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Starting immunotherapy Keytruda
Lung Cancer | Last Active: 1 day ago | Replies (27)Comment receiving replies
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!!
Replies to "Hello Burdyblue.........regarding the start of your chemotherapy journey.....it is definitely not for the faint of heart...."
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?
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
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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