Bottle o Tamoxifen
Comments
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I started tamox the day before I started rads. I think the reason most docs want you to wait is so they can tell what is causing side effects. My rad onc said that it shouldn't matter because they both have different side effects.
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Alaina: You have explained my view on things beautifully!
Janet: Love the train!
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surfette: I was nervous about the "thinning hair" thing in the SE when I read that, especially since my mom and grandma both have/had VERY thin hair as they got older. I switched my shampoo to a "thickening" shampoo (I use Pantene myself) and so far I haven't had any thinning. I've been on Tamox almost 1 year now.
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PENNY!!!!!!! yes the tast bud thing.....nothing tasts any good at all. my favs or thingsi didnt like doesnt matter....good way to lose weight tho
~ ~ nancy-carol
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Hi all, I'm still traveling and camping n stuff so outta touch with Internet and all. I wanted to let you know I've been taking Tammy full strenght 20 mg each day and having not problems so proly been on it 2 weeks. I have a bit of warm flashes, but otherwise have adjusted onto it with no problems. I am so grateful for all the information and support from all here! I feel it is protecting me. Thanks so much to my friends here. Love and hugs, Beanie
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OMG Beanie - Have missed you so much. I am like you, on the Tammy train for 2 weeks and have adjusted well - just a few warm flashes and some minor joint pain in a couple of toes.
Hope you are back here more often soon.
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Just wanted to report in that I am on the train! Well, at 2.5mg a day ...
Today was Day 2. I just could't do the 5mg....so started with 2.5. But hey, I started!! That was the hurdle. I know it's soon but so far haven't noticed anything. Feeling good. 
I think I will stay at 2.5 for couple weeks and then slowly work my way up so my body can gradually become adjusted. That's what I'm thinking anyway.0 -
wow either i am that ifected or that ikk informed: i have taken 20 units of tamox from the sart. other than that firey, metal tast that robs me of all flavor and an occasional crying breakdown...
hmmmm
~ ~ nancy-carol
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Hey phew - you know, that's a good point! Maybe if you and Penny tried breaking it in half and taking 1/2 in the morning and 1/2 at bedtime, maybe that would help your taste buds during the day! It might be worth a try!0
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Beanie and Jo... so glad all is going well with TAMOX!!! YEAH!!!!
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heartsoul good idea.....script said onve daily, so never gave it a 2nd thought !0
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Seems like the oncs need to rethink prescribing instructions for Tamox. It looks like the split dose is becoming the standard for everyone. If we gotta take this, we might as well find a way to take it that suits us. What do ya'll think?
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Aliana ~ love your thinking !! so true.. so sorry for all of your losses.
Love the train picture.
All is good here, still hate hot flashes and my creaky knees but I am still swallowing the white pill.
Have a great day !
Alicia0 -
Hi everyone. I started on Tamoxifen for 2 years. I was switched to Femara for one year, and I just had a bone density test which showed significant bone loss, so now.... I'm BACK!
I'll be in the pasta car if you need me....
Harley
P.S. Sorry I haven't been on in awhile.... just been too busy....
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Welcome Back Harley! Hang out with us for awhile - this is a fun bunch.
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Harley, heading to the pasta car right now!!!!!!!!!!!!!!!!
Jules
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I've already ordered. Here's the special tonight!:)
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you weren't kidding about the pasta car ! where are you going? your on the train? how exciting. and by the way you are cute as a button. 0
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Hi all--
I posted over on the alternative and natural board...I'm really have a tamox dilemma. If you've ever googled something like tamox and liver, you know what I mean.
