For those who refused Tamoxifen x-posted Hormone tx
Comments
-
I don't know why mainstreamers try to push their drugs on us.
-
janeluvs dogs- There you go again! Nobody is trying to push any drugs on anyone. We are all trying to give honest feedback, so each person can make up their own mind. YOU seem to be the only one with an anti drug agenda. I hate taking medications, but they definitely have their place. I'm still not sure if I will take Tamo, but only I can make that decision. And I am STILL waiting for you to say whether you have BC. No, you do not have to put your diagnosis, but it is a very simple question. Why would you not be willing to answer it?
-
Member, I'm saying that the fact that she GUESSED at my recurrence rate was not helpful. When I got on adjuvant online I got that Tamoxifen would decrease my risk by 5.5%, not 15%. She said, and I quote "Whether you're ER+ or - makes no difference in your prognosis, it just means we can treat you with Tamoxifen if you are +."
And it's not an argument for not trying it because I already have tried it and it's not working out so well! Hence my salty demeanor!
-
Designer, I owe you nothing. Get used to it. Why would you ask such a question, anyway? To change the subject away from the evidence?
You can't hide the Tamoxifen facts or make them a secret.
Blessings.
-
Twinmom,
http://www.druginfonet.com/tamoxfen.htm
Node negative people like yourself only had an overall survival of 3.5%. over nontakers. That means it has a 96.5% chance of not helping you survive and many debilitating side effects.
There are so many alternatives to Tamox to be considered. But you know that!
-
I do agree with you about not having an ooph. I think a lot of docs push it and they really don't understand the consequences. (And its FASCINATING to me that there is always a broo-ha-ha against tamoxifen and AIs from certain quarters, but you never hear a peep about the potentially devastating and permanent effects of an ooph. Maybe yanking perfectly good body parts is seen as more "natural" than a pharmaceutical intervention, but I find it fairly shocking how little dissent there is to oophs on these boards and how much there is, in contrast, to proven and generally more mild drugs.)
And I'm sorry your onc is being so vague. To me that points toward a second opinion with a different onc. I know I was also 95% er/pr+ and my sense was that tamoxifen was as effective as chemo for me. I wish you had an onc who would give you data for your specific situation (not a general figure for node negative bc that Jane throws out). I know that the fact that you are her2+, young and highly er/pr+ will affect you prognosis with and without tamoxifen, and you should have that level of specific advice. I missed this, but have you been on tamoxifen? Because if you haven't, you can try it and see if you have bad side effects.
-
MOC, do you have any actual documented evidence to support your claims? I see you giving your personal impressions but I would just love to see the actual studies. Thank you so much!
-
Member, yes, somewhere in this thread I posted about it. I started it on July 24th and by day #9 I was ready to kill myself or someone else. Severe itching, bloating, visual disturbances, fatigue, the shakes, anger/irritability, my depression came back after 10 years, my eczema came back after two years - out of nowhere. My poor little boys - I was a monster to them. When I called the doc they told me to stop it for a week. Within two days the bloating, fatigue, depression and eczema where gone. Within three days the visual disturbances and shakes where gone. Now I'm just dealing with the itching which has subsided a great deal but hasn't completely stopped yet. I wish I were so lucky to have hot flashes and that's it - of course I would keep taking it if that was all. I would rather have my boys remember me as a loving, caring, kind mommy - even if it ends up coming back - than have a mommy who screamed at them non-stop and layed on the couch and stared at the wall all day for the next five years.
-
Hi Ladies
I have a different issue related to Tamox. I would love to hear your opininion MOFTC, you always have such objective data and opinions and I always enjoy your posts.
My Onc has discouraged me from Tamox from the get go, (due to Her2 status) I was totally premenopausal so my Onc (very nationally renown Onc in BC) asked me to do Zoladex. He felt that the studies demonstrate that Zoladex in Premeno women is just as effective as Tamox (I believe he quoted the Zebra study). Anyway I have had sooooo many issues having my ovaries shut down that now he is suggesting when I hit my 3 year next spring abandoning all hormonal therapy as I was 16 percent ER positive and feels my most important benefit was from Herceptin.
He is now weighing the risks benefits of early menopause as I have so many SE's including a 100 pt rise in cholesterol (no dietary change at all). So I guess I am asking how every one is feeling not doing the tamox especially after ovarian suppression for several years?
