Thanks very much for your reply. Again, I'm so sorry your husband passed, but I'm glad to know you were able to spend another nine years together past what doctors had predicted his lifespan would be.
I've done quite a bit of research on Keytruda so far, but, as you've made clear in your post, the adverse side effects are unpredictable until they happen. I've heard some people have had very good results being treated with it, and others haven't been so fortunate.
Hi abob,
I'm sorry that you and your husband are going through issues with his cancer treatments. Perhaps, your husband should take some time away from the treatments for a while and see what condition he is in. Possibly his body is getting too much medication. That can happen. We are all separate individuals and react differently to medications. The doctor may try and talk your husband out of quitting even for only a short time. However, it's your husband's choice. It's his body and his money!
I wish you and your husband the best. I will remember you both in my prayers.
PML
Thanks for your feedback. Right now he needs to continue bc chemo resolved metastasis to his adrenal gland, and now pet ct showed small light up on the back of his lung. But we will keep possibly taking a break in mind once he’s had no concerning scan results.
Hi Tomm1951,
It has been 14 years since my husband was diagnosed with Stage 4 lung cancer. However, he received Keytruda treatments and almost died. He got Pancreatitis which is a known side effect of Keytruda. It was because of our very good primary doctor and prayers, that he got to the right specialist and after a long battle, my husband was fine. However, he said that he would never have another Keytruda treatment. The cancer doctors didn't like that decision but it was my husband's body and money! (Keytruda cost $25,000 per infusion!) He received two infusions per month. My husband did great after that for quite a while. He did die of lung cancer two months ago. I really believe that if my husband had continued getting Keytruda he would have died sooner.
I would suggest doing as much research on Keytruda as you can before you make a decision. Don't just take what happened to my husband as the only result. Everyone is different when it comes to medication. Once you have a lot of information, then you can decide what is best for you. Pray about it and God will direct you.
I'll remember you in my prayers.
PML
Thank you for sharing. You were a great caretaker for a wonderful husband who soldiered on for fourteen years. Thank you for the information and such good advice. Peace and Love.
Thank you for sharing. You were a great caretaker for a wonderful husband who soldiered on for fourteen years. Thank you for the information and such good advice. Peace and Love.
Dear Mentors or members, I could use some guidance from you on where to post, please. I joined a few months ago, and I'm not sure how to post a new question in the right spot among all these threads. I have tried to not to jump in on stuff from a few years ago, and to find the current ones. Thank you.
Here is my first question since I started chemo #1 on 10/28/2024.
Question: Anyone experience my feelings about their pre-chemo patient education session w/ a nurse practitioner where I wished the NP had given me a handout for my first treatment to record my meds, pain level, food intake, & notes to bring to the next session before treatment #2? Is this a common occurrence or is it just my NP? I'm tempted to tell him about this on my first meeting this week. What do you think?
I found some records to use on this site thanks to you mentors.
Second, I bought a large print paperback book on Amazon to record my meds. I was having most of my nausea on days 4 -6 to my surprise & don’t know what I would have done without it.
And last, a Dr. Griggs on You Tube helped me to prepare how to record the anti-emetics I needed to manage for Cisplatin and Pemetrexed. She is an breast cancer oncologist, but her info applied to my lung chemotherapy.
(NSCL stage 2-B, moderate growth of one primary 5.2 cm adenocarcinoma tumor, negative nodes, w/ negative biomarker for immunotherapy.)
It's been hard for me. I go from grumpy to weepy to despair to hope.
Dear Mentors or members, I could use some guidance from you on where to post, please. I joined a few months ago, and I'm not sure how to post a new question in the right spot among all these threads. I have tried to not to jump in on stuff from a few years ago, and to find the current ones. Thank you.
Here is my first question since I started chemo #1 on 10/28/2024.
Question: Anyone experience my feelings about their pre-chemo patient education session w/ a nurse practitioner where I wished the NP had given me a handout for my first treatment to record my meds, pain level, food intake, & notes to bring to the next session before treatment #2? Is this a common occurrence or is it just my NP? I'm tempted to tell him about this on my first meeting this week. What do you think?
I found some records to use on this site thanks to you mentors.
