Immunotherapy: Keytruda (pembrolizumab)

Posted by ina3 @ina3, Oct 30, 2018

Hi,

My name is Ina and i am writing on behalf of my dad who was diagnosed with lung cancer- adenocarcinoma 3 months ago.

I live in Washington DC and my dad lives in country Georgia.

Since I joined this forum, I learnt so many things, reading some of the stories gave me hope and I hope that I will be able share the story about my dad with positive results soon.

Since I cannot bring my dad here in the USA, I am trying to get a second opinion on the treatment that he was given. I would appreciate very much if you give me some information and advice.

After the genetics test we were told that
ROS-1, ALK were negatives but PDL1 expression is positive and MSI-is High. These results means that they can not use targeted therapy but they can use immunotherapy with chemotherapy;
Doctors advised Pembrolizumab(keytruda) 200mg+ karboplatin+ pemetrexet /ever 3 weeeks
And with pemetrexet, we mus take folic acid vitamin and B12

The treatment will be repeated every 3 weeeks and untıl 6 th cycle.

I am interested in side effect too. For how long the side effects last usually? I worry that with both Chemo and Immunotherapy every 3 weeks he wont get a break practically and the side effect being severe.

Thank you again.

@birdsforever

Hello. I am new here. Diagnosed with Nodular Melanoma in Mar of 2017. Metastasized in Dec of 2018. Started Keytruda Jan of 2019. Have had 5 treatments 3 weeks apart. This last blood test showed my thyroid has gone wacky. I am pretty tired but plan to keep going. 4 lesions in the lung, largest at 13mm, and 1 in the bowel. If all goes well in will be on this for 2yrs. First scan to see if it is working will be Apr 17 2019. Very interested in THC/CBD oils. Mixed reviews online. Any input would be great. Sending positive thoughts to everyone.

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birdsforever -go on inspire.com the the lung cancer group. You will find articles regarding the use of THC/CBD oils. As wonderful as they can be for cancer patients, not so with patients on immunotherapy. You will also find many patients who had their thyroid wiped out.

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Thank you! I will do that. Was the thyroid wiped out from the Keytruda?

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@birdsforever

Thank you! I will do that. Was the thyroid wiped out from the Keytruda?

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Yes, there are a few Keytruda threads on there. I have been on Opdivo since Sept 2015!!!

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Oh wow. I'm so happy its working.

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@shortshot80

Nancy Bush/ shortshot0 Hi Colleen and Teresa) Howdy ladies, I'm finally back. It has been a while. I had immune therapy in March, April, May, and then went through a tough time with pain in all my joints. Doc told me that sometimes the immune therapy will do that, so have been on Prednisone off and on for several months. I have been trying to cut it down, then I start the pain again. Am on some sort of a merry go round for several months. . For the past couple of years that I've been going to the doc, they have put on a Christmas buffett with all kinds fo cold cuts, cheese's, crackers, hot chicken wings of two or three flavors, veggies, cookies, candy, punch, some "booze" if you want, just a great spread for patients and family. Very nice and much appreciated. Everyone had a great time visiting. Saw my doctor before lunch and my cat scan show no new growth, which is a good thing, and am trying again to cut the Prednisone down, however much slower this time. So it will work, just going to take some more time. I am feeling good, looking good and gaining more strength each week. I still do all my own clothes washing, folding etc, dishes and as much other things that I can get done daily. Have been working on my book, hopefully some time soon I can get it to the printers. I did have some news the other day. July I will be a "great great grandma! Wow, doesn't seem possible that could be, but I will spoil what ever kind I get! Doesn't seem possible that it has been seven months since my hubby died. Yes it does get lonely at times but it is better that it was. I have purchased my Christmas present which will be installed tomorrow. I have a new carpet for the living room. I am excited to have It installed tomorrow. It has been over 22 years since the last one. Something new always makes you feel great and also cheers up the home. I will be seeing the doctor again in about three weeks, then will see what the plan is going to be for me. Ladies, I'm so glad to be back here and join the conversation's, seems like forever since I was in here. Thank you Colleen for all the help, information to be back.
We have been having some wild storms here on the coast of Oregon, 60 mph winds, and lots of rain. Supposed to keep us wet for the next week or so. Have a great day everybody, I will be back in here soon. Nancy

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Hello @shortshot80 Nancy,

It has been a while since you last posted. I hope you are still doing well with your immunotherapy. I would love to hear from you again.

Will you post sometime soon?

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@ina3

Dear Colleen,

I wanted to ask you if you know how long it takes for Keytruda to start working? My dad just did PET and doctors told that there are new metastasis. He only did Keytruda twice and doing a third one in two days. My question is would two times Keytruda be enough to say whether it worked or did not work? It costs so much and wondering how much more chance we should give. Thanks

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@ina3, I unfortunately am unable to answer your question about how long do you know before Keytruda treatment is working. That is definitely a good question to ask your dad's oncologist.

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@birdsforever

Hello. I am new here. Diagnosed with Nodular Melanoma in Mar of 2017. Metastasized in Dec of 2018. Started Keytruda Jan of 2019. Have had 5 treatments 3 weeks apart. This last blood test showed my thyroid has gone wacky. I am pretty tired but plan to keep going. 4 lesions in the lung, largest at 13mm, and 1 in the bowel. If all goes well in will be on this for 2yrs. First scan to see if it is working will be Apr 17 2019. Very interested in THC/CBD oils. Mixed reviews online. Any input would be great. Sending positive thoughts to everyone.

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@birdsforever, welcome to Connect. As @seaspray mentions Keytruda and CBD/THC is not a good mixture. CBD oil interferes with immunotherapy. You can find members talking about it here:

– Pembrolizumab (Keytruda), Cannabis and Cannabinoids https://connect.mayoclinic.org/discussion/nivolumabkeytruda-cannabis-and-cannabinoids/

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I am on same treatment! I get sick for 6-12 days after each treatment. I’ve had 8. Asked to take 3 weeks off as want to build up strength and feel good. Mayo Dr said others have done that. No idea what will happen to my tumor.

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@richcolleen

I am on same treatment! I get sick for 6-12 days after each treatment. I’ve had 8. Asked to take 3 weeks off as want to build up strength and feel good. Mayo Dr said others have done that. No idea what will happen to my tumor.

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@richcolleen have you lost your hair on Keytruda?

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It’s been almost five months. Thinning out but has not fallen out in chunks just has tined out in half with a little every day.

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I’ve been on same treatment same lung cancer but mine had spread. These treatments are giving me the best quality of life possible as I will not beat this. I’ve accepted it and living the best I can. I’m also on OxyContin which I take every 12 hours. The Mayo Clinic does scan every 3 months. My tumor was massive and 3 nodules. Tumor has shrunk in half and nodules have stayed the same. These treatments wear me out so right know I’m on 2 weeks rest (which means no treatments) feeling good and got energy back. The 23rd I will start my treatments again.

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@richcolleen

I’ve been on same treatment same lung cancer but mine had spread. These treatments are giving me the best quality of life possible as I will not beat this. I’ve accepted it and living the best I can. I’m also on OxyContin which I take every 12 hours. The Mayo Clinic does scan every 3 months. My tumor was massive and 3 nodules. Tumor has shrunk in half and nodules have stayed the same. These treatments wear me out so right know I’m on 2 weeks rest (which means no treatments) feeling good and got energy back. The 23rd I will start my treatments again.

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Hi @richcolleen, I thought you might appreciate knowing about this discussion in the Cancer group:
– Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

Enjoy your treatment vacation. Are you finding that with some of the returning energy, you’re able to do things that bring you joy? Want to share?

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