Failed Chemo-Sister's Update

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  • zigswife
    zigswife Member Posts: 61
    #22
    Marie-
    I don't get to come on here as often as I would like but when I do, I always look for an update about your sister. I hope the upcoming appointment goes well and someone can help guide you toward some good clinical trials. You and your families are in my thoughts.
  • vlier
    vlier Member Posts: 3
    #23
    snommintj said:

    some other things
    Have you looked into the fostamatinib trial. There is also an olaparib trial. I think you should talk with an interventional radiologist and a radio surgeon. There are many new things they can do to prolong her life. Most of the things they do require little to no downtime or hospital stay. There are a few guys pioneering a new treatment program in the Czech republic, it's called plasmonic oncology. They are having decent results and work pretty cheap. Look into Novalis and cyber knife. She should have her cancer genetically tested. Maybe her cancer is more consistent with another form of cancer. Maybe she would respond better to a breast cancer regimen or other soft tissue regimen. When all else fails, there is a regimen I think might slow things down a bit.

    I currently take 1+gram of resveratrol a day. I take the pill and liquid form. I take between 4-5000 units of vitamin-d. I also drink about 7-10 lemons a day. When my chemo stops working I plan to add DCA, TM, and restart Avastin. I will also look to get on lovastatin. I'll try a high dose of DCA then work my way down if necessary. I'll take the TM until my copper levels drop considerably and then take just enough to keep them low. I think the TM will go nicely with Avastin, I'm surprised the Avastin people haven't tried a study with it. Lovastatin has been shown to have anti-cancer properties in several trials, but only in high doses. I might mix and match here and there but that will be my daily regimen.

    some other things
    Snommintj, how can we hook up privately? You seem to be way up to speed on all kinds of things, and I would dearly love to pick your brains if you wouldn't mind. My husband is 46, stage IV,liver and lung mets, on second round of chemo with Irinotican, 5-FU and Avastin. He is at the halfway point and it doesn't look promising. We are going to switch oncologists to a research hospital in Denver, hoping for better results. It was infuriating to me to find out on my own, for example, that the diarrhea could be tamed by eliminating gluten. So simple, and such a positive response. The research hospital has a comprehensive team, and we have sent records to Johns Hopkins and Emory for some possible studies. I also started him (again, on my own research) on 2000 units of vit D, after reading some studies. Only today have I learned about oncotyping as well. I am working up a good head of mad that the center and oncs we are working with are not going in these directions. I am new to this board so I don't know how to engage in private discussions. Thanks so much.
  • geotina
    geotina Member Posts: 2,111 Member
    #24
    vlier said:

    some other things
    Snommintj, how can we hook up privately? You seem to be way up to speed on all kinds of things, and I would dearly love to pick your brains if you wouldn't mind. My husband is 46, stage IV,liver and lung mets, on second round of chemo with Irinotican, 5-FU and Avastin. He is at the halfway point and it doesn't look promising. We are going to switch oncologists to a research hospital in Denver, hoping for better results. It was infuriating to me to find out on my own, for example, that the diarrhea could be tamed by eliminating gluten. So simple, and such a positive response. The research hospital has a comprehensive team, and we have sent records to Johns Hopkins and Emory for some possible studies. I also started him (again, on my own research) on 2000 units of vit D, after reading some studies. Only today have I learned about oncotyping as well. I am working up a good head of mad that the center and oncs we are working with are not going in these directions. I am new to this board so I don't know how to engage in private discussions. Thanks so much.

    Vlier - sending private message (e-mail)
    Go to CSN Home, middle column will be communiate and connect. You will see the e-mail part. Just put in the sign in name - the CSN name, of the person you want to send an e-mail to and just type away and send.

    Tina
  • vlier
    vlier Member Posts: 3
    #25
    geotina said:

    Vlier - sending private message (e-mail)
    Go to CSN Home, middle column will be communiate and connect. You will see the e-mail part. Just put in the sign in name - the CSN name, of the person you want to send an e-mail to and just type away and send.

    Tina

    marie and messages
    Thank you Tina and Marie I apologize for hijacking the thread. Man, this battle can be quite wearisome and I would encourage you to make sure you do something to calm your own systems, so that you can support your sister all the more. My husband is stage IV liver and lungs, and it is just so hard to be in panic/sad/ upset mode all the time. My prayers for calmness and peace are with you. Victoria
  • vlier
    vlier Member Posts: 3
    #26
    geotina said:

    Vlier - sending private message (e-mail)
    Go to CSN Home, middle column will be communiate and connect. You will see the e-mail part. Just put in the sign in name - the CSN name, of the person you want to send an e-mail to and just type away and send.

    Tina

    marie and messages
    Thank you Tina and Marie I apologize for hijacking the thread. Man, this battle can be quite wearisome and I would encourage you to make sure you do something to calm your own systems, so that you can support your sister all the more. My husband is stage IV liver and lungs, and it is just so hard to be in panic/sad/ upset mode all the time. My prayers for calmness and peace are with you. Victoria
  • slamb58
    slamb58 Member Posts: 31
    #27
    I hate cancer...
    Marie,
    It breaks my heart that your sister is going through this at such a young age. Please kinow I am praying for you and your family. Below is a poem that I read when I rec'd bad news and I hope it will give you and your sister encouragement to continue to fight this dreaded hateful disease.

    Bend In The Road
    by Helen Steiner Rice

    Sometimes we come to life's crossroads
    And view what we think is the end.
    But God has a much wider vision
    And He knows that it's only a bend--
    The road will go on and get smoother
    And after we've stopped for a rest,
    The path that lies hidden beyond us
    Is often the path that is best.
    So rest and relax and grow stronger,
    Let go and let God share your load,
    And have faith in a brighter tomorrow--
    You've just come to a bend in the road
  • dorookie
    dorookie Member Posts: 1,731 Member
    #28
    Praying
    I just wanted you to know that I am praying for your sister and you, and will continue to do so until she is better. Please know that you have so many people on your side and you are not alone, please let your sister know we are pulling and praying for her.

    God Bless her

    Beth
  • biglaur
    biglaur Member Posts: 72 Member
    #29
    I was on a clinical trial
    at UCSD. When I was diagnosed with my "recurrence" I interviewed docs at USC (Lenz) a doc at UCLA (Glasby) and my doc at UCSD. USC was NOT the place for me, but Glasby at UCLA is one of the kindest, nicest most knowledgeable people around. If you can get into see him, you should try. Your best bet for a clinical trial is at a big teaching hospital...so you're on the right track. Keep at it, it sounds like your sister has the best kind of advocate in you...I wish you the best results and much good luck. If you need any phone numbers in SoCal just write Laurie rtpatrl@mac.com

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