Bottle o Tamoxifen
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I think it was suggested for me because I have degenerative disc disease.
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runor, were you walking a lot in the heat? Any chance it could be exercise induced vasculitis, also called golfer's vasculitis? Hiking and walking in the heat, usually for a prolonged period can trigger it sometimes. Even travellers walking a lot and sightseeing can be afflicted, as well as runners and joggers Usually hits people when they are 50+. My husband @58 just started getting this for the first time ever golfing this month. Walking the course on a hot day for 5 hours. Has had it 4x now, some days sunnier than others. He's not affected every golf game and never had it previously golfing or walking. While wearing shorts and sunscreen, it only appears above his sock line and below his knees, so the blotchy red-purple is restricted to lower legs. His doesn't itch and is painless. It's just visually unappealing.Lying down and elevating his feet with an ice pack for an hour while watching TV makes it resolve almost completely in 24 hours. Also some upward massage movements along the calf. It's blood that can't be returned efficiently to the heart and is not a serious condition at all like vasculitis is. First time without doing anything, it lasted a few days. By all means, blame the tamoxifen for anything you want, but just something for you to consider.
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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
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VL22 - A word of warning....I've gone off and back on Tamoxifen 3 times now and each time I've restarted the Tamoxifen, I've lost handfuls of hair. Hope you keep your hair
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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?
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my experience has been that you do adjust and it does get better. Or you just grow accustom to the experience. I have less leg cramps, fewer hot flashes, and my hair doesn't seem to be shedding any more than normal. I've been on tamoxifen for 2 yrs 6 months (almost). I have gained a few pounds and can't seem to take them off but I also am strapped for time to work out, which means my treats accumulate. My experience has not been that bad and I'm grateful to be here.0
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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.
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Becca- you can try taking some biotin to help slow/stop the hair loss. 2500 to start and go to 5000 if i didn’t notice it making a significant difference was the advice from the Walgreens pharmacist and 5000 is working for me.
Vampeyes- so glad you’re doing well!! Did the new MO give any opinion on why the rbcs are low every other time? We need to catch up soon!
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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.
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Lula73 - Thanks for the advice. I had a bottle here that I started taking about a week ago, so we will see if there is any benefit. I will up the dose and see what happens!
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@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.
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@Sweetcaro79 - Thanks so much for your response. I was able to find a Fish Oil supplement that was minus soy and Vitamin E. I’m now currently looking to start magnesium and biotin that are appropriate for Tamoxifen/Arimidex users. Any ideas?
Humb
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Biotin is another name for Vitamin B7
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Thank you! vampeyes, Buttercup, Capecodgirl, shelabela and Beaverntx for sharing your experiences with bone density tests. I learn so much for all of you wonderful ladies. I have my bone density test appt for July 5th.
I hope everyone had a good weekend and Tamoxifen was not to bad. My period started yesterday and Tamoxifen makes them so much for fun LOL NOT! Side Effects become much more intense and I become a hormonal mess. I guess the only good thing Tamoxifen has done for me beside keep BC away is it has made my periods much shorter so it is over in about 4 days instead of a whole week.
How is everyone else doing? Wishing you all a good week.
Hugs,
Sara
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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
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Hey Sara,
I still get a "period". I put it in quotes because it's basically spotting. I would make sure to mention to your MO the side effects you are having, even your period change.
Not sure if my new hot flashes are from Tamoxifen or the LCHF diet I started 3 days ago.... hopefully it's my body detoxing out the carbs and not Tamoxifen.
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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
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Hi Sara,
My plan is to always be LCHF going forward. I had my protein shake yesterday thinking it would be ok, it has hidden bad things in it and I felt it last night and do today - that horrible bloated feeling. It's for weight loss, but mostly I want to feel better. I am just tired of being tired all the time. Fingers crossed it helps!
As for the Tamoxifen I had issues with my first prescription, I have been on this new one just over 30 days and so far I have experienced a few hot flashes at bed time just in the last few days and my memory seems to be getting worse. For instance yesterday I went to Canadian Tire then to my moms, when she asked where I bought the plants not even a half hour beforehand I couldn't remember the name of the store (Canadian Tire). I hope if this is a side effect it goes away soon!
I wonder if getting a monthly period would be beneficial, you would still shed your lining and not get the thickening I read about. Not sure what the thickening of the lining entails... thoughts for your MO for sure.
