Home Forums For Caregivers Only Sylvia in San Diego

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  • #20665
    zephyr66
    Participant

    Just checking in… to be honest, i try not to check in cause i try and “be in life” when things are good and get away from my mind being filled with melanoma. i do come and am a voyeur quite often and read about others’ struggles and successes. pretty selfish, i’m sure.

    amy just started ipi again this week. she is actually doing better than she has in over a year but her scan showed an increase in size for her spinal tumor. she did radiation and has had considerable relief in the last week and lots of energy and stamina. so, who knows what will hold with the 2nd round of ipi. it’s only been a couple of days.

    for those that don’t know, she was diagnosed with spinal tumors about a year ago and fell very ill, lost a terrible amount of weight, had unbearable pain and we thought we were going to lose her. she went on zelboraf and IPI. she showed a virtually cancer free PET scan a few months ago and already the cancer in the spine is back. the large tumor in her lung is still gone. so, here with go with round 2 on IPI and sure hoping she is a responder and that it holds this time.

    well, just checking in. hope all are holding out well.

    sylvia

    #56824
    dkmc
    Participant

    Sylvia – Glad you checked in. Ipi is so new I always wonder what the data will show with the second round of ipi for those who did respond first time around. Isn’t it so weird to think of it in terms of “statistics” or “data”…but it is where we start I guess. I guess that is where my “why not Don” mental thinking goes… ok 20% respond – why not be in THAT group haha. Anyway for me it helps. I’m flipping the numbers to my mental health well being! And hey it happens! You both have been through so much & I hope Amy does respond again. Good wishes are headed your way. Karen

    #56825
    Catherine Poole
    Keymaster

    Sylvia,

    So happy you checked in and let us know how things are going. You’ve been in my thoughts. You also may want to check into a PD1 opening in your area as it is being shown to be more effective than IPI in some instances. The trial slots are small, but California may have some of the Merck ones and the phase III for the BMS should be arriving soon. Sounds like you have a mixed result but I like to hear she has good energy! Take good care..

    #56826
    Cecelia
    Participant

    Sylvia, my partner Margaret completed a second round of ipi in June; no problems until the very end, when she got a crazy prolonged fever. However, in August scans everything was still good, including a brain met we have been watching closely. She’s also on half-dose zelboraf right now, but has no symptoms of any real issue other than the sun thing with Zelboraf. I’m hoping your partner has the same very positive response with the round two of ipi. Someone in the other forum said melanoma may eventually be just another chronic conditions–I’m hoping.

    #56827
    zephyr66
    Participant

    Thanks everyone for the replies… she had her first round a week ago and she is going strong. We’re in the middle of moving and she is hard at work. I thank God for every day like that – where it feels normal and I can go to work without worry and know she is just able to do every day things. Boy, this disease puts life in perspective real fast and gets you to appreciate the ordinary, doesn’t it? Have a good day.

    #56828
    Anonymous
    Guest

    zephyr66 wrote:

    Boy, this disease puts life in perspective real fast and gets you to appreciate the ordinary, doesn’t it?

    Ain’t that the truth Sylvia! And it changes your life forever. I’m glad Amy’s doing well and you’re enjoying life.

    Jeff

    #56829
    zephyr66
    Participant

    thanks, everyone! amy isn’t doing quite as well as when i first posted. she has a lot of numbness in legs from spinal tumor but pain is controlled. she is having numbness and pain down one arm but scan didn’t show anything. she is very, very, very fatigued by the IPI and we have only done one round so far. yikes.

    sylvia

    #56830
    Catherine Poole
    Keymaster

    Sylvia,

    Is she having radiation too? That may help the pain with the spinal therapy and there is some evidence of IPI and radiation working together..Just a thought. She is so fortunate to have you there taking care of her. Don’t forget to take care of you too!

    #56831
    DadZGirl
    Participant

    Sylvia,

    Sorry Amy isn’t feeling well right now.

    Just wanted to drop you a line and let you know I’m thinkin about y’all.

    My Dad is starting radiation for the first time this Wed, hopefully it will help.

    Hang tough!

    Laura

    #56832
    zephyr66
    Participant

    hi..

    catherine – yes, she had radiation about 6 weeks ago on her spine.

    laura – i hope your dad does great!!!

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