Treating estrogen responsive cancer naturally
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Well said Venice joy. I agree completely.
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Venice, I don't think its crazy at all. I refused to take tamoxifen too. I have mets now so I'm too scared not to take the AI and luckily don't have SEs. I'm doing pretty much what you are doing with my diet and some other alternatives and supplements as well. I think the treatments options leave a lot to be desired so we have to do the best we can to keep our system strong and healthy overall.
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In the end I respect those who choose the traditional treatment. Each one of us needs to decide what is best for our bodies. Either way has a sense of what I call "gamble." Big hug to all!
Doesnt sound a tad bit crazy to me !0 -
Me Neither - listening to our bodies is the first sensible thing ive heard all year..........
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So had my appt with the Onc today - except they made it with the FNP instead. I should have rescheduled, but im an hour 1/2 away..... So I gave her my long list of SEs.....which she went thru every one and essentially discounted, attributing them to everything BUT aromasin. 3 times she said - I BELIEVE you when you say you are having these side effects.....like she didnt believe me..... I finally said - why would ANYONE make this up? If i didnt want to take this pill, i would stop, I wouldnt make things up and come back in.
It was so frustrating. I walked out so angry - her options - were to go on Tamox (no thx) or wait 2 more weeks till I feel better then take the Aromasin again..... I said "Id have to be a crazy person to wait until i feel better, then take the drug that made me feel like im 80 - id rather be dead."
Its just so frustrating that this is what she had to offer. Thats all they have. Its not her fault - im just so pissed. She also said that the SEs could have unleashed some undiagnosed arthritis or fibromyalgia and I could be stuck feeling like this. SHe couldnt explain the heart palpitations, except to say they were anxiety attacks. ? they werent.
Making appt with my ND tomorrow......and looking forward to hearing something positive. Ill keep yall posted. Sorry for the rant -0 -
Shayne, I don't know the history, but why did she only offer tamox and not a different AI? Have you already been through the different AIs?
My docs are very concerned about keeping me on the femara, because of its proven efficacy and my advanced cancer, but they ask at every single appointment how I am doing with it, how the SEs are treating me and whether I feel I can deal with it.
I am sorry you had such an annoying and unproductive meeting.
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I havent been thru the AIs. just this one. Other than tamox, she said I could take a break and go back on Aromasin. I didnt ask her about the other AIs.
Now when i think about the visit with the Onc after I had been 3months on the AI, I tried to talk about the fatigue and weight gain, and she wouldnt really talk about it. Its like they dont want me to blame anything on the drug itself.
Ive decided I need to look for another Onc - or just be followed by my ND and the Physicans Assistant I see for my gyn exams. Its ridiculous to put myself thru this stress.
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Shayne, that is ridiculous, unless there is some medical reason why you can't take the other AIs. My doctors keep reminding me that if I can't deal with the femara, we can try some of the other ones. They all work in similar ways, but the SEs can differ a great deal from one drug to another.
Granted, my cancer was far more advanced than yours, so they are very concerned about keeping me on the medication. But I still think your onc or his nurse ought to be taking your concerns more seriously and offer solutions.
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why did she only offer tamox and not a different AI?
Momine
I see Shayne replied, but I just want to add that when I told my DRS I would not take Als due to the fact my osteopenia is bordering on osteoporosis , they offered me tamox. right away and I said no ( Other health issues) NOR did I have rads ( though I DO now have LE!)
In any case, I am sorry for how they treated Shayne and I think it it not uncommon.,My Harvard trained, 25 yr experience BS then said :"How about Evista ?" I replied : " But that is not for tx of BC , it might be preventative but certainly not for TX.."
She said :" Oh, they dont really know anything about any of these pills anyhow as for TX!!"
How reassuring!
Later, I thought...who is the ' they' ? Isnt she a part of the ' they "?
My story is so hard to believe , but sometimes truth is stranger than fiction.As Shayne asked : " Why lie ?"
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The thought that came over me as she said for the third time - "I believe that you are having these side effects....." is that "they" need to report SEs - and if she can discount each one of them to something Im doing, or to some underlying health issue brought out by the AIs....then all is well in the drug world.
The other thing - AROMASIN has not be FDA approved for DCIS patients - of which I am. Call me a conspiracy theorist.....but something aint right. I just have never been treated like this. And when I think of it, when i came in for my 3mo check with the Onc, told her about my severe fatigue and weight gain.....she brushed it off and offered no solutions. Im beyond frustrated in this moment. I dont know whether to ask my Rad Doc for a recommendation for an Onc......or to just see my ND and do follow up with a MD or my NP.....? Do I really need to see an Onc?
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You know, ladies, it has been on my mind a lot lately.
I wonder if all these studies about the effects of Tamoxifen and AIs took into consideration the change of lifestyle and diet of the BC patients/survivors. Everywhere I look in this forum, everybody has made lifestyle and diet changes, no more sugar, no more gluten, no more meat, not more etc, taking supplements, exercising and the whole shebang. The studies tote a 30% to 60% but we all know it's the relative, not the absolute percentage, and the real percentage is actually at most 5%. What if it's the lifestyle and diet change that is responsible for all these good results, and not so much Tamoxifen and/or the AIs?
