Getting on the Tamoxifen Train

labelle
labelle Member Posts: 721
edited February 2016 in Complementary and Holistic Medicine and Treatment

I guess I'm doing it after holding out for a year. I had a scare in Dec. I felt a lump in my breast and though it turned out to be nothing (well, edema caused by RADS, but not cancer) my reaction to this (pretty much totally freaked out) made me question how truly comfortable I was with my choice to turn down anti-hormonal meds. Since then I've met with my gyno to discuss an oopherectomy (again) so I could maybe go on an AI or just call the oopherectomy enough anti-hormonal action. I hadn't had my period for 7 months but in Dec and Jan it was back, starting the count down to menopausal all over again so no AI option for awhile unless I do the oopherectomy.

Because it is the beginning of a new year I have to meet my deductible and co-insurance all over again (meaning paying about $3000 out of pocket) and because my gyno agreed to monitor me closely for thickening of the endometrial lining (trans-vaginal ultrasounds every 3 months-yuck) I decided to give the Tamoxifen a go. Called my OC who said she didn't need to see me again, just called in another script for me (I never filled the first one) for the Tamoxifen and I'll see her and have blood work done along with my mammogram and meeting with the BS as scheduled at the breast center in August. Also met with my endo, who wants to start seeing me again every 3 months since I told her I was planning to start Tamoxifen and she told me not to take my thyroid meds with the Tamoxifen-it interferes with the effectiveness of the thyroid meds. Great. OC's plan is 2-3 years of Tamoxifen with a possible switch to an AI for a few years.

I guess I'm putting this on here rather than another board because I know so many of you share the same misgivings I do about taking these drugs. I get so tired of reading" just try it and you can quit if you have bad side effects." The side effects I worry about are the silent ones: endometrial cancer and blood clots. You know if hot flashes are making you completely miserable, ditto for muscle aches and sexual issues but you don't know you have a blood clot until you get one or your endometrial lining is thickening unless its being monitored and even then it might be too late. Uh! Of course last year my RO told me women "like you" don't get blood clots (of course he told me RADs would be no worse than a bad sunburn). I never have been sure what he meant by women like me, but the OC says to take an aspirin with the Tamoxifen and not to start smoking again. When Tamoxifen was first offered to me I'd only been a non-smoker for a few months, but now I've been clean for over a year so I feel a bit better about the blood clots thing.

Of course my mother progressed to stage IV while taking Tamoxifen so I know it offers no kind of blanket protection so I will continue to take supplements and use progesterone cream (which will hopefully help protect me from the gyno issues). This was a really hard decision for me for all sorts of reasons, but on Feb. 6th I'm planning to open that bottle and start popping the pills. Can't say I feel great about this choice, but I haven't felt really great about any of the treatment options, but I'm hoping for the best. Still, I wish I felt better about this plan and those pills.

· Share on FacebookShare on Twitter

Comments

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2016

    Hi Labelle - It took me a year to start taking it too. After two years on it I did an ooph then moved to Femara. For me tamoxifen was way easier so I'm back on it. I hadn't hear Tamoxifen and thyroid meds are contraindicated. I'll have to check on that. I've been on on generic synthroid for over ten years.

    Congratulations? Well, congratulations on getting the "not taking it" monkey off your back, anyway. He sure was a noisy guy for me.

    · Share on FacebookShare on Twitter
  • labelle
    labelle Member Posts: 721
    edited February 2016

    Noisy indeed! Actually I was pretty good with my choices until I had that scare. Then he started screaming at me!

    I think I knew you'd put off taking it for awhile too. I wonder how many others do. OC says it's never too late, so here I am.

    My endo did not say they're contraindicted, just that I should not take them at the same time of day. Thyroid meds are to be taken by themselves-no food, no vitamins, etc. I generally take my thyroid stuff first thing in the morning and then wait 1 1/2 to two hours before I eat breakfast. I think I'll take the Tamoxifen around 3 in the afternoon. I've read some ladies who take it a night have trouble sleeping and since I can't take it in the morning due to thyroid meds, afternoon will do.

    · Share on FacebookShare on Twitter
  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2016

    Ahhh - thanks for clearing that up. I chugalug everything first thing in the morning. Oh well.

    · Share on FacebookShare on Twitter
  • chef127
    chef127 Member Posts: 891
    edited February 2016

    labelle,

    Good for you for taking the plunge, and congrats for being smoke free for a year. IMO the smoking is the greatest thing you can do to improve your overall health. It's my biggest hurdle, very hard to do.

