Bottle 'o Tamoxifen

Hi Pequod, and welcome to Breastcancer.org!

Thank you for sharing your good experience with tamoxifen, though we are sorry to hear of your second diagnosis. You're sure to find others here who can share in your circumstances.

Thanks again for posting, and we look forward to hearing more from you soon!

--The Mods

I forgot 1 se, probably cause it doesn't bother me. Dark brown discharge for a couple days then goes away for several days. I just wear pads.

Spoonie, Rosabella and Runor - sorry I was away visiting my Aunt who is 90 and has never had any health issues. Lucky lady!

In answer to your questions, my MO was receptive to the genetic testing for CYP2D6 pathway, but with the OneOme testing protocol. We had discussed testing back when I first started Tamoxifen, but the testing costs were very expensive and she said insurance had not covered it for any of her patients. When I brought it up again this year with a self pay service, she said she had recently begun using OneOme. She wanted that because it was directed by her, and results were fed to her first. She thought the testing would cost about $200 out of pocket but my insurance covered it entirely.

Runor I agree with you about the mechanism. I suspect the metabolizing has to occur within a specific time frame before your body flushes any residual medicine out? Therefore if you don't have normal gene alleles, you can't process as much within the time window. So more medicine dumped in would equal more medicine metabolized. So now I am thinking why would you increase the dose, why wouldn't you just take it twice a day and process 12 hours apart? I will send a question to my MO and maybe we can get an answer on that. I seem to recall from reading some of the data on the original trials that patients took their Tamox twice a day. Makes me wonder.

What stinks is that with my particular metabolizer status, I can't take most acid reflux meds because they use the same pathway. There was one that was listed as no interaction so I will have to chase that one down.

I had hot flashes with radiation as well. They stopped shortly after my treatments were over. I am starting tamoxifen 3 weeks after I finished radiation. Hopefully like you I won’t have hot flashes. I have not had a period since I started radiation. Starting to wonder if I will ever have another one. So far with Tamoxifen I notice a little nausea and less of an appetite and I seem a bit more moody. I am so vain the side effect that worries me most is hair loss. At 49 I still have thick naturally blonde hair that I don’t want to lose. I know I have to age eventually but I feel like I’ Aged 10 years in 2 months

teva and mayne manufacturers seem to have less issues for some on tamoxifen. Maybe try different manufacturers.

No but hope it's good on you.

Thanks, Runor! Maybe between the two of our efforts, we can solve the magic riddle of how T works

Thank you, Salamandra!!! I don't feel well on this so far!!! I'm tired, have headaches, and nausea!! Hope all of us feel better soon!!! Hugs to everyone!!!

Thank you, Rosabella! I did speak with my MO and she basically said it's 20 mg only! No option of 10 mg (even though I've been taking only 10 mg since I can't tolerate any additional dose right now.) She told me that 20 mg is the only dose that has been found to be effective and data-driven. The other option is to have my ovaries removed and take Femara. Ugh! I already have osteoporosis. I feel like there are no good options.

Hope everyone has a great day!

Christine1975- I had pretty bad nausea when I first started. I was taking zofran several times a week. That did eventually subside, so hopefully that will be the case for you. The fatigue for me has been horrible, and definitely affects my QOL.

Musosgirl I did 10mg for a couple of weeks then 10 in the morning and evening and things weren't too bad. After a couple of weeks I went to 20 mg at once and after about a week the hot flashes really kicked so after 10 days I said enough of this and went back to 10 mg in the AM and PM. Amazingly after 3 days my hot flashes diminished. I do get some "warm" flashes, but most of the time things are tolerable. Good Luck!

Christine19, ask your oncologist to produce the data that says other dosages were tested and only 20mg was found to prevent recurrence. She is correct that the data is based on 20mg dosage - but that is NOT the same as saying that the 20mg dosage was tested and arrived at as the lowest effective dose. What she should say is: "There is no data showing that tamoxifen was tested at a variety of dosage levels and in the absence of such data, I am legally bound to support the status quo, which is 20mg, even though that was not arrived at by any rigorous testing methods. It is what the book says to do and having no other information I have to stick with the book. "

My oncologist would not have given me permission to take half a dose daily. I decided that was what I was doing. Then I told him what I was doing. He said some tamoxifen is better than no tamoxifen.

Having said that, in the beginning the side effects were pretty miserable but have tapered off in severity over time. Not gone, but they either got a bit better or I got used to them. Either way it did take time.

Sorry you are having such a rough time. This whole rodeo is not a fun place to be.

Thank you so much, Runor and Salamandra! I will probably just keep taking only 10 mg without my MO's blessing. At this point, I am going with my gut feeling of 'some is better than none.' I am just too sick to increase my dose right now. My MO wants me to try it for a month and if it doesn't improve, she wants me to go on monthly Lupron injections plus Femara. The other option is oophorectomy. So confusing due to all the choices and all of them having SE's!! I already have osteoporosis, so none of the alternatives really appeal to me in terms of bone loss. Sigh. Oh well, I hope everyone is doing well this weekend. Thank you so much for the support!!! Lots of hugs sent to all of you!

Spoonie, what is OS+AI???

I was on all three AIs and I got 2 years in, but just couldn't work with the joint pain and hand dysfunction. I also lost 15% of my bone mass in less than 2 years. I am going to try T next. Was at an interesting lecture last week at our BC Center. The dr commented that her in the US the dr gives the patient information and then asks them what they want to do, and in his home country the Dr uses their resources to develop the best plan and tells the patient what to do. There are pros and cons about each approach. He also spoke about how BC is not like other cancers.The recurrence of BC is much higher than other cancers. YAY ;(

I am hoping the SEs from T will be better than what I had on AI. I wonder if I will lose more hair than I have already lost? Anyone have experience with that? Can you use Rogain to re-grow hair, or is that a hormonal treatment? Have a good week everyone! I am having my colonoscopy tomorrow. Prayers please that there are no signs of colon cancer. It would be my third cancer in 2 years, and I just am no ready for that right now! Thanks!

thanks spoonie-I was not getting the "suppression"