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Steff

Keytruda, 1 year later

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Hi all,

Since my other discussion thread was getting quite long and it's been 1 year since my mom started Keytruda, I decided to start a new thread here, where it might be better seen by those who are looking for information on immunotherapy.  

So, the 1 year update on my mom....she survived and lived to talk about it!!!  She got her CT results yesterday and it was all good news....area around the cancer is stable and may look better (inflammation-wise).  We have not been able to see the mass on the back of her trachea since October (2 months after beginning chemo + Keytruda).  It still could be there, but it is not causing any problems.  I don't know if the term NED will ever be used with her since we cannot get a perfect picture of where the mass was, so we are just using the term "stable".  So, for us, "stable" is great news!!!  There is a "shadow" that is showing up in her left lung that appeared out of nowhere.  Her pulmonologist thinks it is most likely some inflammation or infection - he will keep an eye on it, but is not alarmed by it.

Her shortness of breath still persists, she has 1 more heart test to do to see if that is the problem.  If it is not, we are to the point where we will likely accept shortness of breath as a new normal for her.  Luckily, her pulmonologist does not believe that Keytruda is the culprit, so we plan to stay on it as long as possible.

Keytruda side effects: severe itchy skin - it drives her crazy especially at night.  She currently takes Benedryl at night if itching is out of control and she has also found an Aveeno excema cream that relieves itching for a bit.  Although the itching is bothersome for her, she would rather deal with it than cancer.  Other side effect, but it is controlled by meds is her thyroid.  She had a slow thyroid to begin with. It got slower, she just increased her meds and it is now controlled - no big deal.  Docs keep an eye on it and increase/decrease thyroid med dose when needed.

This time last year, I felt hopeless.  My mom's lung cancer recurrence was a punch in the gut.  I was heart broken when we were told that due to the location of the mass, it could not be surgically removed, nor was it recommended for the first treatment attempt to use radiation (some of the mass was in the original radiation field from her previous bout of lung cancer).  So came the recommendation of Keytruda + Alimta/Carbo.  I was unhappy and scared of this new "immunotherapy stuff".  But this"immunotherapy stuff" is the best thing that has happened for my mom's lung cancer.  If you are a newcomer to lung cancer and/or immunotherapy, do know there is hope.  My mom has more hope now of surviving cancer than when she was originally diagnosed in 2015.  And it is all due to continued lung cancer research and development of new treatment options.  

My main take away from this last year is: 1) My mom is tough as nails, 2) Even in the darkness of a lung cancer diagnosis, there is hope.

Take care,

Steff

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This is wonderful, Steff! We're very happy for you and your mom! Thank you for sharing your experiences with this community.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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