Immunotherapy and chemo; Keytruda side effects

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.

Hi @ina3, It must be a challenge to help care for your dad long distance. I assume he lives out of the country.

I'm tagging fellow members @reibur1951 and @lighthouse68 who have some experience with immunotherapy and lung cancer and may be able to give you some insights on what to expect and their experiences with side effects.

Giving chemo every 3 weeks is not uncommon. During that 3 week period side effects will come and go. There will likely be days that are better than others. The care team will ask questions about the side effects every visit. It can help to keep a log of the side effects in case they have to adjust the dosage or the schedule. I used these worksheets from the American Cancer Society to track my dad's side effects while on treatment for colorectal cancer. Having a list of medications was useful more than once when meeting with various members of the cancer team too. You can download them here: https://www.cancer.org/treatment/treatments-and-side-effects/tools-to-monitor-treatment.html

Does your dad live alone?

REPLY

Hi Ina;
Welcome to Connect Lung Cancer. I admire you for so lovingly wanting to help your father. I have been to your part of the world and the people are
wonderful, kind and brilliant.
I am a 10 year 10 month lung cancer survivor. Mayo Clinic "Saved my Life" even though I lost most all of my left lung and the 3cm tumor that was Non Small Cell lung cancer.
January 2018 one of the leading Lung Cancer Oncologist held up a research paper and said, "We now have 1,100 therapies for lung cancer, that were
not available in 2008 when I was diagnosed!" I have met many people of all ages, from 3 years of age to 93 years of age who are alive with lung cancer.
Doctors are learning how smart lung cancer is, and they are also learning how to properly administer treatments to fight the lung cancer and give people a good quality of life. But it does take hard work and a lot of support and love.

I encourage you to look up "Happiness" a book by Dr Amit Sood and think about "Paced Breathing" to help your father better deal with the lung cancer. This Mindfulness program changed my life and truly helped me get through the scary side of lung cancer. I went from barely being able to walk with one lung to running races. It has taken a lot of hard work and a lot of time…but the rewards mentally, physically and spiritually have been well worth the effort and the goals. I am 69 and just ran my first 10 mile race and finished 6th out of 10 with other women in my age group and the only one with one lung! I even ran faster than kids younger than me! HA!

I commend you for your brave outreach! You both will get through this. I often tell people, Lung Cancer became my blessing because it made me learn so much more about life…more than I ever imagined. I now truly live and enjoy one day at a time…I never smoked and I learned lung cancer is any body's disease. Take care of you, too. Let's stay connected, ok? I'm sending silent blessings to you both.

REPLY
@colleenyoung

Hi @ina3, It must be a challenge to help care for your dad long distance. I assume he lives out of the country.

I'm tagging fellow members @reibur1951 and @lighthouse68 who have some experience with immunotherapy and lung cancer and may be able to give you some insights on what to expect and their experiences with side effects.

Giving chemo every 3 weeks is not uncommon. During that 3 week period side effects will come and go. There will likely be days that are better than others. The care team will ask questions about the side effects every visit. It can help to keep a log of the side effects in case they have to adjust the dosage or the schedule. I used these worksheets from the American Cancer Society to track my dad's side effects while on treatment for colorectal cancer. Having a list of medications was useful more than once when meeting with various members of the cancer team too. You can download them here: https://www.cancer.org/treatment/treatments-and-side-effects/tools-to-monitor-treatment.html

Does your dad live alone?

Jump to this post

Thank you @colleenyoung for your response. No, my mom is with him, what I worry mostly is that this area is not that much advanced there and want to make sure that doctors dont miss anything and I am trying to provide as much information from here as I can. Thanks again.

Liked by alamogal635

REPLY
@llwortman

Hi Ina;
Welcome to Connect Lung Cancer. I admire you for so lovingly wanting to help your father. I have been to your part of the world and the people are
wonderful, kind and brilliant.
I am a 10 year 10 month lung cancer survivor. Mayo Clinic "Saved my Life" even though I lost most all of my left lung and the 3cm tumor that was Non Small Cell lung cancer.
January 2018 one of the leading Lung Cancer Oncologist held up a research paper and said, "We now have 1,100 therapies for lung cancer, that were
not available in 2008 when I was diagnosed!" I have met many people of all ages, from 3 years of age to 93 years of age who are alive with lung cancer.
Doctors are learning how smart lung cancer is, and they are also learning how to properly administer treatments to fight the lung cancer and give people a good quality of life. But it does take hard work and a lot of support and love.

I encourage you to look up "Happiness" a book by Dr Amit Sood and think about "Paced Breathing" to help your father better deal with the lung cancer. This Mindfulness program changed my life and truly helped me get through the scary side of lung cancer. I went from barely being able to walk with one lung to running races. It has taken a lot of hard work and a lot of time…but the rewards mentally, physically and spiritually have been well worth the effort and the goals. I am 69 and just ran my first 10 mile race and finished 6th out of 10 with other women in my age group and the only one with one lung! I even ran faster than kids younger than me! HA!

I commend you for your brave outreach! You both will get through this. I often tell people, Lung Cancer became my blessing because it made me learn so much more about life…more than I ever imagined. I now truly live and enjoy one day at a time…I never smoked and I learned lung cancer is any body's disease. Take care of you, too. Let's stay connected, ok? I'm sending silent blessings to you both.