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My thoughts exactly DAY! I dont think we will ever hear from the medical community on that one either.
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And Shayne - evenif it's an underlying health issue that has been triggered into acute or chronic phase by the AI, when otherwise it would have been there for a loooong time not giving you any problem because it was such a small issue, what's the difference? It's still a side effect of the AI. That is exactly what I told that POS rheumatologist who was trying to convince me that the arthritis that I got since being on the AIs was probably there to start with and it's my age and bla bla bla. I told him - so you're saying that if I wouldn't have taken the AI this wouldn't have happened for another 20 years or so, right? He started stuttering at that one.
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Right! Im 54 - I feel like im 84!! But hey, I would have gotten arthritis anyway, so what the hell.
I love when I get them stuttering.......lol
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Purple, I hear you, but apparently Shayne does not have some medical reason why she would be limited to aromasin or tamox.
Shayne, I really think you ought to find another onc. One you can have a rational discussion with.
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To be honest - I didnt ask about other AIs. We just didnt get there and I think I pretty much shut down when i realized i wasnt being heard.
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Shayne, I totally get that, but all the more reason to find a different onc who can talk this through with you in a reasonable way.
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Yes, I understand Momine but generally speaking the ALs do have similar SEs . In any case, best of luck to you Shayne !
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Isn't aromasin a steroid and the other AIs not? I would think that could make a huge difference.
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HLB, yes, I think you are right, and I wonder why a doc would start with aromasin and not with one of the non-steroidal ones.
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it has a steroid component. And she started me on it first because it is thought to have less side effects.
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I was given Aromasin because the onc said it did the "least" damage to the bones!
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OK, that makes sense, Shayne. But since it is not agreeing with you, maybe one of the others might work better.
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My body is telling me not to poison myself further. I have to listen. Right now, I feel so bad, that I cant even imagine taking another pill that may possibly bring me back to this place.
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It is a real possibilty that your MO is getting financial incentives from a pharmacuetical company for Rx's. Lots of Drs. do it for all kinds of drugs.
I was going to recommend a new MO, but I see you already are. It's fortunate you have options. Some don't have that choice. Mine wants me to take Tamox, but doesn't force the issue. I tried multiple AI's and some were better than others, but all were horrible for me; it was just a matter of how long it was to get there. One was 5 days, another wasn't bad for 4-5 weeks, then BAM. I said the exact same thing. I'm 54 and I feel 84. There is a quality of life factor to be considered. If I were at a more advanced stage, I would likely at least try Tamox, but I'm just now beginning to feel "normal." Although I have joint pain and fatigue that I didn't have before the AI's. Since it's been 7 months, I think this may be my new "normal." Plus I already have osteoporosis. My MO uses the bone strengthening as a selling point fot Tamox. Don't get me started on that.
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I have a friend who was just telling me about the bone strengthening pill, the one you take once a month? she said its makes her feel so bad, she has to plan to stay home in bed! The taking of pills to combat the pill is a slippery slope.....ask any senior citizen who is on multitude of meds.
Ive decided not to look for another MO and to just follow with my Nurse Practitioner who is also a PA. and my naturopath, and get regular screenings. I dont feel supported in my present Oncs office and see no need to continue that relationship if im not on hormonal therapy. Im fine with that and feel lucky I have two practioners near me that support my decision and will help me regain and maintain my health from here on out. Im much more comfortable with alt medicine as it has helped me in the past.0 -
I don't blame you Shayne. I went for 8 years after dx not taking anything but supplements. For the last 2 of those years I didn't take as good care of myself for some reason. Too much soda and generally unhealthy habits. It seems to me with the low stage of cancer there's got to be something better than these side effects. The bone strenghting pills are just evil in my opinion. My mom was on fosamx for a few years. She ended up needed to have her esophagus dilated. She has always made sure to take her calcium and do weight bearing exercise and now that she has been off the fosamax for a few years her bones have improved. I'm suspicious of "osteopenia" being a made up condition to get people on those meds. Pineapple and prunes are very good for the bones.
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Wow - her esophagus dilated?! wow. We have to ask ourselves what are we doing to ourselves, or letting our doctors do to us - in the name of fear?
also - can you explain why AIs are prescribed if one has had a mx? I was reluctant to ask my friend, who also had both removed and no resconstruction. Isnt it to prevent BC recurrence or is it mets?0 -
HLB - you're exactly right! Osteopenia was coined by big pharma so they could sell a drug for it. I found that our when researching my options. One of the new injectables actaully has cancer as a possible SE. And they critcize those who make and take herbs and supplements. Sometimes I feel like I'm living on a parallel planet.
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Wow! I didn't know that about cancer being a side effect. I should clarify that I am actually on XGEVA for bone mets. And letrozole. I don't like it but its working and luckily I don't seem to have any SEs.
Yep, the Fosamax tells you not to lay down after taking it due to the problems it causes with the esophagus. I'm glad my mom stopped taking it. Yeah people think we "alties" are the gullible ones.0
