Going Beyond Standard Immunotherapy

Posted by ta52 @ta52, Dec 9, 2020

In my doctor's consult yesterday I was told that because I was tolerating the infusions so well with little or no side effects they want to go beyond the standard four infusions and continue with a Keytruda/Alimta "cocktail". Is this normal? Has anyone else been through this and what were the results?

@miriam57

Thank you for sharing this information. Keytruda has been brought to me as an option. My question, if two years is the limit, what happens after that?

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Mine is for recurrent endometrial cancer.

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@dutchw

Good morning Miriam. Thank you for the valuable information. Wow, 23 years, that’s impressive. You undoubtedly are a fighter and an inspiration to us. I’m going to press my Dr to buck the current 2 year limit and try a maintenance protocol. We’ll see what happens. A PET scan in Dec. showed a small hot spot, 1/2 inch size, in my good lung and radiation cleaned it up. I am now cancer free and remaining on immunotherapy/Keytruda 400cc every 6 weeks until June. Keep up the good work.

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It was Merry, not me Miriam…. but I am hoping. I like the questions and info about the drug. I am interested in the treatment for Endometrial cancer.

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@richcolleen

Colleen, my husbands name was Rich, keytruda has kept tumor in check. Never disappeared but shrunk. Nodules in kidneys disappear last scan Dec 18. More cells in both lungs this last scan but very small. When I was on 3 other types of chemo was sick 10 days out of the 21 days. So quite last October and doing fairly well even with the pandemic. My biggest problem is I’m oxycodone which means NO driving. Used to coming and going whenever I wanted to since husband died 4 years ago. Cancer came 1 1/2 years ago. Must say the Lords been good to me.

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Sorry for your loss Colleen. I’m sure Chemo works for some people but like you the side effects weren’t worth it to me. I was prescribed oxycodone once but didn’t like the side effects so just use Tylenol. Are you very short of breath? I’m having a heck of a time breathing with even moderate exercise, Dr says it’s because I also have COPD but I wasn’t that short of breath prior to the lung cancer.

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@dutchw

Sorry for your loss Colleen. I’m sure Chemo works for some people but like you the side effects weren’t worth it to me. I was prescribed oxycodone once but didn’t like the side effects so just use Tylenol. Are you very short of breath? I’m having a heck of a time breathing with even moderate exercise, Dr says it’s because I also have COPD but I wasn’t that short of breath prior to the lung cancer.

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@dutchw– One of the side effects of lung cancer is shortness of breath! Did you have any lesions in your lung? If so, how were they removed? Or are they still there?

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Thanks Merry, that explains a lot. I’m not sure what you mean by lesions. I had a large tumor in my right lung the thoracic surgeon said was to large for removal, she wouldn’t do any surgery. I had the 3 rounds of chemo, went on immunotherapy/Keytruda, No, it’s not there anymore, completely gone as well as in the lymph nodes, spine and head. As I mentioned in my original post, I am also using an alternative protocol that may not be appropriate to name on this sight.

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@dutchw

Thanks Merry, that explains a lot. I’m not sure what you mean by lesions. I had a large tumor in my right lung the thoracic surgeon said was to large for removal, she wouldn’t do any surgery. I had the 3 rounds of chemo, went on immunotherapy/Keytruda, No, it’s not there anymore, completely gone as well as in the lymph nodes, spine and head. As I mentioned in my original post, I am also using an alternative protocol that may not be appropriate to name on this sight.

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Good morning @dutchw– A region in an organ or tissue which has suffered damage through injury or disease, such as a wound, ulcer, abscess, or tumor is a lesion. I should have asked if you had had any tumors. My apologies.

That's just incredible that Keytruda worked this well for you.

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@merpreb

Good morning @dutchw– A region in an organ or tissue which has suffered damage through injury or disease, such as a wound, ulcer, abscess, or tumor is a lesion. I should have asked if you had had any tumors. My apologies.

That's just incredible that Keytruda worked this well for you.

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Good morning Merry. Okay, got it.. At my age I learn one new thing every day and forget five. Keytruda is a blessing, especially with other medical issues I have, Giant Cell Arteritis, that could have negated immunotherapy completely. My rheumatologist and oncologist worked so well together, they are awesome and they are the reason I am here today. I have yet to tell them of the alternative treatment I am using with Keytruda but once I do I will post it on here if that is not prohibited.

