Starting Tamoxifen - Spring 2015

Hi Loral!

That does seem like the best answer and they are trying to get it for me. Seems Teva is out of that product at the moment! I live in a small town with not many pharmacy choices and none of them have it in stock. My short term answer is that I am not taking the Watson brand and waiting for Teva to produce more. Waiting to hear from my oncologist to see what he has to say about that!

Today is day nine on 20 mg of Tamoxifen for me - and interestingly manufacturer is Watson. Think I'm learning something here I need to check into on that! I'm just a ways out from final swap surgery from TE's to implants on 9/11 and had quite a bit of pain last night - not sure wether that is part of healing or a SE. Have had some insomnia so I'm taking later in the day today instead of in the morning. I'm also not certain how long it takes to get fully into the system - don't return to oncologist until early nov unless symptoms get bad

eheinrich, yes, I probably wouldn't do chemo anyway after mu good surgery results. I have to see a RO.

Hello,

I decided to sign up for the group. Your posts really helped when I was dealing with some skin issues during radiation.

I am 52 years young, very active and other than this bump in the road, life is good. After a failed marriage and years of searching for someone to go through life with, I met an amazing man. We've been dating for 3 years and I can't imagine life without him. He has been so supportive through this journey. Even when I have felt my worst. When I felt really unattractive because of the dimples from the lumpectomy, he made me feel like I was beautiful....

My journey began May 19, 2015. Went in for my 6 month mammogram on my right side and the 1 year mammogram on my left. Right side had calcifications they had been watching for the last 15 years. Low and behold they found something on my left side. In short, I had 2 lumpectomies. First one missed a clear margin by about 5%. Second lumpectomy was all clear and no additional signs of DCIS. Prior to the lumpectomies, I had 4 stereo-tactic biopsies. Only the one came back positive with DCIS on my left side. Right side all negative.

I finish my radiation boost next Monday! (Insert Happy Feet!!!) I was treated with 26 external beam radiation sessions and then 7 boosts for a total of 33 radiation sessions. For the external beam, I did respiratory gating to protect the heart and lungs.

Very grateful it was caught so early. I had an amazing surgeon and the team of people I have met along the way, really awesome!

Here are the things that keep me up at night...

During this journey, I have had to educate myself on so much. In school, I did not like science and especially when it came to protons and neutrons and electrons and photons. Guess I know about them now. Maybe I should have paid more attention in high school. I have learned that every breast cancer case, no matter what is said, is still different. Because every person is different and how we react to the treatments can be different. I have had to become my own advocate and say what I do or don't want more than ever. When you break an arm, other than following the doctors orders for a cast and PT, you pretty much know what you're getting. But with this, it's so frustrating. I have been told that DCIS is not really cancer, it's essentially pre-cancer. Yet I have been treated the same way as if it were stage 2 cancer. And the side effects of every decision you make stays with you. Radiation, possibly damage to heart and lungs. Kind of need both of those to live. Tamoxifen, aside from feeling like I am in menopause, the fact that it can introduce other cancer and blood clots and this and that and ahhh!!! It's overwhelming and exhausting. There are no guarantees. Keep in mind, I am not on any type of prescription drugs and even when I have a headache, I usually just let nature takes it's course and work through it.

For my non-cancer, the medical oncologist wants me to take a drug for 5 years. Why? Do I have to take it now? Can I wait? If I get mammograms regularly (how they found the DCIS), then is it worth it to take the drug? Is the Oncotype Test worth identifying if I am high risk for reoccurrence. Maybe that would convince me. I don't know. I don't know what to do. I see my surgeon and medical oncologist tomorrow for a follow-up.

I know I must sound like a raging lunatic, but I think I just needed to vent. I have cried many tears at night alone. Mostly just out of frustration. Not having straight answers or information. Through this, once I decide what I am doing, I move forward and I own the decision and it allows be to remain positive. Because I believed in my choice and what I was signing up for. I can't say I am there with the Tamoxifen.

I would love to hear some encouraging words!

little ditty, you should check out last week's issue of Time magazine. Their cover story was about how doctors are starting to take a wait and see approach to DCIS instead of treating aggressively. They also discuss the Oncotype test and how it's being used to determine whether chemo is appropriate treatment for a patient or not.

