Wife with mets and incurable BC

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andydentre
andydentre Member Posts: 11
edited June 2014 in Alternative Medicine

Yesterday my wife Wendy was diagnosed after a recent CT scan to have mets in the sternum and lymph nodes in the chest wall. She was first diagnosed on April 5, 2011 with trip neg BC, and had Chemo, then double mast. and then radiation. She felt fine except for some pain in the sternum where she was having physio to release scar tissue in that area. So she thought nothing of that pain. Now she has been told she has incurable cancer and was given two choices. 1) a trial drug 'Foretinib' or 2) chemo, Carboplatin and Gemciteabine. which will or could slow the growth. 

Is there an alternative treatments out there we should be looking at? We heard of someone who went to Mexico who had all their blood removed and heated and put back. (not all at once I'm sure) which has helped. Is there any real help out there for a possible cure?

We are so lost right now. Thanks for any ideas you may have.

 Andy and Wendy 

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  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 377
    edited April 2012

    I'm sorry about what you and your wife are going through.

    You may want to investigate Dr. Ursula Jacob's Privatklinik in the Black Forest in south  Germany.

    Ask for references similar to your wife's case. I know they do hyperthermia but don't know the details of how it's actually done. They use several other modalities also including chemotherapies which are tested for its fit for each individual.

    blessings...

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  • 37antiques
    37antiques Member Posts: 643
    edited April 2012

    Hello Andy and Wendy! 

    I am sorry about the recent news, it takes a while to sink in.  But while trying to wrap your head around it, please remember that even though it is not curable, it is treatable, it does not mean you suddenly have an expiration date.

    I'm not TN myself, but my take is that it is good to be "just" in the bones and nodes.  Did they suggest removing the affected nodes?  As long as it stays out of the organs, you are in a relatively positive place as far as stage IV goes.  Chemo is always a big gun, if she feels good I might wait, if she feels crappy I would do it now, but that's strictly my opinion.  The blood thing sounds kind of severe, I would take a good look at statistics from many sources before trying that, I don't know if anyone here has done it.

    There are two places I would suggest you visit, one would be the TN forum, and the other would be the stage IV forum.  There may be others who know far more about these treatments and can give you some helpful information.

    Please don't let the word "incurable" consume you, it is shocking, but there is a point where you can tolerate it and find your way to fighting back.  Keep enjoying each other, you are still the same!

    ((Hugs)) to you both.

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  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 377
    edited April 2012

    I agree with 37antiques on one thing.

     Don't use the word "incurable." You don't have to cure the cancer. You just have to MANAGE it so it doesn't kill you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    You may also want to contact the Triple Negative Foundation http://www.tnbcfoundation.org/

    They will have probably the greatest access to Clinical Trials, and current work on 3N.
    So sorry you and Wendy are havig to deal with this, and PLEASE - don't let that "incurable" world stop you - many docs still use it, when they probably mean to say "chronic illness."

    All best wishes - and good luck with what ever you choose to do.

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  • cubsfan
    cubsfan Member Posts: 49
    edited April 2012

    My sister who is also Triple negative is currently in Germany receivng therapy    She receives not only her current chemo program she has whole body hyperthermia.   I came back on Tuesday from spending one week there.  It is awesome.   It is one of the best thing I have ever witnessed or been a part of in my life.   The clinic is run by Dr Alexadre Herzog, he was recommended to me by my Accupunturist.   I will be going for myself sometime in the near future as a preventative for reoccurence.   I witnessed so many wonderful people and stories.   Please feel free to PM if you wish more information.   He is on the internet.   Google dr Herzog.   There were many people from the states and all other countries there.

    Nancy

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited April 2012

    Can she do chemosensitivity testing?  I think I read on this site that you can send a sample of the tumor to be tested for not only conv treatments, but alt treatments as well.  I would think that would be super helpful.  

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  • andydentre
    andydentre Member Posts: 11
    edited April 2012

    Thanks very much for all your concern, support, words of encouragement and hugs. I will not use the word 'in.....able' anymore. I think we now know it can be managed and things can still be good for a long time. Each day will be a blessing and who knows, maybe in time with new drugs?????? Thanks all so much. The best to everyone.  Andy

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  • andydentre
    andydentre Member Posts: 11
    edited April 2012

    Also thanks for the triple negative foundation web site and chemosensitivity testing. We will also look at Dr. Ursula ....... although it may be a bit too expensive.

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited April 2012

    This is an alternative site so I feel comfortable suggesting you check as well into alternative therapies such as

    http://medicalxpress.com/news/2012-04-grant-fuel-soda-cancer-therapy.html

    A friend of mine aunt, whose doctor said she was terminal and go home and die  went to Canada for this treatment. She is completely cured...no cancer.

    There are other treatments that may help along with what she is already doing. If you scroll down on the alternative threads you may find something that you might want to check into further.

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  • leggo
    leggo Member Posts: 3,293
    edited April 2012

    Andy, I've sent you a pm.

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  • MsBliss
    MsBliss Member Posts: 536
    edited April 2012

    My first recommendation is that you and your wife immediately read the EDGE CAM at the following link, sorry you will have to highlight and paste, I can't make it "hot":

    http://www.nosurrenderbreastcancersurvivorforum.org/post/UPDATED-EDGECAM!-AUGUST-2011-5424968?trail=20#1

    It is a challenge to read but it is solid and good advice for a starting point.  I had triple negative and did not do chemo or rads because of secondary health issues, and I had a extremely aggressive pathology.  I started with several protocols, but this one was my primary and had the endorsement of my oncologists.  I consulted with 8 different oncologists (one of them was my bil).

    Not mentioned on the EDGE but an important supplement to consider is something called sulforaphanes; they are particularly important for triple negative.  You can also get topical versions of this which target specific areas. 

    I have a time crunch and will get back to this thread with more recommendations.  I just wanted you to read the EDGE data and please get started ASAP.  You can order most of the items from the mentioned online supplier's house brand which has better prices plus they have purity standards that I trust.  

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited April 2012

    I'm sorry to hear this. FWIW, I've heard the same thing that 37antiques did, that if it's just in the bones, that means a better prognosis. Also, the counselor I spoke to said that Stage 4 BC has a much better prognosis that it did 10-15 years ago, and that many patients are able to manage it for many years. I'm sure it's still a shock. I wish you and your wife weren't going through this. It's great that you're helping her so much. As an FYI, there's also a forum here for caregivers. It's important to remember to take care of yourself too. Take care (((hugs)))

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Hi,

    Sorry you are going through this. I have some info that you might find useful. Google:

    Oncology Association of Naturopathic Physicians

    There will most likely be one in your area. They are very knowledgeable.

    tucker

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