If you're out of other options...

leggo
leggo Member Posts: 3,293
edited June 2014 in Alternative Medicine

Been struggling with if (and where) to post this. In 2009, I found myself out of chemo options. I started taking DCA faithfully from that point on and had very good results with brain mets a year later. Other mets in bones, lungs, and liver had slight progression/stability over the next two years. In June of last year, I started taking metformin and shortly thereafter, added a statin. For the first time, I actually had regression in the other areas. Just had my latest scans and to everyone's happy surprise, liver mets are so small they can barely be seen and lung mets are gone.....completely and bones are stable....for the first time ever.....no progression on bones. I can't begin to tell you how ecstatic I am that I actually found an alternative, albeit off-label drugs, that worked for me. These, along with a couple of complimentary supplements has actually improved things for me for the first time ever. Since everything has been hit and miss regarding my treatment over the last 3 1/2 years, I'm not sure which drug, or combination thereof has done the job, but if I had to guess it would be the metformin/statin combo. If you find yourself in a situation where you have no other options, it's certainly something to look in to. I was so ready to give up and so glad I didn't.

Here's the details:

DCA - 333mg X 3/daily

Metformin - 500mg X 4/daily

Crestor - 10mg/daily

B6 - 150mg/daily

B12 - 300mcg/daily

Vitamin C - 2000mg/daily (with rose hips)

Grape Seed Extract - 50 mg X 4 daily

At least four cups of very strong black tea (leaves) daily.

I don't plan on coming here too often, but I do have it set up that if you send a pm, I'll be notified by e-mail, so if you have any questions, I'd be happy to answer. Hopefully, this info will help just one person who finds themselves in dire circumstances. To be clear, I don't have studies to back any of this up. I just have a really good doctor who researches/provides honest opinons on drugs for me. Also, some of these drugs come with wicked side effects that have to be taken in to account, but for me, I'd rather put up with those than be dead....a personal decision. DCA causes horrible neuropathy and muscle damage. Metformin causes gastro problems. Statins deplete your body of co-q10, high liver enzymes, muscle weakness. The combination of everything I've been taking has also caused substantial hair loss. For me, all of these are outweighed by the benefits.

As I said earlier, I hope this can help just one other person. Not my intention to get into arguments about treatments, etc. Just info for those who want it and from my personal experience, when chemo just doesn't cut it and what worked for me.

Good luck to all of us who are fighting the end stages of this horrible disease and hoping that someone else just gets lucky too.

ETA: also a healthy diet with absolutely no red meat.

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Comments

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited February 2013

    gracie - what terrific news! You've accomplished something amazing and I hope regression continues until it reaches NED. You actually took on the liver and are winning - wow. I've always heard how hard liver mets are to treat. I had missed your posts and am glad to see you back, and with such wonderful news.

    I would hope people would be big and un-egotistical enough not to argue with you about treatments - as too often happens here. I really hope more sisters can post and celebrate like you - and not be met by snide remarks from those who are channelling their own insecurities about treatment.

    Godspeed, and don't be a stranger.

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  • leggo
    leggo Member Posts: 3,293
    edited February 2013

    Thanks Athena. My best to you as well. How are you doing?

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  • leggo
    leggo Member Posts: 3,293
    edited February 2013

    Also forgot to mention that the DCA may or may not have caused a benign tumor on my adrenal gland, which resulted in me losing a kidney. I have no way of knowing really if this would have happened had I not been on the DCA, but my educated guess says this drug may have been responsible for that tumor, based on the timing.

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  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited February 2013

    I am doing fine, thank you.

    I have two questions: a) what is your thinking behind grape seed extract, and how do you take it - is it available in supplement pill form? Also, b) vitamin d3 is not on your list - is there a particular reason for that?

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  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2013

    Gracie, I'm so happy to hear that you've had significant results on your program! That's wonderful news!  Thanks for sharing!  (((Hugs)))  Deanna

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited February 2013

    Hi Gracie,

    I am thrilled to pieces that your latest scans turned out so well!  Yay!

    I'm glad you're tolerating all the side effects from the meds you are on now.  The statin's can also cause short-term memory loss.

    Athena ... Grape seed extract is used as an AI.  Our friend Barbara in Florida uses grape seed extra instead of taking Arimidex.

    love,

    Bren

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2013

    Great news, Gracie! I'm sorry about the side effects, but your scan results can't be beat!  Thank you for sharing. 

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  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited February 2013

    Thanks Bren.

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  • lightandwind
    lightandwind Member Posts: 754
    edited February 2013

    wow! That is Amazing Gracie! Thank you so much for posting this. Keep on keepin on!Smile

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  • Momine
    Momine Member Posts: 7,859
    edited February 2013

    Gracie, that is wonderful. May I ask if you were diabetic or pre-diabetic? If not, have you had any problems with the metformin, in the form of hypoglycemic events or similar?

