Recently Diagnosed with Stage IV NSCLC

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  • ButterflyLake
    ButterflyLake Member Posts: 44
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    ViewSonic said:

    Update - On Alimta Now
    Thanks for all the kind words. My wife has been a trooper despite the odds. Ever since she was released from the hospital towards the end of March, we have been back and forth to the hospital for pain management. During one hospital stint in April, the doctors found that several spots in her brain have re-formed. Since she could not do WBR anymore, she was referred to have gamma knife surgery. During the gamma knife MRI scan, they discovered 20+ spots which was originally thought to have been only 5 spots. At first, the gamma knife team did not want to treat her for that many spots, but after several discussions with her oncologist, they agree to treated her anyway. Her gamma knife procedure took 4+ hrs to complete. It seems her condition is improving since she is able to walk on her own for short distances. In addition to the gamma knife, she's been on an Alimta only regime. Not sure how effective it is, but I'm sure something is working since she's not having the severe pains anymore. This has been a rough 5 months of the year. She's due for scans at the end of the month, and hopefully the scans will show that it is under control. If not, her doctor stated that he will plead her case to Pfizer to be allow for compassionate use of Crizotinib. Here's hoping for the best...

    Just wanted to let you know my prayers are with you
    I've had the roller-coaster ride with my mom (stage IV lung with brain mets) since July. My prayers right now are with you, your wife, and your kids. Best of luck to you.
  • sleepless in jersey
    sleepless in jersey Member Posts: 185
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    ViewSonic said:

    Update - On Alimta Now
    Thanks for all the kind words. My wife has been a trooper despite the odds. Ever since she was released from the hospital towards the end of March, we have been back and forth to the hospital for pain management. During one hospital stint in April, the doctors found that several spots in her brain have re-formed. Since she could not do WBR anymore, she was referred to have gamma knife surgery. During the gamma knife MRI scan, they discovered 20+ spots which was originally thought to have been only 5 spots. At first, the gamma knife team did not want to treat her for that many spots, but after several discussions with her oncologist, they agree to treated her anyway. Her gamma knife procedure took 4+ hrs to complete. It seems her condition is improving since she is able to walk on her own for short distances. In addition to the gamma knife, she's been on an Alimta only regime. Not sure how effective it is, but I'm sure something is working since she's not having the severe pains anymore. This has been a rough 5 months of the year. She's due for scans at the end of the month, and hopefully the scans will show that it is under control. If not, her doctor stated that he will plead her case to Pfizer to be allow for compassionate use of Crizotinib. Here's hoping for the best...

    alimta
    Hello~My heart goes out to you and your family!
    My Mom is 60 and has NSCLC stage IV diagnosed on 1/3/11 with mets to brain,spine and pelvis. She had done WBR 10 days and did 4 rounds of carboplatin/alimta and every 9wks zameta( for bones) and they gave her b12 shots every 6 wks.

    Mom did good on both no nausea or sickness. Lost hair, but that was from the WBR.

    Got the call brain clear wow
    Bones are the same and lungs some shrunk and some grew. So change of TX now Taxatere 3 wks on 1 wk off til Aug. than scans again.

    Neurosurgeon said she could never have WBR again if they were to come back.

    She tested neg. to the ALK and the gene mutation tests as well, I dont know what we go to from here if this doesnt she great results?

    Keep us posted...thinking of you
    sleepless in jersey
  • LeeandShirley
    LeeandShirley Member Posts: 122 Member
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    ViewSonic said:

    An Update
    An update, my wife visited Emory Winship Cancer Institute in Atlanta to obtain a 2nd opinion. Oncs gave her the same diagnosis, however stated that she tested positive for the ALK mutation, and can enroll in the Crizotinib trials. However, she must go thru at least 2 - 3 cycles of Carboplatin / Taxol, before beginning the trials and even then there's no guarantee that she will be put on Crizotinib.

    During this time from when she was first diagnosed, she has been doing a lot of research on herbals and alternate medicine to battle cancer. She has been so caught up in it that she's currently deciding to forgo the conventional treatments of chemo for an alternative method. She states she's going to go through with the radiation to the head, but will only do alternate treatments afterwards. Now she's totally against chemo for some reason. And no matter how I try to persuade her and talk to her, she goes on the defensive and we get into a argument. She's says I'm not being supportive, and she has stopped talking to me about the whole situation altogether. I am so frustated and hurt that she's refusing to go thru with the chemo. The doctors are saying chemo will help, and if it doesn't work; then the clinical trial of Crizotinib would definately help fight the cancer. I am a lost at what to do, I've tried talking to some of her close friends to see if they can persuade her to go thru the treatment, however they are not getting through to her as well.

    While ultimately its her decision, I still wish she would consider chemo. What should I do? I don't want to see my wife lose her life because of her stubbornness.

    Alternative treatments
    So sorry for the stressful situation you are in due to your wifes cancer diagnosis. It's a terrible disease. I believe in natural treatments, too. But, not to the exclusion of a doctor's, (M.D.'s) care. I've done tons of research about cancer treatments since my husband was diagnosed with primary liver cancer. Believe me, short of a biblical miracle, there are no natural cures for cancer. That is not to say some dietary adjustments and supplements won't help. I give my husband lots of supplements that help with chemo symptoms and if pain should ever be a problem we will visit our local acupuncturist. But, to give up conventional treatment, will only shorten her life. I beg her to reconsider. There's nothing wrong with using both treatments and not excluding one. Maybe she's scared of the side effects of chemotherapy. She need not be. They are not nearly as bad as they used to be. My husband has had two treatments, and has had no nausea, or hair loss just some fatigue. Try to convince her to do both. It couldn't possibly hurt to do EVERYTHING possible. She needs to fight this with both guns ablazing. Good luck and may God bless you both.
  • grannylove
    grannylove Member Posts: 183
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    ViewSonic said:

    Update - On Alimta Now
    Thanks for all the kind words. My wife has been a trooper despite the odds. Ever since she was released from the hospital towards the end of March, we have been back and forth to the hospital for pain management. During one hospital stint in April, the doctors found that several spots in her brain have re-formed. Since she could not do WBR anymore, she was referred to have gamma knife surgery. During the gamma knife MRI scan, they discovered 20+ spots which was originally thought to have been only 5 spots. At first, the gamma knife team did not want to treat her for that many spots, but after several discussions with her oncologist, they agree to treated her anyway. Her gamma knife procedure took 4+ hrs to complete. It seems her condition is improving since she is able to walk on her own for short distances. In addition to the gamma knife, she's been on an Alimta only regime. Not sure how effective it is, but I'm sure something is working since she's not having the severe pains anymore. This has been a rough 5 months of the year. She's due for scans at the end of the month, and hopefully the scans will show that it is under control. If not, her doctor stated that he will plead her case to Pfizer to be allow for compassionate use of Crizotinib. Here's hoping for the best...

    Praying for the best!
    I am praying for the best for your family. You have been thru so much these past months and I pray for God's grace. You are a wonderful caring husband/father and I pray that you continue to hold strong. I will lift you and your family up in my prayers. God Bless and keep us posted on how we can help