I also participate in the SWOG (zometa trial)
-
Janeluvsdogs-None of us"owe" each other anything other than RESPECT. Your "get over it" comment is certainly NOT respectful. I have not come across ANYONE on this forum who would not answer whether or not they have BC, which makes me wonder WHY you won't answer....unless you are more interested in promoting your agenda, and not here because you have BC. Most of us are open and certainly discuss our BC openly and easily. Most of us are also open to ALL methods of treatment, whether or not we chose them for ourselves. I would NEVER tell someone to NOT do something. It is only for each person to make that decision. Are you so sure Tamoxifen is not right for anyone?
-
Designer, you may want to get your facts straight for composing an email. Your post is full of errors.
Since when are facts reported by the Tamoxifen drug company "an agenda"? Where did I ever say Tamoxifen is not right for anyone? Where did I ever tell someone "not to do something?"
You cannot cite one post by me that validates your consistent misrepresentations.
It might serve you well to check your sources before misquoting people and then relying attacking people's character or questioning their diagnosis.
And it is rude of you to pry into my medical history.
Blessings!
-
I refused tamoxifen , I also refused chemo for my bc the 3% better outcome did not seem worthwhile to me, could not believe how the chat ladies reacted to me saying that, was like I had committed a mortal sin and how could I say that in chat with so many suffering the evil side effects that they were so brave to do? I stood my ground and let them be rude to me, they seemed to get over it eventually. Is a very personal choice, and 1 that can be changed at any time in the future by simply asking for a rx was my oncologists answer. Good luck with your decision. I did do rads, and the majority who told me was easy compared to chemo were wrong in my case, I burned to a crisp and compared the pain to shingles which I don't wish on amyone, we are all so differant.
-
Yes, Susan, I know how you feel. There are busybodies on this board who try to push their Tamoxifen or chemo or whatever on us. It is personal decision as you say. I wish they would stay out of our business. It is a CAM forum, after all.
-
Since Twinmom had Her2+, grade 3 cancer, the 3.5% benefit that janeluvsdogs sites is incorrect. In the study I posted above, ER+ Her2+ that took tamox had 5 year disease free survival of 82.9%, and for those that didn't take tamox it was 57.7%, an absolute difference of about 25%. Twinmom risk is probably somewhat less because she is node negative, but as we Her2+ women know, with her2+ disease, node negative doesn't necessarily give you great odds. That is why most of us are so terrified. For Her 2+ BC, even those with tiny T1a tumors node negative had recurrence rates of 25% before the days of chemo + Herceptin.
Of course Twinmom will make the decision that makes sense for her, but she should have facts to base that decision on, not a bunch of made up sh*t.
Please forgive my attitude - I can't help it, my tamox makes me cranky.
Editing since I used the wrong number from the study. DFS rate with tamox is 91.5%, without tamox it is 57.7% for an absolute difference of about 34%.
-
Orange1, the Tamoxifen study you refer to only refers to disease-free survival (recurrence) not absolute survival as the other research studies report. We have had this discussion before. We want to know how long the studies report we will be alive from all causes.
I'm sorry you are having such a hard time on Tamoxifen.
-
Twinmom, how did you handle chemo? Did you have side effects?
Did it make it easier to deal with them believeing that chemo would only last for a short time?
Have your periods returned yet? Could that be part of your discomfort with the Tamoxifen?
You had some pretty intense side effects. Do you have many allergies? Could you be allergic to something in the binders in that particular brand of Tamoxifen?
Much of the discomfort you attribute to the Tamoxifen could be a stress reaction to doing something that frightens you. For many people, taking a short break and then re-starting eliminates many of the side effects. Taking 10mg starting once a day and working up to twice a day can also help cut down on the side effects.
The fact that you are still here and still searching for answers tells me that you feel strongly that you need the extra percentage of protection that Tamoxifen affords you. If you weren't concerned about skipping it totally, you would've never started the thread, or you would have moved on by now.
I suspect that it is the five year commitment that overwhelms you. Would you find the side effects tolerable for a week? For a month? For several months? In realilty, you decide every day to take it or not, and can quit at any time.
Quality of life is important, but you are commited enough to quantity of life that you put yourself through chemo. Something tells me that interfered with your quality of life at least as much as Tamoxifen. If you can figure out what allowed you to get through that, and apply the same approach to the Tamoxifen, you may be able to get some benefit from it, and still maintain your quality of life.
