Stage 1, grade 1 and pre-menopausal
Comments
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Found out today that my Tamoxifen brand Teva 20 mg. is no longer available here. The pharmacy is now offering me Zitazonium 10 mg., and I would take two at a time. The pharmacist tells me that 20 mg. Tamoxifen tablets are not common here in Hungary, and I'm surprised at this. Isn't 20 mg. the standard treatment dosage?
Also wondering exactly what is in Zitazonium, it does say Tamoxifen on the label but in googling it apparently it's popular with body builders that take steroids. Lovely ......
Has anyone heard of Zitazonium? Not looking forward to a switch in brands, as I'm used to Teva and am familiar with my SE's while on it.
Off to email my MO in the States.
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Ooh sounds like they are getting a bargain basement preparation of tamoxifen, just important to know the QC of the manufacturer. I have not heard of this brand, sorry
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Stress/anxiety time. One year mammogram tomorrow. I hope as time goes by I get less stressed about this.
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Thinking positive thoughts for you Belinda!
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Belinda, Try to relax! I just had my follow up with the BS and my mamo/us is in Aug. I know it is stressful. Try to relax and breathe!!!
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WHEW! My mammogram was clear. Or course they needed to take a magnified look around my scar area but all is good! So happy that stress is over with.
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Happy dance time!
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Congrats Belinda I'll have mine in Aug. hope it will be good news like yours.
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Wheew, Belinda - glad that's over with and all is clear!
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I have a cyst in my "good" side. Last time my mamo (it was the first since UMX) they had me wait and take even more pics. It is so hard waiting and worrying. But all was well. It was the cyst they were looking at again. I'm hoping for this next one to be ok too.
Glad your's was good and fine. You can breathe easy and move on. It's a good feeling when you leave your appt and all is well. :-)
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Hi ladies, just updating that as I had previously written that my oncotype came in with what appeared to me as already low estrogen levels, and I did believe I was perimenopausal, that after just one month on DIM my period was almost non-existent. Just one day where I could have just used a panty liner compared to 6-7 days of very heavy flow where I went through a whole box of overnight pads. As I had 1 normal period after BMX it was definitely the DIM doing its job. Also updating that my onco did review my pathology report alongside my oncotypedx report (15 with 9% recurrence rate) and he said my odds were between 6 to 9% that I would get recurrence WITHOUT Tamoxifen and that Tamoxifen would only reduce my risk by maybe 4% so he agreed the risks outweighed the benefit for me. He also said I could get this same reduction in risk by exercising 4-5x per week for 45 minutes. After realizing i had BMX he said I have about a 1 in 20 chance it will come back. I can live with that risk, no regrets. I hope you all have as thorough and experienced Oncologist as I have who looks at everything. My MO is also board certified in internal medicine and hematology which I believe makes him have a more rounded outlook than my first MO who just pushed Tamoxifen claiming it reduced my risk by 50% without clarifying she meant 50% of my personal risk, i.e., 4% as my personal risk is 6-9%) So glad I changed oncologists. We are not cookie cutter patients who conveniently fit into limited guidelines and he gets that.
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Mepic... I am pleased to hear that you found an oncologist with whom you are happy with. However, I would appreciate it if you checked a copy of your Oncotype DX score report because the score you receive and the chance of distant recurrence is based on taking Tamoxifen. I am not doubting that your physician told you that your risk of recurrence was between 6 -9% WITHOUT Tamoxifen. However if you read the report, it SPECIFICALLY says your risk of recurrence score is based on taking Tamoxifen. So with a score of 15.. ACCORDING TO THE ONCOTYPE DX test, your risk of distant recurrence while taking Tamoxifen is 9%.
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I had an oncotype score of 15 with a risk of distant recurrence of 9% with tamoxifen.
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Voracious, you are only taking into account the Oncotypedx, whereas my MO took the time to read my entire pathology report alongside the Oncotypedx before he told me my odds of recurrence (6-9&%) and how much Tamoxifen might help me (4%). As I had a BMX he further said I had about a 1 in 20 chance of recurrence. Remember I did call Genomic Health and they said Oncotypedx was created and based on studies to help women make choices with chemo not hormone therapy. When I asked about differing risks for taking or not taking Tamoxifen she said they could not answer that because their studies were done with the intent that all women tested would be on five years of Tamoxifen. I had recently noted that the only mention Genomic Health has on its web sites about helping women make the choice for Tamoxifen or not was the ER/PR quantitative results. I copied this from their web site:
What information do the quantitative ER and PR Scores provide?
The quantitative ER and PR Scores can:
- Help determine the likelihood that an individual patient will derive a substantial benefit from tamoxifen
- Provide additional information for clinical decision making for a patient whose ER protein expression is borderline positive by IHC or reported as uncertain
- Provide further insight into the Recurrence Score result.
I know we agree that the Oncotypedx report was never meant to take the place of the pathology report. They are supposed to both be used to derive the best treatment decision for each patient. In my case my estrogen levels on the Oncotypedx were on the low end of the scale which must explain why my period just about stopped after only 30 days of taking DIM (that and the fact that I am super sensitive to all medications which is what led me to write on this thread in the first place). Voracious, I truly hope that 20 years from now we are both successful in our personal decision-making. Be well all.
