Bottle 'o Tamoxifen

MomOfTwins98

ScottieMom11 - How much Gabapentin do you take? I've had bad pains in my legs since my re-excision infection and was started on Gabapentin. I still have the pain but the burning is gone. It is so frustrating as no one can figure out what is wrong so I ended up at a rheumatologist who said it is Myofacial Pain Syndrome caused by stress or trauma to my body - why would a breast infection cause leg pain and swollen node in groin? - who knows! Anyway, he wanted me up to 300mg 3x/day - no way! I was on 200mg 3x/day and when I increased the evening dose, I had such weird things happen. Forgot what I was saying mid-sentence, got lost in a town I've lived in my whole life, was just plain confused so I went back to 200mg 3x/day. I have since slowly titrated back to the 300 at night so I take 200 at 5am, 200 at noon, and 300 at 7pm - What is your experience? Is it helping? I've been good about using the Turmeric now too so hope that will help. I take my Tamox at 5pm before dinner so helps me remember (and I have signs all over the house;-) - kitchen medicine cabinet, bathroom mirror - hey, whatever works, right?

Trvler

Live: YOu were VERY smart to give it back and make them give you the original. Once you take it, you are stuck taking it for the whole time.

DayLily15

Hello All

i have been having night sweats/hot flash flushes , enough that i wake up wet. so i have a magic bag filled with wheat the kind you microwave for a hot compress. but i have been keeping mine in the freezer, i get it when im hot and take it to bed with me. it really helps me get back to sleep.

Hugs

etnasgrl

That is such a great idea!!! Thanks for sharing that.

New-girl

Thanks for all the encouragement getting me to start taking my tamoxifen. 5 days counting and I have had no side effects. Not going to be alarmed if a few show up but considering how terrified I was to take the first pill, I am relieved nothing has happened. Saw a new BS yesterday who I wished I had seen four years ago when I first started treatment. First doctor to take my concerns and fears seriously and not dismiss me. Still waiting on surgery for phase 2 but at least I started my Tamoxifen. Thanks again yall.

One_Bad_Boob

Thank you Springtime for sharing your info! I really appreciate it.

The night before I experienced a new hot flash. Felt like someone was standing at the foot of my bed with a flame thrower. Got no sleep! I grabbed our second fan and put it on my side of the bed and I slept much better last night! No additional SE's other than that.

rleepac

I just started Gabapentin last week. Started with 100 mg at night and then today I started a morning dose too. Plan to work up to three times a day and then increase to 200 mg the same way and eventually hope to get up to 300 mg. I think it's making a difference in my pain and I can't tell yet if it's helping hot flashes

ORgal

I started Tamoxifen in July last year and so far have taken three different brands of it. I haven't noticed any differences between the brands, so it is possible they won't bother you.

My hot flashes start on my back. It literally feels like I'm leaning against a really hot heating pad and then radiates from there. It's the strangest thing. At first I kept finding myself leaning forward as if to get away from the heating pad until I realized there was nothing there.

Anonymous

Thanks for all the info. I'm miserable with this Mylan generic. So many hot flashes. Next refill (maybe I'll try to get it early) I'm going to request the old manufacturer or call around to see who uses Watson or maybe Teva.

Scottiemom11

Momoftwins. . .sent you a PM.

I have been on Tamoxifen for 14 months. I have only had the Watson brand so I can't say if my SEs would be different on another. The gabapentin really helps.

Scottie

ORgal

Hey, I have a question for everyone. We all talk about hot flashes but I wonder how they compare. For instance, I talked to my non BC cousin who complains about hot flashes, but she gets a couple of them maybe two days a week. That got me to thinking we may not all be comparing apples to apples. For instance, I think I probably have 6-12 of them a day every day (including nighttime that I'm aware of).

How about you? I'm curious to know if mine are 'mild' or not and how they compare to everyone else on Tamoxifen.

DeeRatz

ORgal- I was having about 50 hot flashes per day. I felt like I was going insane. I went for 6 Acupuncture treatments which greatly reduced my #'s. I'm guessing I'm having 10-20 per day now. Huge improvement and I can live wit that. I'm getting used to them.

superius

hmm I never keep track how often or how intense... maybe i should start doing it, but i don't want to give them too much attention!

