Treating estrogen responsive cancer naturally
Comments
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I didn't think to report the Aromasin, but will do it now. My onc admitted there were SEs, but downplayed them.
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My Onc downplayed them too - BUT - she did tell me 40% of patients experience SEs - which I told her was A LOT! im just glad im off of them. I can only pray for better drugs in the future! Im almost thankful that my SEs WERE so severe, because I feel SO much better NOT being on it. I also mistrust the idea that eliminating all estrogen from the body is what is necessary to remaine cancer free. This is a powerful drug - taking 3 months to fully leave my body. I still have some stiffness in my hands that I hope will resolve.
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I had horrid SE's. So bad they have the drugs down as allergies. I had every symptom you could imagine. From the minor to the major ones. Personally, I wouldn't do a pre-emptive mastectomy; especially with an Onc score of 10 (mine was 18 and I had a lumpectomy). I did do rads, but if I had to do it over again I wouldn't. If mine comes back, I might consider it. Right now I'm avoiding sugar except raw stevia and xorbitol (sp?), juicing major greens, eataing only hormone free eggs, cutting dairy, eating grass-fed, hormone free meat, taking DIM and other supplements and trying my best to avoid all things processed. I'm talking to my doc about major dose vitamin C infusions (recommended by my nutritionist).
I do think sometimes about what might happen by not taking the meds, but for me, I think I would worry more about other cancers, blood clots, etc., and that's not even the "minor" SE's like the aches and pains, fatigue, memory loss, etc.
I've had people tell me I should do things another way. I even filled the Rx for a 3rd drug. It's still sitting in my cpboard. I can't bring myself to take it. I feel like I'm doing what is right. And when all is said and done, all I can do is what I believe is best for me. My hsband, btw, had testicular cancer and chose the traditional route. It's been almost 30 years now and no recurrence. He is fine with his choices and I'm fine with mine. Only time will tell for me if I'm as successful as my husband was.
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- BUT - she did tell me 40% of patients experience SEs
imagine ,.thats only what is reported !
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I bet if men ahd to take them they´d find better drugs a lot faster, or at least listen to us more about the SE´s and work on dosage/strength modification......instead we are all hit with a hormone sledgehammer no matter our size or fat ratios....
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So bloody true! We can't win.
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I read that for every 1 person that will lodge a complaint there are 24 that don't. Figure that in the equation and it throws a whole new light on the 40% figure. I'm sure we all know people that can't take or use something that we do. I can't take ibuprofen. I've never reported my side effects. I just don't take it.
And I agree, if 99% of men got breast cancer and 1% of women, we'd be a lot further down the road to a cure. And you wouldn't see a bunch of blue crap with "save the moobs" or "fight like a boy" on it. You see how fast they managed to create the "little blue pill" when increasing numbers of men had a need for it. Arghhh.
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And I agree, if 99% of men got breast cancer and 1% of women, we'd be a lot further down the road to a cure
I SOOO agree !0 -
I never thought about that, Mini1.
True! You don't see men running around with blue ribbons, celebrating prostate cancer awareness, buying blue crap they don't need. This pink stuff is so embarassing.
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So true!!!
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Just once I'd like to see a "Save the Nads" t-shirt. Anyone know the color of the testicular cancer ribbon without looking it up? Or ever heard of a testicular cancer awareness month? Personally, the only BC shirt I would wear is the one that says "Stop Pimpin' the Pink." We're a big money maker; especially in October.
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We're a big money maker; especially in October.
Dont get me going! How many people who walk and wear pink give a hoot about lymphedema? How many BIG name fundraisers are out there telling it like it is for lymphedema.None.
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I sent in the following to the "Tell Us" department of our city's local paper.
Shortly after enduring a costly operation for cancer, I received a letter from the American Cancer Society.
Thinking it was perhaps a list of services that they provide for cancer patients, or maybe an offer of assistance, or even a get-well card, I opened the letter to find a request for a donation!
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There were no responses to the article, but I felt so good just writing it and have saved it all these years.
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I am hoping someone can answer a question about seeing the oncologist. If I have already decided against taking Tamoxifen then will the Oncologist have no reason to see me again and monitor me after I inform him of that? I am taking DIM and Vitamin D. Can someone with more experience with taking the natural route tell me what their relationship with their oncologist is like, if any? I mean, what does the oncologist do if you are not taking their recommendation?
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You can report drug side effects (and read what others have reported) at: www.rxisk.org
I have been on their site many times reading about various side effects.
Sending good thoughts
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Mini, love your T-shirt slogan: "Stop Pimpin' the Pink." Also agree in general on the sorry state of BC care and medications. I had a bout of dyspnea last summer, and after the docs could find no cause, I suggested it might be the femara. They all poo-pooed that. One suggested that it was probably just "anxiety" (grrrrrrr! and, on the theme here, would they tell a guy that?). I tried to tell him that I had experienced anxiety when first DXed, and this was definitely not it. My surgeon thought it was after-effects of treatment, but that doesn't really make any sense either, since a CT came out clean, and any lung damage from rads would have shown up there (I asked), plus my heart U/S showed my heart in tip-top shape.
