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 !
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 !
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.
@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 !
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.
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!
My husband has Stage 4 lung cancer. Initially diagnosed as Stage 1 in 2013. Had a wedge resection, no spreading to other areas. After that a few very small nodules in lung remained. Follow up scans every 3 months. Stable until May 2020. Growth returned in femur, lungs, liver and brain. Started on chemo, and radiation to brain. Growth again stopped and all except lungs showed no cancer. Chemo halted in November 2021 due to affecting production of red blood cells. November 2022, cancer returned aggressive growth. Cannot go back on chemo, Mayo dr recommended hospice.
He went from 185 lbs to 131 during this time. Hospice put him on a steroid and he gained 30 lbs in 2 months. He’s had more energy and his appetite has increased. But his short term memory is poor, he is unsteady on his feet, and now has urinary incontinence. He has been pain-free this whole time, but he told me last night that he’s having intermittent pain under his armpit. So I suspect it is now in the bones.
We’ve been living with this for 10 years, and with Stage 4 for 3 years. I truly believe the doctors at Mayo have extended his life longer than normally expected. They are wonderful, caring people. I love Dr Manochakian!
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.
Hello all,
Was just informed my lung cancer has spread to Liver and T7 to T4 vertebra. Diagnosis is Metastatic neuroendocrine tumor. I was seeing Duke until this Tuesday when I switched to Mayo Clinic Jacksonville. My first visit is 8/24. Looking forward to getting a plan together. I left previous Dr. because he was tone deaf to my needs and desires. I do not do well on opioids and even with my paid being pretty strong I have learned to tolerate it and keep it in check with ice packs, heating pads, and estim.
I am just looking for a Dr. who is willing to fight as hard as I am. Will post updates as I move along this path.
My husband has Stage 4 lung cancer. Initially diagnosed as Stage 1 in 2013. Had a wedge resection, no spreading to other areas. After that a few very small nodules in lung remained. Follow up scans every 3 months. Stable until May 2020. Growth returned in femur, lungs, liver and brain. Started on chemo, and radiation to brain. Growth again stopped and all except lungs showed no cancer. Chemo halted in November 2021 due to affecting production of red blood cells. November 2022, cancer returned aggressive growth. Cannot go back on chemo, Mayo dr recommended hospice.
He went from 185 lbs to 131 during this time. Hospice put him on a steroid and he gained 30 lbs in 2 months. He’s had more energy and his appetite has increased. But his short term memory is poor, he is unsteady on his feet, and now has urinary incontinence. He has been pain-free this whole time, but he told me last night that he’s having intermittent pain under his armpit. So I suspect it is now in the bones.
We’ve been living with this for 10 years, and with Stage 4 for 3 years. I truly believe the doctors at Mayo have extended his life longer than normally expected. They are wonderful, caring people. I love Dr Manochakian!
Yes on the testing. And Mayo was so quick at getting my records transferred while I was on the phone making appointment. I am looking forward to a game plan.
Hello all,
Was just informed my lung cancer has spread to Liver and T7 to T4 vertebra. Diagnosis is Metastatic neuroendocrine tumor. I was seeing Duke until this Tuesday when I switched to Mayo Clinic Jacksonville. My first visit is 8/24. Looking forward to getting a plan together. I left previous Dr. because he was tone deaf to my needs and desires. I do not do well on opioids and even with my paid being pretty strong I have learned to tolerate it and keep it in check with ice packs, heating pads, and estim.
I am just looking for a Dr. who is willing to fight as hard as I am. Will post updates as I move along this path.
Hello @sstiffel64, I'm sure it's difficult to deal with this diagnosis and pain! I hope you find what you are looking for with the switch to Mayo in Jacksonville. Sometimes a fresh review of your situation is exactly what's needed.
You likely know that understanding the driver of the cancer is critical in selecting treatments. Has there been a biopsy or other test that's shown that the new progression is driven from the neuroendocrine tumor, and not a second separate cancer?
There is a specific group for NET patients that may be helpful for you too: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
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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 !
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Helpful -
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2 ReactionsHello- 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 ReactionsYes, 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 !
-
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.
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!
-
Like -
Helpful -
Hug
1 ReactionOh 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.
-
Like -
Helpful -
Hug
1 ReactionMy husband has Stage 4 lung cancer. Initially diagnosed as Stage 1 in 2013. Had a wedge resection, no spreading to other areas. After that a few very small nodules in lung remained. Follow up scans every 3 months. Stable until May 2020. Growth returned in femur, lungs, liver and brain. Started on chemo, and radiation to brain. Growth again stopped and all except lungs showed no cancer. Chemo halted in November 2021 due to affecting production of red blood cells. November 2022, cancer returned aggressive growth. Cannot go back on chemo, Mayo dr recommended hospice.
He went from 185 lbs to 131 during this time. Hospice put him on a steroid and he gained 30 lbs in 2 months. He’s had more energy and his appetite has increased. But his short term memory is poor, he is unsteady on his feet, and now has urinary incontinence. He has been pain-free this whole time, but he told me last night that he’s having intermittent pain under his armpit. So I suspect it is now in the bones.
We’ve been living with this for 10 years, and with Stage 4 for 3 years. I truly believe the doctors at Mayo have extended his life longer than normally expected. They are wonderful, caring people. I love Dr Manochakian!
-
Like -
Helpful -
Hug
4 ReactionsYes on the testing. And Mayo was so quick at getting my records transferred while I was on the phone making appointment. I am looking forward to a game plan.
-
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Helpful -
Hug
2 ReactionsHello @sstiffel64, I'm sure it's difficult to deal with this diagnosis and pain! I hope you find what you are looking for with the switch to Mayo in Jacksonville. Sometimes a fresh review of your situation is exactly what's needed.
You likely know that understanding the driver of the cancer is critical in selecting treatments. Has there been a biopsy or other test that's shown that the new progression is driven from the neuroendocrine tumor, and not a second separate cancer?
There is a specific group for NET patients that may be helpful for you too: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
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Like -
Helpful -
Hug
1 Reaction