Going Beyond Standard Immunotherapy

Posted by Tom Anderson @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?

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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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@dutchw

I’m not sure this is the right place to post this but have to start somewhere. To Merry, the young lady with lung cancer taking Keytruda. In June 2019 I was diagnosed with stage IV NSCLC, it was in my lymph nodes on my spine and a tumor in my head. The Oncologist looked my wife and I straight in the eyes and announced “you have 6 months, maybe a year, if your lucky”. I remember getting angry, “who do you think your talking too”? After 3 rounds of chemo, I told the Dr no more, the side effects made a complete invalid out of me. I wasn’t willing to live that way. We went on immunotherapy Keytruda after an MRI that showed very little, if any, improvement. Aug 2019 MRI showed a considerable shrinkage in the tumor. At that time I started a regiment of unprescribed medication in addition to Immunotherapy/Keytruda. Dec 2019 the lymph nodes were clear, the tumor had shrunk considerably. I continued this treatment and a PET scan in May 2020 showed I was cancer free, it was ALL gone. The Dr referred to me as a miracle. As of today I am still cancer free and intent staying on Keytruda as long as I can. I got the same 2 year limit on Keytruda but am going to challenge that. So, Merry, never give up, never. I was 79 years old when diagnosed, am now 81. I’ve learned prayers work. I sincerely hope this helps in some small way.

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Hola, fue la inmunoterapia la que le ayudo?

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@schmeeckle64

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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Good news, makes me happy to hear success stories. Our prayers are for your continued good health.

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@dutchw

Good news, makes me happy to hear success stories. Our prayers are for your continued good health.

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Thank you so very much. I love hearing success stories too, it just gives everyone hope. Prayers to you as well. You sound like a firecracker.

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@schmeeckle64

Thank you so very much. I love hearing success stories too, it just gives everyone hope. Prayers to you as well. You sound like a firecracker.

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Thank you.. I learned something new today. I recently completed a 14 day cycle of radiation for a small spot on my other/good lung. Upon inquiring when I could get a PET scan to see if it worked, I was told not for 4 months because the radiation continues to work for that long after the last treatment. Good news is I go back on the Keytruda 200mg every 3 weeks starting Feb 1. Question. Has anyone had an issue with fluid on the lungs and what was done?? I’m having a problem, getting drained every 3rd day, and can’t seem to get my questions answered. Never give up.

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I had a quart drain when first diagnosed with stage 4 lung cancer, nodules in kidneys and cells in stomach and left lung that was March 2019. Got inflammation and ended in St Mary’s hospital for 5 days. Never had to have lung drained again. Started on 4 types of chemo every 21 days. Quit 3 chemo’s after 9 months. (was sick throwing up 10 days after every treatment and refused that way of life).. Since than on keytruda every 21 days and so far do good. I’ve passed my death sentence. 🙏🏻🙏🏻 Are doing the trick. Tomorrow I get my COVID vac

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Thanks for your quick response. For the past year we have been draining a pint of fluid, 1/2 quart, off one lung every 3rd day. Have a catheter in the right lung. My wife is a retired RN so we drain it at home. I’m not going to let them do a procedure to close the space the fluid is accumulating until they tell me what is causing the fluid. That’s why I was inquiring here. It doesn’t hurt, just inconvenient. I don’t want to stick my nose into anyone’s business but my oncologist informed me more than once, while taking Keytruda/immunotherapy DO NOT take any vaccines. Has your Dr approved?? Stay safe.

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