Bottle 'o Tamoxifen

Runor and TaRenee - stupid question, but I had them early this week and was able to stop it from getting to bad by pointing my toes up. I can't prove it, but doing Yoga seems to be helping. Here is a link to a woman I found that has a tone of different videos, some for beginners like me! https://www.youtube.com/channel/UCFKE7WVJfvaHW5q28... Yoga seems to be helping with the cording/tightening from RADS too.

i should try yoga, a friend teaches it and has invited me many times, just never thought I would like it.

Maybe this had been brought up before.. Anyone experiencing bruising easily? I never used to bruise easy and now it seems like all i have todi it touch my legs and i get a huge bruise.

I see my MO for the first time tomorrow since starting Tamoxifen. The hot flashes are still keeping me up at night, which we will discuss.

About a month ago I had tingling in my face that lasted three days then vanished. About a month later, it came back. Today is day three and it it less. It starts on the right side cheek and nose, but then moves around - scalp, chin etc. It terrifies me because my first thought is that it is brain mets, which I know is probably unlikely, but the fear is real I did read that tingling of the face is a symptom of menopause for some. I also have horrible seasonal allergies which may be contributing.

Anyone else have this experience?

Thanks

VL22 - just to throw out a crazy thought that immediately came to mind when I read your post was Bells Palsy...a one sided condition that can have symptoms of temporary numbness, tingling, or even paralysis (again temporary) and can come on over 72 hours. The cause is compressed facial nerve brought on by infection or injury. Could you have a sinus infection from your allergies? Might be worth a check..and don’t worry, Bell’s palsy isn’t life threatening nor permanent. It could be just allergies puffing up your facial nerve. Tingling usually is nerve related.

Thanks for your responses! I did read about Bells Palsy and agree it could be that. Lula - the feeling lasts all day for the the most part for a few days, but it is definitely worse during my hot flashes.

I feel better just talking about it. I sit here and fret about it alone and get myself all worked up.

Okay. Not loving this. Night sweats were bad enough but now the day sweats are picking up steam. They are like internal nuclear disasters. They make my hair frizzy from the humidity I create. My arms are covered in sweat. Who sweats from their arms!? That's just weird !

And at night that leg thing. I talk to my leg.' Don't do it, just don't go there', I tell it. It does not listen. It goes there.

Runor- not sure if you have already tried this or not, but a good friend of mine has had great relief from the hot flashes using acupuncture. She has not had breast cancer, but her flashes were epic. She had immediate relief from the first acupuncture session. It lasted a while and they started to creep back so she went again. They may be able to address the leg cramping as well- can't hurt to ask them.

Some people are not interested in this type of treatment, so if you fall in that category just pretend I did not write this.

Wishing you cooler days and nights, and relief from the cramping.

sm627- I had that for about a week, then it went away. I suspected it was the nerves regrowing or something because it was my mastectomy side. Didn’t hurt, just annoying

I'm 49 and had a bmx and snb 3 weeks ago - was supposed to get my Oncotype score back in April, but got rediagnosed from DCIS to invasive and yadda yadda, I will see the MO again in 2 weeks. I just learned that my Oncotype score is 19. Any chance the MO lets me opt out of Tamoxifen? My nodes were good and margins were clear. The SE everyone talks about reminds me of the old Roseanne Roseanna Danna SNL skit...

ReadyAbout- Oncotype is based on the assumption that you will do 5 Years on Tamoxifen. It rates whether chemo will benefit you over and above that.

Don’t write off your options based on other people’s side effects! I see Tamoxifen as my 5 year insurance policy, and the side effects for me are tolerable.

Good luck with your decision!

ReadyAbout- my Onco score was 18, so no chemo for me, however I had radiation and am following up with tamoxifen. I did have one positive node. For me the SE's of tamoxifen are worth it. Take your time while making decisions concerning treatment that fits for you.

I felt the same way runor! I also thought acupuncture was quackery, Then I developed severe shoulder/neck pain while traveling to FL for a cruise. Hopped on the ship and immediately sought out the spa for a massage. It helped some but not much. Went to this little meeting on the ship about all the things they offered for us to do on the ship (yoga, spin classes, dance lessons, spa, acupuncture). The acupuncture guy made a compelling case and I was in quite a bit of pain with no chiropractor in sight for another 9 days. I let him do a test spot on my hand in the area between my thumb and pointer finger. It was so fast it wasn't even funny and very little pain, seriously just a little pinch (nothing like the little pinch getting a shot or blood draw either). I decided to think about it and went on my merry way. The next morning I was still miserable and decided to give it a go as I had to do something. 6 pinches later I'm laying on the table and can't believe I'm paying to just lay there - no scalp massage or foot massage even. But when he removed them the pain was somewhat better and by that evenin it was gone completely with full range of motion restored. When I got home I investigated and found an MD that that does acupuncture. went to him for awhile for neck issues and migraines. Well worth the money and the anxiety that I had to get over.

I think it's either one of two things. They don't KNOW about the side effects because they don't read the package insert OR they figure there is no other therapy they can substitute so you just have to suck it up and live with it. I am betting your doctor didn't know. (Which is just as bad).

Blownaway, no advice but just wanted to say that I'm sorry it has been so difficult for you. I hope you will fine the right AI for you!

blownaway-I switched to letrozole (one of the AIs) after developing blood clots in my lungs in tamoxifen. I was also allergic to it (MO said take a daily Zyrtec to combat it), had wicked pain (especially feet/ankles/shins/calves/hands), and horrible brain fog. It does take awhile for those SEs to go away (about 1-2 months typically). On letrozole I am not allergic, haven’t developed anymore blood clots, brain fog is just short term memory issues now and again, and my ability to multitask is not as great as it was. The only pain I have is on my left hand. Every morning when I wake up my pointer finger down and around to the top of my thumb is stiff and achy but it goes away within a few minutes. My QOL is far better in leyrozole than on tamoxifen. If you’re not post menopausal, you’d need injections every month to shut your ovaries down or have your ovaries removed to take letrozole or any of the AIs.