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Mepic... The Oncotype DX test does NOT measure your estrogen in your body. The ER measurement of the score measures how much estrogen receptors you have that FUELS your tumor. There are many postmenopausal women who have very high Oncotype DX estrogen scores.
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Okay so my estrogen receptors that fueled my tumor were on the low end per my Oncotype dx score....AND I have low estrogen as is obvious by my period practically disappearing after 30 days on DIM. TomAto, Tomato LOL
Voracious, I researched my BC as you did, but in a very different manner. I believe we each place great emphasis on different things. You are expert at reading and studying medical studies and statistics. I am a speed reader who has read hundreds of accounts of personal stories/posts by women in my same situation who have taken Tamoxifen or opted out of taking Tamoxifen. I took the time to read every single post about Tamoxifen on these Boards and I am grateful for the honesty of women who took that trail before me to warn me of SE, some permanent, I could suffer, especially given my extreme sensitivity to meds. I also read many studies and quite frankly I did not come away impressed with the results. I may not have the eye for studies like you do but I found again and again that sadly, it may be the best we have right now but it certainly is no wonder drug and the science is not there to even show who is going to benefit from it so even someone who takes it faithfully for 5 years may recur. I respect that you take a different approach and that you feel strongly about your choice. But your approach and your decision are not my decision and I too am very comfortable and at peace with my decision not to take Tamoxifen. You have repeatedly attacked my decision-making, at times in a very condescending manner such as typing in all capital letters or insinuating that I read my oncotypedx report wrong. I can't help but almost laugh at how you had to find something wrong with my last post. I feel that women come to these Boards to make very personal hard decisions...and just maybe there are women out there who feel like I do...that not all early stage, low grade BC patients should suffer the risks of Tamoxifen SE in exchange for a very small possible reduction in risk. We come to these Boards to find similar experiences, to learn to be our own advocates. I for one have been very blessed by much of what I have learned on these boards, especially the recommendation for DIM. Now, after having met with my wonderful oncologist, I am very happy that the conclusions I had made he agreed with. By no means do I think my decision should be made by anyone else - everyone needs to do this for themselves given their specifc situation. No one on these boards should feel bullied and Voracious if you look back and read how you have followed me on this thread you may understand why I am now asking you politely to back off. This is not a courtroom where you have to prove me wrong. I will say it again: I hope we are both successful in our personal choices and God willing women who read these threads may learn from both our personal experiences. Good night.
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Hey mepic, can I poke my head in and out right quick, dodging arrows (just kidding! Just kidding) and ask which brand of DIM you are taking?
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Unfortunatly yes, I'm post menopausal my DX score 34...Ugh.
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Tarheel, you made me laugh
. I am taking Nature's Way DIM-plus. I take 2 every morning along with Vitamin D. Initially I also took a third one before bed but that was making me wake up in the middle of the night, as if I had too much energy.0 -
What is DIM ?
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Hi Belinda, It is a natural supplement you can buy at most health food stores. I copied this for you:
The following definition of diindolylmethane was taken from the National Cancer Institute:
diindolylmethane A phytonutrient and plant indole found in cruciferous vegetables including broccoli, brussels sprouts, cabbage, cauliflower and kale, with potential antiandrogenic and antineoplastic activities. As a dimer of indole-3-carbinol, diindolylmethane (DIM) promotes beneficial estrogen metabolism in both sexes by reducing the levels of 16-hydroxy estrogen metabolites and increasing the formation of 2-hydroxy estrogen metabolites, resulting in increased antioxidant activity. Although this agent induces apoptosis in tumor cells in vitro, the exact mechanism by which DIM exhibits its antineoplastic activity in vivo is unknown. Check for active clinical trials using this agent. (NCI Thesaurus)
Abbreviation: DIM Chemical structure name: 3,3'-diindoylmethane0 -
Thanks mepic. :-) I just had my Vitamin D tested again and I credit my daily supplement and the sun for bringing it up to "borderline." Now I'm working on my estradiol levels. I've made multiple changes in my diet and lifestyle and I'm still flowing with estrogen at 49. Want to keep my ovaries. Hoping DIM can do something.
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Mepic...As the esteemed late U.S. Senator Daniel Patrick Moynihan once said, "Everyone is entitled to their own opinion, but not their own facts." I am NOT OFFERING MY OPINION about whether or not you or I or anyone else should or should not take Tamoxifen. Instead, I offer the FACTS with respect to what the Oncotype DX score measures. FACTS. It is a FACT that the Oncotype DX score that one receives is based on taking Tamoxifen. The score tells the patient what their chances of distant recurrence are BASED ON TAKING TAMOXIFEN. The ER score accompaning the Oncotype DX recurrence score is based on how many cancer cells have ER receptors. These are FACTS for anyone who reads this to understand when they are making their decision whether or not they wish to do endocrine therapy. It is incumbent to understand the FACTS before making a choice. I wish you well with your decision. But let's not confuse other readers by what is factual and what isn't.
