natural girls
Comments
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Most side effects never get reported to the government or the manufacturer because the doctor has to take time to submit an "adverse event" report. Now patients can do it. If you have had a problem, please report it to the FDA.
Consumers can file an adverse reaction report with the FDA. http://www.fda.gov/Safety/MedWatch/HowToReport/default.htm
Please circulate this link to other threads or online groups.
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Thanks, mollyann!
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Designer- It is sad that we have to do that but sadder yet not to find out our numbers. I will constantly revaluate and if things change, then I may. It is the conflicting information that makes me particularly nuts. That old line of "we don't need the numbers because the side effects tell us it is working" is such a pile of crap. Then when I only "agreed" to take the Ai if she ran the tests and they come back so good- she celebrates it as proof they work...adding "That is why I ran the full panel of all hormones so you could see"...HUH? After first telling me to use SEs as the measure. I spoke with a good friend today who is a psychiatrist. He told me "Annette, the truth about virtually every medication is that the doseages are based on averages and very few people fit in the target range". He was furious at me when I first told him of my decision against the AIs and then when I showed him the NCCN data along with my hormone panel...he shook his head and said "Thank goodness even I can learn at 72 to open my mind"...For I had told him to explain to me in plain english how a prescription drug that hurt me so bad and would have undoutedly led me to have the need to take another three or four (including an antidepressant which I have managed to avoid needing through a lot of various calamaties in my life) to offset or try to offset the SEs and then in turn land up with the possibility of several serious medical conditions instead of the just the orginal one of BC- how could that be good if I could possibly achieve the same thing with an alternative? He shrugged his shoulders. I am not against traditional medicine in the least- just the wholesale prescribing one size fits all. I love having his as a friend to which he agreed saying "You would drive ME crazy if you were my patient":)
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I am afraid that so many thing do NOT get reported to the FDA becuase so many women are told that SEs are NORMAL...I have talked to many who have done fine and god bless them for that- I am envious that it works without adverse impact. I have talked to many who say it is fine and then add the laundry list of other drugs they have to take to combat the SEs...I am not sure I put that in the win column as many of these new conditions that spring up are permanent and the drugs they are receiving are quite potent and have their own SEs to deal with.
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mollyann- Just when I was going to look for the info on reporting adverse incidents to the FDA, you saved me from the humt. Thanks!
Annette- Yeah, I can't believe we have to "trick" doctors into doing the right tests. At this point I feel like "whatever it takes". They are not going to change. I just need to take care of myself.
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Thank you gals! All of you...! For just being aware of what these treatments can do! Mollyanne, thanks for posting the link to report to the FDA....I still haven't heard anything back, but they DID send me the papers to fill out...Or I might have down-loaded them....But I sent my story, and all the links back to them by email!
I don't think enough women complain...or just take the SE's as "that's what's supposed to happen." But when it seriously hurts us, we HAVE to do something...even if our medical team does not agree with us.... I have heard sooooo many stories about Arimidex, AND Femara...So it isn't only Tamoxifen... And probably most of the women that take these, do not have serious SE's....
And Designer...Honey, that is so true....We just have to take care of ourselves. Annette...Yes, come to think of it, we DO take other drugs to help us get over the SE's! While I was on Tamoxifen, I couldn't sleep, like a LOT of the women...So I took Melatonin....THEN I had diarrhea for 2 weeks! THEN I took ImmodiumAD to get rid of that! Like 4 a day! So I thought what am I going to do? I quit the Melatonin, and it all straightened up. Still couldn't sleep worth a darn, but that was better than everything ELSE that happened!
n3ypb ....Be sure you let us know how you are doing! I know the Femara causes terrible problems with "Trigger Finger" not to mention the joint pain. And chemo, well, we are supposed to take this if our "numbers" indicate that our cancer will spread.
But you know I hate to post any of this on those threads, because those women have been prescribed this, and they trust their Oncologists! It's only then, after they quit those drugs, do they look up a thread like this one, and learn a lot more..... I think sometimes, chemo is the only option some women have.... And maybe I would do it too, if I were younger, and had more advanced cancer.
My Daughter's friend had a lumpectomy...She is 80...But her nodes were also not clear, and she decided to forego any further treatment. She & her DH went to some South American country, to see this "guru" guy...for healing! She came back, & within 3 months, her breast cancer has mets to the bones...NOW she is on chemo...and not doing very well....Maybe SHE SHOULD have had the kitchen sink thrown at her....but she didn't want to. She didn't want Radiation or chemo, which they wanted for her.... Oh well....doesn't do any good to second guess now.
