All Aboard the "T" train! Starting Tamoxifen After Spring Rads

Thanks, I am hoping to share positive effects

Well I was all set to start the "T" early and then had a small setback. Ended up in ER where they did rads, nothing major, and all is resolving itself over time. And I was doing so well! Ugh. I also began potassium supplements temporarily as my number was very low. It may be my BP Meds. See my Regular doc this week. I am ready to start today (4 days shy of the original 4 week after rads recommendation). I do take my other pills in the am, and Dr said anytime day or night is ok.

Anyone have thoughts on best time take T?

Thanks!

My MO said it doesn't matter what time of day you take it, just take it at the same time so you don't forget. I settled on between 8:30 and 9 am as I will normally be up and I don't want to take it in the evening.

I'm on Day 3. Hard to say if the hot flashes are worse. MO said she would prescribe Effexefor (sp?) if they're unbearable. She said I've been "such a good sport" through everything, which made me laugh. Like, "but we WILL break you!" She threatened me with weight gain, but so far all is normal. Then again, day 3 ....

I can't remember if she said five years or ten years. I think she hinted at 10 but I guess we'll have plenty of time to discuss that!

hi. I was on a.i. for 10 weeks. I had really painful and stiff knees, horrible night sweats and, worst of all , depression. I came off for a month and it took three weeks before it cleared out of my system and i slept properly again...what bliss! I started tamoxifen about two weeks ago and so far it is ok. Much less stiff, definitely fewer night sweats and so far no depression. About 6 weeks ago i started exercising with a view to reducing the risk of recurrence. Nothing very timeconsuming or difficult, just walking away from home as fast as possible for 15 minutes and then retracing my steps. I didn't expect any benefit at all, only the grim satisfaction that noone could accuse me of not trying to help myself. However, i have to say i really do feel much better and more cheerful and i recommend it. i have some calf pain, especially at night, but it isn't too bad. I am also taking a low dose aspirin: is anyone else doing that?

I'm the person who thanks my Tamoxifen every morning. I've been on it 10.5 months now. Many of the initial side effects either evened out or I figured out how to manage them. I was told by my PT that some leg exercise every day would reduce clotting risk. My surgeon told me to take an aspirin every day to potentially decrease BC risk (I was already taking one anyway), and I've kept taking it with Tamoxifen.

Any info or experiences I might be able to help you with?

I'm starting Saturday . I asked my MO if there were any restrictions while on T, specifically supplements and she told me no restrictions. I'll see her again end of August to see how T is affecting me.

Lisey, the supplements you are planning on taking, can you please tell me what each is supposed to help with?

Tbalding: I'll do my best...

Turmeric was suggested not just by my doc, but also by many women undergoing chemo for inflamation. It also helps CBD oil do it's job. It's sold at Costco and easy to take.

Vitamin D is something they want you to monitor with Breast Cancer (I was low). I need to get my numbers up... they say Vitamin K helps Vitamin D absorb, so I'll take both.

CBD Oil (legal in all 50 states as of 2014) has a ton of benefits and little side effects. I've been taking it since I found out I have BC. It's basically Pot with all the headtripping THC removed.. It's considered Hemp Oil, since there is no THC anymore.. but it's genetically modified Pot - plain and simple. I buy a tincture I put 15 drops under my tongue every morning... it allieviates pain, helps with digestion, and also this study from the NIH shows huge amounts reduce breast cancer tumors in the lab... Some studies say ER+ peeps should avoid THC, while TN Peeps need the high THC... Since I'm ER+ I just do the CBD oil only and I've had not one issue.. it reminds me of just a fish oil supplement, but I hope it's fighting any stray cancer. Here's the link from a government NIH study showing it reduces tumor size of BC http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2917429/

FIsh Oil and Flakseed Oil: I've been taking them for years because my diet has so little of them normally...

Biotin is available at Amazon and helps with any hair loss associaited with Tamoxifen.. lots of the Chemo women take it and report great results... I just don't want my hair thinning and it couldn't hurt.

and the oncologist recommends the baby aspirin for those taking Tamoxifen due to potential stroke issues.

I want to also take melatonin, and will research if I can with Tamoxifen.. the only issue would be if any of these block Tamoxifen's pathways.. so I'm doing my research, so far all looks clear.

Also just ordered the Tamoxifen test and am anxious to see how I process it. CYP2D6 metabolizing is a test that should be MANDATORY for those of us starting it. My oncologist basically said she'd only be concerned if I don't have horrible symptoms on Tamoxifen.. i.e. if you are only experiencing mild symptoms it could be you aren't metabolizing it right. I'd rather know right at the start than be sailing through 1 year of Tamoxifen only to find out it wasn't protecting me the whole time.

hi everyone. I had never heard that tamoxifen might not work as well for everyone, although there is a report on this site of a 2008 survey showing recurrence rates were significantly lower if you had nightsweats and joint pain. I have been taking ground flaxseed for a year or so and i noticed a difference in my hair and nails. It is also v v good for digestion. Is sugar really v bad to take?

I think it's important to know your individual genetic enzyme metabolism rates. More studies are needed, of course, but just having that knowledge is like knowing your Oncotype.. it helps you evaluate your choices that are unique to you.

I think the early issue is that if you are a fast metaboliser, and docs issue the standard medicine, you can have very substantial SEs... the trick is targeting your medicine dosage to your metabolism rate. And it also depends on if the medicine is an agonist or active on that enzyme line. WholeNewWorld, they probably overdosed you on what they thought worked best, rather than lowering your dosage like they should have if you are fast metabolizer.

Another important reason to really understand all of this is the reason Tamoxifen people have to go off Grapefruit juice. Because Grapefruit blocks CYP2D6 from absorbing Tamox. Someone else found an abstract showing the same with Goji Berry juice. Knowing what foods and medicines use which pathways will help you avoid items that block Tamoxifen's benefits.

To me, these types of genetic tests should be done at birth, like newborn screening is done today. That way you know which pain meds work best and in what dosages. I'm really glad I'm getting the test to help me navigate my pathways and know my individual strengths and weaknesses better.

I've read studies since 2008 saying SEs are not associated with effectiveness. My MO stated this as well. There may be info in the Bottle o' Tamoxfen thread.

I don't remember when I started having side effects. Within a few weeks, at least, I was having mild hot flashes. I later developed some pain in some joints.

I think it's worth paying attention to, but the article you linked has this to say about the results from the study it believes was better-designed:

"In an attempt to settle this issue, investigators assessed data from the large, prospective Arimidex, Tamoxifen, Alone or in Combination (ATAC) and Breast International Group (BIG) 1-98 trials that, in combination, had randomized more than 9000 patients to tamoxifen or to anastrozole or letrozole, respectively.^{[10, 11]}

"In both assessments, CYP2D6 allele status had no effect on any outcomes, including disease recurrence, distant recurrence, and overall survival.^{[12, 13]} In addition, because it was thought that the presence of hot flashes might be an indicator of metabolic activity of tamoxifen, BIG 1-98 investigators also looked at whether the presence or absence of hot flashes might correlate with CYP2D6 allele status. Again, no difference was seen between the groups.^[13]"

I'm not interested in pursuing this in this thread. Peace out.

"She killed her baby"?

I'm right behind you, ksusan