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Posted

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!

Posted

Hi and welcome!  I'm glad you're advocating for your mom. I haven't had immunotherapy and know little about it so I can't be much help there. I have recently seen articles, but I can't remember where, that say that treatment choices shouldn't be based on age but on the patient's general health.  I remembered this article because I'm 72 and in pretty good shape. I sounds like your mom was in fine shape prior to the cancer.

Does anybody remember this article or specifically where it was?  If nobody responds to this question, you (or I, for that matter) could address it to Katie B or Lauren on the Lungevity staff, who might know.

Hang in there. 

Bridget O

Posted

MalTay,

My bottom line answer -- second opinion.  I'd get a second medical oncologist involved.  Now I'm not a doctor and Keytruda is showing impressive results but immunotherapy is a relatively new treatment modality for cancer in general and lung cancer in particular.  There could indeed be some reasons why her current doctor is reluctant to start a Keytruda routine, but my doctor would have to explain the reasons, in detail. I'd expect a complete explanation of what potential side-effects were of concern and why. A tumor board should not need to be consulted to explain side-effects.  So I'd be shopping for a different medical oncologist.

I'm also wondering why Neulasta and Procrit were not administered to address low red and white counts.  This is a very typical side-effect for most conventional chemotherapy and the administration of these two drugs is nearly universal about 3 days after infusion.  I had in total 18 infusions of Taxol and Carboplatin and for about half, I received injections of Neulasta and Procrit to kick start red and white cell production.

Chemo does beat one up but it also beats up tumors.  Something is not adding up with her blood count problem.  The only good thing about chemo side effects, my experience, is then tend to repeat in the same order and intensity after each infusion.  Yet, your mother did not experience low counts till after her fourth.  I had low counts after each infusion and sometimes, they were low enough to warrant injection of the aforementioned drugs. So, something else may be going on with her marrow.

If it were me, I'd be consulting with another medical oncologist.

Stay the course.

Tom

Posted

Thank you, Tom. I agree with you and am going to talk to my parents tonight about getting another doctor involved. Also, regarding the Neulasta and Procrit... she has received a Neulasta injection after every treatment and her white blood count has never suffered.  I went back through all her CBC reports just now and see that her Red Blood Cell count, Hemoglobin, and Hemacrit have been flagged as "Low" ever since she had her first treatment. In each blood test since that first one, these three values have steadily decreased. Her only side effect from chemo has always been just an achy, sore flu-like feeling from the Neulasta and then some lightheadedness and fatigue.  The lightheadedness just got worse and worse with each passing treatment until her platelets were flagged after the third treatment and then her hemoglobin after her fifth treatment last week which led to the blood transfusion on Friday. I've never once heard the word Procrit, so I'll be sure to ask her doctor if that should have been an option for her.  

Thank you so much for your detailed email and I will be sure to keep you in the loop on how this progresses. 

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