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alicantina1
@alicantina1

Posts: 5
Joined: Nov 07, 2016

Adenocarcinoma lung with metastasis pelvis, back, femur bones stage IV

Posted by @alicantina1, Nov 7, 2016

What can happen if treatment is refused?

REPLY

Welcome to Connect, Alicia.
I’d like to introduce you to other members of Connect who are living with or caring for someone with lung cancer. Please meet @merilee @alvinw @llwortman @shortshot80 @mryzuch @amws and @burrkay.

I want to make sure I understand your question correctly, Alicia. Are you considering stopping active treatment and opting for palliative care? Or have you requested a treatment that your care team advised against?

@colleenyoung

Welcome to Connect, Alicia.
I’d like to introduce you to other members of Connect who are living with or caring for someone with lung cancer. Please meet @merilee @alvinw @llwortman @shortshot80 @mryzuch @amws and @burrkay.

I want to make sure I understand your question correctly, Alicia. Are you considering stopping active treatment and opting for palliative care? Or have you requested a treatment that your care team advised against?

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I hope you are not considering stopping any treatment. If you have something that is treatable, keep it up. My lung cancer is not treatable. I have two kinds. One on right lung is plain old lung cancer: Right lung is mesothelioma, which is not treatable. If treatment is available do take it. I am 83 years old and just this year diagnosis with this disease. If there was a treatment available I would do it. Nancy. /…………………………………………..
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@colleenyoung

Welcome to Connect, Alicia.
I’d like to introduce you to other members of Connect who are living with or caring for someone with lung cancer. Please meet @merilee @alvinw @llwortman @shortshot80 @mryzuch @amws and @burrkay.

I want to make sure I understand your question correctly, Alicia. Are you considering stopping active treatment and opting for palliative care? Or have you requested a treatment that your care team advised against?

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Age is just a number and attitude is everything. I am a 8 year 9 month non small cell lung cancer survivor and I have had the amazing opportunity to meet other lung cancer survivors on my journey. I have a friend who was diagnosed with mesothelioma whose doctors told him the would not live 4 months. Both of us Never Smoked!

I literally drug him to Mayo Clinic where doctors decided his mesothelioma was operable. He lived another 6 years after lung surgery. His “quality of life” afforded him the opportunity to get back on cross country skies and ski another 5 years. I also recommended that he take a class about Paced Breathing, taught by Dr Amit Sood. Excellent!!! He felt his life had changed and he was grateful.

Keep up your great work you are the voice of this disease.

Kind regards,
Linda

Alicia, please dont give up..i have been inspired by so many stories of hope on here.. The treatments are alot better and more toleable than they used to be..If treatable is available ..then you owe it to yourself to fight…Please give the treatments a try…keep/ in touch..We are all here to support each other and positive thinking is a good place to start….. Merilee

Dear Alicia:
You are so right about the improvements in treatments. These would not be possible without the brilliant minds of research teams and doctors and our brave patients. 9 years ago when I was diagnosed with non small cell lung cancer and a 3cm amor in my upper left lung lobe, it was difficult to find the proper diagnosis and proper treatment. Without Mayo Clinic I would not be here today breathing, running and climbing higher to help others become aware of the amazing treatments that give us the best quality of life. So, Never Ever Give Up! is my motto. Keeping our attitude on the up side is equally important. So, love, laugh and sing and take time out to quiet your body mind and spirit 2x’s a day. I am grateful for Mayo Connect it will help us all as we come together is this wonderful community. Thank you. Linda Wortman

Thank you for all the replies of encouragement for Alica. However, I want to point out the making the decision to stop active treatment does not necessarily mean “giving up”. As an example, I offer my father’s colorectal cancer story. My father was stage IV, and was offered palliative care with or without chemotherapy. The cancer at this point was no longer curable, thus that was not the goal of treatment. Palliative care with chemo could prolong his survival by 12 months rather than 6 without. He chose palliative + chemo. However, after 2 treatments, the side effects were unbearable. He choose to stop treatment, enjoyed another lovely 8 months with fewer symptoms. With minimal pain management he had a better quality of life. We were all comfortable and supportive of his choice, and it is a time that we continue to cherish.

I share this story only to say that choices are individual. @alicantina1, I hope you’ll share your decision point with us so we can support you in the way you need to be supported at this time.

Liked by Jamie Olson

@llwortman

Dear Alicia:
You are so right about the improvements in treatments. These would not be possible without the brilliant minds of research teams and doctors and our brave patients. 9 years ago when I was diagnosed with non small cell lung cancer and a 3cm amor in my upper left lung lobe, it was difficult to find the proper diagnosis and proper treatment. Without Mayo Clinic I would not be here today breathing, running and climbing higher to help others become aware of the amazing treatments that give us the best quality of life. So, Never Ever Give Up! is my motto. Keeping our attitude on the up side is equally important. So, love, laugh and sing and take time out to quiet your body mind and spirit 2x’s a day. I am grateful for Mayo Connect it will help us all as we come together is this wonderful community. Thank you. Linda Wortman

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I was diagnosed with non small cell lung cancer 3 years and 3 months ago. When I hear from people like you, I am lifted right out of any temporary depression and realize that I should always expect the best, rather than the worst. Getting a second opinion and treatment at Mayo was the best decision that I’ve made. I wish you the best.

