Hi @burdyblue, I thought I'd check in to see how you're doing. I think you are wise to journal your ups and downs the days/weeks after a chemo treatment so that you can prepare for the next round. That can help you to know when you'll have energy and when you'll want to have others take on caring for you. If you know those tough days are coming, be kind to yourself and let people care. I'm sure they want to help. Maybe they even would like to know how they can help. Some people are at a loss. Let them know you'd like them to do a load of laundry and how you like it done. You can still have sense of control in a constructive way, right?
Thank you Colleen for asking. I would say I am doing fine on day 3 after my second round of chemo therapy last Monday. I'm on edge a little as it is day 4 and that's when my downturn began last time. Maybe not so bad as my oncologist reduced the dose a little bit for treatment #2 instead of changing to carboplatin.
Because I journaled my physical side effects, medication times and amounts, and even my diet, and my mental emotions, I think I can better gauge the effects perhaps. The one morning after round #1 on day 4 I woke up weeping for unknown reasons, but it was probably due to the mood effects from the steroid dexamethasone. I won't worry now as much if that happens again, just will pull myself together over tea or coffee or water to start off the day. I know how how to flip the meds time wise for anti nausea and when to just plop down in a chair to recoup, and then to get up to do just a little laundry when I can. And boy, does that pile up quick. Yes, my husband helps by doing the folding, the hardest part for me, and I was so grateful since as he was never accustomed to that. He has allowed me to advise him on how to cook for the first time really. Before, he didn't have to so he stayed out of the kitchen. I'm the better cook. Now, he has to play lead cook and grocery shopper and is rather proud of his new skills I think. I get in and out of the grocery store but he takes a long time perusing all the kinds of foods he didn't ever see before and he rather enjoys that. Cancer is a game changer for sure.
Right, it has given me a sense of control and more focus. At first diagnose and what to do, I felt like my life was out of control and I could not focus, was mad at all the phone calls I had to make with appts. Travel and wait times had taken over my life and I wasn't getting my work done in my art studio. So mad. But now that this process is happening, I am seeing the light at the end of the tunnel and I am more relaxed even in spite of the nasty side effects. They will go away.
Thank you so much for your response and support. It feels good to have a place with others who understand. I will look up those related discussions you shared. Happy Thanksgiving to you and your family. —Burdyblue
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.
Thank you for the navigation advice. It was worth a million for the future so I screen shot your instructions. I may have responded to you already, but I am in a fog on day 3 out from treatment number 2 from cisplatin and pemetrexed. So I am responding in case I didn't. If I am repeating myself, please forgive. Many thanks.—Burdyblue
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!!
Thanks for that advice, sglaza. I responded to a later reply of yours today. I'm off on my timing as I am in the midst of the second treatment. I'm more foggy this time. I can't remember things that just happened two minutes ago that I said or did, so I warned my husband to please understand. I took every piece of advice you gave and noted the downturn on day 4 as I explained in the previous reply. That was encouraging because it was so unexpected thinking it would be tough only from day 1 to 3, not 4 on. I didn't feel "normal" until day 14 really. All the flipping back and forth between compazine and zofran and dememethasone, plus olanzapine at night all for anti-nausea made me feel drunk at times. I kept a walker close to my bed in case I had to get up in the middle of the night just in case. I was not going to fall and add a fracture to this treatment! I was walking several miles a day before this chemo after being two months out from my lobectomy. But the best I could do by the end of treatment 1 was ¾ of a mile with my dogs, and 3 more treatments to go was bumming me out. I'm now 50 percent of the way, yay. I'm now even more determined to do the chemo since I started this process. I feel like "you are not going to beat me down, cancer. I can be stronger than you." I sure didn't start out that way. I howled all the way up until the day I showed up for the first treatment. I felt cancer took all my control away from me. So I let go, surrendered, let it work, and actually felt more in control and more focused. It was a tough decision.
Hoping you are doing well and that your kidneys are all right. Grateful for your response. It helped a lot, many thanks. —Burdyblue
Hello burdyblue,
FYI, I was also scheduled for 4 rounds of chemotherapy however the kidney toxicity issues cropped up and my oncologist decided that the 4th round would only cause additional kidney problems. Make sure they are paying close attention to your BUN and eGFR blood values prior to each treatment to make sure they are not getting too elevated.
Good luck on the rest of your infusion treatments and then, presumably, your oral treatments with Tagrisso.
Thank you, sglaza.
