Bottle o Tamoxifen
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Hi All: Just joining the thread. Took a year off from the boards but now getting frustrated with tamox. Zero sexual interest and since I'm single, haven't even looked around. But memory problems, waking up for hours in the night and inability to concentrate are killing me. Is it all chemo brain? Is T contributing? Btw, haven't had a period since round two of adriamycin/cytoxan.
Had daily foot/leg cramps but used aquatics classes to stretch daily.
I used to be a reader, will that ability to concentrate return? Chemo's been over for 15 months!
Thanks all, Eva
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Eva, sure sounds like the dreaded mixture of chemo-brain/tamoxifen-fog! Yep, memory problems. What was I saying? OH
I take mega-sleep meds due to daily migraine, so no sleep problems, but wake up with the dreaded night sweats still (3 1/2 years on tamoxifen, now on Aromasin for 3 weeks). Had my period all thru AC, every day til Taxol. Leg cramps when walking, but not often. I still don't read...and I used to love it too. Eva....we all go thru differences, but some things are the same. Just my .02 here on my own experience. ~juli(Now off tamoxifen and on aromasin (due to chemo-induced menopause in 2006, and notice a huge increase in eyesight problems up close, no change in night sweats/hot flashes)
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Hi EvaPerone! Glad you are with us....these gals can give you more input on these subjects than I....Also try maybe some of the other forums, like "memory problems?" Maybe there is something on these threads that can help! Jeannette0
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Thanks for the welcome Jeannette. Juli: Sounds like we're in the same boat. I've gotten used to multiple sweats a day/night.
A tip for any newbies: I was taking 10mg in the am and 10 mg in pm but switched to taking 20mg in am (after breakfast since it made me sick on empty stomach) and did have less sweats overnight.
I read on this thread about testosterone gel - anyone try it?
As Fall arrives, my bones ache. Limped home after a workout today.
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Yeah, we were in same boat Eva...I'm hoping Aromasin will cut back on the sweating. I always took my 20mg of Tamox in the a.m. Still suffered mega-night-sweats, but that's menopause too. I hope that your bones feel better, the cold/damp Fall air doesn't help. All my best ~juli
*Luckily I still have 100% libido, no problems in 'that' area ;p*
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EvaPerone - I hear ya on the 0 sex drive. Hoping testosterone will help. I'll keep you all posted - or maybe that belongs on another thread? I'll try the movie idea too chevyboy. I'll have to muster up some courage to rent one. lol My memory has really been affected by menopause/ooph/tamox/all of the above. I often stop mid-sentence trying to find the right word, then I totally forget what I was even talking about. I feel like my IQ has dropped 50 pts. I also get night sweats but haven't had many leg cramps. Occasionally a charlie horse in my calf in the middle of the night. If you are having sleeping issues, try Trazodone. It's been around forever and has virtually no side effects. It was originally a drug for depression (200 mg) but they found that people got really sleepy. My doctor recommended it for longer term instead of doing ambien or something like that. I take 1/2 of a 50mg pill every night - really works and it's dirt cheap.
Laura
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Welcome all the new people and I'm sorry you have to be here!
I have been "off" for a few days since I've had family visiting each evening before they went out of town for a few days. I couldn't get on-line to "chat" when they were here or I'd feel like I was being rude. When they left, I was tired and went to bed.
I had an onco appointment this week and he asked how I was doing on the T. He asked if I wanted to switch to 20mg 1x day but I said I don't have problems taking 2x day since DH has meds at 7 and 7 so we do them together. You'd think we were Chevyboy's age (same as our parents) with all the meds we take!
He also decided to put me on Effexor for hot flashes and anxiety from T side-effects. I took one pill and was nauseas all day and light-headed and decided to wait to try again unti lthis weekend since I have a 3 day weekend. He said it might also help me lose the weight I've gained on T. That part would be nice!
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Hi All...
I'm another new one to join the thread.
I was diagnosed in March when I was 34, had a left side mastectomy after finding my 7cm tumor also had 12 nodes removed with 7 positive. Finished TCH chemo June 30th and just finished radiation Sept 28th.Still doing the Herceptin every 3 weeks... Now on to the tamoxafin..and to be honest I'm SCARED!!!! I have my prescription and just haven't been able to take it yet, my plan is to start this week.
I guess after finishing radiation I FINALLY am starting to feel back to my old self somewhat and I'm nervous about the SE that I might get....eeeeeek!
I'm so happy to have the site to come to and vent, talk and meet lots of great ladies.