Gerry

Many thanks to you all for your commentaries. At this point molecular tests are being done to see about eligibility for targeted treatment. Awaiting results to see if ALK is positive or not. Definitely aware of the power of positive outlook and optimism towards possible treatment! Quality of life very important factor when looking at treatments and their adverse effects, as in the example given by the moderator.

@colleenyoung

Welcome to Connect, Alicia.
I’d like to introduce you to other members of Connect who are living with or caring for someone with lung cancer. Please meet @merilee @alvinw @llwortman @shortshot80 @mryzuch @amws and @burrkay.

I want to make sure I understand your question correctly, Alicia. Are you considering stopping active treatment and opting for palliative care? Or have you requested a treatment that your care team advised against?

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Right now my husband has received one dose of Zometa, which hit him really hard. He hasn’t had anymore and we await to see if he is ALK positive. You really answered my question with the experience your father had. Neither my husband nor I would like to do therapy that only offers a few months of bad side efects. Thank you so much.

@llwortman

Dear Alicia:
You are so right about the improvements in treatments. These would not be possible without the brilliant minds of research teams and doctors and our brave patients. 9 years ago when I was diagnosed with non small cell lung cancer and a 3cm amor in my upper left lung lobe, it was difficult to find the proper diagnosis and proper treatment. Without Mayo Clinic I would not be here today breathing, running and climbing higher to help others become aware of the amazing treatments that give us the best quality of life. So, Never Ever Give Up! is my motto. Keeping our attitude on the up side is equally important. So, love, laugh and sing and take time out to quiet your body mind and spirit 2x’s a day. I am grateful for Mayo Connect it will help us all as we come together is this wonderful community. Thank you. Linda Wortman

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Hi Gerry,
@merilee @alicantina1 @llwortman @shortshot80 and @burrkay will you join me in welcoming Gerry to Connect?

Gerry, we look forward to getting to know more about you. What treatment have you had? How are you doing today?

@alicantina1

Many thanks to you all for your commentaries. At this point molecular tests are being done to see about eligibility for targeted treatment. Awaiting results to see if ALK is positive or not. Definitely aware of the power of positive outlook and optimism towards possible treatment! Quality of life very important factor when looking at treatments and their adverse effects, as in the example given by the moderator.

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Hi, I WAS DIGNOSE WITH TWO KIND OF LUNG CANCER LAST jANUARY.i HAVE PLAIN LUNG CANER IN MY RIGHT LUNG. i HAVE MESOTHLIOMA IN MY LEFT LUNG. i AM 83 YEARS OLD, sO FAR THERE HA BEEN NO TREATMENT. mESOTHELIOMA ISNT VERY TREATABLE. jUST VERY EMOTIONAL….SHORTSHOT80.

Hi Alicia-
Don’t give up-please!
My wife has stage IV NSCLC, Mayo removed 2 lobes of her right lung 18 months ago. She subsequently had chemo, and last July was told her cancer had metastasized. Her oncologist recommended Opdivo, which he has now determined (after 9 infusions) that she is not responding to…molecular testing revealed that hers is an ERbB2, found in only 2% of lung cancer patients. She qualifies for 2 clinical trials, NEVER GIVE UP!
Assuming she is accepted for the My Pathway trial, she will try it…if she can’t tolerate the drugs she will try the My Match trial. NEVER GIVE UP!
Best of luck!

@colleenyoung

Welcome to Connect, Alicia.
I’d like to introduce you to other members of Connect who are living with or caring for someone with lung cancer. Please meet @merilee @alvinw @llwortman @shortshot80 @mryzuch @amws and @burrkay.

I want to make sure I understand your question correctly, Alicia. Are you considering stopping active treatment and opting for palliative care? Or have you requested a treatment that your care team advised against?

Jump to this post

Hi: you are race to share your diagnosis. Many people have difficulty reaching out. I know of a man who in fact had surgery at Mayo RST for mesothelioma and it improv d his quality of life fir 5 years. Everyone was pleasantly surprised and it also gave everyone to accept the miracles of surgery and determination of someone in their 80’s!
It sets examples in many ways.
Mayo Clinic gives everyone hope and time to live many lessons. Everyday is a blessing and teaches us to be grateful… at least in my case as a 8 year 11 month lung cancer survivor;-)
Bless you!
Linda

We found out that my husband is not ALK positive so two days ago he began chemotherapy. No vomiting, but stomach discomfort and acid reflux as well as not beng able to eat. Since yesterday he has only eaten soup, a vitamin-high caloric drink, orange juice, some oatmeal and a yoghurt shake. Peppermint candy bits seem to calm the reflux and now he has been prescribed omeprazol which he begins tomorrow. Any suggestions for foods? Smells really get to him even though they are not strong ones. Thanks to anyone with ideas !

Hang in there…what chemicals are they giving him?
Have they done a genomics study?
My wife was determined to have Her2 mutation, only after going thru chemo…
Her2 is typically found in breast cancer, but hers was in the lungs! She had NSCLC.

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