Like every part of dealing with this lousy disease, you have to make the choices that let you live, not merely exist. The answers may be different for you than for others, and you have to allow yourself the luxury of honoring yourself and your tolerances.
-
disease free survival means you must be both disease free and alive. If a person dies from any cause, they are not counted in the group that is part of disease free survival.
Also perhaps you are only concerned with death from any cause, but I, and many Her2+ are interested in any recurrence, because with this aggressive disease, a recurrence generally predicts death from BC down the road. Her 2+ is not like lower grade cancer where they just remove it and you get on with life. With Her2+, you get a local recurrence and typically the mets show up a short time later.
I sited the wrong number for DFS with tamox from the Korean study posted earlier: DFS rate with tamox is 91.5%, without tamox it is 57.7% for an absolute difference of about 34%. (Again, Twinmom odds are probably somewhat better than 57% due to Herceptin and node negative, but the node negative doesn't buy you a whole lot with Her2+ BC.)
Odds are twinmom will be okay without the tamox. But with 95% ER+ Her2+, there is no evidence to suggest that the odds are really good without the tamox since all Herceptin studies were done with hormonal therapy for Her2+ ER+ BC. The Korean study results strongly suggest that tamox plays a big role in prevention of recurrence for Her2+ HR+. Unfortunately, we don't know the effect of herceptin without hormonal therapy in Her2+ HR+. Also, there is much evidence that Her2+ BC doesn't behave anything like Her2- BC, so I caution applying general BC stats to Her2+ BC.
Diagnosis: 8/2007, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+
-
Janethepain, I don't know why your so pushy in being the messenger of the scientific information about Tamoxifen's OS rates, etc. WE GET IT! WE'VE DONE OUR RESEARCH, (it doesn't take a rocket scientist to google and find the same information you have so graciously provided) Like with many treatment decisions, some of us will choose even a 1% increase OS rate whether they actually have SE's or not.
-
Since Jane asked me about research about oophs, there is a study finding that women who do not have the BRCA mutation and have their ovaries removed have a lower life expectancy. This is not well understood but there is some thought that ovaries serve a protective function for things like heart disease. If a woman has the mutation, she will extend her life expectancy by having her ovaries removed. I would think that someone with a very advanced or aggressive bc would also benefit from an ooph, but in my case it just didn't make sense. And I found none of this discussed anywhere on these forums, I would guess because everyone gets all ideological about Big Pharma but could care less about the amputation of perfectly good body parts.
Twin, I think with your her2 status and young age it might be worth looking for alternatives like Evista or Zoladex. It just sounds like your onc is not very helpful, and you do have a lot of legitimate questions, so why not another opinion? It sounds like your situation calls for a little creativity, and you should have some medical expertise assisting you with that.
Jane, you constantly call for "studies" but then you ignore the ones that contradict you.
-
Holy cow! Now I really am sorry I started this thread - it has stressed me out more than anything else. Talked to another doc today, not an onc but an MD and a former surgeon. He said if it were his wife he would strongly, strongly advise her against using Tam. So that just confirmed what I'm feeling. It was nice to not have someone throwing out scary statistics or percentages that they plucked out of thin air at me in an effort to strong-arm me into doing something I don't feel right about. I don't get it - why do we always say that nobody knows how long you're going to live - not you, not your doctor, not anyone - and that we shouldn't put stock in a doc saying you only have 5-7 years (for example). Yet we sit here and argue about who's right or wrong about how many years someone has before they recur because they did or did not take Tam. The mind is a very powerful thing. And I firmly believe I am making the right decision. I tried it, it was not for me. I can finally put the past year behind me and not dwell on cancer anymore and stress over decisions about cancer. Stress is what got me here in the first place and I refuse to do it anymore. And with that, I'm taking a break from bc.org. Watching the fighting and name calling during my decision has been disappointing and exhausting!
-
Twinmom,
Sorry this thread turned out to be such a downer, I don't think I could have stood it for as long as you did. The good news is that you have reached a decision that you can live with, and that's all you really need to get. Only God knows when our expiration date will expire. The best of luck to you.
-
Twinmom, for what it's worth, I agree 100% with your decision and DEFINITELY with your choice to stop stressing over cancer from this point forward! I wish you all the best and hope you will check in sometime down the road with your success story!