Mo
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Mo I was scared too, but honestly its been uneventful. I was so nervous about the side effects and talked to my onc for a long time about them. My onc told me the other day that with T if you do have SE's they will subside. He said it makes your hormones whacky (i don't believe that was his exact word) then everything evens out and you plateau. He said that plateau usually happens 6 - 8 months. BUT as I said no SE's here.
Good luck!!!
Di
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Hi Mo, fancy meeting you here! Haha, what a fun ride, huh?! Okay, I've been on T since Monday and so far, so good. It might not be too bad. I'll keep my fingers crossed for you!! Hugs!!
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Morning Gals! slmdavidson.....Maybe send your DH in for the rental? Ha! And you can sit in the car laughing!
And on the way home from THAT place, you can stop at the local "toys R us" place & pick out a thing or two for you! 
I DIDN'T just say that! DiDel....that's true! The side effects do gradually either change, go away, or just settle in enough where you don't notice them. I've been on Tamoxifen since January, & the only thing that bothers me sometimes are the leg cramps. I tried the soap in-between the sheets thing, but those 2 bars of soap, just laughed together ALL NIGHT!!! Didn't help my cramps! The Doctor said to try Magnesium....I did that also, but I started itching, & didn't know if that pill caused that. I'll try it again though.
Gotta find something constructive to do........ xoxoxoxoxoxoxoxo
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Wow our thread is "hopping" ! Welcome to the new girls.
M ~ don't be afraid to take the pill. I remember feeling the same way, but you have to think of it as almost a pill form of chemo! A necessity to help prevent recurrance and keep us HERE!
Chevy.. ~ you crack me up.... the toy's r US. LOL
I can relate to everything ~ zero sex drive, crotch is always irritated who wants hubby messing around with it. And I can barely reach an O. Tamoxifen is like female viagra for me and who the heck wants that !!??? My reading vision is gone ~ I now wear magnifying glasses. I cannot even see my ipod when I am working out. And memory problems too -- who knows chemo, tamox, both? Someone was talking to me about a movie I saw like 2 weeks ago, I said that was GREAT! And I couldn't remember the ending... I had to ask and then say oh yeah ! DUH !
But I got my period back last month, hot flashes are next to gone, and exercise is keeping the weight gain at bay so far. 7 months on Tamox so far ~ now to see if I get my period again this month of last month was a fluke after no period since chemo!
Have a good day all !
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Alicia: I didn't have the eye problems on Tamoxifen (3 1/2 years), but now do on the switchover almost a month ago to Aromasin. Libido, NOOOO problem~! lol...everyone is different. Kept the hot flashes every day, as chemo-induced menopause, so not just a tamox effect...same with the night sweats. I didn't have leg cramps in bed, but sometimes in left calf when walking, I'd have to stop.
Enjoy the 'holiday' weekend everyone! ~juli
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I would like to know if anyone is constipated. I don't know if it is the Vit D, Melatonin or Tamoxifen. I'm going to stop the Vit d first. I don' t usually have this problem.
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eileen: I found that the fish oil/omega3s helps with constipation (among its many benefits), as yes, I also on tamoxifen was more constipated. One has to take a big enough dose (9 grams, but that is actually to help my triglycerides)...but it helps tremendously! I never had a problem on vitamin d, but then again, was always very deficient, now take 5,000ius a day. Good Luck!
~juli
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Juli, Thanks for the info. I was taking 2000 units of vit d. I'll try the omega3s/fish oil. So far (only a week) this is my only side effect. crossing my fingers.
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Eileen: Hoping the fish oil works for you, it has for me when I was on tamoxifen. There is another thread here on vitamin d (most of us are so deficient it's not funny)...I'm self-dosing, as my endocrinologist completely DISMISSED the importance of Vitamin D3??? WTH??? (He has since been fired) Good luck on the tamoxifen and supplements. ~juli
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eileenr56.....I had to quit taking Melatonin also! I had to take Imodium AD to make up for THAT side-effect! But when I stopped the Melatonin, it all straightened out! Man, every one of us gals are different! I'm also taking all the other vitamins with the Fish oil/Omega 3!.....
I'm just getting used to the sleep/dream/think/dream... cycle! Oh, you get the idea~ xoxoxoxo
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juli0212, I've been self dosing also, but I read somewhere that you can overload on vitamin D, so you should have your levels monitored... do you know anything about this? Are you having any monitoring? Kidney stones are very prevalent in my family so I'm a little scared of this. OMG, I don't need any more problems...lol!!!0
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Hi, I have had my vit d monitored. My ONC and PCP are big on vit d levels. I'm going to stop vit d and see what happens, then take less and work my way up. I'm having a blood test next week to check all my blood levels.
