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ina3
@ina3

Posts: 6
Joined: Oct 18, 2018

Immunotherapy and chemo; Keytruda side effects

Posted by @ina3, Tue, Oct 30 7:22pm

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.

REPLY

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?

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.

@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.

@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.

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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