Oh Mary (@fowlair), what a story you have to tell, thanks for sharing. You and your husband have been through so much. I'm glad you've had this additional time together. You've been fortunate to have each other, and I wish you both the very best and peace during the coming months.
That is what I am most thankful for, time. We have been able to say everything we could possibly want to say. Actually, this has brought us closer together and we appreciate each other more than in the previous 47 years together. @sstiffel64 Take advantage of every moment with your loved ones. I don't know how you are feeling, but don't put off day trips that are manageable. Do what you can while you feel good. Let your goals include making memories with those who love you. Yes, you want great doctors, and I have loved everyone at Mayo Jacksonville. They are the best. They treat you with dignity and respect, not as just a body to be treated. But don't forget to LIVE LIFE as a whole human being as long as you can.
I'll be thinking of you!
That is what I am most thankful for, time. We have been able to say everything we could possibly want to say. Actually, this has brought us closer together and we appreciate each other more than in the previous 47 years together. @sstiffel64 Take advantage of every moment with your loved ones. I don't know how you are feeling, but don't put off day trips that are manageable. Do what you can while you feel good. Let your goals include making memories with those who love you. Yes, you want great doctors, and I have loved everyone at Mayo Jacksonville. They are the best. They treat you with dignity and respect, not as just a body to be treated. But don't forget to LIVE LIFE as a whole human being as long as you can.
I'll be thinking of you!
Thank you for kind words and advise. Weird thing is I am so lucky right now. I really wouldn’t know how sick I am if doctors didn’t tell me. Just get exhausted quicker but afternoon napping seems to handle it. Brain scan yesterday shows four tiny tumors I figured this with vision issue last week. Appointment today looking forward to getting treatment started.
@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?
Yes, I’m beginning treatments chemo/katruda/ etc tomorrow . I had a port installed Friday so I’m ready to start. My bio marker test came back with KRAS g12C . 1st round treatment will be for I think 3 treatments every 3 weeks. I just wanted to ask what to expect going forward. I know that it is very different for each person. I’m 68 years old and a former smoker ( stopped in 2013. Thanks for any responses !
Yes, I’m beginning treatments chemo/katruda/ etc tomorrow . I had a port installed Friday so I’m ready to start. My bio marker test came back with KRAS g12C . 1st round treatment will be for I think 3 treatments every 3 weeks. I just wanted to ask what to expect going forward. I know that it is very different for each person. I’m 68 years old and a former smoker ( stopped in 2013. Thanks for any responses !
Hello- I wish you the best during your chemo. And you are correct that everyone is different. But so are other medications. Generally speaking, you will most likely be tired, and you might lose your appetite. Your tastes in food might change..mine did. I wanted spicy food so I could taste it. One of my medications had a very strong metallic taste, and I couldn't taste anything, so the spicier the better for me!
Some, but not all chemo's can be a culprit in hair loss.
Have you been told what your chemo will be?
I suggest that you have a caretaker if you don't already. Make things as easy as possible for yourself, at least for the first session or until you know how it affects you.
As each dose is given to you the effects might seem more noticeable, so be prepared for that.
Even if you have your port, you might be a bit tender for the first few times that it is used. The nurse will give you suggestions on how to care for it.
I suggest that you bring snacks and a book to read. This is to help you from being bored. If you feel ill ask the nurse immediately for help with it. Don't brave it out. And nap if you can.
Do you have any specific questions? Have you done any preparations for this at all other than your port?
Merry
It's my belief that cancer patients need to be babied, catered to, and adored.
Hello- I wish you the best during your chemo. And you are correct that everyone is different. But so are other medications. Generally speaking, you will most likely be tired, and you might lose your appetite. Your tastes in food might change..mine did. I wanted spicy food so I could taste it. One of my medications had a very strong metallic taste, and I couldn't taste anything, so the spicier the better for me!
Some, but not all chemo's can be a culprit in hair loss.
Have you been told what your chemo will be?
I suggest that you have a caretaker if you don't already. Make things as easy as possible for yourself, at least for the first session or until you know how it affects you.
As each dose is given to you the effects might seem more noticeable, so be prepared for that.
Even if you have your port, you might be a bit tender for the first few times that it is used. The nurse will give you suggestions on how to care for it.
I suggest that you bring snacks and a book to read. This is to help you from being bored. If you feel ill ask the nurse immediately for help with it. Don't brave it out. And nap if you can.
Do you have any specific questions? Have you done any preparations for this at all other than your port?
Merry
It's my belief that cancer patients need to be babied, catered to, and adored.
Thank you so much for the response ! Yes, they have given me information as to the type of chemo. I would need to check that information. It’s very comforting having communication with people with similar diagnosis. I’m very very fortunate to have my wife of 50 years as my primary care giver. We have family locally that will help in any way possible as well. Additionally we are going to hopefully identify and obtain some additional help from someone available in our area with experience in care giving. Thanks again so much !