Are you almost finished teaching? My boys are excited to be done school soon.
Cheryl
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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!
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I will have look into trying this blueberry supplement, makes me scared when I can't remember even the little things.
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Does anyone have one of those "cooling" pillows that are supposed to keep you cool at night? There are so many to choose?
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TinyDancer - what a great idea if it works! I use one of those frozen ice packs when the hot "flash" gets too bad.
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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
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Tinydancer- funny you should ask! I just bought 2 different ones at Costco. There was a 3rd one but it was a solid piece of foam and I’m not a fan. If the other 2 don’t work out I may just try it.
One of the ones I bought is a gel fiber pillow. It is cooler and I don’t heat it up as much as I do my regular pillows so it’s doing it’s job...however the pillow is never cool...you know how you can flip your regular pillow over and it’s nice and cool on the other side and can help with a hot flash? That doesn’t happen. It just does not retain heat.
The other pillow is a shredded gel memory foam pillow. $10 for 2 pillows. A lady saw me looking at them and said they were great but she couldn’t comment on hot flashes and cooling. I’ll give this one a whirl tonight.
My sister and BIL recently bought a Novafoam mattress at Costco. They have never been able to spoon or cuddle in bed because he was always so hot. He would literally drench the bed nightly. You know that scene from the movie ‘Along Came Polly’ with Ben Stiller & Jennifer Aniston where Ben’s character is playing basketball and goes up for a shot and slams into this big bare chested guy’s super sweaty chest and stomach? It was like that. Thank heavens my sister was a stay at home Mom because she was washing sheets daily. Anyway, they got this new mattress and he is no longer hot at night and there’s no sweating. We will probably give a mattress from that company a whirl and see if it helps. The pillow I didn’t not pick up is made by that company and is the primary reason why I will try it out if these other 2 don’t do the job.
Hope this helps!
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I got the Columbia cool gel memory foam pillow from Kohl’s last month. It’s not bad. It does help, but it doesn’t seem to stay cool. Same thing for the Columbia cooling mattress topper. Not worth the money. I have become friends with the ice packs nearly every night. Put one behind my neck and that’s just as good at the pillow
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Lula, I also have a foam mattress which is too hot to sleep on, so I really don't want a foam pillow. Please let me know how the shredded gel memory foam pillow works out for you.
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tinydancer- I will let you know. The mattress my sister and BIL got has air channels between the top layer and second layer and I think that’s why it’s cooler. It wasn’t that expensive and Costco will take it back if it doesn’t work out. Here’s the one they got:
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Hey Sara - So far my hot flashes seem to be only at night, so if it's bad enough I use the ice packs. The air conditioning helps and spending time in the basement where it is cooler.
That's good that you have less students, but bummer you have to work. What grades are summer school for, heck I don't even think we have that option in our town anymore. Boys are super excited to spend the summer swimming at the local outdoor pool and I am excited I am only working for two clients this summer. We have plans to do a camping trip to the KOA for a couple nights and possibly up to Marineland and Niagarafalls for a couple nights, that's about it. Have you got any plans for August once teaching is all done? Are summer school days just as long as a regular school day? How are your side effects going? Manageable?
Hey TaRenne - How are your leg cramps? Have you found any relief? Have to say I like the ice packs too, then you can move it to wherever is needed.
Lula - how are you stranger?
Have a great day everyone!!
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I will give you at tip that helps me when I have a hot flash. It's a simple thing to try. I am a side sleeper but when I feel a hot flash coming on, I turn on my back (after throwing off the covers) and spread my arms and legs out. I don't know if it's just exposing my skin to the a/c or what but it seems to soften the harshness of the hot flash.
My hair is falling out a lot lately, too. I am starting to take biotin. I will report back.
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Vamp, the leg cramps are better. Apparently my iron levels had bottomed out. I had 2 infusions (a week apart) and that seems to have helped. I feel them coming now, but stretching helps. Doc said it is common and I may have to do infusions again. Will keep an eye on levels. May add iron supplement (ugh) if needed. I hope not, the side effects from that are no fun either! But, all things considered, at least the legs have calmed down a bit.
My feet have started to hurt. Not all the time, but pretty consistently. It’s not cramps necessarily. It’s not really joint pain either. My friends say to try KT tape, so I’m gonna give that a try.
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