Oh, I see about the the 3 rounds only. The first round for me with cisplatin and pemetrexed, (coupled with Ativan to alleviate anxiety which was a godsend, the 6 hours drip time passed in a haze) was brutal. I was "okay" day 1-3 with flu like feeling no great nausea or vomiting, the acute phase. But the delayed phase from day 4 was treacherous. I thought side effects would not continue with the supposed wash out of the chemicals after 2 to 3 days. Not so. Got thrush in my mouth, my throat swelled and I lost my voice, rash like mosquito bites all over my shoulders, chest, back, head. Terrible nausea and vomiting broke through on day 4 and it took 8 hours to get that under control and then I was on protein liquids only for nearly 5 days and lost 5 lbs, felt wobbly and my gait was off, floaters in my eyes, ringing in my ears, moody and weepy, felt like my limbs were encased in buckets of concrete with fatigue that set in. I was no sooner feeling better by day 14 then it was 5 days to countdown for treatment #2. I called the oncologist to switch to carboplatin, an alternative that supposedly doesn't do kidney damage with less nausea effects, so I read on the Internet, by way but I don't know. She advised me to meet her halfway and she would reduce the drugs instead, to hang in there with the cisplatin she thought was the better choice so I compromised. I am on day 3 out from round 2, and okay, so I will let you know how the rest fares. . It does feel like it is not so bad this time. I never wanted this chemo, but I was on the fence between stage 1 and 2 and accepted it for "insurance." I will look into Tagrisso, thank you for that info. My biomarkers state that I am not a good candidate for immunotherapy if that is what it is. But the oncologist says I still might want to do immunotherapy for a year because it just might help. I don't know about much of that at this point in my treatment yet. I did ask about my BUN and eGFR values after the first treatment and they were good to go. Thank you for that advice. I was afraid of long term effects I learned as I researched too about hearing loss, nerve damage and so on, so I said no to the chemo at first. So, I sat with the uncomfortable prospects for days until it came to me that as long as I can move my hand to write and paint, my quality of life would be acceptable if I lost some hearing and my nerves were damaged, but supposedly should come back at a pathetically slow rate as in years, especially with exercise and strength training. That is the hardest thing to do--in South Texas it is finally cooling off and to will myself off the couch takes a tremendous amount of self parenting myself! Thank you for your response. Made my day when I finally got to the computer here for support. I'm sorry if I overshared too many of the side effects, don't want to be negative, but it was brutal but it was doable. My spouse was there and my oncologist responded with all sorts of quick fixes for the thrush and so on. And yay for those who handled the side effects better than me. I'm not the young, fit chick I used to be! Again, many thanks for responding. __Burdyblue
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!!
Hi @burdyblue, I thought I'd check in to see how you're doing. I think you are wise to journal your ups and downs the days/weeks after a chemo treatment so that you can prepare for the next round. That can help you to know when you'll have energy and when you'll want to have others take on caring for you. If you know those tough days are coming, be kind to yourself and let people care. I'm sure they want to help. Maybe they even would like to know how they can help. Some people are at a loss. Let them know you'd like them to do a load of laundry and how you like it done. You can still have sense of control in a constructive way, right?
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
Hello burdyblue,
FYI, I was also scheduled for 4 rounds of chemotherapy however the kidney toxicity issues cropped up and my oncologist decided that the 4th round would only cause additional kidney problems. Make sure they are paying close attention to your BUN and eGFR blood values prior to each treatment to make sure they are not getting too elevated.
Good luck on the rest of your infusion treatments and then, presumably, your oral treatments with Tagrisso.
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
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.
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.
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Thank you Colleen for asking. I would say I am doing fine on day 3 after my second round of chemo therapy last Monday. I'm on edge a little as it is day 4 and that's when my downturn began last time. Maybe not so bad as my oncologist reduced the dose a little bit for treatment #2 instead of changing to carboplatin.
Because I journaled my physical side effects, medication times and amounts, and even my diet, and my mental emotions, I think I can better gauge the effects perhaps. The one morning after round #1 on day 4 I woke up weeping for unknown reasons, but it was probably due to the mood effects from the steroid dexamethasone. I won't worry now as much if that happens again, just will pull myself together over tea or coffee or water to start off the day. I know how how to flip the meds time wise for anti nausea and when to just plop down in a chair to recoup, and then to get up to do just a little laundry when I can. And boy, does that pile up quick. Yes, my husband helps by doing the folding, the hardest part for me, and I was so grateful since as he was never accustomed to that. He has allowed me to advise him on how to cook for the first time really. Before, he didn't have to so he stayed out of the kitchen. I'm the better cook. Now, he has to play lead cook and grocery shopper and is rather proud of his new skills I think. I get in and out of the grocery store but he takes a long time perusing all the kinds of foods he didn't ever see before and he rather enjoys that. Cancer is a game changer for sure.
Right, it has given me a sense of control and more focus. At first diagnose and what to do, I felt like my life was out of control and I could not focus, was mad at all the phone calls I had to make with appts. Travel and wait times had taken over my life and I wasn't getting my work done in my art studio. So mad. But now that this process is happening, I am seeing the light at the end of the tunnel and I am more relaxed even in spite of the nasty side effects. They will go away.
