Estrogen Blockers ??? Take it or dont take it ?????
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I recommend that people really look at the benefits versus the drawbacks. Yes, you might have side effects for 5 years (how severe also needs to be taken into the decision), but if it buys you 30, 40 years of cancer free life I believe it's worth it. At least 30% of early stage breast cancers recur, the use of hormonals for most women will help them not be in that group. Here's how I determined my course of action by looking at the arguments given:
1. The pills have an impact on my quality of life and why live if if you're miserable. The pills are temporary, even taking them for a short period helps. Yes, there are side effects but there are even more severe side effects if there is a recurrence. I rather deal with the side effects for 5 years than to pray if I can even live to see 5 years.
2. I'm hard to live with and my family has to put up with me being moody. My son would give every thing he has to put up with me for 5 years even moody at times. He has to live with the fact that I can be gone within 5 years, I'd be lucky to get more than that. The worried look I see on his face breaks my heart..believe me doing anything possible to keep that look off your family's faces is worth most of the side effects.
3. The cancer could come back anyway. Yes this is true, but it gives you the best chance at preventing that from occurring. There are no guarantees in life but the odds are in your favor with the pills than without. You went through surgery, chemo and rads..why fight only half the battle.
4, I can't deal with the chemo brain effects I get from the pills. The effects of brain tumors, and being on chemo or hormonals for the rest of your life is worse.
5. The pills give me body aches. You will really understand body aches when you have numerous bone mets and your bones can break without any notice or activity. Frequent surgeries to insert rods and screws just to keep your spine from collapsing or crippling you or to keep your legs from breaking like twigs.
6. It adversely affects my sex life. Nothing ruins a sex life like dealing with chemo effects for the rest of your life, bodies aching in pain that meds don't even relieve, depression from knowing you'll be leaving your loved one in a short period of time, stress from not being able to do anything (even the simplest of tasks) for your family and they have to carry the load.
7. I don't have any energy when I take the pills. Try having energy with lung mets. Just being able to breathe is all the energy you can muster. You try walking a short distance and you're lucky if you don't pass out. Bone mets isn't a picnic either. In it's advanced stage, trying to move your limbs requires a great amount of effort and is exhausting. Just trying to get up from a seated position is work.
I don't want to put this out there to scare anyone. I just wanted to give another viewpoint from someone who is on the opposite side of things. Of course, I still believe that people need to look at their individual situation and make the best choice for them. I can't tell anyone what to do. I hope I haven't insulted anyone because that truly wasn't my desire. I really just want to help people not end up where I'm at because it truly is a miserable place to be. I wish everyone well and hope everyone has a great and long life.0 -
aaoaao, thank you for taking the time to put all that down, I find your posts articulate and thoughful and I appreciate your willingness to share with everyone how it is from your side of the fence. Wishing you and your family well as you go through this.0 -
aaoaao - I, too, appreciate your thoughtful posts. I realize now that I should stop complaining about the side effects from Tamoxifen. I had not focused clearly on the other side of the coin so thank you for showing it to me. Sending good thoughts.0 -
Thanks Barbara and Rosiestoeses for the complement. Barbara it is still okay to vent about what you're going through. It's still a lot to deal with and I don't want to minimize what any of you are going through. I've been there too. I just wanted to give deeper insight on how bad things can get because sometimes we lose sight of that when we don't feel well or are tempted to give up because we're experiencing side effects. My mother, who had bc 10 years ago, before I was dx, also wanted to quit the hormonals but her doctor gave her a hard time because she refused chemo and promised him she'd at least do the hormonals in exchanged for not doing chemo. Her cancer hasn't returned so I believe the pills played a part since she just did a lumpectomy and rads. So I really do understand the desire to quit due to side effects. I also understand that some people, due to other health factors, just can't do hormonals and it is perfectly understandable for them to forgo that option because it simply doesn't apply to them. Cancer is a emotional and physical hardship on all of us and everyone has the right to cry, scream, vent, whatever we need to do to get through this. Don't think that because you are at an earlier stage that you're not fighting a battle too. I just want to help people not become a POW of this cancer war...Stage IV is a prison of sorts, you're a prisoner of the demon in your body and a prisoner of the treatments that never end. I'm not saying that life isn't worth living because it is. I fight everyday to get everyday. I still love my life!0 -
aaoaao ,
I joined this site awhile ago and just want to tell you what an inspiration you are !! Your post above (benefits versus drawbacks) should be read by every member of this site. THANK YOU for always supporting everyone . We are all also here for whatever we can help YOU with !!! You are appreciated !!!0 -