Jump to this post

Hi Linda, @llwortman . Firts of all congratulations, your story is trully inspiring. Thanks for sharing. I wish people like you came in our part of the country and inspired people. It takes soo much courage to go through everything and now running a race. 😄 our society needs examples like that. I am trying to be the coach for my dad and mom too so that they go through this and i have a big hope that everything will be ok. 😄 My dad never smoked, even guests coming in our house were not allowed to smoke, and don't even remember him being sick. So, it’s like a big shock for all of us. Thank you again for your nice words and if I have questions, now I know where to find answers.

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Hi, i have been reading the reviews on KEYTRUDA and some of the stories are scary. People say that it made their lives worse or shortened the life. It is hard to say whether it trully works , i see very mixed reviews and scared. My dad has lung cancer IV stage but his symptoms are not that bad now. If he starts the treatment with KEYTRUDA , i dont want his situation to deteriorate. Is there any other immunotherapy medicine that is better? Can anyone share experience please. Thanks.

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Hi everyone,

Wanted to find out if anyone has experienced hyperthyroidism as an side effect for chemo or immunotherapy , Keytruda specifically.

What happens during this time? Shall we stop immunotherapy and treat for that or my dad can continue chemo/immuno and treat for hyperthyroidism too?

Thanks

Ina

REPLY
@ina3

Hi everyone,

Wanted to find out if anyone has experienced hyperthyroidism as an side effect for chemo or immunotherapy , Keytruda specifically.

What happens during this time? Shall we stop immunotherapy and treat for that or my dad can continue chemo/immuno and treat for hyperthyroidism too?

Thanks

Ina

Jump to this post

Hi, @ina3 – I've merged your post asking about a connection between hyperthyroidism and chemotherapy or immunotherapy – pembrolizumab (Keytruda) specifically – with this discussion in which you've participated previously, so you can follow up with them on these developments with your dad and get their input, including how treatment for hyperthyroidism would play into the chemo/immuno regimen.

I'd invite @llwortman to return to offer her insights, and I'd also like to invite @merpreb @lady1lake @pc2018 to participate in this conversation.

What has your oncologist advised related to treatment for hyperthyroidism and how that would interact with chemo/immunotherapy?

REPLY
@colleenyoung

Hi @ina3, It must be a challenge to help care for your dad long distance. I assume he lives out of the country.

I'm tagging fellow members @reibur1951 and @lighthouse68 who have some experience with immunotherapy and lung cancer and may be able to give you some insights on what to expect and their experiences with side effects.

Giving chemo every 3 weeks is not uncommon. During that 3 week period side effects will come and go. There will likely be days that are better than others. The care team will ask questions about the side effects every visit. It can help to keep a log of the side effects in case they have to adjust the dosage or the schedule. I used these worksheets from the American Cancer Society to track my dad's side effects while on treatment for colorectal cancer. Having a list of medications was useful more than once when meeting with various members of the cancer team too. You can download them here: https://www.cancer.org/treatment/treatments-and-side-effects/tools-to-monitor-treatment.html

Does your dad live alone?

Jump to this post

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

REPLY
@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

Jump to this post

@shortshot80 Hello Nancy

I just noticed your Dec. 16 post. It is so good to hear from you. I was getting concerned. How wonderful that your latest scan showed no new growths. That was a great Christmas present as well. I suppose you are now enjoying your new carpet, does it look as nice as you had hoped?

Congratulations on looking forward to becoming a great-great-grandma. That is something to look forward to.

I hope your weather has settled down on the coast. There has been some difficult weather for you west coast folks. Are you still experiencing rain or has that slowed down now?

I look forward to hearing from you again soon!

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I am on those also and so far no side effects. My 6th treatment is next week. I just hope it is working

REPLY
@colleenyoung

Hi @ina3, It must be a challenge to help care for your dad long distance. I assume he lives out of the country.

I'm tagging fellow members @reibur1951 and @lighthouse68 who have some experience with immunotherapy and lung cancer and may be able to give you some insights on what to expect and their experiences with side effects.

Giving chemo every 3 weeks is not uncommon. During that 3 week period side effects will come and go. There will likely be days that are better than others. The care team will ask questions about the side effects every visit. It can help to keep a log of the side effects in case they have to adjust the dosage or the schedule. I used these worksheets from the American Cancer Society to track my dad's side effects while on treatment for colorectal cancer. Having a list of medications was useful more than once when meeting with various members of the cancer team too. You can download them here: https://www.cancer.org/treatment/treatments-and-side-effects/tools-to-monitor-treatment.html

Does your dad live alone?

Jump to this post

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

REPLY
@lisalucier

Hi, @ina3 – I've merged your post asking about a connection between hyperthyroidism and chemotherapy or immunotherapy – pembrolizumab (Keytruda) specifically – with this discussion in which you've participated previously, so you can follow up with them on these developments with your dad and get their input, including how treatment for hyperthyroidism would play into the chemo/immuno regimen.

I'd invite @llwortman to return to offer her insights, and I'd also like to invite @merpreb @lady1lake @pc2018 to participate in this conversation.

What has your oncologist advised related to treatment for hyperthyroidism and how that would interact with chemo/immunotherapy?

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

Liked by alamogal635

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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?

Jump to this post

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

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