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My wife has been dx'ed with stage IV NSCLC

P-pop
Posts: 10
Joined: Oct 2011

Hello, my 47 year old wife was recently dx'ed with stage IV NSCLC w/ mass in left lung activity in lymph nodes in chest and mets on liver, adrenal gland on one kidney and several spots on spine, hip and a very small spot in her brain. The mass in her lung is pressing on a nerve and causing her to speak in a whisper. She also has a chordial melanoma in her left eye, which is what started the process of finding the rest of the cancer. 2 days after seeing the oncologyst she was admitted in the hospital for pneumonia. We spent an entire week in the hospital while also getting CT's and MRI's. This was very difficult because she was having such terible pain in her back and hip. It is nearly impossible for her to lay flat due to this pain. We were released for about a week and then admitted again for pneumonia. This time our stay was for 6 days. While in the hospital she lost weight and a lot of her mobility. We were sent home with a schedule of 10 radiation treatments to hopefully ease her pain and gain back strength and mobility. She just finished the radiation treatments this Monday and she is starting chemo on Thursday. I have watched this very active woman diminish to the point that she can barely walk. Some days it seems she is feeling better then she is worse for the next two. She seems so weak and frail I am terrified about her taking chemo! I keep telling her that I am finding more and more people that are surviving this and she can too. I have not worked in over a month and focus on her every need. How long will the side affects of chemo last and what can I do to help her cope? Any advise at all would be helpful.

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

Withh younger nsclc such as your wife and mine (41) I always suggest getting tested for genetic mutations such as efgr and alk. There are drugs that can work extremely well on those mutations. And I alsways rec. Getting a second opinion.

Sorry u have to be here, but know there r many supportive and knowledgable people here.

P-pop
Posts: 10
Joined: Oct 2011

Thanks for the advise NayPaul, I had read about that testing and now plan on discussing it with the doctor on the next visit. My wife received her first chemo treatment on thursday and then got 2 units of blood on friday and an ultrasound looking for blood clots in her legs as she is having severe pain in one knee. She has been so tired and now we know it was not just the radiation treatments. The chemo is carbo/alimta.

Did your wife have the mutation and get treatment with positive response?

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

Wen my wife was dx in sept of 10, she was tested for efgr. Came back negative.... there was no reason to test her for alk at the time as there were no first line studies. She did taxol/carbo/avastin/cextuximab concurrently. When that stopped working, she was tested for alk, and it @ame back negative. During her second line chemo, we discovered brain mets. She was receiving whole brain radiation when we decided to have her rebiopsied and tested again for efgr, alk and kras. Efgr and kras were negative, but the alk was positive. She is now on crizotinib. Our first scans will be Monday. She is having a tough time, but onc thinks it is a result radiation. We will know on Monday, and ill get back to ou.

P-pop
Posts: 10
Joined: Oct 2011

I hope that her scans have good results. I didnt realize that you could re-test and get results like that. I am sorry that she is having a tough time. Hopefully the side effects wont last too much longer. Are you taking care of her or is she managing herself? I have been caring for my wife since she was released from the hospital the first time. She has been complaining of pain in one knee for a several days as of today she does not want to put any weight on it. Ultrasound for blood clots are neg and and xray does not show anything either. Edema is maybe the cause. Trying to control pain with meds and see how the weekend goes.

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

Up until mid july, she was self sufficient, worked, and was preparing for a walking marathon. She even walked 18 miles after seven sessions of wholebrain radiation. Then it was a steady decline. The second part of august up through the first part of september was basically her sleeping while I took te kids to school and managed her meds and took her places. Then she got a little better. But now she has lost so much weight and as a result of radiation and treatments she is nauseous, forgetful, tired, and gets dizzy easily... so I don't let her drive. Today she was out of bed for 5 hours.... will update u Monday.