I've been menopausal since i was 21. so I have always had trouble with sleep until I found benedryl. Melatonin has been working great, but I would love to be able to sleep without stuff. The fact that I have been off benedryl for a week (and sleeping) is a big deal.
If i can fix the const. problem, I'm good so far (i know it's only been a week). My uterus area feels a little sore. I haven't felt that way in 20 years. hmmm. no problem though
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eileenr56, have you tried probiotics? I've been using those since after my chemo (which really did a number on my digestive system) and I'm doing great. The one I got is probiotic complex with acidophilus, double strength (200mg.)
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lady_madonna: I have been monitored for years with my vitamin d, as I have primary hyperparathyroidism, and had a parathyroidectomy (removal of one of the 4 parathyroid glands and a grape-sized benign tumor in 2002). So, yes, I'm being monitored by my primary doc now on the vitamin d front. If you read the research, it's VERY hard to OD on vitamin D3. Taking 5,000ius daily is just a start for me. We're checking levels end of this month again, and may increase the dose. I'm chronically deficient, and I believe that played a HUGE part in bc for me (no familial history of cancer OR parathyroid problems)....along with the parathyroid/calcium problems.
Melatonin ironically keeps me totally awake. We tried various doses, and I just cannot sleep using that. I have to use Dalmane, as the ambien/sonata/lunesta also keep me awake. I have a very strange body system (daily migraines as well, lol...benadryl causes me to GO to the ER with mega-head-pain...TMI already???
) I learned SO MUCH from this thread, and having an endocrinologist who pooh-poohs vitamin d3 and also my now-bone-density-loss of over 9% in the lumbar spine. My primary doc wants to help me more, hence the 'firing' of my endocrinologist. I don't need another one right now. Thank you for your concern! ~juli0 -
eileenr56, have you tried probiotics? I've been using those since after my chemo (which really did a number on my digestive system) and I'm doing great. The one I got is probiotic complex with acidophilus, double strength (200mg.)
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My computer is being a problem child today, but I think I've whipped it into submission now! Anyway, I made an appt with my PCP... can't believe I'm voluntarily subjecting myself to another Dr. appt! Oh well... the things you do to keep the cancer away!!!!
Juli, I had migraines also but I'm working with a headache specialist (neurologist) and taking Topamax 200mg nightly, haven't had a migraine in so long (such relief!!) My onc did have to give me a mild sleeping pill and I'm also taking gabapentin 300mg nightly to help with hot flashes. I'm now sleeping solidly through the night, 7-8 hours. Only take the sleeping pill occasionally.
The last few days I would say I feel 100% like my old, normal self (as much as I was ever "normal!!") :P
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lady_madonna: I am actually retired/disabled due to the daily migraines. I have been to various head pain specialists in the country for the past 35+ years. We cannot prevent the head pain, so we treat it daily, try to stay in the level '5' pain area. topamax & neurontin were horrible on my head pain, but it certainly helps many people. I'm glad you're feeling better~! HUGE ++++!
~juli
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juli -- I am sure you have tried everything, but my daughter suffered from a constant headache for over a year until indomethacin. It's an NSAID like ibuprofen but way stronger. There's a rare class of headaches that only respond to it. If you've seen specialists they've probably tried it, but just in case. . . none of the standard migraine stuff worked for her.
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Yes, I've been on Indocin/Indomethacin...yep, we've tried everything, so hence, we just treat the pain by DHE injections into my thighs subcutaneously daily since 1993. It keeps me at a level '5' sometimes. Thank you though. Been there, done that....insurance will not cover any more specialists, I've seen them all, you all have no idea! One adapts. ~juli
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Hey gals....eileenr56 .....I heard that while we are Tamoxifen, we are not supposed to take Benadryl.....I guess we could research that, but I was taking Tylenol PM to help stay asleep, but I was told, that Benadryl was in that, so I quit taking it!
Has anyone else seen that information?
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Good thing I cannot tolerate benadryl, MEGA-3-day stays in hospital if taken! (mega-migraine w/vomiting, sorry, TMI!) I didn't know about the benadryl being in Tylenol PM, but something must be in it to make one tired...I don't take that. I have to take prescription meds to sleep (Dalmane or Chloral Hydrate...if one wants to revive their libido, take the liquid chloral hydrate! WHOOOOOOOOOOOOOOOOOOOOOOOOOOO!) ~juli
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My oncologist is a research specialist at Mayo Clinic...I did not like the ambien so much and she said it was fine to take the Tylenol PM...that the benadyrl was not an issue...
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