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2013

    gracie, we couldn't be more pleased for you! Congratulations on your news!

    • Your Mods

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  • HLB
    HLB Member Posts: 1,760
    edited February 2013

    Thank you very much for sharing this information! I hope your good results continue and your SEs lessen!

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  • leggo
    leggo Member Posts: 3,293
    edited February 2013

    Thank you ladies for your well wishes. I have no illusions to reach NED, but considering a little over three years ago I was sitting in palliative care waiting to die, I am truly fortunate.

    Glad to hear your doing well Athena. To answer your questions, as Bren mentioned the grape seed has the benefit as an AI, but that's not why I take it, (though that might be a bonus). I had a blood clot in my lung last year and have since been on daily Fragmin which seriously weakened my veins and blood vessels. Grape seed extract is supposed to help strengthen them, and from what I can tell it's working. I've had many instances where the contrast dye for CT's has blown up my vien and gone interstitial. Since taking the grape seed extract, that hasn't happened so I hope it's working...seems to be. It comes in pill form. Regarding the Vitamin D, I'm still not convinced that anyone knows the proper amount, and I have to be very careful about getting too much because of having only one kidney and all the calcium in my blood stream due to bone mets. I seemed to be quite nauseous when I did take it, so I stopped. Right now I feel I get enough by sitting in the sun and through diet....I hope. In any event, it seems to be a little toxic for me in higher doses.

    Momine, no I am not diabetic or pre-diabetic. Just saw some studies of how helpful metformin can be for breast and prostate cancer and that's enough for me. No high or low blood sugar events....just serious diarrhea and slight stomach upset, but small price to pay for me. I did lose about 15 pounds since taking it, which was a little worriesome, but I've been told that does happen to some and I had the weight to lose, so that's ok with me too.

    Bren, I got a little chuckle when you said the statin could cause short-term memory loss. I've always been the one who gets every side-effect known to man from every drug and when my doctor mentioned the memory loss I thought for sure I'd end up wondering what happened five minutes ago. Fortunately, I have a memory like a steel trap and so far, my memory has not been affected. How did that happen?? Yay me!! I managed to dodge one single side-effect bullet.

    Also, forgot to mention that I do take 2 teaspoons of apple cider vinegar a day. I can't say wether or not it helped my health, but my blood pressure has dropped, which I guess some take it for. For me though, my blood pressure could have dropped for any number of reasons, and I'm quite sure it was removing that damn adrenal tumor, so I'm not sure it was the vinegar. A friend suggested it, thought it couldn't hurt, and gave me the benefit of great skin, so I'm continuing. If it works on the outside, maybe it helps on the inside? 

    Best wishes to all.

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  • Momine
    Momine Member Posts: 7,859
    edited February 2013

    Gracie, thanks so much for the info. My onc won't put me on metformin, because he is afraid that I will become hypoglycemic. My blood sugar is hovering right on the edge of pre-diabetic. On the other hand, I do not have much extra weight right now (OK, none really). 

    Anyway, I am so glad that this is working for you. Most excellent!

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  • HLB
    HLB Member Posts: 1,760
    edited March 2013

    Can you tell me what exactly the acv did for your skin? That's the 2nd time I've seen it mentioned and I'm curious. There seems to be so many benefits but I could just hurl when I take it no matter how hard I try!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    Gracie - thank you for sharing here. I have spent the morning reading the DCA research and am considering it along with the two AIs the oncologist has rx'd.  Both oncs said no chemo, rads, surgery at this point.  I would imagine if the mets are NED then it would be all right to reduce the DCA amount or take a few months off.  I will read more.  The experiences of others are the best info.  So thank you so much!

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited March 2013

    Hi Gracie,

    You tickle me to no end!  I'm glad your memory is still intact ... mine is shot and I have nothing to blame it on except old age.

    love ya,

    Bren

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  • leggo
    leggo Member Posts: 3,293
    edited March 2013

    HLB, sorry for the delayed response. As for the skin benefits of the ACV, what I really noticed was that my hands and face were full of age spots and my face looked grey. I blame the chemo, but who knows. Anyhoo, the "pink" came back and the spots faded and my skin just has a better texture over all. You're right....it's disgusting. I drown it in honey or mix it in with my tea. If you add enough honey and lemon to your tea, it's do-able, but for the most part I just want to choke it down and get it over with. I had a lot of issues with nausea and it helped that as well (at least I think so...it's so hard to nail this stuff down sometimes when it's all trial and error).

    Bren Laughing

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  • HLB
    HLB Member Posts: 1,760
    edited March 2013

    Thank you! Maybe I will try again. I have brown spots on my face I've been using porcelana on for months and nothing is happening.

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