MalTay08 Posted August 14, 2017 Share Posted August 14, 2017 Hello - My mom (non-smoker, 75 years old, otherwise in perfect health) was diagnosed with stage 4 NSCLC in mid-April. She was extremely active, in great shape and only discovered her cancer because she started becoming extremely short of breath and lightheaded while playing tennis (which she had recently picked back up). After all the tests, biopsy and scans, we found out the tumor was small (two centimeters) in her right lung and two nearby lymph nodes in the hilar region. She also had moderate pericardial effusion (fluid around her heart) and her PET scan showed a small spot on her liver (again, about 2 cm). She started chemotherapy (carboplatin and alimta) on May 1st and has had five treatments so far. Scans after the first three treatments showed a minor shrinkage of the lung tumor, lymph nodes and fluid around her heart and a dramatic decrease in the liver spot (reduced by half). That was all good news! After her fourth chemo treatment, she suffered from a very low platelet count and had to take an additional week to recover. Then after her fifth treatment her hemoglobin and platelets dropped so low that she was extremely lightheaded and short of breath after only being on her feet for a few minutes at a time. After telling her doctor several times and not getting a response, I finally put my foot down and called and insisted he do something since it sure sounds like she was anemic (based on my google research). Sure enough he agreed and she received two units of blood on Friday and feels much better, also, the doctor ordered another CT scan of her chest that same day to make sure there wasn't a clot or infection that might be causing this. The doctor called and said there is no clot but the mass on her lung looks one centimeter larger. He is not sure if the larger mass is the tumor growing or inflammation. Now his plan moving forward is to take her off the Carboplatin since it's wrecking her bone marrow and keep her on the Alimta that they call "maintenance" and then rescan after a few treatments. I asked why keep her on this if the tumor could be growing and asked about Keytruda (again... see below). He said he is going to take this issue to the tumor board but that he wants to do one thing at a time because older patients can have harder times with immunotherapy. (i can't help but feel he is giving up on her because she is 75 years old). When Keytruda was recently FDA approved as a first line treatment for all adenocarcinoma patients regardless of their PD-L1 (my mom tested positive for PD-L1 at 30%), she had just started chemo. I called him and asked if he would add this to her second treatment and at the time he said he probably would, but on the day of her labs, he told us he decided not to add Keytruda to her treatment plan because the side effects could be too much. He also claimed the study that caused Keytruda to get FDA approval in combination with chemotherapy was just a small study and the data was not strong enough. He said this to me again today when I asked if we could add Keytruda. I have been watching these boards since my mom was diagnosed and I would welcome any feedback or suggestions anyone has that can help me advocate for my mom, who I know has a lot more life left in her. The chemo is beating her up, but she's not ready to just go into maintenance mode and succumb to the cancer. What else can be done? Should I push the doctor to come up with another plan that might include an immunotherapy drug? Thank you so much for any advice you have! Quote Link to comment Share on other sites More sharing options...
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