Bottle 'o Tamoxifen

LynnBM

Thank you etnasgrl!!! Such great advice. Yes I am a worrier, I always prepare for the worst and hope for the best. Heck, even in radiation, I'm worried that the damn machine is going to malfunction and crush me!!! :-( I know pure craziness. Well, if I don't want a recurrence of cancer, I know I don't have a choice but to take the Tamo. Thank you so much for your positive encouragement!!!

momwriter

Lala,

Reporting back from my MO. She says there has been reported a slight benefit of an AI over Tam for Her2+ people. But she still prefers that I stay on Tami because:

a) even though I haven't had a period in 3 years she's not sure I've completely entered full menopause at 50. She says I'd have to take estradiol tests regularly for 6 months - says it's really bad if you make a mistake about that. She said I could suppress ovaries if I wanted but not what she advocates.

b) She says I've passed the worst recurrent window of 36 months though of course that's not guarantee. So the benefit not that beneficial. She thinks the Herceptin and Adriamyacin were prob effective because I was grade 3.

c) She doesn't like the negative impact of the AI on bone loss, vaginal dryness. etc. at my age

So our thought is now, if I continue to tolerate well, then stay on Tamox 2+ more years, and if I want, switch to an AI after 5 years on tamox. She acknowledged that length of time recommended for the hormonal therapy has extended beyond 5 years and may do so for her2+.gals as well.

So, basically, if i had pushed for an AI, she would have agreed. I think she also possibly thinks that Her2+ is the driver at this point. After 5 years, the ER+ is more and so take an AI then. I think she sees Herceptin as the silver bullet for me. And also realizes it's not an exact science- you can't control the outcome completely, so QOL factors in.

Lynn,

Yes, you may very well do fine with the tamox! At this point when you're taking that with Herceptin and also went through chemo and rads, it may be hard to know what is causing what. I take magnesium and fish oil for joint aches and muscle cramps and they help a lot. My MO recommended I take rare elements such as Zinc, selenium, copper.

I agree with Lala about stress. And yoga has been amazing both for grounding and recovery- especially for my UMX and recon side.

S.

KateB79

Is anyone doing ovarian suppression with tamoxifen? My MO wants to discuss this in three months. . .

DeeRatz

Kate-I am a bit confused about ovarian suppression. If my period still hasn't returned post chemo aren't my ovaries already suppressed? My Dr said that we wouldn't do anything unless my period comes back. I havent had once since my first chemo treatment. I will not be happy if I am going through all these hot flashes and it decides to come back. Chances are it threw me into menopause. That's my hope anyway.

lala1

momwriter--Thanks for getting back with me! So sounds like you being HER+ is really your driving factor. I'm HER- so for me it comes down to being menopausal (hysterectomy with ovary removal a year ago) and Grade 3. I do worry about being such a high grade but my BS and MO both don't seem to really care. And I am 3 1/2 years or so out from surgery so I guess I've passed that window your MO mentioned. My BS said the way he looks at it is that Tamoxifen can cause more "scary" things (i.e. blood clots and endometrial cancer) but the risk is still very low. And the AIs can cause less "scary" stuff but more of the day to day problems like you mentioned with vaginal dryness. And of course, bone loss is always a big concern. I think for now that I'll stick with the Tamoxifen and finish out the five years. Then I'll make all my docs sit down with me and help decide the next 5 years. But I'm pretty sure I'll at least try an AI. Can't hurt to try right?!

KateB79--Me too regarding yoga. It helped to recover quicker first and foremost. Then it's since helped me to really discover myself. I'd always looked at yoga, meditation and such as hooey but now I've done a complete 180. I do yoga as much as I can, try to get regular mini massages (which helps tremendously with the muscle spasms and nerve zingers I still get 3 year later), acupuncture a few times, and I'm just getting started on learning to meditate. My friends and family think it's hilarious since I was so not THAT woman. I've even learned about the joys of waxing (it's alot easier to wax once a month than try to shave the "cave" that my armpit has become). Sometimes I don't even do that and just go "natural".

As to hot flashes and night sweats, mine are pretty mild in comparison. I get a couple during the day and a couple at night. None are the drenching kind and they usually last just a few seconds. I credit my MO putting me on iCool and my holistic doc recommending Peridin-C. Between the two, I'm pretty comfortable.

lala1

And this just popped up in my inbox....