Anonymous

I would say I get about 10-15 a day too. The worst is at night. I have a little fan by my bed for when it "strikes". I would get maybe one or two a week before starting tamoxifen.

DeeRatz, I might look into acupuncture. Where are the needles placed for hot flashes? I think it's covered by my insurance too!

DeeRatz

LovingisLiving- I had needles right from the top of my head down to my feet. They were in my arms, hands, top of my head, between my eyes, in my ears and around my belly button, elbows and legs. I didn't count how many but there were lots. It really helped me

Trvler

I have about 5-8 a day. They seem a bit milder lately.

ORgal

DeeRatz, wow, 50 a day! I think that could make a person go crazy. So glad you found something that has helped.

ayr1016

I started Tamoxifen on February 8th. I also started Lupron injections on February 5th (just received my 2nd Lupron injection yesterday). Since I started them so close together, I have no clue what is giving me which SE. But.....

So far (a month in), I get chills. I am still waiting on the hot flashes. I have no idea what to expect with a hot flash. I am pre-menopausal. I also have a lack of appetite, get out of breathe easy with stairs or anything more strenuous than regular ol' walking. I have joint/muscle/bone pain. But, I did notice the last few days (before I just got this 2nd Lupron injection) that I was walking normally again (I was kind of wobbling at some points) with barely any pain. So, maybe the joint/muscle/bone pain is from the Lupron or the combo of the two and lessened when the injection was wearing off.

Questions:

How long after your 1st dose did you experience hot flashes?

Did (or have you ever) experienced chills/cold flashes? <-- the nurse I saw yesterday pretty much told me it is impossible to be having chills - that the meds give you hot flashes. As if I am making it up that I get the chills. Grrr!

Some of you have mentioned you have gained weight or Tamoxifen. Did this happen over a long period of time or short period of time?

Scottiemom11

ORgal. . . I probably have 10-20 a day. Mine are hot dry flushes. . .I feel like I'm in a desert sauna. They often come on right after I wake up freezing. Drinking cold or ice water helps. Also peppermint and icebreakers stop the reaction. The literally start behind my neck and spread down my body if I don't stop them. I have a tower fan that blows directly on me at night.

If I miss a dose of gabapentin, eat a heavy dinner that's hard to digest or eat spicy food, I have a miserable night of cycling back and forth between freezing and burning up.

ayr1016. . .if you have questions about lupron let me know. I did two rounds of 3-4 months each with a break in the summer because the HFs got so bad. Ultimately that's why I stopped it, but everyone has a different expeirince. As for freezing. . .tell the nurse she's nuts. Lots of us have freezing chills.

Scottie

Scottiemom11

ORgal. . . I probably have 10-20 a day. Mine are hot dry flushes. . .I feel like I'm in a desert sauna. They often come on right after I wake up freezing. Drinking cold or ice water helps. Also peppermint and icebreakers stop the reaction. The literally start behind my neck and spread down my body if I don't stop them. I have a tower fan that blows directly on me at night.

If I miss a dose of gabapentin, eat a heavy dinner that's hard to digest or eat spicy food, I have a miserable night of cycling back and forth between freezing and burning up.

ayr1016. . .if you have questions about lupron let me know. I did two rounds of 3-4 months each with a break in the summer because the HFs got so bad. Ultimately that's why I stopped it, but everyone has a different expeirince. As for freezing. . .tell the nurse she's nuts. Lots of us have freezing chills.

Scottie

loriekg

Raising my hand for the freezing chills. I don't get them anymore, but certainly did the first few months!

ayr1016

Thank you scottiemom11 and lorikg. I certainly know chills from regular body temp, so I know I'm not losing my mind

lorikg: did the chills turn into hotflashes after a few months?

scottiemom11: I am wondering if the Lupron is giving me most of my side effects right now. However, I seem to keep reading how random side effects can pop up with Tamoxifen weeks, months, and even years down the road. What a rollercoaster this ride is.

