Treating estrogen responsive cancer naturally
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I did not take tamoxifen. My family was ok with it but the onc was not happy, and for 5 years he reminded me every time! But he said it is ultimately my decision and he has to tell me the risks and then respect my decision. I can't believe when I see people who have doctors that refuse to see them again and get angry about it!
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Kath - Can you tell me what concerns you about Tamox. and the AI's? I don't want to take them any more myself; am wondering if your reasons are similar to mine.
I am seeing a new Onc. tomorrow primarily just to get her opinion, if she can digest my path reports and paperwork, on my decision. I am seeking greater peace with it. We shall see where it goes............
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My doc is much like yours HLB. Mybee, I haven't taken the Tamox prescribed to me, but I had horrible SE's with the AI's. My reactions were enough that they have them listed as allergies. I haven't any problems with the DIM and other supplements I take.
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My MO was neutral. In fact, he mentioned that if I wanted to try Arimidex, I probably could, but that the SE's would be similar. He didn't make me feel like a loser because of my current choices. If any of my doctors refused to see me because I didn't follow their recommendations, I would be glad to part ways with them. It would mean we didn't see eye to eye and they would not be the doctors for me anyway!
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Hi mybe333,
My main concern with Tamoxifen (and I have not read as comprehensively on the subject as so many others on this forum) is the increased risk of developing other cancers, eye damage, etc., weighed against what seems to be only a slightly decreased risk of the original cancer returning. The day-to-day side effects also worry me - it sounds like you experience the worst menopausal symptoms endlessly. There are apparently other issues with AIs, such as increased risk of heart disease and osteoporosis.
Though I have had a relatively easy ride with the chemo, I still feel poisoned, and can't face the idea of having any more toxins in my body - it seems completely counter-intuitive to treat disease in this way.
Good luck!
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Kath100 - I feel the same way.
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"There are several video's out there that all the exercise are done sitting down with light weights."
Hi Ladies
I have been searching these threads that I used to frequent and looking for a good supplements for circulation. I am thinking GSE but my B.P is already low . ( Has it lowered anyones ?)
In any case, I came across the above well- intentioned comment in italics . As a side note, I did not follow it , but, my message is to PLEASE be careful about lifting weigts out of the blue. Now that I have lymphedema, I know better . In fact, be very careful of lifting heavy items with your ' affected arm'. We are all at risk, and unlike cancer which we HOPE will be a part of the past, LE hangs around.
Just a cautionary note . be well!0 -
Purple, good warning. I have extremely mild and under control lymphedema. I do lift weights, but light ones, regularly and wearing sleeve and gauntlet. I also avoid exercises that puts a lot of stress on the arms. From what I have read, it is OK, but you need to go slow, be careful and do exercise regularly (not stop and start).
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I've switched Primary care doctors this year, but neither one of them had anything negative to say about my decision to stop tamoxifen after 3 years and then after 2 months of aromasin, I decided that I was done with all meds that would affect estrogen in my body. I want to keep whatever little my body is still making after going through menopause recently. One of them said I was perfectly within reason, given my early stage cancer and the other said it was completely my decision. The GYN has no opinion, and the Onc is the only one who advocates following the protocol. Next time I see him, I'll have to let him know that I've stopped already for several months.
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Right, momine and the sleeve and gauntlet or glove is essential as well as the green light from your LE therapist , PT or DR. Slow and steady wins the race when it comes to LE.
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It seems so weird looking back, but in 1982 when I had my mastectomy with 17 nodes removed I did have some swelling - around the arm and down to my waist. But the surgeon never acted concerned so I wasn't worried either. It lasted almost a year, but luckily never kept me from getting back to my 45 miles a week of running and almost weekly races.
Ah---those were the days - I try so hard to recapture at least some of that, but I guess I'm too old. I was talking to my son about a knee replacement and the said "But Mom, you said it only bothers you when you go downstairs and that you can't do deep knee bends, right? I don't think the ortho would approve a knee replacement for a 76 year old women who wants to do knee bends. You would have to be a lot worse off; like not being able to walk without pain"
Hm- maybe he will understand when he gets to be my age. We want to keep as active as possible as long as possible and if something can be corrected (like a knee) why not do it?
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Wow dogs !
Sure seems like you were very lucky.As for the knee replacement, I DO think you would be approved. If you want more details as to why, feel free to PM me .