Second, I bought a large print paperback book on Amazon to record my meds. I was having most of my nausea on days 4 -6 to my surprise & don’t know what I would have done without it.
And last, a Dr. Griggs on You Tube helped me to prepare how to record the anti-emetics I needed to manage for Cisplatin and Pemetrexed. She is an breast cancer oncologist, but her info applied to my lung chemotherapy.
(NSCL stage 2-B, moderate growth of one primary 5.2 cm adenocarcinoma tumor, negative nodes, w/ negative biomarker for immunotherapy.)
It's been hard for me. I go from grumpy to weepy to despair to hope.
Hello Burdyblue.........regarding the start of your chemotherapy journey.....it is definitely not for the faint of heart. My lung cancer condition was very similar to yours....stage 2A with a lower right lobe lobectomy 2 years ago. I then underwent 3 rounds of the same cisplatin/permextred chemotherapy over the course of about 3 months. The support and pretreatment education provided by Mayo Clinic Arizona was very good. My oncologist and team provided me with preliminary information and a packet prior to the virtual education seminar by the oncology PA. If you did not receive written information and a means to record your medications and symptoms prior to starting treatment then you should bring that to the attention to your provider so that they can correct that for future patients.
In regards to managing the symptoms related to the chemotherapy everyone is different but in general for those of us who have taken the cisplatin/permextred route you learn to expect the downturn at about 4-6 days post each treatment. Your prescribed emetics should help you get through that period but each person needs to "listen" to their body accordingly. It is extremely important that you keep as hydrated as possible while going through chemotherapy (water, sport drinks, fruit juices, ect.).......your tastes will probably change as you are going through your treatments so be open to trying different things.....just stay hydrated to help avoid kidney toxicity issues. The same goes for food intake.......try to eat as healthy as you can but don't be surprised if your interest in certain foods just disappears. During those "down" periods try to eat smaller portions and perhaps revert back to those comfort foods that you enjoyed growing up (I resurrected a number of old recipes that I had from childhood). And rest when your body tells you to rest..........its no shame in taking a day to just sit in a comfy chair and sleep if you feel like it.
As your chemo treatments continue keep a close eye on your symptoms and also your blood test results. Cisplatin is known to cause irreversible kidney damage and also hearing loss (among other side effects). Work with your oncologist to keep them up to date and informed so that quick decisions regarding future chemo treatments can be made.
As noted earlier......chemotherapy is not easy but I do believe it provides an important treatment option in the cancer battle. Good luck on your continued journey.........You can do this!!
Dear Mentors or members, I could use some guidance from you on where to post, please. I joined a few months ago, and I'm not sure how to post a new question in the right spot among all these threads. I have tried to not to jump in on stuff from a few years ago, and to find the current ones. Thank you.
Here is my first question since I started chemo #1 on 10/28/2024.
Question: Anyone experience my feelings about their pre-chemo patient education session w/ a nurse practitioner where I wished the NP had given me a handout for my first treatment to record my meds, pain level, food intake, & notes to bring to the next session before treatment #2? Is this a common occurrence or is it just my NP? I'm tempted to tell him about this on my first meeting this week. What do you think?
I found some records to use on this site thanks to you mentors.
Second, I bought a large print paperback book on Amazon to record my meds. I was having most of my nausea on days 4 -6 to my surprise & don’t know what I would have done without it.
And last, a Dr. Griggs on You Tube helped me to prepare how to record the anti-emetics I needed to manage for Cisplatin and Pemetrexed. She is an breast cancer oncologist, but her info applied to my lung chemotherapy.
(NSCL stage 2-B, moderate growth of one primary 5.2 cm adenocarcinoma tumor, negative nodes, w/ negative biomarker for immunotherapy.)
It's been hard for me. I go from grumpy to weepy to despair to hope.
Hi @burdyblue, There are many ways to navigate Mayo Connect. Sometimes more options can be good but can also lead to more confusion. Feel free to ask for help anytime. 🙂
There's nothing wrong with posting to an older discussion. When you do that, members will see your post as an addition to the original discussion.
You can also start a new discussion. There are a couple of ways to do that:
- Begin at your Home page. In the middle of the page, there is an option for 'Start a Discussion'. Clicking that will require you to select the Lung Cancer group.