Again thank you all..it really does make me feel that I give some value. I definitely also find support from you to. Believe me, you guys are being so proactive in your researching various treatments, I wish I had been. I didn't even look for this site on my first go around, I kind of stuck my head in the sand. I would have been more aware of odds of cancer recurrence, that factors such as weight plays a big role, where mets are most likely to occur and what signs to look for. I also would have been given encouragement to demand more from my oncologist such as scans and cancer antigen tests instead of just waiting for symptoms to become apparent. So my goal is to help others do what they can to protect themselves. This site is truly a blessing and more women should know about it because the info and support here is vital. I really respect that you all have decided to fight this disease with as much support and information you can get because of this you stand a better chance of beating it. I hope the 30% recurrence number goes down to 0 due to new treatments and more informed women like yourselves. Best wishes and long lives to you all.0 -
I am very thankful I have found the tamoxifen doable. I certainly have some aches and pains, don't like the hot flashes and some days fatigue is an issue but overall I have handled the pills well and will continue to take them as long as I can especially if they are helping. I also tend to be an active person so I wonder if that is helping to minimize the aches. Coming down my stairs in the am I look like a 90 yr. old women but once the juices start flowing the joints feel fine. So I think it comes down to being a personal decision and doing what is right for you.0 -
aaoaao....thank you! What compassion you have shown to take the time to reach out to us!! Sadly, I have known to many friends who have passed from BC, it's not pink at all...it's heart breaking! I've personally chosen to fight with every weapon I can...I see the shadow of fear in my children's eyes I pray I never see the fear clearly on their face.! You are woman of great courage, as facing stage IV each day takes that! I have nothing but the deepest respect for woman living with stage IV and am always so thankful when they join in with their insight and wisdom!! Hoping you are blessed with more years than you think and that every moment with your son is joyful!!! Thank you again!!0 -
aaoaao, your first post was one of the most powerful posts I have read here or anywhere. Thank you so much for posting all of that.0 -
Thanks everyone for the support, it really does mean a lot to me. I just want to give you all encouragement to get through the years of hormonal treatments. Yes the side effects can be difficult to deal with and I fully understand the temptation or even the need to stop. I also understand that for some the side effects are debilitating, so they really can't continue. Believe me when I was dealing with the side effects, I also thought about quitting so I don't want to minimize what any of you are going through. The hot flashes were unbelievable, the chemo brain aggravating (I was an accountant and it affected my ability to function a lot), and the leg aches were painful. However, those experiences doesn't compare to what I feel now, and they're not going away. If I can help just one woman find the strength to continue, despite the side effects, I will feel that my situation isn't just one more sad story.
Brenda0 -
planetbananas - Does the Voltaren gel work for you? I was thinking about asking for a prescription from my PCP.
aaoaao - Truth!!! Much appreciated....
I tried as hard as I could to stay on Arimidex, but the SEs were not just annoying, they were disabling and dangerous, and my MO took me off it after only a year. I started Femara last month, and I am determined to be one of the 30% of my MO's patients who have few or no SEs.0 -
aaoaao....Your post is very thought provoking...I'm one of the gals who said enough is enough after 3 1/2 years of misery on AI's....I tried them all...my QOL of life was suffering in all aspects of my life...work and home....I had side effect after side effect and was taking Rx after Rx to deal with everything...insomnia had me sleeping 4 hours/night and 3 wrist surgeries while on the AI's....I finally made peace that I had done everything I could in my battle against the beast....I know a couple gals who progressed on AI's and unfortunately have lost their battle....and for me, I could no longer continue on the AI's knowing there were no guarantees....My onc asks me at every visit if I want to go back on the AI's and I've told him not unless something new comes along...he still sees me every 6 months.....I honestly don't know what I'll do if I progress....
I admire your strength and fortitude and wisdom you have shared....and I thank you for it...0 -
Blessings2011, yes the Voltaren is great as is Celebrex. If you told me a year ago that I would be taking either as well as starting Arimidex in Jan (I'm on Tamox until then but my ovaries were just removed) I would have said NO WAY, but the side effects of no estrogen at 44 are just too great.
I have gone from rebelling against the meds to being grateful that I can walk my dogs, get on the treadmill etc. My knuckles can be triple in size in the morning but the Voltaren puts them back to normal within 30 minutes. I highly recommend. I tried to find a natural remedy but nothing worked for me. Good luck to you.0 -
Brenda - Thank you for your wonderful post. I pray every woman reads it. I'm so sorry for your heartbreak. Praying for your comfort and wishing you many wonderful times with your precious family. Gentle hug.0 -
I think there's a couple of terms here that need clearing up - recurrence vs. metastasis. I hope somebody will step up and correct me if I am wrong. From what I can tell 'recurrence' means that the cancer has returned in the breast. Maybe because they didn't cut it all out the first time, maybe because the radiation or chemo didn't kill off all the cancer cells. 'Metastasis' means that breast cancer has spread to distal areas - like the bone. liver, lungs or brain - it's not curable, you will die from it but there are treatments (worse from what I understand than than those things we go through when BC is in the breast or nodes.
