Starting Keytruda this week

renegade80
renegade80 Member Posts: 4 Member
in Head and Neck Cancer #1

I have stageIV tonsil Cancer that has metastisized to my left lung. I was originnally diagnosed 2015 with tonsil cancer stage IV and recieved 7 weeks of radiation and 5 1/2 weeks of chemo. That took care of it in my tonsil then then 2yrs later it metastisized to my left lung and was removed with pinpoint radiation. A year later it came back in my lung. It is very slow growing and now I am starting immunotherapy with keytruda this week my PD-L1 was only 5% which is low. Has anyone had keytruda who had a low PD-L1 and if so how successful was it. 

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited April 2020 #2

    Even though I cannot personally tell you anything or I have not known anyone in your situation I did a search and here is a link to the search page which has lots of information on your situation---

    https://duckduckgo.com/?t=ffnt&q=keytruda+on+a+low+PD-L1&ia=web

    Hope this helps-Take care-God Bless

  • Alpinelife
    Alpinelife Member Posts: 12
    #3
    Keyturda

    Started Keytuda back in November 2019 for mets in my right upper lung. For me the mets consisted of one small node (SSC via biopsy) about 8mm. The plan was to treat as a primary and do radiation along with Keytuda knowing that mets from head/neck cancer was most likley.  Well, the radiation was no fun (Had 37 doses back in 2016 for tongue cancer) and had a nice dose of radiation rebound. The Keytruda infusions were not problematic (Felt good), but before my second infusion in December it was noted that my blood sugar was high.  Well, we went forward as my A1C was normal and all was well for a few days. I then took a flight to Florida to visit my sister, and the day before the flight I began to feel poorly. By the time I arrive in Florida I was having blurred vision and feel very poorly.  The next morning I was even worse. Went to a walk in and found my blood glucose was at 900!  Into the ER and after a few days -- as a type 1 diabetic caused by Keytruda.  

    Now, don't panic -- this is very very rare.  The other thing to note is that my cancer was being positively impacted by Keytuda before radiation (could tell from the radiation surveys for treatement).  Many people react well, inluding those with low PD-L1 -- mine was not very high as well.  

    Cancer sucks and you never know what will work and for how long.  My battle has been going on for 7 years.  Today I'm NED thanks to radication & Keytruda.  For how long, who knows. Life remains complcated, but good.  Best wishes and my hopes of success for you & your family.

  • renegade80
    renegade80 Member Posts: 4 Member
    edited June 2020 #4
    first scan after starting keytruda

    Had my first scan after my first 9 weeks of imunotherapy with keytruda. All my nodules have reduced in size by at least 50% some more. We are continueing treatment and luckily I am having no side effects.

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited June 2020 #5
    renegade80 said:

    first scan after starting keytruda

    Had my first scan after my first 9 weeks of imunotherapy with keytruda. All my nodules have reduced in size by at least 50% some more. We are continueing treatment and luckily I am having no side effects.

    I'm glad to hear that things are going well, and you're having no side effects!

    I wish you continued good fortune in your fight; it sounds like you've got a great attitude, and that's a huge plus!

    mg

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited June 2020 #6
    That is Amazing

    All Nodules reduced by 50%. And no side effects to boot. Hurray! It doesn't get much better than that for 9 weeks of treatment. Well, 100% reduction would be better and it sounds like you are heading certainly heading in that direction. May you continue to be blessed with successful treatments till you arrive at NED-Take Care-God Bless-Russ

  • Logan51
    Logan51 Member Posts: 468 Member
    edited June 2020 #7

    Wow. That is awesome to hear. Keep it going til it is gone.

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