Tamoxifen for gals who have not had chemo
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Hi Everyone,
I'm glad this thread was started also. I met with both my rad onc and med onc yesterday (first meeting) and they are in the same building. The med onc was aware that I had met with the rad onc just before him and knew I would be starting rads soon and he handed me a script of tamoxifen. I went and filled it today and do plan on starting to take it this evening. I was never told not to take it during rads. I also did not do chemo. Although I never took the oncotype DX test, I was told right from the beginning that it was very unlikely chemo would be of any benefit to me. I was dx with invasive tubular carcinoma, stage 1, grade 1, no node involvement, small tumor size. The med onc said the type of tumor I had was the kind they typically see in much older women (I am 32) who typically present with much less aggressive tumors. From what I hear I have a good prognosis. I still think cancer sucks!!!!!!!!!
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hi there,
I am just so jealous of all the women who can tolerate the Tamox. Today I finished my radiation therapie and I will take a break from all the doc. I need some time to recover. But I made an appointment with my gyn at the end of ocotober to talk about the oophorectomie, making me postmenopaused. Or maybe I give Tamox a third chance...starting with 5mg , and then 10 mg and then 20 mg.... I still do not know what to do....But I am also afraid of getting cancer at the ovaries....
hugs to all of you
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Coleen, the risk for ovarian cysts was listed in the leaflet my surgeon gave me. I kid you not. Nena
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I have a question. Been on tamoxifen for about 9 month. Had hot flashes initially but they subsided. Now I have lower back pain and pelvic pressure. Could that be from tamoxifen causing endometriosis? I was just started to go through menopause when I was diagnosed (55). Once I started tam in 1/08, I haven't had a period. I wonder if having a hysterectomy and/or oomph is the way to go. I see my dr. in January but if this back ache and pelvic pressure continue, I am going to give her a call and see what I should do. Thanks for any input.
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I've been on Tamoxifen since Feb 07. Had BM & no chemo. I have had very few side effects with the exception of very light periods. I am premenopausal and since Dec 07, I've missed three periods. I continue to be an avid exerciser with cardio, pilates, gyrotonics & yoga (yes, I can be obsessive.) I was like this before BC and haven't changed one bit in this arena except that I am feeling much more soreness in my body with muscle aches and more recently some slight soreness in walking, from my heels up my legs. I get this pain in the middle of night when I wake up to go to the bathroom. OK, so sometimes I overdo the yoga & I try to differentiate if the muscle ache is a side effect from the Tamoxifen or from the practice. If this is truly part of the journey into menopause, I would just like to know. I am 49 now starting to get irregullar periods except that according to a saliva test I took in May, I am still premenopausal. Thank you for starting this thread.
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I started taking Tamox on 9/10/08. My side effects are mild hot flashes and not sleeping as well. I take Ambien to help me sleep---but only if I absolutely need it. I don't like taking alot of drugs. I was on Arimidex before that and I had horrible se's from it.
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Hi all I am you Skye64, I have had a terrible time with side effects from tamox and I started in jan08 after rad.
Noelleon, I have been having the same problem and a awful time with constipation. I had a bone scan {my third} oct3 and found three hot spots that are new so i am going to have a pet scan asap wheever that is, still waiting for scheduling. I am scared to death of mets. Can't find any answer as to what new spots could be. I read an article in cure today that new research shows that cancer can met by the time they find the primary {dcis}. I found this very scary. Also women with er+ are at a higher risk of met.
Sorry for the negitive but now they have found a new area in other breast but are going to wai six months to revaluate. I am trying to be very patient!
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Stefie,
Thanks. I had a whole body PET scan February '08 since there was a nodule noted in my chest on my right upper load when I had a cat scan in January. Everything came out okay. The nodule on my chest was probably from post-radiation. I had another cat scan done six month after and it was clearing up. I was reading that back pain can be attributed to endometriosis. After I have my trans vag and u/s, I go to the gyno in December. If it is endometriosis from tamoxifen, I may suggest taking my uterus out since I have to be on tam for another 4 years and I don't need my uterus. A PET scan isn't that bad. They give you intravenous and you have to wait about an hour as it goes through your system; you are then put through a machine (sort of like a cat scan - it takes about 45 minutes) so they can see everything. Hope everything turns out okay. It think the worrying/waiting is the worse.