Yeah, I am still a bit steamed
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Lets get that T shirt made !
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I wondered if my doc would see me after I refused the meds since he is definitely pro meds, but he didn't. He told me that all he could do is recommend what he think is best and the decision was mine to make. I heard my regular doc say under her breath that I was doing the same thing she would. I have heard of others who have been refused. If you have a choice, than I'd find another one who will accept your decision. A few don't have a lot of options due to where they live, so unfortunately they have to lie and say they are taking it when they aren't.
Someone asked me why I go if I don't take the meds. I go qarterly because they still check my tumor markers, but I refuse the chest xrays. Needless rads to me unless I have symptoms that warrant one. Some docs poo poo the tumor markers, but they found the tumor in my husbands chest weeks, even months before it would have been found due to the pain it would have eventually caused. It had already spread into the lymph glands in his chest and would have been much worse w/o the tests. I go quarterly now. Eventually that will stretch out to every 6 months and then, Lord willing, once a year. I have other conditions as well, so this gets everything measured and monitored at one time. I just have them send my records to my regular doc and she has all the info.
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Mini I did the same thing. Tefused tamox but I still saw the onc for 8 uears and got TMs which is how I found mets before I had any symptoms. I also refused chest xrays and bone density. Not going to take fosamax anywaay so whay bother. Of course now I'm on xgeva.
Dellah I have a friend who had a very bad reaction to levaquin and he is on disabilty. This was a tall handsome Man who we used to call him and his friend "the kennedys" and he was a drug rep. He was in the newspaper with his story once. He lost so much weight he was emaciated.0 -
I don't see my onc. He still wanted to see me after I quit Aromasin, but I see my cardiologist every few months so he can do the blood tests. I also see my internist twice a year and he can do blood tests as well. Every visit to the onc was so expensive, I have to pay 20 percent, so I decided I really didn't need three doctors.
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and got TMs
Mine have never been checked. I resume that is blood tests ? If so , what kind exactly ?
Thanks for any clarification.0 -
TM´s are tumour markers
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Yes, I presumed tat . Thank you. But, how do they 'find ' the TM - is it through bloodwork and if so , does the lab work have a specific name ?
THX again!0 -
Purple, there are several tumor marker tests to check specific indicators. I suspect they measure some kind of protein, but I don't actually know. My doc checks CEA, CA 15-3 and CA 125.
Thing is that CA 125, for example, is not reliable unless you are in menopause, and all of these TMs have sketchy reliability. You can get a high CA 125 reading if you have had a cold, for example (happened twice to my poor mother).
My doc uses them, because it is one more tool, even if it is not a particularly good one. Also, I had extensive lympho-vascular invasion, i.e. high risk of recurrence/mets.
In your case, with an early stage cancer and no nodes, TMs would probably be overkill.
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It is a blood test the Dr's do. I have mine checked every 6 months. Many Dr's as I understand it don't do them. I personally find it nerve racking waiting till the results come in. I had them done on Thursday and hope to find out on Monday!!!
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The one I get ca (cancer antigen) 27-29. I measure a certain antigen in the blood that is present with cancer. Any number 38 or under is considered normal. Mine were always in the 20s for 8 years then suddenly went too 77, so we did scans and the bone mets were found. They aren't reliable for everyone but for me they are so I was glad to get them. If I would simply wait for symptoms I would have had pain and who knows what else, like surgical procedures on the spine or rads. All I had to do was go on letrozole and xgeva and now they are back down to 30. Not to mention if I waited for symptoms it might have had tome to spread to another organ. If you want to get them done you almost have to do a few in a row to see how they trend. Some people do find it gives anxiety to wait for results, but after awhile I got to the point where I didn't worry at all. I even stopped checking the results assuming it would be normal. Sure enough that's when it went up :-(. Idk how long it would have taken to get symptoms but I definitely feel like I got a good head start on treating it and keeping it where its at for awhile.
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Thank you ladies for answering my question. Happy Mothers Day!
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I have begun taking DIM Plus, enhanced absorbtion since I can't take tamoxifen. Has anyone on here had any experience with this? Any other supplements I should be looking at besides Zinc, flaxseed, B vitamines? I could use any help. The "low estrogen diet" is confusing for me. Oh, and I am gaining weight, my face is breaking out, and my face and hair are now oily, but I am persistently told that I am not menapausal. ???? Help???
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I went to a raw foods class today and was amazed. When I was reading that we should be eating 70% raw food, all I could see is me eating salad all day. Blech. Boy was I wrong. We made raw food donut holes, guacamole wraps, sorbet, ice cream sandwiches, smoothies, and raw brownies. All quick, easy and delicious. My son made a "key lime pie" with avacodes. I swear in a blind taste test you would never know you were eating raw food. I'm telling you, it was all delicious!
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In your case, with an early stage cancer and no nodes, TMs would probably be overkill.
Thanks for the reply, Momine. Seems it will be just on more thing that I skip. Blood tests are not high up on my ' to do ' list as I have lymphedema. Thank you.
Happy Mothers day to all moms !
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