Thinking of you all.....Jeannette
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So, I saw my obgyn today to talk about why I stopped taking the Tamoxifen several weeks ago (because I'm worried about getting uterine cancer). He's a great doctor (I typically wait anywhere from 90 minutes to 2 hours to see him, but so worth it). He assured me that the risk of uterine cancer is very minimal and that he would be happy to monitor me with US every six months to make sure all is ok. We talked about all the options. In the end, he said if it was his wife going through this, he would tell her to take the Tamoxifen. He said my age is a factor (I'm 47) and I should take advantage of the opportunity to decrease my odds of the cancer recurring. He says my onc is the best in the Orlando area and I should trust her advice to take it. So now I'm torn. I still don't want to but I'm leaning toward thinking it can't hurt to. These choices suck!
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in the end JoanDavies- the decision to take it will have to be up to you. If you trust the docs and they monitor you closely, it may be worth it to try. You are so right- having to make the decisions does SUCK
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i did the biopsy,tried the ALs.not for me,did the rads AND THATS IT....Like you Chevy im too old for all these S/E.i wanna live...and i do want my QOL.I did not require chemo and all my Drs are ok with me doing nothing else.I changed my diet,added some suplements and once i get rid of the fatigue im gonna start my dancing again..As far as im concerned im done with any more meds for BC.of course the picture changes if GOD forbid i get a reoccurance but right now im gonna live for now.
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mathteacher, with some trepidation... I'm going to question your maths.
Above the chart it says
On Apr, 6, 2011: 10,934 people reported to have side effects when taking Tamoxifen citrate. Among them, 42 people (0.38%) have Deafness.
That's a minute fraction of those who report side effects, and I assume most people don't even report SE's.
Of those who do report deafness, 33% of them fall into different time categories, 1 to 6 months or 2 to 5 months or 5 to 10 months taking the drug.
That's not 33% of all tamoxifen users as you said above, thank goodness. My maths isn't the best so let me know if I'm interpreting that correctly.
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Chevyboy, As far as I know it takes a year or more for cancer to take hold in the bone and grow to a size where it becomes painful enough to be diagnosed. I say this because there are women here who have pain on and off for months to a year before it gets bad enough to be diagnosed and cancer doesn't spring up overnight, it starts as one or two cells then grows from there.
So it's likely the elderly lady already had mets when she refused the first offer of chemo. I hope her oncologists can explain this to her so she doesn't feel guilty on top of all the normal grief.
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Luann...I don't have an onco I can trust with my life either...mine wanted me to do chemo and NOT have the oncotypeDX test...I have an OncotypeDX score of 0...onco insisted that I do chemo and tamox...didn't do either...onco did not mention permanent baldness or hearing loss but did say "I don't want to be sued in 20 yrs for not recommending chemo". Chemo is offered in that onco's office. Interesting point...onco didn't think I was qualified to know if I should have the OncotypeDX test but offered two different chemo regimens and thought I was qualified enough to pick which to do...go figure....Onco refused to order the CYP2D6 test to see if I had both alleles on the gene that is the pathway for Tamox...got my surgeon to order...I'm missing one of the alleles...which also explains why benedril doesn't work all that well for me either.....Onco said "Tamox works for everyone"....Really? What about those missing both alleles on the CYP2D6 gene?????
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Morning gals! Yes Joan...It's good that you are listening to your Oncologist. You are very young, and I would advise my Daughter's to take Tamoxifen also, if they ever got Cancer. It's good your doctor took the time to tell you this!
And I know that the probability of anyone losing their hearing beCAUSE of Tamoxifen is very low, but I KNOW that it happens only in older women, sometimes!
My friend here in Denver took it for 5 years, when she was 55, and she sailed right through treatment! Maybe the reason I had hearing loss, is because we all ARE different, and maybe my ears are "different".....But I DO know that there aren't any studies out there taking this into consideration.
Luna, my first Oncologist said why aren't you doing chemo? And I said "because I am 72, and my surgeon and radiologist said I shouldn't need it!" Then he said, "Okay, if you are not going to take it, then I won't do the Onco test for you." I said if the test came back to show I needed chemo, then I would do it....but I wanted the Tamoxifen. Then a few days later, he called back & said the test showed I didn't need chemo...My score was 19 I think.... (I didn't even think he did the test!)
