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. Yes I found it confusing when my oncologist said the same to me. Eat what ever I want that I can tolerate when I was on chemo. SG was spot on, I agree. A friend reminded me to eat and drink not for enjoyment but for survival when going through the down days of chemo. Keep up the fight and hard as it is, stay positive. Think of pleasantries and revisit happy moments. God is with you.
I am currently on Keytruda once every 3 weeks also. I started August 13th. I found the day I receive it and the next day I feel fantastic but on day three and four I'm fatigued and this does last from 3 to 5 days. But other than that I have had really nothing else. Good luck to you hope it's going well.
@lls8000 jumping back in about the biomarker blood tests. Do you have your results yet? They can zero in a specific drug to fight the beast if you’re lucky. Mine, not so much. No FDA approved therapy so far so Keytruda to fight mNSCLC or what’s left of it in C3 neck and liver lesions post chemo. Hopefully you get good news as well. The side effects of Keytruda are cumulative so I’m cautiously optimistic for you as well. Keep the faith DgA
@lls8000 jumping back in about the biomarker blood tests. Do you have your results yet? They can zero in a specific drug to fight the beast if you’re lucky. Mine, not so much. No FDA approved therapy so far so Keytruda to fight mNSCLC or what’s left of it in C3 neck and liver lesions post chemo. Hopefully you get good news as well. The side effects of Keytruda are cumulative so I’m cautiously optimistic for you as well. Keep the faith DgA
I completed (5) rounds of radiation and (4) rounds of chemo which finished up 9/30. I’m now starting Keytruda 400 immunotherapy every 6 weeks for the foreseeable future to further reduce remaining tumors. The Keytruda has been part of the chemo cocktail since 7/29 and following each treatment I have gi 🤢issues for 3-4days but it’s worth it. My Pet scan of 10/20 showed (8) of (10) tumors have reduced to < 6mm in size from >2.7cm SUV 6.2. I’ll take a few days of discomfort for those kinda results.
Hello @cglover47 , It's so frustrating when there's not enough tissue. That's happened to me before too. Then we went to a blood biopsy to get wat we needed.
Are you still waiting on the signatera results? How are you feeling after the Keytruda treatment?
The Signatera results are expected in 1-2 weeks. First submission didn’t include enough tissue. Decided to go ahead with the first Keytruda treatment this coming Tuesday. Went over all the aftereffects w/PA. I have a PEACE about going forward. Ty
Hello @cglover47 , It's so frustrating when there's not enough tissue. That's happened to me before too. Then we went to a blood biopsy to get wat we needed.
Are you still waiting on the signatera results? How are you feeling after the Keytruda treatment?
My husband has had 24 treatments - 1.5 yrs, Scans have been negative. Just started having Keytruda caused ailments. We think next Keytruda will be his last,
I’ve had 8 treatments so far and I’ve been blessed with no side effects. I’m scheduled for 4 more treatments. I must say after 4 treatments, one half of one of my lesions disappeared.
Good luck to you.
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Hello @burdyblue. Yes I found it confusing when my oncologist said the same to me. Eat what ever I want that I can tolerate when I was on chemo. SG was spot on, I agree. A friend reminded me to eat and drink not for enjoyment but for survival when going through the down days of chemo. Keep up the fight and hard as it is, stay positive. Think of pleasantries and revisit happy moments. God is with you.
Will take the second Keytruda treatment today. So far, side effects have been minor itching, some fatigue. I too am on the 3 week cycle of treatment.
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2 ReactionsI am currently on Keytruda once every 3 weeks also. I started August 13th. I found the day I receive it and the next day I feel fantastic but on day three and four I'm fatigued and this does last from 3 to 5 days. But other than that I have had really nothing else. Good luck to you hope it's going well.
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1 ReactionHi @dave56pa , I think you meant this reply for @cglover47. Checking on the biomarker results.
I do have one of the mutations that are treatable with a targeted therapy. (ALK positive, taking alectinib for five years)
@lls8000 jumping back in about the biomarker blood tests. Do you have your results yet? They can zero in a specific drug to fight the beast if you’re lucky. Mine, not so much. No FDA approved therapy so far so Keytruda to fight mNSCLC or what’s left of it in C3 neck and liver lesions post chemo. Hopefully you get good news as well. The side effects of Keytruda are cumulative so I’m cautiously optimistic for you as well. Keep the faith DgA
I completed (5) rounds of radiation and (4) rounds of chemo which finished up 9/30. I’m now starting Keytruda 400 immunotherapy every 6 weeks for the foreseeable future to further reduce remaining tumors. The Keytruda has been part of the chemo cocktail since 7/29 and following each treatment I have gi 🤢issues for 3-4days but it’s worth it. My Pet scan of 10/20 showed (8) of (10) tumors have reduced to < 6mm in size from >2.7cm SUV 6.2. I’ll take a few days of discomfort for those kinda results.
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3 Reactions@lls8000
Feeling very well following the first Keytruda treatment. No real issue side effects.
Still waiting on the Signatera test results. Ty
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1 ReactionHello @cglover47 , It's so frustrating when there's not enough tissue. That's happened to me before too. Then we went to a blood biopsy to get wat we needed.
Are you still waiting on the signatera results? How are you feeling after the Keytruda treatment?
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Helpful -
Hug
2 ReactionsMy husband has had 24 treatments - 1.5 yrs, Scans have been negative. Just started having Keytruda caused ailments. We think next Keytruda will be his last,
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Helpful -
Hug
2 ReactionsI’ve had 8 treatments so far and I’ve been blessed with no side effects. I’m scheduled for 4 more treatments. I must say after 4 treatments, one half of one of my lesions disappeared.
Good luck to you.
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2 Reactions