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I need some education on this. I thought that DCIS by default is not invasive (ie it is localised to the duct it is growing in) and do not understand how it can produce mets at least until (if ever) it turns invasive. I don't mean to minimise what you are going through, just checking in case you are worrying needlessly. Please let me know if I am wrong about this.
An acquaintance of mine has had hysterectomy and has had serious complications with her intestines getting entangled on more than one occasion. If it needs to be done there is no point worrying about it but it seems to me that doctors are offering it lightly whenever our fears about Tamoxifen's effect on our uterus are mentioned. At least that was the case with me.
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Thanks for the new thread. The other one has so many posts it's over whelming. I started Tamox July 22nd. I have minor hot flashes a couple of times a day, more leg cramps than I used to have and that's about it for se's. I'm 54 and post menopausal. Like some of you I was very nervous to start. Just do it. I told myself I could always stop if the se's were really bad and as it turned out they weren't.
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Everyone has such helpful information...thank you. I still have 3 weeks of radiation left and my oncologist, who is not recommending Tamox, says it is my decision whether or not I want to take it. I would start after radiation is done. I am so confused as whether or not to take it. The oncologist is not suggesting it because she states my recurrence rate is low (2%). But I feel that if I don't take it I might be making a big mistake. I was originally diagnosed with IDC (3mm) with DCIS...but when I went for a 2nd opinion at Sloan Kettering they found no invasive cancer. So with having DCIS my recurrence rate is 2% - but what if they are wrong. (Also when Sloan did the SNB there were 5 "isolated" cells in 1 of my lymph nodes which they feel "escaped" there when I had my first biopsy....again - what happens if they are wrong!)
Has anyone decided not to take Tamox because of a low recurrence rate? They also told me that I could always try it and if I don't like the side effects I can stop taking it.
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Hello ao all I had the pet scan yesterday and fell asleep, if that tells you anything, so piece of cake. NenaH I thought the same thing and I fould an article in curetoday that says even in DCIS mets can appear by the time they have found the primary cancer and go undetected. I have had an awful time with my bones this year, arthritis has even gotten worse. I thought tamox was good for your bones but I have even shrunk 3/4 inch in the past year. Go figure! Will get results from pet tues the 21st. Will let you know.
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Stefie I hope it is good news on Tuesday. Did anyone see the post mentioning an Italian study about low doses of Tamoxifen. Any thoughts?
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Hey NenaH,I saw that post too - I bookmarked it so I can go read the full article tomorrow.. (too sleepy). Did you start your tamox yet?
I'm about 1 month on the tamox now... and I'm getting some painful cystic acne, which sucks. I feel slightly anxious, and the insomnia is on & off. I guess those things are better than getting cancer again. Gotta keep remembering that.... sigh.
Stefie - best wishes on your scan results. Please let us know!
Hugs - julieA
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My wife will probably start Tamoxifen sometime next month. She will take a test in the coming weeks to make sure she metabolizes Tamoxifen correctly. We are exploring bisphosphonate trials to go along with the Tamoxifen but still haven't decided.
Route53
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Got the bottle; ready to go... I start right after completing Mammosite radiation (which I begin tomorrow; lasts until next Tuesday).
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My doctor did not do a test to see if I metabolize tamox. Is that normal? Is there a reason why some people are tested or is everyone tested? I want to make sure I'm not missing anything.
Thanks!
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My doctor did not offer me the test too? Maybe he lives behind the moon
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I asked my oncologist to test me and he said that sometimes insurance doesn't pay for it. I told him I wanted it anyway and feel much better now that I know I'm metabolizing it. My insurance paid for the test without even asking. I think doctors are just cautious because some insurance companies are bad. I have Blue Cross Blue Shield.
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While some of our docs do live behind the moon, my oncologist gave me a couple of reasons. Her primary reason is what is she going to do with the information?