Estrogen blockers aren't about recurrence. They're a prophylactic for metastasis. Usually we all get a PET or CAT or whatever & if we're stage 3, that means there's no indication of BC elsewhere (otherwise we'd be stage IV). BUT, the docs know that there can be cancer cells in our bones, liver, lungs or brain, that just haven't replicated enough to show up in scans.IF there are these cells (and there's a good likelihood that there are, then the idea is to stop them from replicating and to kill them off.
If the cells (which may or may not exist) have receptors that bind with estrogen or progesterone, then the E & P feeds them & they multiply - eventually causing bone, liver, lung, or brain mets which can NOT be cured. It's not 'recurrence' -it's metastasis. I'm on Tamaxofin - it's the same 'shape' as estrogen, so if there are cancer cells out there, it binds to them & 'blocks' the estrogen, but unlike the estrogen, it doesn't 'feed' the cells.
If you are stage 3, then your chances that there are already cancer cells elsewhere in your body is pretty high. If taking one blocker is rough, please ask your oncologist about another type or other meds to treat the side effects.I tried black cohash for hot flashes & switched to a prescription med after the cohash only helped a little. Talk to your onc., if he or she isn't helpful, see another one. It's always your choice, but I'd suspect that staying on the blockers for a couple of years is better than no years.0 -
Ziggypop, thanks for putting that down so clearly. I'm terrible about using "recurrence" when I'm talking about metastasis, even though I know the difference. I think it's a more understandable word for the general public, but here where we're all immersed it the BC world and know the difference, it matters more.0 -
I had an awful time with Tamoxifen. I lasted 6 months on it and the bone pain, psychosis, vettigo- it all was horrible and it was no way to live. Plus I gained a LOT of weight.
My gut was telling me to stop- and finally I did. My MO wanted me on another one but I refused.
If I walk into my oncologist, and he ignores my concerns about working in an unventilated workplace loaded with fumes and solvents and a list of endocrine disrupting chemicals- then tries his best to make me take this drug- then my best interests are not in his heart. My side effects were not "common" but I came here and found all these women posting with the same problems I did. I do not trust my MO. He also told me my risk was greater if I was around pesticides. The makers of Tamoxifen also make a nasty pesticide linked to breast cancer and banned in Europe. They can keep their pills. The side effects aren't worth it and neither are their Big Pharm politics- no thanks. I'm done with this cancer machine.0 -
Mandala...I agree with you, so sorry! I take Dr. Wong's herbal Tamoxifen and have been doing great!
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Joellelee, just curious, do you own stock in "Dr. Wong's herbal Tamoxifen?" No offense, but you sound like a commercial for him, posting the same spin all over the boards.0 -
Mandala, I'm very sorry about your side-effects, psychosis? Definately sounds like tamoxifen did not agree with you!
But, about tamoifen's manufacturer and big Pharma--tamox has been generic for the last decade plus. There are 3-4 different manufacturers, not one who also does pestasides and I don't see how generic drugs are moneymakers for big Pharma.
Also, if you feel like answering, I'm not following how your onc has control over where you choose to work, or am I reading that wrong?
I'd like to understand what you're saying, but right now I'm not...0 -
I don't understand the work situation either. You say he isn't concerned that you worked around chemicals in an unventilated environment but how did he force you to work there. I don't think he made you take the job or keep it. You also say you don't trust your MO, but you continued to see him. Have you tried any other MOs before determining that they're all part of the big PHARMA. As for the makers (all of them) of tamoxifen making pesticides too, I'd like to see your research and that data to support that assertion. If you're going to make a blanket statement like that you should provide details too. You want to get off the cancer machine..the cancer machine sucks up who it wants to..that's the way cancer works. The cancer is the machine, your MO is just trying to save your life. He financially gains nothing in trying to get you to take an anti-hormonal. If there is a "big brother" trying to control people, I'm sure they have better things to do than forcing you to work somewhere and paying your MO to force pesticide tainted pills down your throat. Go the alternative route if you want, that is everyone's choice to make, but don't post misleading information to persuade others to follow your path.0 -
I am 41. I really trust my doctor. He said I should be on Tamoxifen for 10 years. My aunt had uterine cancer, so we are also discussing doing a hysterectomy instead and removing my ovaries and taking one of the other suppressors for 5 years. I am not happy about basically going through menopause at 41, but I am trying to do everything I am able to do that my doctor says will improve my chances to be here for my children. Side effects have already limited my chemo. Hopefully radiation will go better. How I tolerate the medicine remains to be seen, and it is good to see there are boards here to discuss other ways that may help if need be.