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Question......thanks for all the info. Can you take DIM along with Tamoxifen? Or is that not recommended? Anyone?
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I'm in a clincial study with the University of Arizona to test the effectiveness of DIM with Tamoxifen. I don't know if I have the active substance or a placebo but hopefully, down the road, the answer will be clearer for all of us. Here's a link to info on the study, they are now enrolling both in Tucson and Phoenix: http://azcc.arizona.edu/node/4472
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Voracious, I am not sure why you reposted all you did when, if you look back, you will see I did not disagree with you about the Oncotypedx. You are not a doctor and so therefore your understanding of the facts do not weigh heavier than what was told to me by my experienced Medical Oncologist, to wit, my prognostics are favorable enough that he agrees the risks of taking Tamoxifen outweigh my potential benefit of 4% reduction in risk. You keep stressing that the Oncotypedx recurrance rate of 9% is given based on someone taking Tamoxifen for five years as if my MO and I don't understand that. One more time: my MO felt my risk was lower than 9% ("about a 1 in 20 chance") after reviewing my oncotypedx report alongside my pathology report (a) small tumor (b) grade 1 (c) ER/PR+,HR neg (d) BMX. I am honestly mystified by your constant need to follow each of my posts trying to discredit me. I agree with you that women reading these boards should know the facts. Women like me are fully capable of evaluating benefit v. risk and coming to their own personal conclusion. My MO is quite capable and I value his many years of experience treating BC patients. I am aware of the risk I am taking but 4% possible benefit is not worth it for me and I can respect that 4% may very well be worth it for someone else. I would rather get that 4% benefit by exercising. Women should know that when they are told Tamoxifen reduces their recurrence rate by 50% that what the doctor really means is 50% of their personal recurrence risk given to them by their MO. The oncotypedx score does not provide the final personal recurrence risk - the final COMPLETE recurrance risk is obtained when the MO looks at the oncotypedx alongside his patient's pathology report to come up with the final recurrence risk, as mine did. For the women who did not get oncotypedx report done they can go to cancer math and get an idea there of their recurrence risk before meeting with their MO. Voracious, whether you personally agree with my decision or not I feel my personal experience may benefit someone else out there. I am not telling women not to take Tamoxifen - every single woman has to decide their treatment for themselves. I am at peace and certainly do not feel the need to force anyone else to make the same decision as I did so please give me that same courtesy. Perhaps it would be beneficial for you to start a new threat entitled something like "Tamoxifen Studies" so that if someone wants to base their decision to take Tamoxifen on what studies concluded or if they want reassurance that Tamoxifen is worth the SE they are experiencing they can go to that thread and be encouraged. I believe the spirit of this thread was to see what other stage 1, grade 1 and pre-menopausal women had chosen as treatment and there is a lot of good information here.
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After experiencing the SE of Tamoxifen, I can NOT take it. I am taking DIM and my estradiol level dropped from 180 to 91, and, thank God, my cancer markers normal. I finished radiation in December, right before New Year's Day. I also have more energy and have lost five lbs.
I wish I could have the luxury of taking the drugs to avoid the feeling of my ass swinging in the wind, but I can't so I am taking supplements and changing my life style.
I don't think anyone here should be attacking anyone else for their choices. We are all doing the best we can under trying circumstances. It is what it is. We're already fighting one battle; I don't think we need to 'attack' one another. Mepic: do whatever it is you feel is right and ignore the BS flying around. I don't think anyone has the market cornered on knowing everything about breast cancer. If he/she did, we wouldn't be having this discussion; there would be a cure. Peace
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Wildrumara, earlier in this thread and elsewhere I have read posts where women experienced less SE from tamoxifen by taking DIM also. I have not read anyone saying their MO advised against taking both. I believe it helps with hot flashes. It seems to give me a lot of energy. It definitely helped me recover from my BMX.
Della, thank you for your kindness. That is wonderful that DIM is helping you so quickly. May I ask if it has lessened your period like it did for me? I know I am crazy sensitive to all meds but I had not read of anyone else having their periods practically stop after just 30 days on DIM. Good night all, be well.0 -
What dosage of DIM do you ladies take? I am in perimenapause and when my estrodial levels are high that seems to be when I have horrible hot flashes. When it is low I don't. You would think it would be the opposite. The only sense I make out of it is the tamoxifen has to work harder when my estrogen is high. Any thoughts on that ladies.
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Ya'll, I am pre-menopausal at 49. Estrogen levels out the door! My tumor was 98% ER+ and 90% PR+. I have both ovaries but no uterus. I started taking DIM+ enhanced absorption, 2X100mg a day, now I have moved up to three. I take Nature's Way. I was having night sweats and they are GONE. I am going to request an estradiol test the same time every month to get a baseline.
An OFF TOPIC: Have any of you had shingles since your diagnosis or before. I just found out I have them today--for the third time! My question is what can I take to help build up my immune system. I already take zinc, selenium, resvertrol, DIM, Vit B's, Collagen w/C. I have flaxseed too but don't take it too often. Any suggestions?
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