For pre-menopausal women, tamoxifen is the only hormonal option there is. And tamox, even if you don't metabolize it well, provides some protection.
She, like many doctors, sees oopherectomy + AI as a very extreme solution for young women and not appropriate for Stage 1. She encourages all her patients to do the things that are recommended for poor and intermediate metabolizers, like not drinking grapefruit juice, not taking an unrecommended SSRI, etc.
My opinion:
Most of the publications we see at this point are sponsored, in full or in part, by parties with a financial interest in the test. The test is expensive - if you get the results, how is this going to change your treatment protocol?
Most of us will never have a recurrence, even if we don't take tamoxifen. I take it for insurance.
I have really severe asthma, and have been buffeted through a number of different styles of treatment over the years. Medicine has its fashion trends. My current allergist and I are happy with the collection of medications and habits that I have, even though some are seriously out of fashion, and I always get lectures when I go to the emergency room (never for asthma, any more) from young doctors who have been taught that there are "better" therapies than what I'm on. I thank them, and offer to share my experience, but they usually don't want to go there.
If you're uncomfortable, ask more about why.
Free advise, we all know what it's worth
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I initially started with a quarter dose planning to do that only for a day or two (and incrase it gradually up to 20mg). I then discovered the article recommended on the thread on low dose Tamoxifen and continued to take quarters for 12 days. I have two side effects. Joints on my fingers hurt (particularly first thing in the morning) and I have a feeling of heaviness similar to the one I usually get a day or two before my period. I guess having side effects even at such low dose means it is doing something. I guess the question is: 'Is it enough?'.
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I was dx two years ago with bc and bone mets. I was just put on tamoxifen and six months later I was NED and still am. I have had no side effects.
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Janice54,
That's what I need to hear!! I need to hear from someone who shows some benefit from the hormonal treatments. Thank you for sharing.
It seems hardly worth all of the side effects, until someone like you lets us know that it certainly can be worth it! NED...such beautiful words!!
Congratulations and thank you, again!
Susan
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Wow, Janice you just made my day with your good news. I have read your profile and am interested in your diet and the role it played in your recovery. I presume you don't consume dairy products as I noticed you replace butter and milk with prune butter and nut milk. Please tell us more.
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Janice54- Congratulations on your wonderful response to Tamox and even bigger congrats on being and staying NED!!! Did you do any other treatment along with the Tamox?
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The day I was dx I researched and read. I was convinced that diet plays a big role in this fight. I changed mine to a healthier one. No more meat, organics when I can, purified water, no more white sugar, flour or rice. The only dairy I use is skim milk (I don't like rice milk) in cooking. I do use egg whites also. No soy....I am er+. Science doesn't know if this works but I FEEL IN CONTROL and know it does. I have more energy and lost those last tough five pounds. This works hand and hand with tamoxifen. I am 53 and also going through menopause but still no hot flashes, mood swings or night sweats. Do I love all those sweet treats....yes but I love my life more so they are out of here!!! I have found healthier alternatives though. Life is good!!
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Janice54- That's awesome. I don't know if I could be quite that disciplined! Did you have surgery before starting on the Tamox?
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I was dx with stage four right from the start....surprise, surprise. I have had no other treatment other than tamoxifen. Three months on it my cancer had decreased 50%. The next three months my scans and tests were completely normal. My life has only changed by me taking a pill at 6:00 each evening and I appreciate life a whole lot more.
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That's interesting. I never even saw an oncologist until after meeting with a breast surgeon and having a lumpectomy. Why did they decide to skip surgery and go straight to the hormonals?
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Route53 & everyone, here's a nice little PDF on the benefits of tamoxifen, including bone loss prevention. I've been reading up on this a lot & am now convinced enough to stop my Fosamax when I open that bottle of Tamoxifen in a week or so (waiting for my skin redness post rads to fade): http://kksphotos.com/files/Tamoxifen.pdf
Also, FYI everyone, here's a link about the tamoxifen metabolism test. I'm going to get it, too, I think. Why take something that you're not absorbing well?
Kathi
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