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.
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.
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.
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.
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.
I'm sorry to hear about both your husband's experience as well as his death. I'm getting ready to start Keytruda also and I'm having concerns about possible side effects as well. I understand that some people tolerate it and others don't, and there's no way of knowing what to expect from it in advance. How many treatments did your husband have before he developed pancreatitis and how long did it take him to recover from it? Also, did he not have health insurance, which meant he had to pay such a large sum out of pocket? I've read that Merck will often help supplement the cost.
Hi dougmck,
My husband had three treatments of Keytruda but he started having symptoms from the first. It took him about 7 months to completely recover from Pancreatitis. He refused any further Keytruda treatments and prior to this he refused anymore chemotherapy treatments also because he was too sick from them. He was only supposed to live 5 years when he was first diagnosed. However, he lived 14 years thanks to a lot of prayers, good food including good quality red meat and a quiet life style; staying away from crowds. I would suggest doing a lot of research before you get the treatments. That way you can make a decision that fits you. The Mayo Clinic is a good place to start and just do a search on Google for "Keytruda side effects". It will give you a lot of places to research. Keytruda is also known as Pembrolizumab. You may see that in your research.
My husband had very good health insurance through his union. We didn't have to pay anything past the co-pay which was rather minimal. However, at $25,000 per infusion which are twice a month, how long is the insurance going to meet this cost with the number of cancer patients increasing? That medication can't cost the medical community that much.
I wish you the best. I will say a prayer for you.
PML
Thanks so much for your reply. I am very sorry for your loss, but I’m glad you and he had 14 years with no treatments. I hope my husband will continue to manage his treatments so that he reaches the magic 5 year mark. It’s not even been 1 full year yet and he’s/we’ve been through so much.
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
Hi abob,
My husband had three doses but he was having bad symptoms from the beginning. Keytruda was a new expensive drug at that time so the doctors were pushing it. We trusted their recommendations but my husband regretted it when he became so sick and almost died. He got down to 120 lbs. and couldn't hardly eat anything! Plus he felt terrible. It was awful! But getting to the right specialist and getting correct medication for Pancreatitis and lots of prayers, he recovered.
When my husband was diagnosed with lung cancer, he was only expected to live 5 years. However, he lived 14 years thanks to a lot of prayers, good food including good quality red meat and a quiet life style; staying away from crowds. Also he did not have chemotherapy or Keytruda.
I'll say a prayer for your husband. I hope he does well.
PML
Thanks so much for your reply. I am very sorry for your loss, but I’m glad you and he had 14 years with no treatments. I hope my husband will continue to manage his treatments so that he reaches the magic 5 year mark. It’s not even been 1 full year yet and he’s/we’ve been through so much.
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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.
Thank you for your help.
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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.
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1 ReactionThank you for the kind words! You made my day very special! Peace and Love to you also.
PML
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3 ReactionsThank 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.
-
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Helpful -
Hug
2 ReactionsThanks 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.
@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?
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1 ReactionThanks 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 dougmck,
My husband had three treatments of Keytruda but he started having symptoms from the first. It took him about 7 months to completely recover from Pancreatitis. He refused any further Keytruda treatments and prior to this he refused anymore chemotherapy treatments also because he was too sick from them. He was only supposed to live 5 years when he was first diagnosed. However, he lived 14 years thanks to a lot of prayers, good food including good quality red meat and a quiet life style; staying away from crowds. I would suggest doing a lot of research before you get the treatments. That way you can make a decision that fits you. The Mayo Clinic is a good place to start and just do a search on Google for "Keytruda side effects". It will give you a lot of places to research. Keytruda is also known as Pembrolizumab. You may see that in your research.
My husband had very good health insurance through his union. We didn't have to pay anything past the co-pay which was rather minimal. However, at $25,000 per infusion which are twice a month, how long is the insurance going to meet this cost with the number of cancer patients increasing? That medication can't cost the medical community that much.
I wish you the best. I will say a prayer for you.
PML
-
Like -
Helpful -
Hug
3 ReactionsHi 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
-
Like -
Helpful -
Hug
1 ReactionThanks so much for your reply. I am very sorry for your loss, but I’m glad you and he had 14 years with no treatments. I hope my husband will continue to manage his treatments so that he reaches the magic 5 year mark. It’s not even been 1 full year yet and he’s/we’ve been through so much.
-
Like -
Helpful -
Hug
1 Reaction