- OR, if you are already on the Lung Cancer group page, you'll see a link to 'Start a New Discussion'.
Thanks for adding your own tips above. I would mention what you've come up at your appointment with the NP this week. Sharing what's helped you may prompt the NP to offer something similar to patients that are just starting.
Hugs to you, this is not an easy thing for anyone to go through. Being exhausted and not feeling well brings out the emotions in all of us. Those emotions are all valid. There is a lot of hope in today's treatments for lung cancer. More than any other time.
Hello Burdyblue.........regarding the start of your chemotherapy journey.....it is definitely not for the faint of heart. My lung cancer condition was very similar to yours....stage 2A with a lower right lobe lobectomy 2 years ago. I then underwent 3 rounds of the same cisplatin/permextred chemotherapy over the course of about 3 months. The support and pretreatment education provided by Mayo Clinic Arizona was very good. My oncologist and team provided me with preliminary information and a packet prior to the virtual education seminar by the oncology PA. If you did not receive written information and a means to record your medications and symptoms prior to starting treatment then you should bring that to the attention to your provider so that they can correct that for future patients.
In regards to managing the symptoms related to the chemotherapy everyone is different but in general for those of us who have taken the cisplatin/permextred route you learn to expect the downturn at about 4-6 days post each treatment. Your prescribed emetics should help you get through that period but each person needs to "listen" to their body accordingly. It is extremely important that you keep as hydrated as possible while going through chemotherapy (water, sport drinks, fruit juices, ect.).......your tastes will probably change as you are going through your treatments so be open to trying different things.....just stay hydrated to help avoid kidney toxicity issues. The same goes for food intake.......try to eat as healthy as you can but don't be surprised if your interest in certain foods just disappears. During those "down" periods try to eat smaller portions and perhaps revert back to those comfort foods that you enjoyed growing up (I resurrected a number of old recipes that I had from childhood). And rest when your body tells you to rest..........its no shame in taking a day to just sit in a comfy chair and sleep if you feel like it.
As your chemo treatments continue keep a close eye on your symptoms and also your blood test results. Cisplatin is known to cause irreversible kidney damage and also hearing loss (among other side effects). Work with your oncologist to keep them up to date and informed so that quick decisions regarding future chemo treatments can be made.
As noted earlier......chemotherapy is not easy but I do believe it provides an important treatment option in the cancer battle. Good luck on your continued journey.........You can do this!!
Hello sglaza,
Thank you. I am glad you are on the other side of surgery and chemotherapy. I am scheduled for 4 rounds. I would rather go only 3 also, but maybe my stage 2B had something to do w/ that. ??
Lucky you in beautiful Arizona at the Mayo clinic. I got standard handouts, but was not encouraged to journal or record, but I did. I was so overwhelmed with all the meds, the diet, the side effects. I'm not used to such detailed self-care management and it was more work than I thought it would be. It also felt good to record my emotional state to vent and scream quietly. (My spouse tells me that I am not a person who gives up control easily.)
The first 3 days were manageable w/ anti emetics, esp. a low dose of olanzapine at night; I flipped zofran and compezine ev 3 hrs if I was aware of my stomach. Thought I made it homefree and "done" until day 4 through 6 when Mother Nature showed no mercy. I was in constant breakthrough and recovery mode stomach wise & got exhausted. I'm going to talk with the NP tomorrow about those days. Supposedly, patients quickly forget days 4 -6, an oncologist informed me on You Tube, so recordkeeping pays off to manage things better.
Yes, the diet, quantities, hydration, and rest you noted were spot on. Initially, I asked my oncologist what I could eat while on chemo and she said, "Anything you want." Well, that is not true which perplexes me. One night I ate beans and that was mistake. No one told me to use Miralax but I did that luckily. People can end up in the ER for that I read. Yes, listen to my body. We navigate the best we can, I get it.
Yes the symptoms that may become long term do concern me. I want to live my next years with a quality of life, not deaf, blind or frustrated, and so on. My NP is very young, has been doing this for just a few yrs. I'm guessing. When I asked him about the long-term effects of hearing loss and vision loss that he knew about, he said he had "seen none." I told him that if he continues in oncology for the next 30 years, he will probably see some ex patients with it.
