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Thread: Getting ready for treatment

  1. #91
    Dear Linda!

    I hope your meds will work and you will be better soon!!!!!

    Hugs Petra
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    August 18, all still same, living life every day
    January 2019 < CT said NED!!!!
    Fingers crossed

  2. #92
    Senior User
    Join Date
    Jun 2017
    Posts
    133
    I was reassured that when I joined this cancer forum we can say what ever we want and not be judged so here goes......I am so tired of having cancer on my mind every moment of every day. Practically the minute my 1st PET scan after immuno was clear I had about 2 seconds to absorb that before my eyesight became affected. Apparently it is very rare to have your eyesight affected from immunology but I am going on 2 months now with lose of eyesight in the one eye. It started out as eye inflamation in both eyes but then blurred vision in one eye which became hardly no vision. Almost 2 months later I am still going to my "regular" eye doctor who is treating it the best he knows how and the the worst part is my oncologist seems to have taken a back seat, since immunology has been discontinued,
    and is satisfied with saying "I'll see you in a month". She has told me she has treated around 100 patients on immunology and only 2 have come up with vision problems and guess who has the worst vision problem? I keep on telling her, you need to reach out to other oncologists about these vision problems and find out more details and then reach out to my eye doctor but all's she has been doing is taking pictures of my eyes. So... next week my eye doctor is going to do more tests and then probably refer me to a specialist. I had also really wanted to get my 3 month PET scan the beginning of this month as it was due but my oncologist wants to wait so I am going with still NED.(at least that gives me some peace of mind).
    We are all human, sometimes strong, sometimes weak, sometimes crying but then smiling but we are always trying to find our way.
    Love and hugs to all my friennds
    Linda

  3. #93
    Dear Linda!!!
    Yes you can, just let it out!!!!
    You know, it's hard to think, you did beat the cancer, and now you loose your eye...but the Onc will just see that he did all alright. I did send you a pn, it may can help.
    And please, when ever you feel like just shout it out here.
    Sending you lots of love and a big hug, Petra
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    August 18, all still same, living life every day
    January 2019 < CT said NED!!!!
    Fingers crossed

  4. #94
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    Posts
    3,979
    Linda:

    Sorry you have experienced this complication for the effects of treatment. It seems sometimes there are obstacles put up but you are doing great but we certainly sympathize with all you have encountered along the way.

    No need to ever feel you can not just "let it out" here on the forum. While we may not have the answers, we are good listeners and sometimes it just is comforting to put it down in words and get it out. We have all been there in different capacities so vent away whenever you need.

    Lisa

  5. #95
    Hi Linda my friend!

    Be thinking of you alot, how are you???

    Petra
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    August 18, all still same, living life every day
    January 2019 < CT said NED!!!!
    Fingers crossed

  6. #96
    Senior User
    Join Date
    Dec 2012
    Posts
    312
    ME, TOO!!
    zim

  7. #97
    Senior User
    Join Date
    Jun 2017
    Posts
    133
    Hi Petra and Zim and everybody else!
    I am doing alot better mentally and physically. I think I got to the point I was starting to feel like an invalid which I am not .
    My vision has gotten alot better in the last week so maybe turning the corner on that. The dermatologist gave me steroid cream for immuno rash which seems to be working.
    Has anyone had to take Prednisone pills? My onco finally got concerned about my eyes and skin and prescribed it but both eye and dermatologist thought it wouldn't help that much so left it up to me as to take. Too many side effects that scare me. Especially mental ones.
    I go for PET scan August 10. Feel very calm about it.
    My thoughts are with you all.
    Linda

  8. #98
    Thanks Linda, now i feel better!!! I'm so glad that your eyes are getting better and you will get rid of the rash!!!!!
    Still will be thinking of you on Aug 10.

    Hugs Petra
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    August 18, all still same, living life every day
    January 2019 < CT said NED!!!!
    Fingers crossed

  9. #99
    Senior User
    Join Date
    Jun 2017
    Posts
    133
    Hello to all of you!
    Had my PET scan last week and got the results this morning. Today is my 68th birthday and scan showed I am tumor and cancer free. So, IndyLou was right on, after 8 months of immuno drugs I have been cancer free since January and have not had immuno drugs since May. Thank you IndyLou for your encouragement. Still need to see oncologist next week but radiologist reccomends another scan in SIX months which makes me very happy. Still going to eye doctor as eye is slow to heal but I am (at times, slowly) finding peace with what is.

    ZIm: Read your recent post and thought I would respond to you here so I can get a little "mushy". You have taught me so much in this journey. Things I will never forget. Cancer patients can have a sense of humor, even in the dark times. I wish you the best, easiest, peacefiullness way in your journey.

    Petra: You are my forever NED twin. And I know, if one of us falls, the other will be there. Feel lucky to have found you.

    Linda

  10. #100
    Linda

    Great news and happy birthday. Thank you for sharing both with us!

    mike
    At the time - 46 yo male, non-smoker
    Sept 2012 - DX - One tumor NSCLC Squamous Cell Right Upper Lung
    Oct 2012 - TX - Treatment similar to Pancoast Tumor - Pre-operation radiation and chemo (5.5 weeks of IGRT and 3 cycles of Cisplatin and Etoposide)
    Dec 2012 - Surgery - Remove RUL, Surgical Pathology Report Adenocarcinoma T2N0M0
    Now - Wait, watch, & pray

 

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