Hello to all the Natural Girls hoping to get some Advice

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mmm5
mmm5 Member Posts: 1,470
edited June 2014 in Complementary and Holistic Medicine and Treatment

Good Morning Ladies-

I have always read your threads and believe in much of what I have read here. Yesterday was a last straw for me and I stayed up reading much of your discussions. (you are right it is like reading a bood).

My Story (try to make it short), I was dxed 4/08 stage 1 (no nodes, no LVI) triple positive, had bimx, TCH, (herceptin for the year) and finished that treatment 5/09. Chemo put me into menopause and I started Arimidex in OCT as well as enrolled in the SWOG (bisphos trial) at that time. By February I had such intense pain in my low back and hips I had 3 MRI's no cancer. They took me off of Arimidex and started Femara (it was ok, still felt crappy)

By May it looked as though my ovaries were waking back up, in July they took me off Femara and retested hormones, and my Estradiol was back up to 80 vs 10 while on Arimidex.

I went to see my 2nd opinion ONC who I trust and he felt I should go off AI's and just shut down the ovaries to see if I could tolerate that. Well it was good at first as initially when you turn off ovaries they get stimulated and I felt great, no pains etc. then by the 3rd injection I feel awful again, intense, muscle, bone, and joint pain and general malaise. Don't feel like I want to do anything.

I am considering going off of these nightmare meds and going natural, I have a good naturopath that works with an ONC and she had good instincts. My tumor was small and only 16% ER positive very borderline, however my PR was 35% positive.

My instincts say my most important treatment was the Herceptin and I finished all of it.

I was a very fit 42 year old when dxed and had a full life, the problem is I must do everything I can do to fight reocurrance I have 3 small boys, one of which is a juvenile diabetic and he needs me for daily care. I am so afraid to stop, but my life seems on a serious downward spiral if I stay on these drugs.

I have a scientific mind MS in Health Pshyc, but a VERY open mind to what works. I am very inspired by Vivre and Fairey's imput on how "good"they feel and I want that again and believe it can be achieved.

Please weigh in I appreciate all feedback and have thick skin!!!

Thanks in Advance - you all seem like a great group of kind ladies.

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  • mmm5
    mmm5 Member Posts: 1,470
    edited December 2009

    Oh I hope I did not offend with this question, I am going to bump and see if there is anyone out there that has had similare experience on Estrogen deprivation, and or they have restored themselves to feeling good doing the balancing?

    Bump Bump Anyone??

    I bought Dr. Lee's book today

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  • rreynolds1
    rreynolds1 Member Posts: 450
    edited December 2009

    mmm5,

    I am the mom of 2 type 1 diabetic sons so I know what your mean when you say that you are needed.  My sons are adults now but I still worry. 

    I am on Arimidex as I am 59 and post menopausal.  2 months ago I stated with progesterone creme and I can feel the difference.  I have less joint pain and am sleeping better.  I suggest you find a doctor who specializes in integrated medicine rather than doing it on your own.  Purchase the book, "Beating Cancer With Nutrition".  I found it on Amazon.com.  In the back it has a list of integrated docs by location and that's where I found mine.

    Good luck and please keep me posted.

    Roseann

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  • dlb823
    dlb823 Member Posts: 9,430
    edited December 2009

    I am far from an expert, but I think any time you deprive your body of estrogen, your joints and muscles are going to suffer.  I had been on HRT and developed joint pain as soon as I had to get off of it, shortly after I was dx'd.  Then Taxotere hit my muscles and joints especially hard, probably because of the severe drop in my estrogen levels I was already experiencing from  stopping HRT.  Femara was horrible, so I refused to stay on it.  I'm using I3C in lieu of Femara, and I would love to tell you that all of my pain is gone, but it's not.  The difference is, with Femara (or another A/I) I would be blocking every last bit of estrogen I have, which my PCP does not feel is good for the rest of our body.  I3C (or DIM or Myomin), on the other hand, are estrogen modulators, preventing the bad estrogen from getting used to fuel breast cancer, but not totally blocking all estrogen from being used where it's needed. 

    As you may have read within the Natural Girls thread, quite a few of us who have approached our oncs about not taking Tamox or an A/I have not had nearly the resistance we'd anticipated.  But I am also post menopausal which makes a big difference in the amount of estrogen I need to block or modulate compared someone who is still pre menopausal.     Deanna

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  • mmm5
    mmm5 Member Posts: 1,470
    edited December 2009

    Thanks to both of you, very helpful. I do think I need an integrative Doc and will ask my PCP about that tomorrow.

    Can I ask you ladies if you have your estradiol checked and if so what does it run being off the AI's?

