr same day. My Dr was as shocked as I was cause I was healthy active person. Went to Mayo and was told it was not curable but treatable with some new drugs. Seven months after treatments (was sick 10 days 10 days to recovery next day back for more.) said I had enough and quit all treatments but keytruda and feeling good. Tumor shrunk, nodules in kidney gone and rest was same as it was 4 months ago. God is good.
Hi-yes, Stage 4 is scary…BUT, there are many treatments for it, and more to come!
My wife has stage 4 NSCLC, a 6+ year survivor. She is currently on “chemo holiday” recommended by our Mayo team. The tumors are still there, but not growing…so scans every 60-90 days just to keep a close watch on the tumors.
Keep the faith and stay strong!
@nursed2075- Welcome to Mayo Connect. Yes, we have a lung cancer group. I am the mentor for lung cancer and health. I do have stage 4 lung cancer. Many people in the lung cancer group do. I'm horrible on my cell phone otherwise I'd put the link here. You can access it the same way you found this group.
Why are you interested in stage 4 lung cancer patients? Have you been diagnosed with it?
Hello,my wife has stage 4 lung cancer. She was having head aches and dizzy spells when she fell and broke her tibia they did a ct scan and found a brain tumer and had that removed ,after lab work they discovered it came from her lung . It was small cell lung cancer since her diagnoses she has had 15 radiation treatments to her brain and so far 12 rounds of chemo. As of 7/23/2021 she has been in the hospital with pneumonia they or giving her platelets. Also her o2 levels will fall any where from 80 to 50 and i dont know how i can help her.We are raising 4 grand kids she is only 53 and I am 57 I would be greatfull for any hlp or support. Thank you
Hello,my wife has stage 4 lung cancer. She was having head aches and dizzy spells when she fell and broke her tibia they did a ct scan and found a brain tumer and had that removed ,after lab work they discovered it came from her lung . It was small cell lung cancer since her diagnoses she has had 15 radiation treatments to her brain and so far 12 rounds of chemo. As of 7/23/2021 she has been in the hospital with pneumonia they or giving her platelets. Also her o2 levels will fall any where from 80 to 50 and i dont know how i can help her.We are raising 4 grand kids she is only 53 and I am 57 I would be greatfull for any hlp or support. Thank you
Oh, my word @crawdad you have your mind, heart, and arms full. As a lung cancer survivor myself, having had chemo and radiation I can only tell you what helped me. Be honest, always! If she is uncomfortable she means it and ask her what she thinks would help. Let her eat what she wants, no arguments!
I don't know how old your grandchildren are but see if their school has any recommendations.
What is her mobility like? Is she active at all? Has anyone mentioned palliative care or hospice?
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I had some inflammation after radiation and it did resolve on its own but it takes time months!!!
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1 Reaction@erv58 |- Welcome to Mayo Clinic Connect and the lung cancer group. I am the mentor for this group and have had lung cancer for many years. Were you shocked that you had lung cancer or not surprised? My heart fell to the ground but I was a heavy smoker and was not surprised.
I bet that it was unnerving to find that you couldn't continue your treatment. What kind of lung cancer do you have? Since your treatments have stopped do you feel better? Did your treaments reduce your tumors?
I was very surprised as I had no symptoms I was having a test for a hernia and when I stood in front of the X-ray machine the radiologist said are you feeling okay an I said yes then he went on to tell me I had a large mass! I had stopped smoking 12 years before but I also lived in second hand smoke all of my childhood life. So I was surprised but I accepted the diagnosis and wanted to get get it out of my body. Still do but my tumors are fairly small. Adenocarcinoma is the type I have and my PDL1 was 80% so I had Keytruda until I had the stroke and arthritis so awful I couldn’t live like that either so here I’m on the fence not knowing or wanting anymore treatments.
What a tough decision to make. But I get you, sometimes it's much better to have a good quality of life than suffer like you were. You have an unusual chance here that not many people do and that is to direct what kind of life you want to live until you can't. You have the chance to change things in your life that you don't want and be the decision-maker and architect of the "rest of your life.' Not many people get to do that.
My tumor was found by accident too, I thought that I had a broken rib.
Is your arthritis under control and have you recovered from your stroke? Tel me how I can help you, Ok?
That’s some encouragement, hoping to see some improvement soon. Thanks for the input..
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1 ReactionI’ve was diagnosed with stage 4 cancer in right lung Nodules in kidney and cells in let lung and stomach 2 years ago.very aggressive cancer and I was not sick before diagnosis. Had walked up three flights of stairs to deliver meals on wheels and could not breath. Went to Dr same day. My Dr was as shocked as I was cause I was healthy active person. Went to Mayo and was told it was not curable but treatable with some new drugs. Seven months after treatments (was sick 10 days 10 days to recovery next day back for more.) said I had enough and quit all treatments but keytruda and feeling good. Tumor shrunk, nodules in kidney gone and rest was same as it was 4 months ago. God is good.
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1 ReactionI know Keytruda is awesome for most people! But for a few it causes havoc. Unfortunately I’m one of them. 😞
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1 ReactionHi-yes, Stage 4 is scary…BUT, there are many treatments for it, and more to come!
My wife has stage 4 NSCLC, a 6+ year survivor. She is currently on “chemo holiday” recommended by our Mayo team. The tumors are still there, but not growing…so scans every 60-90 days just to keep a close watch on the tumors.
Keep the faith and stay strong!
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Helpful -
Hug
1 ReactionHello,my wife has stage 4 lung cancer. She was having head aches and dizzy spells when she fell and broke her tibia they did a ct scan and found a brain tumer and had that removed ,after lab work they discovered it came from her lung . It was small cell lung cancer since her diagnoses she has had 15 radiation treatments to her brain and so far 12 rounds of chemo. As of 7/23/2021 she has been in the hospital with pneumonia they or giving her platelets. Also her o2 levels will fall any where from 80 to 50 and i dont know how i can help her.We are raising 4 grand kids she is only 53 and I am 57 I would be greatfull for any hlp or support. Thank you
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Like -
Helpful -
Hug
1 ReactionOh, my word @crawdad you have your mind, heart, and arms full. As a lung cancer survivor myself, having had chemo and radiation I can only tell you what helped me. Be honest, always! If she is uncomfortable she means it and ask her what she thinks would help. Let her eat what she wants, no arguments!
I don't know how old your grandchildren are but see if their school has any recommendations.
What is her mobility like? Is she active at all? Has anyone mentioned palliative care or hospice?