Bottle o Tamoxifen
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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.
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VL22- do you have a hot flash right after the tingling or right before it?
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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.
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Hi Everyone,
I have been reading through the posts recently and I'm sorry that so many of us are going through difficult Tamoxifen times. I wish us all a better times this coming week. I wanted to ask you all have any of your had muscle spasms? I've been having them a lot lately in my arm. I don't know if it was from my MX surgery which was almost a year ago or if Tamoxifen is the reason for all my aches and pains.
TaRenee: Happy almost end of the school year how did your plays turn out with the children. When school does finally end please enjoy your summer. I'm teaching summer school with my little preschoolers which start Monday morning at 7:30am. I hope Tamoxifen will be kind to me this summer. I can never count on my children to. LOL
Sending Hugs and Love to all,
Sara
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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.
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runor I am so sorry you are having crappy SEs. Have you tried switching brands of Tamoxifen?
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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.
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Hi again ladies,
I posted before about the cold flashes to go with the hot flashes, and it seems as if it is a problem at least for some of us. They have mostly stopped for me, so I wanted to share. It seems for me, that my hot/ cold status is tied somehow to the amount of sugar I take in. I’m not diabetic. Not even close, healthy weight, no other health issues besides BC. I stared first noticing sugar made my hot flashes worse, so I cut it mostly out of my diet. Well That’s when the cold flashes started! I didnt put two and two together until I started having sugar again here and there, and after a while I realized, “hey, I’m not having cold flashes nearly as often.” Hardly ever now. So I mostly eat healthy, but quit the no sugar thing.
I hope maybe this could help some of you, and wondering if anyone else noticed something like this
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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
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Sara- Hi!!!! The end of the year is approaching and I am really going to miss my kids! The plays went well. I had one group use the scripts on stage (OMG I was Livid) and one group had everything memorized and no scripts and did amazing. It was a lot of fun. I am planning to do two shows next year. Maybe a musical. I dont know about that. But i am really loving it.
I am not working this summer. I could have done summer school with the elem. school for ELA but I think i just need a break. I’m tired lol. I hope your summer goes well and the Tamoxifen treats you nicely. I am hoping for less leg cramps (muscle murder) once I start working out this summer. Thats going to be it for me as far as a job goes. Work out. Get back into some kind of shape. Maybe coach some next year. I dunno about that but I’ve been asked already
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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...
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ReadyAbout - I got to opt out of chemo with a Onco score of 21, but tamoxifen is a must.
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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!
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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.
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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.
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Capecodgirl, never be worried to suggest something. IT's not that I'm anti acupuncture, but I am anti needle. Oh dear god I am PHOBIC about needles! It is a HUGE hurdle for me to get over even having a blood test. To allow someone to stick pins in me, on purpose, of my own free will ?!? Hell no!
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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.
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Six month with MO and RO yesterday. Told MO about my face feeling numb/tingling sensation and she immediately says it's not the Tamoxifen. Ok. So then shouldn’t you be looking into other causes??
Go to see RO - the physicians assistant sees me first and is like “absolutely “ it can be the tamoxifen. This sensation can be a symptom of menopause, as can the worsening or onset of allergies. He says to keep track, but not to let myself get all freaked out thinking it is brain mets, because anxiety makes the tingling even worse, which it does!
I refilled my prescription on the way home and read ALL the literature closely. Right there in black and white it says “numb and tingling skin". Do these doctors think denying the existence of these SE's will make us forget about them?
I've had very uncommon SE's throughout this journey unfortunately and truthfully if you don't fit in to the “normal" parameters they look at you like you're crazy.
End of rant!!
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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).
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Forgive me for posting this in 2 different forums, if you also read the +++ forum -For the third time (3 weeks ago), I have discontinued Tamoxifen due to severe bone pain. This last time, I took it at 1/2 dosage for almost 3 months thinking that I would have a better success rate for compliance. I'm still having bone pain to the extent of having to take a Tylenol3 last night (I know it stays in the body for a while after discontinuing).Has anyone who couldn't tolerate Tamoxifen been able to move on to a different hormone therapy with less s/e's?
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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!
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runor I totally agree with the period. I stopped as well as soon as I started tamoxifin. Its been almost 5 yrs without it and I love it. My periods have always been regular but just not having one at all feels good. I'm so scare to get off it after 5 yrs as I'm hearing ppl saying they came back on after tamoxifin. I'm so frightening of that as my husband like the no red months. lol
Is there any ladies here that actually finish tamoxifin and started their period back? I'm 52 now so I'm sure it's a possibility.
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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.
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Thanks Lula. Did your hair thin some when you started it? Every time I stop then start Tamo, more hair drops out
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Yes. On tamoxifen, it came out in large amounts in the shower. My hands would be covered in hair - when I say covered, I mean covered. Reminiscent of when I had chemo 30 years ago. The hair loss is less on letrozole, but I'm also taking 5000 of Biotin everyday now too. Some days its worse than others but I can't figure out a rhyme or reason to it. I notice that my hair is not as full, but no one else has said that they have (and I have plenty of people that would say something for sure.) No bald spots, just thinner.In addition to Biotin, one of the nurses recommended a product called It Works if the Biotin didn't help. So far the Biotin seems to be working so I haven't had to try anything else, but I wanted to throw that out there in case you needed it. I hope this answers your question!
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Thanks, Lula! I'll get the biotin. I've been using men's rogaine for many years and used to take biotin also but forgot about when chemo took all of my hair.
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I use the Natro brand. Only 1 capsule!
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hi ladies. Just want to jump in with a little fyi about biotin. If you take synthroid keep an eye on your levels. I started taking biotin and it threw my levels all out of whack. My endocrinologist told me a recent study shows it doesn't interact well with synthroid.
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Agree with not assuming vitamins are safe for you even at ok mg. My dad who has left side weakness was taking 2500 b6 daily. His neurologist told him to stop as it makes his neuromuscular problems worse. He's doing a little better along with PT. You just never know about interactions with not only other meds but other illnesses as well. Never thought the 'good' vits not taken in excess as directed could cause more problems, let alone with herbs and supps. I take nothing except D3 cuz I was low and baby aspirin for protection against stroke and clots while on T. Otherwise, it's foods, the sure fire source. I have no other health issues and never have.
So much for no such thing as too much vit b's since excess gets peed out. Not before it's gone around your body first!
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BLownaway, hope you have better luck on a different drug. Like you I take 1/2 a dose a day and still have the full range of side effects. But the hair! Oh my god I have half the hair I used to. I had to put a doodad in the tub drain to catch it because it is a clogging hazard. It's everywhere. It's falling out constantly. We can't get through a meal without someone finding a hair in their food. I'm going to have to start wearing one of those little hair net thingys. Lovely.
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