Thank you for taking the time to respond and giving me encouragement. Made my day. It is a journey, yes.
Again, I am glad you are on the other side and may you have a joyful holiday season that is coming up. --Bb
Connect
Connect
Like
Helpful
Hug
Thanks very much for your reply. Again, I'm so sorry your husband passed, but I'm glad to know you were able to spend another nine years together past what doctors had predicted his lifespan would be.
I've done quite a bit of research on Keytruda so far, but, as you've made clear in your post, the adverse side effects are unpredictable until they happen. I've heard some people have had very good results being treated with it, and others haven't been so fortunate.
@tomm1951, you may also be interested in these related discussions:
- Immunotherapy: Keytruda (pembrolizumab)
https://connect.mayoclinic.org/discussion/immunotherapy-and-chemo/
- Keytruda for NSCLC: What's your experience?
https://connect.mayoclinic.org/discussion/keytruda-2/
- Keytruda side effects after completing 2 years lung cancer treatment
https://connect.mayoclinic.org/discussion/keytruda-side-affect-after-completing-2-years-lung-cancer-treatment/
See all https://connect.mayoclinic.org/group/lung-cancer/?search=Keytruda&index=discussions
Have you had your first treatment? How did it go?
-
Like -
Helpful -
Hug
1 ReactionThanks for your feedback. Right now he needs to continue bc chemo resolved metastasis to his adrenal gland, and now pet ct showed small light up on the back of his lung. But we will keep possibly taking a break in mind once he’s had no concerning scan results.
Thank you for sharing. You were a great caretaker for a wonderful husband who soldiered on for fourteen years. Thank you for the information and such good advice. Peace and Love.
-
Like -
Helpful -
Hug
2 ReactionsThank you for the kind words! You made my day very special! Peace and Love to you also.
PML
-
Like -
Helpful -
Hug
3 ReactionsWelcome. This site feels like a safe and open place for me among other people who are experiencing my ups and downs with lung cancer.
-
Like -
Helpful -
Hug
1 ReactionDear Mentors or members, I could use some guidance from you on where to post, please. I joined a few months ago, and I'm not sure how to post a new question in the right spot among all these threads. I have tried to not to jump in on stuff from a few years ago, and to find the current ones. Thank you.
Here is my first question since I started chemo #1 on 10/28/2024.
Question: Anyone experience my feelings about their pre-chemo patient education session w/ a nurse practitioner where I wished the NP had given me a handout for my first treatment to record my meds, pain level, food intake, & notes to bring to the next session before treatment #2? Is this a common occurrence or is it just my NP? I'm tempted to tell him about this on my first meeting this week. What do you think?
I found some records to use on this site thanks to you mentors.
Second, I bought a large print paperback book on Amazon to record my meds. I was having most of my nausea on days 4 -6 to my surprise & don’t know what I would have done without it.
And last, a Dr. Griggs on You Tube helped me to prepare how to record the anti-emetics I needed to manage for Cisplatin and Pemetrexed. She is an breast cancer oncologist, but her info applied to my lung chemotherapy.
(NSCL stage 2-B, moderate growth of one primary 5.2 cm adenocarcinoma tumor, negative nodes, w/ negative biomarker for immunotherapy.)
It's been hard for me. I go from grumpy to weepy to despair to hope.
Thank you for your help.
-
Like -
Helpful -
Hug
3 ReactionsHello Burdyblue.........regarding the start of your chemotherapy journey.....it is definitely not for the faint of heart. My lung cancer condition was very similar to yours....stage 2A with a lower right lobe lobectomy 2 years ago. I then underwent 3 rounds of the same cisplatin/permextred chemotherapy over the course of about 3 months. The support and pretreatment education provided by Mayo Clinic Arizona was very good. My oncologist and team provided me with preliminary information and a packet prior to the virtual education seminar by the oncology PA. If you did not receive written information and a means to record your medications and symptoms prior to starting treatment then you should bring that to the attention to your provider so that they can correct that for future patients.