4 Ways Cancer Patients Can Benefit From Yoga

superius

Kate: my MO never even brought up ovarian suppression. Since she mentioned about eggs might still be viable, I assume the ovaries are still trying to get back to work... I also mentioned to her the tenderness on the non-BC side.

My friends in Onco research already said to do Tamoxifen for 10 yrs if I'm ok with it. (side-effect-wise)

ayr1016

KateB79 I am doing Tamoxifen with ovary suppression (Lupron). However, I have only been on the combo for 2 months and I am doing neoadjuvant hormone therapy. I'm on the fence right now if I want to continue to do ovary suppression. I have a MO apt tomorrow and will talk to her about it.

Trvler

I can't decide what I think about stress. Just like with eating right, exercising, etc…I know people who have horrible stress and never got cancer. My grandmother was one. She was the primary caregiver to my grandfather for many years and he was MEAN towards the end. She was so stressed out. Never got cancer. My sister is always under a lot of stress although it is usually self inflicted. I don't think stress is good for you. But just like all the other unknowns, it is also and unknown, IMO.

ksusan

My MO just told me that the adherence rate for taking prescribed Tamoxifen is about 40%, which I thought was interesting.

KateB79

ksusan, my MO gave me a similar statistic. This is exactly why she hasn't started injecting me with Lupron yet; "one thing at a time" is her motto for adjuvant endocrine therapy.

superius, I think a lot of this OS talk has to do with HER2. A big study just revealed that OS might be more statistically significant for premenopausal women with HER2+ BC. . . .

Anyway, I'm switching from Teva to Mylan (Walgreens made that choice for me), so we'll see if the hot flashes get any better. Fingers crossed.

Anonymous

So I've been back on the Watson brand for a week or so, and NO HOT FLASHES! However the foot cramps came back. Who knows if it's all placebo but I'll take foot cramps over hot flashes.

Speaking of adherence rate, I haven't missed a dose yet and I even take it at the same time every night.

dtad

ksusan...my MO confirmed that only 50 percent of women complete the 5 years of anti hormone therapy. Thats not a great number. Maybe its time for some research in better treatment options!

ORgal

Those completion rates must be why my MO kept asking me, you always take it? You sure you take it? You take it every day without fail? I thought they were very strange questions, since I said I take it. Of course this was after complaining about side effects so he must have been worried I was giving up on it.

MarieBernice6234

Dear ayr1016 -

Before I started the Tamoxifen, I had to come off theZoloft as well. Another equally good alternative could be Effexor. That medication can also help with the flashes. I haven't heard anything one or another about the Celexa. I haven't been on this site for a while so hopefully it all worked out okay for you.

MarieBernice6234

MarieBernice6234

Hi, All -

I haven't been on here for a while, but will be returning to it now. I have been on a holiday from the Tamoxifen since mid - January, due to having a bad emotional reaction. I was hoping that she would start me on Anastrozole. For some reason though she wanted me to retry the Tamoxifen. I am more nervous about the re-starting of this medication than using it in the first place. Has anyone else been off it and then have to re-start it again? Were the experiences similar or different?

MarieBernice6234

notdoneliving

Hi everyone

Let me start by saying I apologize if I don't respond right away. I'm really busy with work and life.

I'm feeling depressed an alone. I recently found out my thyroid is very underactive. I had an ultrasound on friday. then I read in these boards that people have asked for a thyroid shield during radiation! I had never heard of that. Why don't they use it automatically??? And I KNOW no one will admit that my thyroid issues are from radiation because my mom had hers removed in her 20s. My blood tests have always been straight down the middle of normal and suddenly my TSH was 88.

My whole body hurts. I have weird stuff going on the left side of my body (my lumpectomy was on the left) – I was having rib pain (exit point of the radiation) which seems to have spread. My RO said to take advil for 4 days to see if that knocks it out. Now I feel a bit of pressure below my rib cage on the left and the muscle at the top of the left side of my chest feels like it's kind of inflamed. After all this I worry about effects on my heart.