MomOfTwins98

ayr1016 - I was/am one who gets the chills - they have gotten better but, for the first couple months, was freezing in bed - 4 blankets including a down comforter and then a heated throw...would shake badly. Then I'd get up in the middle of the night sweating - The chills have gotten better but just this past Monday, I had my MO appt and I told him that I was nervous about the Tamoxifen working as I really didnt get hot flashes (I'm 49) - he said the chills are doing the same thing and is my bodies reaction - he did not seem surprised at all. I was certainly pre-menopausal when this all started but now have gone almost two months without a period. Very bloated though so seeing my OB next Thursday -

Not having fun but, as many others have said, the SE seem to come and go...as soon as you think one is sticking around, it disappears and another takes its place - guess it keeps us on our toes:-) I had such terrible teeth pain in the beginning for about 6 weeks - was so painful. My dad is an oral surgeon and when I told him, he had no idea why/what was causing it. He had me try Sensodyne toothpaste and, after several more weeks, the tooth pain is gone. I've stayed on it and take Gabapentin so perhaps that is helping too -

FYI...Gabapentin is given here for hot flashes so, if you happen to be on it, may keep the hot flashes from happening - may be what happened in my case.

lala1

I hate Tamoxifen. My current issue is feeling like my brain is Jello! You know that feeling where you turn your head and it feels like it takes an extra second for your brain to catch up? I've had that all day. I'm guessing this could be something related to my sinuses although the last ENT seemed to think I had no sinus issues. Have I mentioned I hate Tamoxifen?

loriekg

ayr1016—you asked if the chills turned into hot flashes. Actually, I would have them both. It seemed like I would get a chill, go get a sweater on, adjust the thermostat to turn off the air conditioner…then BAM…I'd be peeling off the sweater, rushing to turn the air back on, and asking everyone, "wow, is it hot in here?" Now 8 months later, I don't get chills, just hot flashes. Not as many, and not too bad.

Scottiemom11

lorikg. . .that's exactly what happens to me. Freezing to burning hot. After 14 months it's the same pattern. I keep sweaters handy at work and alternate hot tea with ice water.

Scottie

rleepac

Scottie - what dose of Gabapentin are you on

IndigoMont11

Hi everyone. I've been on Tamoxifen for going on 4 years. Just wondering if anyone else has had trouble with their toenails? I did have some lifting after Taxotere, but that all grew out, and all was fine until about 4 months ago. My one big toenail has a split in it that doesn't seem to change as my nail grows. It's better than losing a toenail, I know, and I keep my toenails polished, but I'm afraid it might catch on something. I never thought of it being related to Tamoxifen until I stumbled upon a couple of mentions in the web.

katcar0001

Indigo - That's pretty unusual about the toenails lifting. I haven't seen that before with Tamoxifen. Maybe someone here will chime in. I have a middle toenail that is split and grows that way. But I had it before starting Tamoxifen, and I have wondered if I injured the toe somehow. I keep it cut really short so that it does not catch on things.

I am struggling with dryness--all my mucous membranes as well as my skin has dried up. It's really the only SE I have other than I cannot put on weight. I am so dry that I have to use special lozenges at night to keep my mouth moist; my onc gave me a prescription for a low-estrogen vaginal cream but I am afraid to use it (ER+ tumor); now the latest thing is that my eyes are miserably dry and red all the time and moistening drops do not help. I am going to see an eye doctor today. I am afraid of eye damage from such dryness. I did a search through the archives here, and this does not seem like a very common SE.

etnasgrl

I've got a question....

I've only been on Tamoxifen for 5 days. On Saturday, we got a new dog. Our current dog was not too happy about that, so we had to introduce the two to each other, slowly. We had them on leashes and during the course of this meeting, our current dog tried to lunch at the new dog several times. I was holding on to the current dog, so I used A LOT of leg muscles to keep her back.
Yesterday, I woke up with SORE legs. Really, really sore legs. I half expected that considering how hard I used my legs the day before to keep control over the dog.
This morning, I woke up and my legs are still SUPER sore. Granted, I'm not in the best of shape, but I'm also not in horrible shape either. I guess I'm in average shape.

Is my leg pain from overusing muscles, (it hurts right above my knee, but not really my thigh, if that makes any sense), or could this be from the Tamoxifen? Have I even been on the Tamoxifen long enough for muscle pain to happen?