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Thread: Getting ready for treatment

  1. #81
    Linda

    Keep it up! Great start to the new year.

    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

  2. #82
    Senior User
    Join Date
    Jun 2017
    Posts
    120
    Had another PET scan after 12 weeks of immunotherapy and am tumor free. My oncologist decided to only start giving me 1 immuno drug now as the 2 drugs together had alot of side effects and already feel more energy. Will still go every 2 weeks for the 1 infusion and that may even be extended eventually. We have all been there,where it feels too good to be true and truthfully this was the worst winter of my life with the tiredness, vision problems etc. Even though I was cancer free, the side effects took some of the joy out of it. They are finding out that certain immunology drugs are causing vision loss in some patients (not good). My doctor is being carefull and thinks with only 1 drug I will feel alot better. She says I can always go back on 2 drugs and it is important to consider the quality of life.
    Thinking of you all,
    Forever thankful,
    Linda

  3. #83
    Still good news Linda. Sire SE are bad but you're alive. So what drug you get now?
    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

  4. #84
    Senior User
    Join Date
    Jun 2017
    Posts
    120
    Petra,
    I am on Opdivo which I think is what you are on. I go every 2 weeks to get an infusion. How often do you go?
    Hugs, Linda

  5. #85
    Yep , every two weeks also!
    You know, i love to be a NED twin
    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. #86
    Senior User
    Join Date
    Jun 2017
    Posts
    120
    Hi everybody,
    I have news about my cancer treatment, whether it is good or bad remains to be seen. After 8 months on immunology my doctor has taken me off of it indefinitely. About 7 weeks ago started to have eye problems, red eyes and swollen. No big deal right. Showed my oncologist and she wanted me to go to my regular eye doctor so did that. Basically after all the usual eye tests he said it was not related to immunology and there was no vision loss. So, back to oncologist who says it's probably allergies. Immunology infusions continue. A few weeks later my eyes are really bad and in one eye there is definetly loss of vision big time. Back to eye doctor who says, whoops, I misdiagnosed it and should of started treatment 2 weeks ago because now you have major inflammation. He is trying to get the inflammation under control and hopefully my eyesight back. My oncologist is trying to find a eye/immunologist to figure out how to proceed. I haven't had infusions for 5 weeks now which would be a nice break but,
    So, go back to oncologist in 2 weeks and in the mean time keep on going to eye doctor and hope there's improvement. Hey, I can't drive and everyone likes a little freedom.
    Thinking of you all,
    Linda

  7. #87
    Senior User
    Join Date
    Dec 2012
    Posts
    296
    Hi Linda,

    Please have your eye doc check for Myasthenia gravis! I know that it sounds weird, but it could be.
    there is a blood test that should be tried. But, you can have Myasthenia gravis without it. It took them a full year to isolate my case, then the 'pill' worked wonders on the swelling and double vision.
    Good luck, dear, and keep us informed!!

    regards, zim

  8. #88
    Moderator Senior User IndyLou's Avatar
    Join Date
    Jan 2014
    Posts
    459
    Hi, Linda-

    Was reading through this thread and saw your latest news. While I can't speak to the eye issues, I can tell you that there is a lot of debate in the pharmaceutical research community as to how long immuno-oncology drugs need to be administered. This is especially true once you get to NED. Medicinally, the drug has done what it was supposed to do: trigger your immune system to fight off the cancer. Once it does that (and it sounds like it has in your case), the immune system should continue to work its magic.

    I hope your eyes start to heal, now that you're off the medicine.

    Best wishes.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED

  9. #89
    Hi Linda!
    I can copy what Indy said, i am also in another Forum, and there are many ppl off it when they are NED, and they really say it still works.
    So better don't worry and concentrate on your Eye, just imagine you get a Car from Zim ( ) and can't drive !!!!
    Chin up and forward.
    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

  10. #90
    Senior User
    Join Date
    Jun 2017
    Posts
    120
    Thank you all for the support.
    Zim, my eye doctor is going with iridocyclitis which apparently is eye inflammation. I go see my oncologist at end of week and will ask her about myasthenia g. I do blood tests for her all the time so maybe she will do this blood test also.
    IndyLou, thank you for the encouraging words because it is true, not alot is known about immunology drugs. I know my eyes are still al long way from normal so I don't see the drugs in my near future. Because I responded so quickly to the drugs and became NED, I am hoping they will continue to work.
    Petra, thank you my dear friend. I am going to my eye doctor twice a week but the plus is he is only 5 minutes from my house compared to cancer center which is a hour+ away!
    Linda

 

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