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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?

Interested in more discussions like this? Go to the Lung Cancer group.

mrodriguezc | @mrodriguezc | Jan 21, 2021
In reply to @dutchw "I’m not sure this is the right place to post this but have to start somewhere...." + (show)
@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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dutchw | @dutchw | Jan 21, 2021
In reply to @schmeeckle64 "Hi @ta52! I like the others on this post have been diagnosed with stage IV lung..." + (show)
@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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1 reply
schmeeckle64 | @schmeeckle64 | Jan 21, 2021
In reply to @dutchw "Good news, makes me happy to hear success stories. Our prayers are for your continued good..." + (show)
@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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1 reply
dutchw | @dutchw | Jan 21, 2021
In reply to @schmeeckle64 "Thank you so very much. I love hearing success stories too, it just gives everyone hope...." + (show)
@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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richcolleen | @richcolleen | Jan 21, 2021

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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dutchw | @dutchw | Jan 21, 2021

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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1 reply
michaelw9dy | @michaelw9dy | Jan 23, 2021
In reply to @dutchw "Thanks for your quick response. For the past year we have been draining a pint of..." + (show)
@dutchw

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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I'm Hoping there will be replies to those oncologist patients taking vaccines. As I understand it's live vaccines that may not be approved. We have been told that all oncology patients need to be vaccinated for Covid 19/

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1 reply
richcolleen | @richcolleen | Jan 23, 2021

I received my first shot yesterday. Only a little sore were needle went in. Still early. Colleen

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richcolleen | @richcolleen | Jan 23, 2021

I was on 4 types of chemo and after 7 months went on keytruda and been on that over one year.

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1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jan 23, 2021
In reply to @richcolleen "I was on 4 types of chemo and after 7 months went on keytruda and been..." + (show)
@richcolleen

I was on 4 types of chemo and after 7 months went on keytruda and been on that over one year.

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Hi there, When will we play again? I am glad to see your name today. Don’t forget that if you need transportation, let me know. We just got the vaccine….shot #1. Hope you feel well.
Chris

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miriam57 | @miriam57 | Jan 23, 2021
In reply to @michaelw9dy "I'm Hoping there will be replies to those oncologist patients taking vaccines. As I understand it's..." + (show)
@michaelw9dy

I'm Hoping there will be replies to those oncologist patients taking vaccines. As I understand it's live vaccines that may not be approved. We have been told that all oncology patients need to be vaccinated for Covid 19/

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Hmmmm , I just checked, it is not a live virus in the shot.

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