Bottle 'o Tamoxifen

Hi Sara- I had a bone mineral density test and a pelvic ultrasound prior to starting tamoxifen. My MO said it was to get a baseline for comparison with future tests.

For me, no bone density test prior to starting Tamoxifen because I'm due to have one this year to monitor my osteopenia (having a 10 year history of osteopenia is a major reason for my postmenopausal person being on Tamoxifen instead of an AI). On the other hand, my pelvic ultrasound showed a thickened endometrium which led to an endometrial biopsy which led to a robotic assisted hysterectomy and bilateral salpingo-oopherectomy last week. After getting the postop path results my gyn surgeon said I made the right decision because there were premalignant changes in my uterus. Finally started the Tamoxifen this week, over two months after finishing radiation and 4 1/2 months post breast surgery.

Moral to the story: Do get those recommended tests/checkups. I was totally asymptomatic for both the breast cancer (found on an annual mammogram) and the uterine changes.

Okay. Not loving this. Two days ago sat on the lawn, with my skirt yoinked up to my knees, and groomed the dog. Now my lower legs, which were exposed to the sun, are covered in that reddish purple mottled rash that is neither a tan nor a sunburn but something ugly and in between and I blame it 100% on that friggin Tamoxifen! This happened last time I dared to expose my calves to the sun - all splotchy and red and weird and the kid even said, Mom, gross. (thanks) I have not looked up photosensitivity as an effect of tamoxifen but will now. Thank god it doesn't happen on my face or arms! Is that because my face and arms are used to sun exposure while my pasty, white legs are not? Either way, it's not like I was out there for hours! I hate being hot and about 15 minutes into grooming the wiggly dog under the broiling sun I said, screw this. So it cannot be blamed on over exposure.

Today we are under clouds and the mosquitoes are so thick you'd be nuts to go out there with bare anything, so I'm safe from sun discolouration. Ugh.

I think it was suggested for me because I have degenerative disc disease.

runor - first let me say your posts always make me laugh! You always just tell it like it is, which I love!

I haven’t had issues with the sun, but my skin has been more sensitive to animal fur. When I groomed my dog and she was pressing up on my calves, I got these little red bumps. I also always exercise on the rug in our family room. Now I notice that my knees and elbows get itchy red bumps on them every time. Not sure if it’s the carpet itself or maybe fur on the carpet.

Either way I hate it.

I gave myself a tamoxifen vacation which is about to end. I just needed to see if I was going crazy or the SEs that my doctors are always brushing off were real. They’re real.

I’m ready to go back on, but I’m more prepared now. Also, can see that I’m going to need some Effexor or Ativan to get through this crap

New to the devil's brew. Started Tamoxifen two weeks ago, and it may be worse than Taxol. The hair I worked so hard to save during chemo via cold capping is coming out in droves. I had nearly zero hair loss after completion of chemo during the two weeks before Tamoxifen. Never had a hot flash before, but now I have about 5-7 a day and night sweats. I wonder if anyone on here had crazy over the top symptoms that eventually calmed down as the body acclimated to it? I am grasping at straws just hoping this is not going to be the next 5 years. My body must have been humming along awash in estrogen, and this was a cold hard slap. Nearly 30 years ago, my mother took it for 5 years, and I do not remember any of her hair falling out. She is doing well today sans chemo, so it may have kept her alive, which makes me willing to ride it out in full blown misery if necessary. Although, I do wonder if short intermittent breaks of a week or two are safe?

Ladies I am now 32 days on the brand name Tamoxifen and what a difference! Thankfully I still don't have hot flashes, I am actually quite cold most of the time. I am the only person walking around with a sweater on in 20 degree weather! This could be due to my naturalpath thinking I am borderline anemic. Who knows, not the doctors - they don't think I am anemic, but can't explain why my rbcs are low every other blood test. Anyway I have noticed leg and foot cramping, but if I keep on the magnesium, stretch and do yoga I seem to be able to manage it before the cramps seize up. I am taking an aspirin every morning with the Tamoxifen and I had a small fall the other day - WOW - the colours in my leg and the pain, but I will deal with that over the scare of a blood clot again! Other than that so far so good on the side effects for me. Fingers crossed it stays this way and doesn't get worse the longer I take it like it did the last time.

The nurse practitioner had no idea, but didn't think it was anemia. I think I left it as I would follow up with my GP about it. My new MO said he wasn't concerned about a blood clot anymore because I got out for a 20km bone rise that morning. I was hoping to set off my breathing issue, but it didn't happen. So strange when a week before it was.

@Humblepeace I am not sure about that specific suppliment but I do know my Onco doc said large amounts of soy can theoretically interefere with Tamoxifen's effectiveness.

Biotin is another name for Vitamin B7

Downdog, I had never heard of golfer's vasculitis, but that might be what it is. I don't know. I do not do too much strenuous outdoor exercise because, you know, sweat. I do some hoofing around, but nothing over the top. I do have very bad swelling of my feet and ankles which seems seasonal, bad in hot weather! Feels horrible. I am on a water pill for blood pressure and you'd think that would keep the swelling down. No such luck.

SM627, tamoxifen stopped my periods dead in their tracks. I was regular and heavy with no signs of slowing down and I asked the onc if Tamoxifen would stop my periods. No, he said. WRONG! Not that I'm complaining. They were so horrible that life was planned around this epic flow. I had a period July 2017, started Tamox Aug 1st and have not had anything, not even spotting, since. The ONLY good thing ab

Hi Vampeyes,

Thank you for your suggestion about talking to my MO about my change in periods. I will when I see her in October. I hope your hot flashes clam down a bit. How long are you going to be on your LCHF diet for?

I hope everything works itself out for you and things get better. Has your Tamoxifen SE become less annoying as the months have passed?

Hope you have a good rest of the week.

Hugs,

Sara

vampeyes- the memory thing is a side effect of antihirmonal treatment. No one is sure if it’s the med itself, lack of estrogen, or a combination of both. I had it really bad on tamoxifen. It’s much better on Femara/letrozole but still there. I just started taking a blueberry based memory supplement (can’t remember the name right now though - LOL!) but it has helped with focus. Glad you’re doing well!

Does anyone have one of those "cooling" pillows that are supposed to keep you cool at night? There are so many to choose?

Hi Cheryl,

I wish you the best with your LCHF I hope it helps reduce some of your Tamoxifen side effects. I understand how you feel about tired of being tired. I felt the same way when I first started taking tamoxifen and right after my MX surgery. How Long do your Hot flashes usually last? I think I might have had my first the other day but it wasn't a long one. What other ways do you cool down when one happens?

I wish I had the summer off but I am teaching summer school and it does not end until the end of July month. However, this summer school has been to bad we have a lot less children so that reduces a lot of the stressful crazy times. We have only had 15 children instead of 24, so it has been like a mini vacation within itself.

Hope your boys enjoy their summer vacation. Do you have any fun plans for yourself this summer?

Wishing you well.

Hugs,

Sara