Thank you so much for your response and support. It feels good to have a place with others who understand. I will look up those related discussions you shared. Happy Thanksgiving to you and your family. —Burdyblue
Thank you for the navigation advice. It was worth a million for the future so I screen shot your instructions. I may have responded to you already, but I am in a fog on day 3 out from treatment number 2 from cisplatin and pemetrexed. So I am responding in case I didn't. If I am repeating myself, please forgive. Many thanks.—Burdyblue
Thanks for that advice, sglaza. I responded to a later reply of yours today. I'm off on my timing as I am in the midst of the second treatment. I'm more foggy this time. I can't remember things that just happened two minutes ago that I said or did, so I warned my husband to please understand. I took every piece of advice you gave and noted the downturn on day 4 as I explained in the previous reply. That was encouraging because it was so unexpected thinking it would be tough only from day 1 to 3, not 4 on. I didn't feel "normal" until day 14 really. All the flipping back and forth between compazine and zofran and dememethasone, plus olanzapine at night all for anti-nausea made me feel drunk at times. I kept a walker close to my bed in case I had to get up in the middle of the night just in case. I was not going to fall and add a fracture to this treatment! I was walking several miles a day before this chemo after being two months out from my lobectomy. But the best I could do by the end of treatment 1 was ¾ of a mile with my dogs, and 3 more treatments to go was bumming me out. I'm now 50 percent of the way, yay. I'm now even more determined to do the chemo since I started this process. I feel like "you are not going to beat me down, cancer. I can be stronger than you." I sure didn't start out that way. I howled all the way up until the day I showed up for the first treatment. I felt cancer took all my control away from me. So I let go, surrendered, let it work, and actually felt more in control and more focused. It was a tough decision.
Hoping you are doing well and that your kidneys are all right. Grateful for your response. It helped a lot, many thanks. —Burdyblue
Thank you, sglaza.
Oh, I see about the the 3 rounds only. The first round for me with cisplatin and pemetrexed, (coupled with Ativan to alleviate anxiety which was a godsend, the 6 hours drip time passed in a haze) was brutal. I was "okay" day 1-3 with flu like feeling no great nausea or vomiting, the acute phase. But the delayed phase from day 4 was treacherous. I thought side effects would not continue with the supposed wash out of the chemicals after 2 to 3 days. Not so. Got thrush in my mouth, my throat swelled and I lost my voice, rash like mosquito bites all over my shoulders, chest, back, head. Terrible nausea and vomiting broke through on day 4 and it took 8 hours to get that under control and then I was on protein liquids only for nearly 5 days and lost 5 lbs, felt wobbly and my gait was off, floaters in my eyes, ringing in my ears, moody and weepy, felt like my limbs were encased in buckets of concrete with fatigue that set in. I was no sooner feeling better by day 14 then it was 5 days to countdown for treatment #2. I called the oncologist to switch to carboplatin, an alternative that supposedly doesn't do kidney damage with less nausea effects, so I read on the Internet, by way but I don't know. She advised me to meet her halfway and she would reduce the drugs instead, to hang in there with the cisplatin she thought was the better choice so I compromised. I am on day 3 out from round 2, and okay, so I will let you know how the rest fares. . It does feel like it is not so bad this time. I never wanted this chemo, but I was on the fence between stage 1 and 2 and accepted it for "insurance." I will look into Tagrisso, thank you for that info. My biomarkers state that I am not a good candidate for immunotherapy if that is what it is. But the oncologist says I still might want to do immunotherapy for a year because it just might help. I don't know about much of that at this point in my treatment yet. I did ask about my BUN and eGFR values after the first treatment and they were good to go. Thank you for that advice. I was afraid of long term effects I learned as I researched too about hearing loss, nerve damage and so on, so I said no to the chemo at first. So, I sat with the uncomfortable prospects for days until it came to me that as long as I can move my hand to write and paint, my quality of life would be acceptable if I lost some hearing and my nerves were damaged, but supposedly should come back at a pathetically slow rate as in years, especially with exercise and strength training. That is the hardest thing to do--in South Texas it is finally cooling off and to will myself off the couch takes a tremendous amount of self parenting myself! Thank you for your response. Made my day when I finally got to the computer here for support. I'm sorry if I overshared too many of the side effects, don't want to be negative, but it was brutal but it was doable. My spouse was there and my oncologist responded with all sorts of quick fixes for the thrush and so on. And yay for those who handled the side effects better than me. I'm not the young, fit chick I used to be! Again, many thanks for responding. __Burdyblue
Hi @burdyblue, I thought I'd check in to see how you're doing. I think you are wise to journal your ups and downs the days/weeks after a chemo treatment so that you can prepare for the next round. That can help you to know when you'll have energy and when you'll want to have others take on caring for you. If you know those tough days are coming, be kind to yourself and let people care. I'm sure they want to help. Maybe they even would like to know how they can help. Some people are at a loss. Let them know you'd like them to do a load of laundry and how you like it done. You can still have sense of control in a constructive way, right?
You might appreciate this related discussion:
- What the heck? I don't like my situation. Mood swings during chemo
https://connect.mayoclinic.org/discussion/what-the-heck-i-dont-like-my-situation/
How are you doing today? Where are you in the treatment cycle?
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3 ReactionsHello burdyblue,
FYI, I was also scheduled for 4 rounds of chemotherapy however the kidney toxicity issues cropped up and my oncologist decided that the 4th round would only cause additional kidney problems. Make sure they are paying close attention to your BUN and eGFR blood values prior to each treatment to make sure they are not getting too elevated.
Good luck on the rest of your infusion treatments and then, presumably, your oral treatments with Tagrisso.
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
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.
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4 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!!
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2 ReactionsDear 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.
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