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I don't stop in much anymore, but I couldn't pass this by when I breezed through today.
I'm going to tell you a story, and it's a true story.
A friend of mine's sister (we'll call her M) was diagnosed with Stage 1A BC in 2008, the same year of my diagnosis. She had a lumpectomy and radiation. Her doctors put her on tamoxifen, but she didn't like the side effects and stopped taking it after six months. In the spring of 2013, M began to lose weight and cough a lot. On June 1, 2013, M was diagnosed with mets to her stomach, lungs, and liver. M died 29 days later. Yes, that's TWENTY-NINE DAYS later. Her family is absolutely devastated. They thought she was "cured." Maybe if she had stayed on tamoxifen, she would have been (or as close to it as you can be, considering her favorable diagnosis). I can't imagine any side effect worse than that. Please take the pill.0 -
Side effects of these little pills can be awful. But not as awful as the side effects from stage IV treatment. Please take the pills.0 -
Still reading all the comments. Mandala, I'm so sorry for what you went thru on the Tamoxifen.. All the same happened to me, also, and then finally the Aromasin, and feeling I too was done with this cancer machine. But now I am also reading the comments from aaoaao, and do really get was she's saying. Celtic, all I can say is Wow! That could be me! You really scared me. Yet here is another concern I have. Just throwing it out there to you all. Many of you are in your 40's right? That's young to me. I was diagnosed at 59. I am now 64. I am at the age were I feel, what's the importance of taking hormone blockers now? The chance that they will protect me from mets for another decade or two? I'm at the age where everything is going to start breaking down anyway. The aches are bad but intolerable on AI's. Sometimes I wonder if the aches are from arthritis or bone mets. I have this cough on and off lately and sometimes wonder if it's fall allergy or lung mets. There is no way of knowing unless my onc does a scan. I do feel I want to really have a deep discussion about all of this with my onc.0 -
I never said my oncologist forced me to work there. I worked in a REALLY nasty environment that I didn't realize was bad until I was going through treatment and started seeing these medical studies of endocrine disrupting chemicals causing female issues and breast cancer. (My work's air quality was pretty much the equivalent to smoking a pack of cigarettes every hour. I didn't realize I was around these chemicals until I started reading the labels in the printing room after I was diagnosed. I found benzene, methylene chloride, trichloroethylene, hexane, xylene, vinyl chloride - T-shirt production is freaking poisonous.- just to name a few(I was an office worker /embroiderer in a print shop) I also worked right through chemo around this crap- so I had toxic crap assaulting me from everywhere- including a chemical that had a big giant warning label stating "People with tumors, cardiac and liver problems should not use this product"... This is a popular dry cleaning spot remover we used to correct mistakes in production-...I told my oncologist and he basically blew me off. If an oncologist's line of work and years of study are to help the patient kick cancers ass as much as possible- then why does he tell me that my work environment is nothing to be concerned about? I don't want my cancer coming back. Returning to my job is the same if I started chain smoking. I would love to fire him but I'm hard pressed to find any other ones in my area that will take my insurance that don't have a bad reputation.
I didn't know I was going to be judged because I'm not a fan of cancer as a side effect. Everyone I have known personally that took Tamoxifen had big problems like stroke, clots, and cancer. I had big problems. I'm 37. I'm not a fan of feeling 80. No thanks.
I completed my treatments, and I do not regret my decisions, but I don't feel Tamoxifen was good for me.
and as far as the correlation between the pesticide maker also making these pills- here's a nice article with a basic rundown of information. I do my research too. Regardless if it's generic- or they don't make it anymore, the history is there.
http://www.alive.com/articles/view/18406/seeing_deception_is_your_only_protection0 -
If you could read the warning sign on the label, why did you need your oncologist to tell you it could be dangerous? Was it his job to tell you to quit working around toxic chemicals when you already knew it was toxic? You would love to fire him but all the other oncologists who take your insurance have a bad reputation. So you'd rather stay with a doctor you KNOW is incompetent and don't trust then to try another doctor solely based on "reputation". You talk about not wanting your cancer to come back...I'd try as many different doctors as I could if I thought my current doctor was blowing me off. That's like saying I'll live in hell because I've heard other places are worse than hell. You have to be the one to make the change. You say you read the label after your dx and while you were still "in treatment", and then later you say "I worked right through chemo." So you found out someone with tumors shouldn't be working around a chemical but you continued to worked there throughout ALL your treatments. Also, someone would have to be very naive to not be aware of dealing with chemicals, even household chemicals (i.e. bleach, oven cleaners, etc.) have warning labels on them. Furthermore, use your nose. My sister worked in an office at a body shop, the fumes from the paint were strong. She quit after 2 weeks because she was planning on getting pregnant and KNEW the fumes were toxic because she followed her nose and read the labels. Ultimately, people have to take responsibility for their actions.