-
Twinmom: Wow, it was quite a thread!! It hurts my heart that this caused stress for you and for anyone else reading it. Tamoxifen is a difficult decision. I opted to take it, but it was hard. I have found that Acupuncture has made it very manageable, but it was a couple of years before I found that relief. During that time, I struggled. I have decided to stay on it, despite the side effects. I was diagnosed in 2007 at 38 with DCIS and had lumpectomy and radiation. My mom had been diagnosed at age 48 with invasive cancer. We are both brac negative, but the tamoxifen was something I wanted to try. However, that is my decision and I am in no way trying to influence yours. I just wanted to let everyone know that I have found that Acupuncture helps me deal with the side effects, i.e. extreme moodiness, joint pain, increased pain from pre-existing endometriosis, out of whack menstrual cycle, the list goes on!!! I am not sure if I hadn't found the acupuncture, if I would have been able to make it on tamoxifen. I have two more years to go and I feel that it has been the right decision. I have decided that no matter what happens, I won't second guess any of my decisions. Any decision I make is a result of where I am in my life at that time and the information I have at the time of the decision. No matter what decision anyone makes, it is so important to find ways to take care of yourself and nuture yourself. Find something that helps you get through all of this craziness! Mine is Acupuncture and recently exercise. Others have found diets, exercise, etc. The bottomline is that we find what gives us strength and what empowers us.
-
Twinmom, i have been ofline for a while and had not realised how toxic this thread has become. Please don't leave the forums, there are so many supportive women here to help with the rough times and to share the happy, the humorous and the downright bizzarre moments that maybe your non-BC friends aren't quite ready for. (Im still chuckling over a post over someone;'s foob falling out while she was feeding her cat and it landing on poor puss's head!) I'm glad you have found more peace over your treatment decisions now and wish you all the best
Capefolk thank you for that suggestion, I have heard the acupuncture needles are good for various BC/treatment-related issues like wieght control too., hadnt thought about it in relation to Side effects. Useful to have another tool to help if they decide i need more hormones in future....
-
i was recently diagnosed - how are you now - i AM SCARED TO DEATH of taking taxoxifen
-
All drug companies are required by law to list possible side effects. For me the benefits outweighed the SE's. I know many women who took tamoxifen for years without problems and a few who could not tolerate it. Everyone is different. Yes I was afraid to take it but I researched my hiney off and chose what was right for me. I am sorry the OP was scared off this sight, it has helped me tremendously.
-
Wow, Twinmom,
Sorry it turned out this way on the thread. I guess we can all derive that there is some passion about Tamoxifen! Good luck with your choice, and I am so happy that you feel like it's the right one.... only you know what is right for you!!!!
-
Well! I only found this because it came up as a current topic.
I am now 5 yrs post dx/tx. I did my chemo and rads. I tried Tamofifen but I couldn't tolerate the SE's. I really did try it but it was HORRIBLE. I am er+/pr+ her2- BRCA2+. I am on Evista as per my old onc but my new once seems to think it is ineffectual. He also disagrees with other things my previous onc and I agreed upon but that's another story,
So, I tried Tamox and hated it. Eventually got every SE that I didn't even know was possible. I truly think that for some of us the total lack of estrogen is more of a detriment than a positive. (IMO!)
Luckily while here no one has personally blasted me for not taking it but you will find here that more often than not you will be chided (despite non-tolerance of the drug) for not taking it. It's like you should take it even if you find you'd ratehr die than suffer thru the SE's of it but that's just my opinion of what I've read here thru the years.
I say, take it or not, it's a personal decision.
-
Honestly, i don't think I've read anyone chastising another woman who had bad side effects on tamoxifen for going off the drug. I've been on these boards for years now and the consistent advice I see is that women should try the drug and if they have intolerable side effects, like Jaybird, they can go off of it. Look, tamoxifen is a powerful drug. For many of us, thats a good thing because breast cancer is an awfully powerful disease. But powerful drugs have side effects. Many of us don't have bad side effects but some of us do. And it only makes sense to take tamoxifen if the benefits outweigh the side effects. So if you have very early stage bc, or the type of bc that doesn't respond well, or suffer intolerable side effects, you should probably not take tamoxifen. But if you have a cancer thats likely begun to travel and is responsive to tamoxifen, its probably a good idea to give it a shot. That's all.
-
The side-effect deniers will claim almost nobody gets side effects. In fact, half of the women stop taking Tamoxifen.
3.5% overall survival advantage for node-negatives is not worth all the problems when there are non toxic ways to address the issue.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team