Thank you so much for the response ! Yes, they have given me information as to the type of chemo. I would need to check that information. It’s very comforting having communication with people with similar diagnosis. I’m very very fortunate to have my wife of 50 years as my primary care giver. We have family locally that will help in any way possible as well. Additionally we are going to hopefully identify and obtain some additional help from someone available in our area with experience in care giving. Thanks again so much !
@sstiffel64, if I understand correctly, genetic testing showed that your lung tumor is a genetic mutation, namely multiple endocrine neoplasia type 1 (MEN1). As you likely were told MEN1 is a hereditary condition associated with tumors of the endocrine (hormone producing) glands.
You may also wish to join the discussions in the Neuroendocrine Tumors (NETs) support group, like this one:
- Multiple Endocrine Neoplasia 1 (MEN1): What treatments have you had? https://connect.mayoclinic.org/discussion/men1/
While she doesn't have MEN1, @lls8000 also has a genetic lung cancer type.
@sstiffel64, how do the results of the genetic testing affect your treatment plan? What are next steps for you?
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That is what I am most thankful for, time. We have been able to say everything we could possibly want to say. Actually, this has brought us closer together and we appreciate each other more than in the previous 47 years together. @sstiffel64 Take advantage of every moment with your loved ones. I don't know how you are feeling, but don't put off day trips that are manageable. Do what you can while you feel good. Let your goals include making memories with those who love you. Yes, you want great doctors, and I have loved everyone at Mayo Jacksonville. They are the best. They treat you with dignity and respect, not as just a body to be treated. But don't forget to LIVE LIFE as a whole human being as long as you can.
I'll be thinking of you!
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Like -
Helpful -
Hug
1 ReactionThank you for kind words and advise. Weird thing is I am so lucky right now. I really wouldn’t know how sick I am if doctors didn’t tell me. Just get exhausted quicker but afternoon napping seems to handle it. Brain scan yesterday shows four tiny tumors I figured this with vision issue last week. Appointment today looking forward to getting treatment started.
Yes, I’m beginning treatments chemo/katruda/ etc tomorrow . I had a port installed Friday so I’m ready to start. My bio marker test came back with KRAS g12C . 1st round treatment will be for I think 3 treatments every 3 weeks. I just wanted to ask what to expect going forward. I know that it is very different for each person. I’m 68 years old and a former smoker ( stopped in 2013. Thanks for any responses !
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Like -
Helpful -
Hug
1 ReactionHello- I wish you the best during your chemo. And you are correct that everyone is different. But so are other medications. Generally speaking, you will most likely be tired, and you might lose your appetite. Your tastes in food might change..mine did. I wanted spicy food so I could taste it. One of my medications had a very strong metallic taste, and I couldn't taste anything, so the spicier the better for me!
Some, but not all chemo's can be a culprit in hair loss.
Have you been told what your chemo will be?
I suggest that you have a caretaker if you don't already. Make things as easy as possible for yourself, at least for the first session or until you know how it affects you.
As each dose is given to you the effects might seem more noticeable, so be prepared for that.
Even if you have your port, you might be a bit tender for the first few times that it is used. The nurse will give you suggestions on how to care for it.
I suggest that you bring snacks and a book to read. This is to help you from being bored. If you feel ill ask the nurse immediately for help with it. Don't brave it out. And nap if you can.
Do you have any specific questions? Have you done any preparations for this at all other than your port?
Merry
It's my belief that cancer patients need to be babied, catered to, and adored.
-
Like -
Helpful -
Hug
4 ReactionsThank you so much for the response ! Yes, they have given me information as to the type of chemo. I would need to check that information. It’s very comforting having communication with people with similar diagnosis. I’m very very fortunate to have my wife of 50 years as my primary care giver. We have family locally that will help in any way possible as well. Additionally we are going to hopefully identify and obtain some additional help from someone available in our area with experience in care giving. Thanks again so much !
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Helpful -
Hug
2 ReactionsGood luck!
Thank you so much !
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1 ReactionAm thinking of you. Deep breaths!
Merry
Genetics came back from lung tumor. Men1
Has anyone else had this and any drugs that target it?
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1 Reaction@sstiffel64, if I understand correctly, genetic testing showed that your lung tumor is a genetic mutation, namely multiple endocrine neoplasia type 1 (MEN1). As you likely were told MEN1 is a hereditary condition associated with tumors of the endocrine (hormone producing) glands.
You may also wish to join the discussions in the Neuroendocrine Tumors (NETs) support group, like this one:
- Multiple Endocrine Neoplasia 1 (MEN1): What treatments have you had?
https://connect.mayoclinic.org/discussion/men1/
While she doesn't have MEN1, @lls8000 also has a genetic lung cancer type.
@sstiffel64, how do the results of the genetic testing affect your treatment plan? What are next steps for you?
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Like -
Helpful -
Hug
2 Reactions