My world is very small and I feel like my partner thinks I'm exaggerating everything. He thinks if I read these forums I'll think everything I read is an issue for me. Life I'm a hypochondriac or something. I'd love to enroll in the cancer recovery program at our local Y but I can't afford it. I don't feel like I'm getting any support. And it's so frustrating and scary because my actual treatment was so easy. Everyone involved was so supportive. My lumpectomy was simple and successful. I felt a little tired the last few weeks of my radiation, but that was it.

The house is a wreck and I'm buried in work (I work at home).

Thanks for listening.

Sjacobs146

notdoneliving, I am sad to hear that you are having a rough time right now. Unfortunately, it's very common to encounter difficulties after treatment is completed. People expect you to go back to normal right away, they don't realize that you are living a new normal now. Plus you miss all the wonderful people who took care of you at the hospital.

I felt the same as you for a while. I became obsessed with recurrance because it felt like everyone on here experienced.a recurrance. All I did was work, sleep (but not good sleep) and on the weekends cook and clean. Finally, I made some changes in my life. I started yoga, which has helped immensely with aches and pains. I took a BCO vacation over the Summer which helped reduce the rumination over recurrance.. I joined my church choir so that I could meet new people and experience the joy of making music. I am also beginning a free rowing program for Breast Cancer survivors.

I suggest looking Into some free resources for Breast cancer survivors. The Live Strong program at the Y is free (not sure why you said that you couldn't afford it). I've heard of many others on these boards. Don't be afraid to use the Cancer card to see if you can negotiate a reduced rate at a yoga studio, I'll bet that plenty of yoga instructors would be happy to help a survivor.

Remember, so one is responsible for your happiness except for you. You can make changes for the better.

new2bc

Here are some articles about the importance of melatonin and breast cancer:

http://medicalxpress.com/news/2014-07-total-darkne...

http://medicalxpress.com/news/2016-04-biological-c...

Trvler

I guess I am toast because I can't possibly not have any light all night. I get up to go to the bathroom 3 times a night.

notdoneliving

We have a fantastic motion activated night light because my partner has MS and has to be able to see his feet when he gets up to use the bathroom in the night. I couldn't find our specific one, which we love, but here's another one:

http://www.amazon.com/AmerTac-73092CC-Motion-Activ...

Blownaway

what about a sleep mask?

Trvler

I use a sleep mask but I have to see to get to the bathroom.

mdoc524

Kate - I am having Ovaries removed in June - started Tamoxifen this past week & like you increased hot flashes especially during the night! I just ordered a "cooling" mattress pad - hoping it helps!

Also all I have been taking Effexor for Hot Flashes for about a week and a half and DR says to give it about 3 weeks at min to start working.. I think it started to help and then I started Tamoxifen - prior to Effexor I was having them every hour - horrible - now just maybe 1-2 during the day - more if I am in an area that is hot .. and in the evening 2-3 full sweats .. PCP says to give Effexor at least 3 weeks to work - only been on it about a week and a half now so fingers crossed! No other SE's ..

Mary

fralaliso

Notdoneliving,

I also live in the Lehigh Valley, PA. Are you familiar with The Cancer Support Community of the Greater Lehigh Valley? They offer free fitness programs along with support groups, cooking classes, etc. for cancer patients and survivors. Most of the sessions take place at their facility which is near the Lehigh Valley Airport. Some of the cooking classes are held in South Bethlehem. Here is a link for more information http://www.cancersupportglv.org/

It is a great organization.

molliefish

FWIW I get up through the night to go to the washroom, and I never turn the light on. Ever. When I had my kids I never turned the lights on at night when I got up to nurse them either. There is plenty of ambient light from the stars and the street lights. There has only been one place where I ran into trouble and that was on an island in the middle of Georgian Bay, in a cottage in the woods... it was black as pitch and I had to feel my way around. :-)

cjafarm

This is how I feel about Tamoxifen

notdoneliving

Wow! Thanks fralaliso! What are the odds...I've tried to look up resources around here, but couldn't really find anything. I'll check it out!

notdoneliving

absolutely, cjafarm...been there and it's so true! Although I've done that even not on meds.

Trvler

I have been on Tamoxifen since Jan. I noticed while I was on vacation in a hot climate that I had fewer hot flashes. I wasn't freezing all the time like I am here in Chicago. The cold seems to lead to hot flashes.