Everyone you know who took Tamoxifen had strokes, clots, and cancer. Do you know a huge number of people who previously had breast cancer and took Tamoxifen? Of course, everyone you know on Tamoxifen had cancer. Tamoxifen is given AFTER someone's had cancer. So if the breast cancer returns while or after taking Tamoxifen, it's undeniably the pill's fault. Did Tamoxifen cause the initial breast cancer? Isn't it possible the cancer recurred because it had already spread beyond the breast in the first place? Also, your "research" appears to be one possibly biased article from 9 years ago. As for your being judged here, you post your judgements on certain treatments and when people question you about how you derived those judgements, you get upset. Please understand that when you make blanket statements like "everyone I know", "all the other doctors have bad reps" I might see it as a slight exaggeration. I know a couple of people that took Tamoxifen, my mother was one, and had neither a stroke, a blood clot, or a return of cancer. Should I go around claiming "everyone I know had their cancer cured by Tamoxifen without any side effects." Wouldn't that be quite a small sample size. You have the right to your opinion and to state it here, I also have the right to a different opinion and to state it also. If you want to post your opinions, please respect the right of others to post theirs.0 -
aaoaa
I really appreciate your posts. You are very intelligent and insightful. You add a lot of value to these boards.
I am on Tamoxafin and so was my mother. She was supposed to have chemo but choose not to so she took Tamoxafin and had rads instead. She is still here 20 years later. I have had some side effects from the Tamoxafin but I am happy to take it. My children still need me!0 -
The problem with using data from 9 years ago is that it might be outdated.Who Makes Tamoxifen?
Tamoxifen citrate (Nolvadex®) is a medication licensed to treat or prevent breast cancer. Various strengths and forms of this medication are available; all forms require a prescription. If you are prescribed this medication, you may wonder, "Who makes tamoxifen?" The drug was once manufactured by AstraZeneca Pharmaceuticals. However, AstraZeneca decided to stop making brand-name Nolvadex in 2006. Fortunately, several companies have chosen to make generic versions of tamoxifen. These generic products are made by several manufacturers, including:- Mylan Laboratories
- Teva Pharmaceuticals
- Roxane Laboratories
http://breast-cancer.emedtv.com/tamoxifen/who-makes-tamoxifen.html
Additional information about Tamoxifen and its effectiveness:
Another article about Tamoxifen and its risks (not everyone should take it):0 -
I respect your opinion, and if Tamoxifen is working for you, great.
It did not work for me and despite my repeated questions, side effects, trips to the ER, skeleton pain like awful, and bringing it up, they just said "we've never heard of these side effects, take the pill".
I worked through my chemo- 4 rounds of AC and 12 Taxols...I had a shitstorm of cancer in my armpit that was 3cm AFTER all that chemo- as well as 3 more tumors in my breast. My surgery came later. Had I known what I was around- I would not have worked there. I didn't work with the chemicals- i sat at a computer and designed embroidery. You get used to the smell which I was told was the heating system and told over and over the inks, and all that stuff they used in the back was safe. Just like the pill.
I found this stuff out later. When you get diagnosed with a crazy aggressive estrogen positive cancer at age 35, with no family history-- one of the causes I seem to find in reading was "endocrine disrupting chemicals". I didn't fit the other possible causes. By the time I found this out- and believe me I was PISSED- I decided not to go back. But I had to hang in there during chemo because of that thing we all need called money and health insurance. It's ok- I got fired during treatment because I called OSHA.
I asked my oncologist about the possible repercussions of working with those chemicals and he just said it didn't matter.
You go your way- and I will go mine. But getting a attitude with me about something like my job, wondering why I'm not hitting the pavement 24-7 visiting doctors when you really have no idea how crazy my life is right now and assuming I am naive when you don't know me isn't cool. You call me naive for not realizing the severity of my situation or reading labels- but this label is ok?
Someone posted a question- I gave my OPINION- and my personal experience- and happened to reveal some company's dirty little secret and you jumped on me. I don't have to like whatever a doctor tells me. I don't have to buy his product either.
Have a great day. I wish you all nothing but great health and happiness.0