In regards to managing the symptoms related to the chemotherapy everyone is different but in general for those of us who have taken the cisplatin/permextred route you learn to expect the downturn at about 4-6 days post each treatment. Your prescribed emetics should help you get through that period but each person needs to "listen" to their body accordingly. It is extremely important that you keep as hydrated as possible while going through chemotherapy (water, sport drinks, fruit juices, ect.).......your tastes will probably change as you are going through your treatments so be open to trying different things.....just stay hydrated to help avoid kidney toxicity issues. The same goes for food intake.......try to eat as healthy as you can but don't be surprised if your interest in certain foods just disappears. During those "down" periods try to eat smaller portions and perhaps revert back to those comfort foods that you enjoyed growing up (I resurrected a number of old recipes that I had from childhood). And rest when your body tells you to rest..........its no shame in taking a day to just sit in a comfy chair and sleep if you feel like it.
As your chemo treatments continue keep a close eye on your symptoms and also your blood test results. Cisplatin is known to cause irreversible kidney damage and also hearing loss (among other side effects). Work with your oncologist to keep them up to date and informed so that quick decisions regarding future chemo treatments can be made.
As noted earlier......chemotherapy is not easy but I do believe it provides an important treatment option in the cancer battle. Good luck on your continued journey.........You can do this!!
-
Like -
Helpful -
Hug
2 ReactionsHi @burdyblue, There are many ways to navigate Mayo Connect. Sometimes more options can be good but can also lead to more confusion. Feel free to ask for help anytime. 🙂
There's nothing wrong with posting to an older discussion. When you do that, members will see your post as an addition to the original discussion.
You can also start a new discussion. There are a couple of ways to do that:
- Begin at your Home page. In the middle of the page, there is an option for 'Start a Discussion'. Clicking that will require you to select the Lung Cancer group.
- OR, if you are already on the Lung Cancer group page, you'll see a link to 'Start a New Discussion'.
Thanks for adding your own tips above. I would mention what you've come up at your appointment with the NP this week. Sharing what's helped you may prompt the NP to offer something similar to patients that are just starting.
Hugs to you, this is not an easy thing for anyone to go through. Being exhausted and not feeling well brings out the emotions in all of us. Those emotions are all valid. There is a lot of hope in today's treatments for lung cancer. More than any other time.
-
Like -
Helpful -
Hug
4 ReactionsHello sglaza,
Thank you. I am glad you are on the other side of surgery and chemotherapy. I am scheduled for 4 rounds. I would rather go only 3 also, but maybe my stage 2B had something to do w/ that. ??
Lucky you in beautiful Arizona at the Mayo clinic. I got standard handouts, but was not encouraged to journal or record, but I did. I was so overwhelmed with all the meds, the diet, the side effects. I'm not used to such detailed self-care management and it was more work than I thought it would be. It also felt good to record my emotional state to vent and scream quietly. (My spouse tells me that I am not a person who gives up control easily.)
The first 3 days were manageable w/ anti emetics, esp. a low dose of olanzapine at night; I flipped zofran and compezine ev 3 hrs if I was aware of my stomach. Thought I made it homefree and "done" until day 4 through 6 when Mother Nature showed no mercy. I was in constant breakthrough and recovery mode stomach wise & got exhausted. I'm going to talk with the NP tomorrow about those days. Supposedly, patients quickly forget days 4 -6, an oncologist informed me on You Tube, so recordkeeping pays off to manage things better.
Yes, the diet, quantities, hydration, and rest you noted were spot on. Initially, I asked my oncologist what I could eat while on chemo and she said, "Anything you want." Well, that is not true which perplexes me. One night I ate beans and that was mistake. No one told me to use Miralax but I did that luckily. People can end up in the ER for that I read. Yes, listen to my body. We navigate the best we can, I get it.
Yes the symptoms that may become long term do concern me. I want to live my next years with a quality of life, not deaf, blind or frustrated, and so on. My NP is very young, has been doing this for just a few yrs. I'm guessing. When I asked him about the long-term effects of hearing loss and vision loss that he knew about, he said he had "seen none." I told him that if he continues in oncology for the next 30 years, he will probably see some ex patients with it.
Thank you for taking the time to respond and giving me encouragement. Made my day. It is a journey, yes.
Again, I am glad you are on the other side and may you have a joyful holiday season that is coming up. --Bb