So this was an Oncologist that would give you EVERYthing to keep cancer from coming back..
I just want one that will listen, and tell me the good and the bad....
Sheilah, I thought that too! She knew that the lymph nodes came back positive, so that had to mean that it was on it's way, and her tumor was quite large...but she refused any radiation or chemo because she was afraid.....I think. And yes, she probably wanted the easy way out, by trying to be healed by this Dr. John, or who ever he was. But it makes you sad, to see how this cancer is taking over... And maybe the treatment right after surgery wouldn't have made a difference in her case.
You are right about the chart....I posted the link, & mathteacher looked at it, and there just are not enough studies on this problem, to come up with any better or more believable figures. But when it DOES happen, then we start looking for answers. I found 5 different studies on hearing loss, and this was just one of them.
HI KANTALOPE! (GD).....And yes, if I get cancer again, then I'll take it from there....
I'm with you....Quality of life is so very important! I was scared to death you wouldn't do the rads even! How often do you see your Oncologist? And send me a picture when you get on your dancin' shoes, ha!
Wish I could go dancing with you! xoxoxoxoxo0 -
I just found this post from the Moderators....I was wondering about these "healthy alternative diets" for women with cancer.... I don't mean to be controversial or anything, but I thought this was really interesting.....
http://www.breastcancer.org/tips/nutrition/during_treat/diet_warnings.jsp
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hi chevyboy,
just my honest opinion-- anyone who claims a cure is either a liar, misinformed or just usign the term cure to mean "NED" or no evidence of disease.
my mother has gone through a combination of Gerson and Breuss Protocol and modifiication of Kelly/Gonzalez Enzyme Therapy -- I was skeptical about it-- I disagreed with my mother-- but it was her decision and decided to support her through it.
I agree that it is not been proven in a clinical study that either of this will work or will have adverse SE. But until now, my mother has no evidence of adverse SEs.
take note, am not promoting it or asking anyone to go through the same protocol- it is not for the faint hearted..
I would not dismiss the fact that her healthy diet (including curcumin) and nutrition is helping her quality of life (with or w/o the above protocols).
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hi chevyboy,
just my honest opinion-- anyone who claims a cure is either a liar, misinformed or just usign the term cure to mean "NED" or no evidence of disease.
my mother has gone through a combination of the above protocols -- I was skeptical about it-- I disagreed with my mother-- but it was her decision and decided to support her through it.
I agree that it is not been proven in a clinical study that either of this will work or will have adverse SE. But until now, my mother has no evidence of adverse SEs.
take note, am not promoting it or asking anyone to go through the same protocol- it is not for the faint hearted..
I would not dismiss the fact that her healthy diet and nutrition is helping her quality of life (with or w/o the above protocols).
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sorry double post-- I have to delete the other one.
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I do hope that someone will sponsor a clinical study for the above 3 protocols-- so we can rule it out once and for all. I understand BCO's stand not to endorse it, because there are no clinical studies that support its efficacy as well its SEs.
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Hi Ruth! It's okay! You know, we are all entitled to believe in what we want to, or to do our own research on any subject, because we are trying to find answers, and help! It's just that for my friend to travel to South America for some sort of "prayer healing" which didn't help her, made me feel bad that she wasted so much time while her cancer was spreading. We all believe differently. Either in religion, politics, or health care.... And we can all discuss it here....
Okay, now that I said that...here's breakfast!
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hmmm chevy, its 9pm here.. but with that great looking breakfast-- I can have breakfast anytime!
about "prayer healing" -- not a fan-- but I also respect those people who go there and get some level of peace of mind--
-- however, I would probably accompany a friend to have a diagnostic test to ensure everything-- even Daniel was tested after his fast! tell her that,, she might agree to go with you for diagnostics..(oops just opinion-- being wary of my watch dogs tonight)i think I have to go now-- I realized am already hungry-- thanks chevy for the good natured acceptance of my opinions-- it seems am getting better in expressing my views now..
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please also tell her that even if she is believing in spiritual law-- since we are still in the physical world-- she is still bound by the natural (physical) law-- thats how I usually talk to fundamentalists..
no one is immune to the diseases of this world-- although prayer really works-- she still need to be tested.. just my humble opinion..
really gtg now! have a nice day ahead of you..