    For me, I just will not get on the tamo train. Like you said its not the s/e's but the invisible s/e's (that we know of) that keeps me embracing my estro. I have osteoporosis, thnx cigs and genetics! and a somewhat couch potato life style due to MS and I suffer from extreme fatigue and diabetes, high LDL and low HDL. WTF, whats next? I take meds (5) for my diabetes and LDN for the MS. That"s all I'm comfortable with. I'm really ok with leaving the BC to chance. Surgery and rads was enough. So far, I'm good. What will be will be, blahblah.

    I'm in the process of giving up my nicotine habit and will go on a 4 week vaca to Fla and hopefully that will help my mind with the process. So far its really hard.

    May the Tamo treat you well and keep the ca and scares away. Your doing the right thing.

    xoxMaureen

    · Share on FacebookShare on Twitter
  • labelle
    labelle Member Posts: 721
    edited February 2016

    Thanks for the encouragement Maureen, but I'm far from certain I am doing the right thing. I feel I've made this decision from a position of fear rather than logic. Stats say even without Tamoxifen or any hormone treatment I would be fine (80%+ chance) so the big numbers are and always have been on my side. But with no scans and no tumor markers someone pointed out to me I could have cancer in my bones or liver or where ever even now and since I'm not taking anything to slow it down................. Not a cheerful thought and there are obviously some people I shouldn't talk too, LOL!

    So basically I'm going to take this because I don't know whether my cancer has already spread or not. If surgery got it all, I'm pretty sure the lifestyle changes and supplements would be enough to prevent it from coming back. It's that stupid positive node that keeps me awake at night. OC says I'm a strange case, with a small tubular BC she wouldn't have even recommended Tamoxifen or anything else other than the surgery and RADs I've already had, if I hadn't had a positive node, which I should not have had with such a non-aggressive cancer. Which begs all sorts of questions like how and why and shows just how unpredictable BC can be even with all the technology they employ. I start Saturday, but I'm pretty sure it won't take much in terms of side effects to knock me off this train. Of course lots of women report they feel fine on Tamoxifen so we will see how it treats me. I too worry about meds for my meds but would stop taking Tamoxifen before I started on something for severe hot flashes and something for depression and on and on. I'm so not going there.

    BTW, quitting smoking is one of the very hardest things I've ever done. I tried countless times before, but as they say, if you keep trying eventually you'll make it. I used nicotine lozenges this time and even a year later I still pop one now and again and never leave the house without them---just in case the urge to buy a pack comes over me. It isn't exactly a constant struggle, but it is work.

    · Share on FacebookShare on Twitter
  • chef127
    chef127 Member Posts: 891
    edited February 2016

    Hi labelle,

    I'm trying.......I hate the constant craving, smelly clothes and house and car,etc. I got the patches, electronic cigs, nico gum, got to try the lozenges. What I really need is the determination and commitment. Biggest mistake is buying a pack and thinking I can control my self.

    Take it without thinking about it on Saturday. Many women visualize the ca being knocked out as the tamo circulates. Think of it as a good thing.

    (((())))xoxMaureen

    · Share on FacebookShare on Twitter
  • labelle
    labelle Member Posts: 721
    edited February 2016

    BTW my son quit using electronic cigs. Apparently they come in different strengths so he cut back to milder ones then started using flavors he did not like. He's been smoke free for nearly 3 years now. Different strokes and all that, but just keep on trying stuff until you find something that works for you. You are right, quitting smoking is one of the best things we can do for ourselves.

    · Share on FacebookShare on Twitter
  • New-girl
    New-girl Member Posts: 358
    edited February 2016

    So this is your last day before starting up. Please keep us posted on side effects. I too refuse to take it due to all the SE. I found out 10 days ago my 4 year anniversary would not be celebrated on 2/13. BC is back. I had no positive nodes and a bmx. Thought I was clear. I do not regret not taking it as I think there was a rouge cell that would have started growing even with Tamoxifen. But my oncologist said this time after surgery I will be taking it. I can do surgery again, gulp , even rads, double gulp but the SE of tamoxifen truly scare me. I am not ready for the sexual issues and the hot flashes. I ballooned up on birth control pills and finally 18 years after my last baby have gotten my weight where I want it. Dr. said if I gained on bc pills I will most likely do the same on tamoxifen. So cheers to starting up on Tamoxifen:)

    · Share on FacebookShare on Twitter
  • coraleliz
    coraleliz Member Posts: 1,523
    edited February 2016

    New-girl - I did terrible on BCPs! It was my reservation about taking Tamoxifen. BCPs turned me into a monster. I think I gained some weight also. I have had many SEs on Tamoxifen & can't wait to get off it(approaching 5years!) but more tolerable than BCPs. My weight remains unchanged. I'm more "nervous" than I used to be. That is probably my biggest Tamoxifen complaint. I want to return to my calm, mild mannered self. On BCPs, I would go off on people.........

    · Share on FacebookShare on Twitter

Categories