It all started yesterday - I woke up and couldn't walk straight- really really dizzy. Been on tamox since December 26. I went to the ER because I thought I was having leg weakness also. They did a brain scan and other tests- they said they can't rule out a stroke but that it was most likely vertigo. By the time I left the ER I felt a lot better. Okay, so fast forward to today. I'm absolutely agonizing over the decision to take tamox. Once i started reading - REALLY reading the side effects after my incident, I got really scared! Maybe my dizzy spell was the tamox ---maybe not -- but I'm still scared maybe it was a blood clot!~ I found a lot on liver cancer and tamox and that really REALLY scares me. What nobody seems to be able to agree on is how MUCH protection does tamox add? I'm 41........ I've been told as little as 3-4 percent but my oncologlist says 15%~!
I'm so glad you guys are here to talk to. I'm so scared! I really wanted breast cancer to be over with. I don' t know how much the tamox is messing with my emotions - or the trauma of the past two weeks. Here's my rundown: Mastectomy July, Chemo August. Needed port. Port surgery September. Chemo until November. Infected port removed December. Two weeks ago, found a lump at my collarbone. Ultrasound inconclusive-says it's soft tissue. Breast surgeon said it had to come out - too slippery and small to biopsy. So I had to have surgery last Friday under general anesthesia. Lump was tricky-surgeon had to move nerves and stuff so that's still healing. So that side is numb at the collarbone now. THEN it was waiting for the results. Many days of extreme anxiety. Results turned out to be BENIGN praise God!
We got THAT news on Tuesday. Had one nice day Wednesday, and then Thursday morning BANG-- I wake up and can't walk straight.I just want to be left alone - by everything! I don't want to take the tamox -don't want any "symptoms" to be worrying about - blah blah. I feel like I've been through hell--I just can't seem to catch a break. I'm anxious all the time - far more than I was on chemo. Is this post traumatic stress??? Or tamoxifen related anxiety??
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calamtykel - So sorry about your ordeal but so glad about your benign results. YAY!!!
I wish I knew the answer to your question - - I have similar ones myself. I think post traumatic stress is definitely a part of all of our pictures - - being diagnosed with a life-threatening disease and undergoing all the various treatments qualifies, in my opinion.
Tamoxifen related anxiety? Probably . . . I also wonder about every little thing that is happening to me these days . . . blurry vision, dizziness, more than normal depression, tiredness, bad tastes in my mouth, terrible sleeps, dry vagina . . . are all of these really from the Tamoxifen? Or could it just be my age (49)? Or a normal mid-life crisis? Did I say "normal"? By the way, what is "normal"? Is there even such a thing???? Honest to God, most days I think I'm going nuts. You're not alone . . . we're all in this together. Hang in there . . .
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JustmeAlicia - no, that's not me! I just googled pasta and train and that's one image that came up:) I was pretty amazed to find it. It was too perfect!!
calamatykl - This might make you feel better. I had the same thing happen - but it was last winter long before bc diagnosis, treatments, etc. so it had nothing to do with Tamox. I got up in the morning & very shortly was so dizzy I couldn't walk in a straight line, felt like I was going to fall down, throwing up, weak and scared me to death!! Went to ER and was diagnosed as vertigo -- when little particles that float in your inner ear get out of whack. It's like sea sickness only on land. and those 'crystals' can become dislodged pretty easily - even changing the location of your head too fast. Just one of those weird things that happen. It can last a day or so or sometimes much longer. They gave me some medicine (forgot the name) at the ER and by the end of the day I was fine again. Sometimes they say it can last weeks (more until the inner ear fluid settles down - but I didn't have to take any more of the pills. Then it never bothered me again. And I NEVER want to feel that way again! I know how scary it is.
Blood clots are very very rare - and usually only if you have a family history or have an episode in your past. My onc said if you get a pain in one legs, feels hot to the touch - that's a symptom & get it checked out.
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CALAMATYKL.... I can completley relate to what you are talking about. I was also 41 when I was diagnosed and started Tam. in Sept. By the beg.of Nov. I was very dizzy and had blurry vision and on two occassions was driving and didnt recognize where I was for a few seconds very scary stuff..They did blood work and a CAT scan and said all was ok. Lots of anxiety with Tam for me. Doc also PTSS.. I went off for a week for surgery and felt great. went back on after surgery,did the slow approach 5mg 1st week 10mg 2nd week etc.. now I spilt my doses 10mg in am 10mg pm., and the side effects have been much better . I exercise every day and that does help with the anxiety alot, but not always so I have medicine for when that gets really bad. It is scary stuff, but we are all here and in it together
PENNY... good question... what is normal??? who know lol....
