Topic: Bottle 'o Tamoxifen

Nov 1, 2019 05:28AM edj3 wrote:

Still on pause while my heart rate issue gets sorted out. My PCP has ordered a stress echocardoigram. And I noticed that my blood pressure has gone nuts--historically I have low blood pressure but in the last week, it's been in the 140s (I'm usually 110) for the top number. Now I wonder if the Prolia is affecting me there, an increase in blood pressure is a common side effect.

This just sucks.

Nov 1, 2019 06:40PM WorryThePooh wrote:

I've been on Tamoxifen only one month, but I find it makes me need to pee more often and more urgently! Very annoying in the middle of the night, plus on road trips. Going on one tomorrow and feeling a bit anxious about this issue.

Nov 2, 2019 05:14AM DLRF wrote:

Hi everyone - this is my first post.

I am 43 and just told I have an almost 1/2 chance of lifetime cancer (technically 43%) due to a robust family history, many pre-menapausal (two great grandmothers, two grandmothers, two aunts). My BRCA 1/2 tests were negative and my last genetic test showed nothing else causative (although a new test is pending).

I'm a widow and recently remarried to a wonderful widower. As you might imagine, I want to be around as long as possible for him and or my son and step-kids. I also have two friends (my age diagnosed with stage 4 cancers this year).

I saw my first BS this week and she is wants me to consider tamoxifen - as does my mother who was in the trials in the 90s. I have been living with this specter since I was about 15 and realized the cancer in my family was more than most and that meant I had a good chance of developing it too....I know this is going to be challenging, but I feel like I have finally been given the green light to be really proactive and I need to do that for my own mental health.

So....

• What are the top questions I need to ask my medical oncologist before walking in next week?
• What are the top things I need to think about before diving in?

DLRF

Nov 2, 2019 05:47AM Rah2464 wrote:

DLRF sorry you have such a strong family history - my fam is riddled with cancer as well, all types. Really glad you are thinking proactively.

For me, Tamox is a very difficult little white pill. I have a complex relationship with it. I would be very interested in what your MO has to say about dosing levels. Can you get the preventative effect with a very low dose so as to avoid a lot of the side effects (some lucky souls don't have these)? 20 mg is a beast for a lot of us. Heck for some 10 mg is rough it is so individual. You may want to discuss genetic testing to see how well you would metabolize T as a lot of medications utilize the same pathway. I am an intermediate metabolizer so I have to really watch any additional medications. I would also want to know how long would the plan be for this protocol. 5 years? 10? until you hit menopause?

The other thing I would be curious about is what is your monitoring plan. Would your MO consider having a baseline MRI to check your breasts thoroughly. Not sure if you have dense tissue or not, but mammos and ultrasounds are not 100% diagnostic. And would increased monitoring perhaps even offset the need for tamoxifen? Or perhaps reduce the dosing to a tolerable level?

I wish you the best at this meeting with your MO, and I hope you find a strategy that works for you.

Nov 2, 2019 11:48AM DLRF wrote:

Thanks Rah2464 and flashlight

Apologies for leaving out some of the details -

Family history of breast cancer includes 2 great grandmothers diagnosed in their 50 assume pre-menapausal - 2 grandmothers both diagnosed in their 40s - one had a second primary site later. My two paternal aunts, one was early 50s and pre-menapausal and the other was post in her 70s. Family history also includes some melanoma (dad, grandfather), colon (one of the grandmothers) and esophogeal. Lordy - its a lot.

The BS is definitely upping my monitoring quite a bit. I will be getting an annual mammogram (which I have been for the last 5 years or so), an annual MRI, and a bi-annual breast exam with her. Re: density, I am "super" dense and fibrocystic. In fact the BS made sure I was clear that she does exams all day long and I am on the top end of the spectrum.

I also failed to mention I had a hyperplasia years ago removed. It was not atypia.

The BS said the tamoxifen would reduce my numbers by half if I stayed on the full course. I guess I'm wondering if this is the right path...if I will still be 20+ percent. I know there are more radical options which are also not perfect solutions....

Anyway, thanks again for the advice...

DLRF

Nov 2, 2019 03:15PM Beaverntx wrote:

runor, re the "pee thing" you are absolutely correct! I've given up and wear a pad every day, got tired of having to change clothes. Some days don't need the pad, others have to change it once or twice. I can deal with this, so far. My bad days are when the fatigue and brain fog hit together and I am so lethargic that practically nothing gets done and I don't even care (until the not getting done catches up with me)! Those are the days I seriously consider quitting but have not done so yet. Will be having a discussion with my prescriber this month when I see her.

Nov 3, 2019 01:29PM Mymomsgirl wrote:

DLRF I saw that you mentioned genetic testing, I have found a lot stop at the 2 main Gene's. I have a family history as well and was just waiting for that shoe to drop. When I was diagnosed I had the 9 high risk Gene's tested and 38 mid risk Gene's tested because that would impact my surgical decision. Ironically I'm more apt to get colon cancer versus breast cancer. Hope your appointment goes well.

Nov 5, 2019 02:56PM Beaverntx wrote:

Can't say I noticed a slowdown until several months after starting to take Biotin. It does seem to be a bit better now.

Nov 14, 2019 09:03PM molliefish wrote:

Nov 15, 2019 01:43AM edj3 wrote:

You can have mine--I'm not taking it ;)

Nov 15, 2019 05:09AM edj3 wrote:

Hey LomLin, the colonoscopy will rule out any microscopic bleeding from your colon.

Nov 15, 2019 05:27AM TrmTab wrote:

LomLin - I had my 6 month follow up with MO on Tuesday...he didn't take blood at all. When I questioned him on it, not taking blood like he did regularly when I was on Arimedix he said "no need to with T"

Now I need to get my primary back on schedule to take blood as she stopped because MO was taking blood 2-3 times a year! It's a merry go round. TT

Nov 15, 2019 05:52AM edj3 wrote:

LomLin, not necessarily. Microscopic means it's nearly impossible to see.

True story, a few years ago when I traveled about 95% of the time for work (all by plane), I took one aspirin a day as a preventative measure for deep vein thrombosis. After a couple of years of that, my blood work showed a drop in red blood cells. I've always run slightly anemic but this time I was well into anemic territory.

So my PCP told me to stop taking the aspirin for a month and then get retested. He said if it didn't drop, he would order other tests (including a colonoscopy) to see what was going on. But good news for me, stopping the aspirin did the trick and I returned to my normal, slightly anemic levels.

That's when he told me that in some people (waves hand), aspirin can cause that microscopic bleeding in the gut. Needless to say, I don't take aspirin any more.

Nov 15, 2019 07:07AM Lomlin wrote:

I did see this:

Low blood cell counts have happened with this medicine (tamoxifen tablets). If blood cell counts get very low, this can lead to bleeding problems, infections, or anemia. ... This medicine may raise the chance of getting cataracts or the need to have cataract surgery. Talk with the doctor.

Nov 15, 2019 09:32AM runor wrote:

Re: tamoxifen shortages. I know not everyone is comfortable with my view, but I am pretty confident that I'll make it until 2020 with my current supply of tamox, because I take half a pill a day. I think if people are worried about running out, they could cut back to 1/2 a pill a day until there is more Tamoxifen available and then resume their 20mg tablet. I would rather stay on a drug I am familiar with than do a short shift over to another drug and then bounce back to tamoxifen again. My one month supply will last me almost twice that long. I do take a whole pill twice a week, I am pretty confident (perhaps wrongly) that there is sufficient tamoxifen in my system. Consider 1/2 tablets for the short term.