Newbie to this group

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Hi everyone,

I’ve been a member of the head & neck group for a few years and unfortunately this is my 3rd round of cancer which has matastisized to my lung and chest & is inoperable.

My sell by date is between 14 & 24 months. I have just read some replies to Stuart’s thread and am pleased to see that many of you have gone past yours. That is so encouraging!! I’m also feeling well and have just returned to work today after being furloughed in April.  

I found out today that my lung biopsy came back positive for PDL1 so I’ll be accepted to go on a clinical trial of immunotherapy. My result was above 20 which the nurse seemed pleased about but I haven’t a clue what that means. Can anyone enlighten me?

Best wishes 

little-fi 

  • FormerMember
    FormerMember in reply to little-fi

    Dear

    Keep your mind on things you can and want do now. and who do you want to go with you. Of course get your paper work together- but that should be ready at all times- anyone could be hit by a bus. 

    First thing I did after finding a fine oncologist was to make my bucket list. What did I want to see, what did I want to do, even the littlest things, a meal or a walks or rewatching a funny movie. Another question: what was I leaving as a legacy. How to help those you leave behind. 

    Well my original list is now checked off and I’m starting a second bucket list.  The pandemic is a slight bother- serious travels must wait until I get the monoclonal antibody against Covid.

    Then I have to convince my family/friends that they want to go too! Lol. I think that planning has helped me. I exercise for an hour daily (almost) with my friend in Wyoming (talking on the phone) we start off with a exercise bike 30 minutes and then use dumbbells, exercise bands and cords. For core and upper body strength. 

    So this may be a good time for your list. And grand babies! Stay strong, exercise , eat well and find your joy(s). Plan and look forward to events and have a good mind set- it all helps to fight cancer and can cheer up people around you. A cancer diagnosis is hard on our families - sometimes I do funny things just to make them laugh. It works.

    Hugs to all,

    millie

  • FormerMember
    FormerMember

    Hi Little Fi

    I have never been told any details as to what my PDL1 was, and I am on Pembrolizumab , a type of immunotherapy, as a 2nd line treatment. I seem to just get the minimum amount of info!

    Hope your treatment works well for you xx

  • Hi little-fi,

    Pleased to meet you albeit via the electronic route. Although I am not a member of your original group and do not know the scope of your treatment or potential treatment, I thought that a post offering support and encouragement was the least I could do. I do know what you mean about being grandparents though. We have two grandsons (4 & 3) and they are a pair of roasters, they keep me on my toes although I`m exhausted when they leave, but we love them to bits.  Hope your treatment goes well. Stay strong, stay positive.

    Take care, Tom.

  • Millie, Debs & Tom,

    just wrote a lengthy reply only for it to vanish into thin air! I haven’t got the time to do it all again so just want to say thank you for your replies & encouragement & I wish you all well. Be on again soon to catch up!

    little-fi xx