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  • dlb823
    dlb823 Member Posts: 9,430
    edited December 2009

    I've had mine checked twice -- both times <10, which is what I believe they hope to accomplish with an A/I.  I have recently added just a tad bit of progesterone, and will have my hormone levels re-tested in January.    Deanna

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  • vivre
    vivre Member Posts: 2,167
    edited December 2009

    MMM-Don't give up the fight! I found that with each step I became more confident. I too at first was very afraid to go this route, but that little voice in the back of my head kept telling me to keep going. It was through books that I got reinforcement, since there was no natural girls thread here, just a few people like me, trying to survive. We seem to always be confronted with the naysayers but we persevered, and that is what you must do. Educate yourself. Get to the library and read all you can on good health. Forget about reading about cancer, too depressing. Read about good health. Every book I read, I learn something new and I keep changing things as  I go along. I have gone through lots of doctors, learning something new from them all. They all have different opinions, so I try what they say, and if it works, I will trust it. My "proof" has been to keep getting blood and urine tests done to see if my numbers change, and the way I feel. I know it sounds impossible, but I am not just saying this to brag, but I really do feel better than before bc. I have not got it all figured out yet. I am still wrestling with a couple of issues, like being cold, and worrying about my amalgam fillings and such, but I really have a lot of energy. I no longer have that fuzzy brain thing trying to remember names, and I look fit. I was a PE teacher, so I was always into exercise, but I think I am in better shape now than when I was in a dance troupe in college and taking fitness classes all day. Even though I was exercising then, my hormones were so out of whack and my diet was so poor that I felt lethargic all the time. I may not have the muscle tone I had when I was dancing and doing sports all day, but my body is healthier on the inside that I ever was back then. I just wish I knew then what I know now.

    Do do not give up MMM. The first books I read were:

    The Wisdom of Menopause, by Dr Christianne Northrup,

    What Your doctor doesn't know about nutrtion. . . , by Dr. Ray Strand

    Your Life in Your Hands, by Dr. Jane Plant

    I now have a stack as tall as me, so I will let you get started before I give you anymore. LOL

    Reading has been my motivation. After all, I figure doctors learned everything they know from books, so why can't I? And keep shopping around until you find a doctor or doctors who you connect with and who really knows what they are doing.

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  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited December 2009

    Great advice from everyone... I can't think of anything to add, other than be sure you're exercising, and getting enough sleep and make sure it's in total darkness -- great tip for naturally balancing estrogen, progesterone, cortisol and other hormones! WELCOME to our little group!! So good to have you here!!

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  • MiracleMileM
    MiracleMileM Member Posts: 103
    edited January 2010

    I am a stage IV on herceptin, Zometa & arimidex and for the moment NED.  Though you are not now on arimidex, this is what I took to address the terrible muscle and joint pains that I think came from the arimdex that you might consider for your pain:  I upped my D3 from 2M to 4M a day (plus what comes in the multi plus calcium), I upped the joint support (TJ) from one to four tabs a day (2400 glucosamine, 1600 chondroitin, 2400 MSM), and added a curcumin tablet (500 mg) to the teaspoon of tumeric a day I take mixed in with some peanut butter, black pepper and jam.  Something or all of that mix helped to bring the pain down to a mildly creaky level.   

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  • Yazmin
    Yazmin Member Posts: 840
    edited January 2010

    mm5: great advice, indeed, from everyone. Like Deanna, I am using DIM, after turning down Tamoxifen 4 years ago. So far, Evening Primrose Oil is keeping my hot flashes at bay. And that's the only discomfort I have been experiencing.

    I have said it before: after being diagnosed, I changed my lifestyle 360 degrees. I eat almost exclusively organic; I never fail to consume my turmeric with black pepper (which activates Turmeric) in the morning with my boiled organic eggs, along with my green jasmine tea with lemon juice (which activates green tea). I take well-researched supplements (this forum has played a huge part in providing me with the right information on supplements). Lately, I have added Gamma Tocotrienols to my regimen, which includes the Stamets mushroom blend, 1 good multivitamin morning and evening, and a host of other supplements.

    Before changing my lifestyle, I used to get a flu, or cold, or congestion every 2 months; I was allergic to everything, my nostrils were permanently clogged, I was plagued by permanent hay fever, etc...I also had terrible irritable bowel, which made it impossible for me to digest just about anything.

    For at least 2 decades, countless visits to ENT doctors and Gastro-enterogists failed to help. Cry

    .....................Until I got the cancer wake-up call 4 years ago: I finally realized that medicine was powerless in my case because this was all a lifestyle issue.

    If this is any indication: (1) I was recently given a clean bill of health by the Cancer Treatment Center of America in Philadelphia, after very extensive testing; the only advice they had for me was: "keep up the good work, you don't need any treatment." 

    .....and (2) I have now been going 9 (nine) months without "coming down" with anything (and I am anti-flu-shots): No flus, no colds, no upper respiratory allergies, not the slightest little chest congestion, no pain, no discomfort of any kind.... in 9 months. ........And my energy level continues to be "through the roof". I just returned from a 13,800 miles (total) "trekk" on 3 continents and you know what? I have remained strong and very energetic the WHOLE time. AND best of all:  NO Stomach discomfort at all, despite the long trip. DID NOT CATCH THE SLIGHTEST LITTLE STOMACH BUG (all I did was to stay on ConsumerLab-recommended probiotics). No Immodium or any similar medicine. I also turned down malaria medicine.

    Did not even run a temperature on this long trip. Sometimes, I feel like Super-Woman. I am not Super-Woman: I am a woman on the right diet and supplements Smile, which seem to be making my immune-system super-strong (or how come I am doing so well?) I am touching wood in saying that, of course.

    So if there are any doubts that diet and supplementation make the difference between good health and illness (including cancer), I am living proof, I think.......

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