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dogsandjogs, I agree with purple! I messed up my knee last December about 2 weeks after chemo was done. At 47, I felt like I was 100. Every time I went downstairs it hurt and every time I got up after sitting for a bit I was hobbling until it adjusted itself. I was WAY lucky in that somehow it healed about a week before I was suppose to have surgery. I believe it took 3 months for me. You have (if all goes well ;-)) 10 or even 20 years and it would be great to have your knee top notch. If you're healthy, I'd say go for it! Odds are it will slowly get worse and the older you are when you may have to fix it, the harder it may be to rehabilitate, etc.
Just my opinion.
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My primary also agrees with my decision not to do the Tamox, although she phrases it as if I were in your postion I would probably do the same thing for CYA purposes, I'm sure.
Purple - I almost gave an Urgent Care nurse a heart attack today. I'm really sick and ended up at Urgent Care. She put the BP cuff on me and hit the switch to start it. Through the flu fog it dawned on me it was my right arm. I jumped up and practically screamed NO and ripped it off my arm. The nurse apparently didn't look at my chart closely to see it was my right side I had the surgery on, and when she asked me for my arm I lifted it withour thinking. She didn't realize why I jumped all of a sudden and ripped it off. She probably thought I was a psych patient.
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Through the flu fog it dawned on me it was my right arm. I jumped up and practically screamed NO and ripped it off my arm.
Good for you, Mini!
You can't be too careful. Hope you get better soon...it is really going around .0 -
Thanks Rockym! I like that attitude - I'm going to do some research as soon as my arm fracture heals ---
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I don't think you have to be "bad off" to get a knee replacement. If you are healthy enough to tolerate the surgery, go for it! If you wait til its really bad, who knows how the rest of your health will be then, and they will refuse to do it if there's too much risk. Its affecting your QOL, since you like to be active, and being less active will affect your health, and its a viscious cycle!
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That's exactly how I feel! Thanks for your input--
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Dogs - I worked with a woman in her early 60's who needed a knee replacement and her doctor kept telling her she was too young; that it would only last her about 10-15 years and she'd likely have to have it replaced again and he thought she sould wait a few years more. My MIL had hers done in her early 70's and was like a new woman afterwards. She went from barely being able to get around to running all over. IMHO I think your level of fitness and pertinent health issues, if any, should be the deciding factors, not your age.
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Nice to hear that! I agree. I am pretty healthy aside from high BP and off and on Atrial Fibrillation. When I don't have a broken bone I exercise daily, walk dogs, jog, etc. etc.
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Thank you for sharing this info. I had a lumpectomy in August 2012, then another one to get clear margins in September and ovaries removed in November. I've chosen to do no radiation, chemo or tamoxifen. I changed to vegan in August. Lost 25 pounds naturally since then. I was 150 now 125. I'm reading books about treating bc with nutrition and some supplements. I'm looking for others who have chosen the natural way and have been successful. Please share your stories and success.
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Thats inspirational!
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Hi Venice, I am doing the healthy eating and supplements and natural alternatives but I am also taking letrozole and Xgeva, so its impossible to know how much each thing is contributing. Dx with mets 6 months ago with ca27-29 at 116 and now it is 33. I lost a little weight too just by stopping the junk I was eating. I have been sticking to eating nothing from a box or can except uncle sam cereal, no sugar, no microwave, pretty much eating produce and nuts and allow myself one day a week of "cheating". What books are you reading and what supplements are you taking?
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HLB
So sorry to hear about the mets DX.Can you please explain what this means :
with ca27-29 at 116 and now it is 33Best wishes to you!
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I was told 38 but whatever, I will take it!
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I did radiation (although now I wish I hadn't). I tried the AI's and had terrible SE's. I have refused to try the Tamox. Too many scary SE's. I take DIM, Astralgus, Rx Vitamin D (50k IU 1x a week), biotin, turmeric, pycnogenol (for vanity purposes, not CA, lol), probiotics, calcium, low dose melotonin and low dose aspirin. I go to see my MO tomorrow for my quarterly appointment. So far, all my blood work has been right down the middle of the acceptable levels accept my alkaline phosphates which are high, but that's related to another issue I have. I know it's not been that long (9 months), but hopefully things will continue on this good note. :-)
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Thanks for that explanation, Day!
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Well, endo office called about tests. I need more T3 T4 in afternoon now. Also upping my B12, as it was low. All else good. The 100 mg progesterone cream, natural, is fine too. I am doing well but my memory seems to fail when I am stressed so I need to avoid stressors. I wish I had not waited so long to check on natural horomones for ER and PR + cancer. I could have been safer for longer, had I started sooner.
LOVEEssa
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I thought progesterone creams were a no-no for us???
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