Thanks for the reply Jackbirdie. I have so many questions for my surgeon and oncologist today.

downdog and jackiebirdie, you are referencing some type of tests that you had done before Tamoxifen. What are the tests and what do they help identify?

RE: After I looked into tamox pharmacokinetics and CYP2D6 alleles for you, Jackbirdie, I had mine tested. It turns out I am an ultrahigh metabolizer of tamox. For my case, the very small benefit I would derive from tamox wasn't worth the detrimental QOL SEs I experienced on only a 5mg dosage. Over the 5 months I tried and stopped taxox twice, I never once experienced a hot flash.

I am 52 and as far as I know have not begun menopause. I was taking birth control (nuvaring) up until this started (May 2015). I haven't had a period since August but it could be my body going through so much and so many changes. I was diagnosed with endometriosis years ago and birth control helped with the horrible pain. This is another reason Tamoxifen scares me.

Thank you!

Littly ditty, If you can't tolerate Tamoxifen has your MO discussed an oopheroctomy (removal of ovaries) or a shot to suppress your ovaries. After either one of these options you could be on an AI instead. I am on Tamoxifen but am having my ovaries removed with a hysterectomy because of increased risk of ovarian and endometrial cancer due to a possible genetics mutation and family history. MO based on my tolerating Tamoxifen well that I will stay on that for a year or two before switching. I am going to ask her to do the metabolism test to make sure before we make that final decision.

If one thing doesn't work keep pushing for options.

Jackbirdie your MO is smart! It is really important to be sure a person is postmenopausal before switching to an AI.. If your ovaries are still working at all, the pituitary gland will kick them into action to make up for the adrenal glands slacking off (i.e., because of the AI). The result? Very high estrogen levels. I had a friend whose doctor put her on an AI without OS because she had missed her period 2 months in a row. Never thought it might be because of the stress of, um, a cancer diagnosis...her estrogen levels were through the roof after two months of AIs with no OS... She's on lupron now but can you imagine??

thanks for that additional info and validation. I did discuss the SOFT trial with my MO. He said when you drill down into the data, the AI + OS only materially benefitted much younger women than me. (Say, no older than mid-30s) so he didn't think the risks for either surgery/ooph or a drug like Lupron (which can have SEs of their own) was worth it for me.

My only question now is how long after any effects chemo may have had (chemopause) would it be reasonable to re-run those estradiol tests and not have a false reading of a true menopause so I could safely switch to an AI? Thoughts anyone?

He has already told me I will do 10 years total, in some combination of the two.

i have been on tamoxifen since Aug 1st 2013. I have had brutal side effects and learned to deal with them just with dietary changes. I used to have rashes, cystitis, weight gain, memory loss, all you can name.

I went to a nutritionist and explained everything. She suggested I'd go vegan, including a full detox, no lactose, no coffee, no meat and no wheat for a few weeks.

I've lost weight, my rashes are gone, no more cystitis and even my brain fog feels better. The hot flushes are still here but better as time goes by.

I've been back to a regular diet with protein(mostly fish), coffee and lactose in small quantities and I feel grand. The wheat has been removed from my diet forever. I know it's hard at first but it worked for me.

Somehow it reacts with tamoxifen as I've never experienced rashes before (all around my neck area).

I firmly believe we can survive these side effects without additional medication, just eating better.

Hope this helps.

Take care xx

Hi,

I have been on tamoxifen for a month, and have had the usual warm flushed at night, but not much else, until today. For the past 2 days, i have awoken to find my face red and rashy. since I am basically blind without my glasses, I used my 15x mirror to take a look, and it seems like it's hives. My face feels warm and sore, but not itchy. I also feel really dried out today, no matter how much water I drink, so there's that too...

I have a call into my MO, just to see if I need any attention. I'd be curious to know if anyone lese has had any skin issues?

Thanks!

~midgie

Midgiemoon, I'm like you, no SE's to speak of but for a couple of days in the middle of the first month I had a rash all over my thighs. It went away after a day or two and has never returned. Ironically it was the one day I had taken Allegra for allergies because my nose was itchy… my rash did not itch but was red. Keep us posted!

I had large muscle pain in the first weeks of Tamox, but it resolved. I'm not sure, like you say, how to identify where it came from or why it went. I'm really only suffering the night sweats now but I'm dealing.