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Sheila, always feel free to question my math! The problem-solving is about the math, not about me. I didn't understand the chart or the 33% which was why I wrote and asked.
The way figures are extrapolated is a specialty of mine, that's why I was asking.
I need the original data to look at this information. I'm busy now but if someone can find the orginal data-gathering study, please post and I will go through it with a fine tooth comb. PM me so I don't miss it.
My feeling is that hearing loss is going unreported by the oncology field but the audiologists might have noticed a pattern and it should be in their data of patient histories. Just as gynecologists have better data on the hysterectomies following Tamoxifen than oncologists because they are the "point of service" for this complaint. My gynecologist said 1/4 of her Tamox pts wind up with hysts, not always for uterine cancer but for endometrial changes that are so risky she tells the patients and they make the decision. The 1/4 number isn't recorded in the oncology literature--thus the oncs don't disclose the correct figures.
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Hi Mathteacher...is this what you mean?
http://www.ehealthme.com/ds/tamoxifen+citrate/deafness
Or even these....
http://gradworks.umi.com/32/01/3201008.html
http://www.aro.org/archives/2005/2005_773.html
And I don't really understand all of this, but I sent it all in to the FDA, so maybe if they looked at this, they could figure it out.....I believe also, the the ENT's do know this, at least some of them, but the Oncologists are not getting this information....
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mathteacher: That is a really interesting stat about GYN,tamox, and hyst! I love the way you explained it with point of service...I've had the same inkling, just couldn't verbalize it. I meet with my MO beginning of May. I just finished rads...and I know she wants me on Tamo x5 yrs. I"m currently seeing a GYN I don't like at all, for a fibroid that I've had three years, but it just tripled, and a complex ovarian cyst, newly discovered. I'm struggling with the GYN because she isn't recognizing my BC with enough weight in dx of my plumping issues. I'm preparing to be frustrated for a 2nd time with my MO, because she doesn't listen to anything I have to say. I can't conceive of a reason to put me on Tamox at Grade 1, when I have uterine issues. It's all so frustrating....they whole defensive medicine that was mentioned above with the Onc is ridiculous. I"m teetering on that hairy edge of being my own advocate or a raving lunatic!
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hi GirlFriday and math,
this is why I think Cancer Centers should start offering services wherein they will have all the specialists (onc, radiologist, surgeon, ob/gynae, endocrinologist, hepathologist) -- all specialists that handle the SEs) and the patient plus patient advocate into one conference room.
Medical City in the Philippines offer this-- I think the more developed countries should have this too.. I know for a fact its not offered here in Singapore..
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GirlFriday: I have been plagued with fibroids on and off for over 30 years. Diet can control and completely eliminate them! I have had them the size of large grapefruits and reduced them to the size of a peanut with diet. No white foods: no dairy, no potatoes, no white rice, no pasta, no bread and no processed foods gets rids of them completely! I know for many this is an extreme diet, however, it will keep you slender and svelte, too,
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MBJ: No dairy? Ack! I only eat potatoes on occassion, haven't eaten white rice or processed foods for years...pasta, I recently cut out, as I've been greatly reducing my wheat intake. But cheese, damn that is hard to give up! Are you doing supplements too for shrinkage? ha! I said shrinkage!
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GirlFriday: I take a ton of supplements, but the diet is the only thing that works. Dairy is my weakness, too. Just know that eventually you can have these again in moderation and preferably only things like yogurt, feta, goat cheese, parmesan occasionaly. I don't know why the white foods do this, just know that it works. You can replace your bread with the ezekiel or try some of the new flourless breads at whole foods that are gluten free. Oh, yeah. No sugar, too.
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Add me to the list of ladies that went Deaf using Tamoxifen. My left ear, two years ago, still no hearing.
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Sugars not a big deal unless it's ice cream, and that's dairy...are eggs out? is that a stupid question? I've been working my man over so he'll build a chicken coop...bagock! My dairy is limited to the cheeses/yogurt you listed...with a little cheddar on my burrito's, but those are no few and far between...except for tonight... I finished rads and I'm making some enchiladas!
This diet thing is getting harder to modify...We made some healthy living choices a couple of years ago for my man's ticker, and now I'm pushing the envelope with my dietary choices. He's all meat and potatoes, and I'm really not. I'm considering some of the detox diets now...and cheese and wheat are the first things to go!
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