My wife has been dx'ed with stage IV NSCLC

P-pop
P-pop Member Posts: 10
in Lung Cancer #1
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.

Comments

  • NayPaul
    NayPaul Member Posts: 230 Member
    #2
    check for muatations
    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
    P-pop Member Posts: 10
    #3
    NayPaul said:

    check for muatations
    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.

    Thanks and I will
    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
    NayPaul Member Posts: 230 Member
    #4
    P-pop said:

    Thanks and I will
    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?

    my wife
    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
    P-pop Member Posts: 10
    #5
    NayPaul said:

    my wife
    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.

    hope scans are good
    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
    NayPaul Member Posts: 230 Member
    #6
    P-pop said:

    hope scans are good
    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.

    up until...
    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.
  • Wrightej
    Wrightej Member Posts: 2
    #7
    Stage IV Large Cell Neuroendocrine Carcinoma
    My husband was diagnosed in June 2011. His cancer has spread much like your wife has experienced and we were told surgery is not an option. Know that just six months ago my husband was an avid bicyclists riding 30-40 miles every other day and even completed a 100 mile race less than a year ago in one day. He had no symptoms until something snapped while picking up a box at work which led to numerous tests and the cancer discovery. Regarding treatment, he first had dedicated radiation to the brain for 3 tumors of which reduced by only half. Then he had 3 cycles of chemo with a cocktail of cisplatin and etoposide. A week after the 3rd cycle and losing our home of 25 yrs to Hurricane Irene, he could not walk as the tumors in the bone of his spine put pressure on the spinal canal. We elected to do dedicated radiation to the tumor in the lower spine although there were tumors invading the entire spine and the cancer had eaten holes in the bone in some areas even though the risks could prevent him from ever being active again. Thankfully, he can now walk, not quickly but he can get around so we completed the 4th cycle of chemo the end of Sept. A recent CT Scan showed that he was not responding well to the treatment. Meaning the cancer did not spread but it did not significantly reduce the cancer after 4 cycles of these very strong drugs. I am told there may be a new clinical trial but he would have to qualify for it at JHU. I'll let you know what we discover. If it takes too long to schedule a consult, we will complete the remaining two cycles of chemo since it is stabilizing the cancer and prolonging his life. Hopefully long enough to find a new successful form of treatment. He too has lost a lot of weight, total of 22lbs. and he sleeps constantly but I think I have discovered how to handle the nausea. After each chemo the symptoms seem to stretch out longer especially after radiation treatment. His appetite is good but I am told by a nutritionist that the cancer takes what it needs from his nourishment first so there is not much left for the well parts of his system, thus the weight loss combined with the treatment side effects. Therefore, I have been successful in alternating his nausea meds and giving him smaller, nutrition rich foods more frequently throughout the day. This seems to be helping and he has gained almost 10 lbs back. As far as coping, only positive conversations. I have asked all friends not to discuss the cancer unless my husband brings it up. Then, let him talk. I have asked everyone I know to send him cards and created a Caring Bridge site to keep everyone updated. I read the positive posts to him on his bad days so it gives him some happiness for a moment. Oh he gets hiccups constantly during and immediately after treatment - sour gummy bears work within seconds of being eaten and only one does the trick. Also, small peanut butter cookies do help with the nausea. I wish you the best and will pray for your wife.

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