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@dutchw

Good morning Merry. Okay, got it.. At my age I learn one new thing every day and forget five. Keytruda is a blessing, especially with other medical issues I have, Giant Cell Arteritis, that could have negated immunotherapy completely. My rheumatologist and oncologist worked so well together, they are awesome and they are the reason I am here today. I have yet to tell them of the alternative treatment I am using with Keytruda but once I do I will post it on here if that is not prohibited.

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@dutchw I am so happy to hear Keytruda has worked for you with an amazing result! I hope you can still continue this treatment and that you continue to see improvement every day. I was wondering in your experience if at first or at any time you had any side effects with it? My dad was diagnosed with stage 4 NSCLC adenocarcinoma in June and went from Carboplatin + Keytruda + Pemetrexed, where he experienced minimal side effects, to now Keytruda + Pemetrexed. He has always been healthy in a diet rich in vegetables and a non smoker his whole life. But the first few treatments of just Keytruda + Pemetrexed have made him lethargic, rounds of fevers, chills, increased coughing and swollen joints which is hard because he is used to being at minimum moderately active. He’s now considering another chemo (Docetaxl) instead of Keytruda based on the side effects but worried maybe he is stopping Keytruda too soon. If relevant, with the bio marker test he tested at 30% for it which was why Keytruda was recommended by his oncologist.

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Thank you for the kind words. Compared with the horrible side effects I experienced with chemo, Keytruda is a cake walk. I haven’t had Pemetrexed so can’t comment on that. What I have been on is just Keytruda with Zameta added every other treatment to maintain bone strength. I do experienced fatigue, a slight dry cough, shortness of breath and joint pain, no chills or fever, and am told those are some of the normal Keytruda side effects, still nothing of consequence in comparison with the chemo. My oncologist put me on Gabapentin 300mg for joint pain and it has worked well with no added side effects. Hope this helped in some way. My prayers are your Dad continues to get healthy and Never Give Up.

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@rkschaef

@dutchw I am so happy to hear Keytruda has worked for you with an amazing result! I hope you can still continue this treatment and that you continue to see improvement every day. I was wondering in your experience if at first or at any time you had any side effects with it? My dad was diagnosed with stage 4 NSCLC adenocarcinoma in June and went from Carboplatin + Keytruda + Pemetrexed, where he experienced minimal side effects, to now Keytruda + Pemetrexed. He has always been healthy in a diet rich in vegetables and a non smoker his whole life. But the first few treatments of just Keytruda + Pemetrexed have made him lethargic, rounds of fevers, chills, increased coughing and swollen joints which is hard because he is used to being at minimum moderately active. He’s now considering another chemo (Docetaxl) instead of Keytruda based on the side effects but worried maybe he is stopping Keytruda too soon. If relevant, with the bio marker test he tested at 30% for it which was why Keytruda was recommended by his oncologist.

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@rkschaef– Medicine is a 2-edged sword. Sometimes it's easy with a clean cut and other times it's messy and doesn't sever completely. A lot of people seem to sail through chemo or immunology and others don't. I hope that your dad can find the right one. Immunology works by triggering your own immune system to fight your disease/cancer, but instead of fighting it it fights your whole body and damages tissues. Even with tests and statistics it's still a whack-a-mole! When will your dad make his decision?

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@merpreb

@rkschaef– Medicine is a 2-edged sword. Sometimes it's easy with a clean cut and other times it's messy and doesn't sever completely. A lot of people seem to sail through chemo or immunology and others don't. I hope that your dad can find the right one. Immunology works by triggering your own immune system to fight your disease/cancer, but instead of fighting it it fights your whole body and damages tissues. Even with tests and statistics it's still a whack-a-mole! When will your dad make his decision?

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Thank you @dutchw, I am happy that you didn't experience any of the harsher side effects. Thank you for the detail on Gabapentin as well – that is helpful! Thank you also for your prayers for my dad, both he and my family appreciate it!
@merpreb It truly is a whack-a-mole – couldn't have come up with a better reference! I am hoping he can find the right treatment as well, it seems as if it will be one of those "wait and see" type of outcomes for treatment at this point. He will make his decision in the upcoming week, so hoping that whichever he chooses will help in some way. Thank you!

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Hi @ta52! I like the others on this post have been diagnosed with stage IV lung cancer. It metastasized to my brain, lymph nodes, liver and bones. After having a molecular profile done we found that my PDL 1 levels were at 90% which made me a good candidate for Keytruda. I have been on it since January 2019. My oncologist said as long as it is working we our going to keep going down that path. All of my scans have been coming back good. I hope it keeps working so I don't have to start chemo. I pray daily that God heals my body and everyone else's that has cancer. Wishing you the very best.

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