Hang in Tammy ladies hugs to you all on this very cooolllldd night brr... hot flash right about now would be nice
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calamtykel - I've been taking tamoxifen since Jan. 1st and I have had about 2 or 3 short episodes (5-10 minutes each) with vertigo. The last time I had vertigo was last spring when I was in the surgeon's office waiting to have my lump biopsied. It was the worst vertigo I've ever had (basically lasted for a week with dizzy episodes coming and going) and I'm sure it was caused by the anxiety from having a biopsy on my breast. So I KNOW the anxiety caused the terrible vertigo then, and I THINK the tamoxifen caused these shorter episodes recently. So, you may have those 2 things causing your vertigo - anxiety and tamoxifen.
Plus, last night for the first time in a long time, I had to take an anti-anxiety drug! I don't know why I was feeling so overwhelmed - it just hit me like a ton of bricks and I knew it wasn't going to go away on it's own any time soon.
I don't know what the answer is; I feel like the tamoxifen is causing anxiety AND dizziness and I plan to just wait it out until the SEs subside like they say they will.
I hate taking a drug everyday, particularly such a strong one, but I have to remember that the cancer is strong, too, and if I give up on tamoxifen my odds for a recurrence are much higher.
And I feel like most of us are suffering from PTSD - the last 7-8 months have been so difficult and I really want to get my life back! Unfortunately, I think I need tamoxifen to do that in the long run and in the short run, I'm just going to have to distract myself with drugs and alcohol - haha, just kidding! No really, I will take the anti-anxiety when I have to, sit still until my dizziness passes and pray everyday for inner peace.
I know that lump had to have taken a lot out of you, inner peace-wise. Hopefully, you can find that again soon.
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calamtykel: Don't stress out too much about taking Tamox. It sure beats having breast cancer again. You probably do have some PTSD, as we all do. Some days I just cry. Then I have to remind myself of how blessed I am to be alive still and have good doctors and this medicine to help me not get cancer again.
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Thank you so much! It is all very scary to me. I never took much medication - I don't drink, ever. Don't eat sugar- -don't do vaccines for me or the kids. I believe a lot of stuff can really harm the body in a bad way and the best way to stay healthy is to keep the body in balance as much as possible. Now I'm asked to wack it all out with tamoxifen....UGH! This is so hard. It doesn't help that my naturopath is against tamox - "Why take one drug to prevent one kind of cancer if it causes another?" UGH - I wanted to sock him!
I can't live with the anxiety though. When I taken an ativan or xanax it definitely helps! But I don't want to be on something habit forming. Wondering if I can just go on some thing short term, for a few months, anti-depressant-wise. Guess I have to talk to my oncologlist.
That whole lump incident took a LOT out of me. IT was worse than the original diagnosis--I just lay in bed and shook at night until we had the results......
My oncologist had already told me if it was positive it would mean rads to the whole area (I didn't have rads before) and probably more chemo..... I was so happy it was benign! But my emotions are all over the place - I'm sure it's a combination of PTSD and tamox and just me in general! 0 -
Chabba,....thanks for posting this about nails...I have been wondering the past two weeks what has happened to my nice strong nails of December..pre-tamoxifen and it was just a whisper in the back of my mind that tami might be to blame. I will check this out! Other than naisl though...splitting the dose in half means I can sleep without hotflashes and I do not feel as moody..bu that could just because i am further away from radiation and that 'oh my god what has just happened to me' feeling has abated...
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calamtykel....I think stress is a huge factor in all of our lives right now...thank god for posts like these hmm? I cried my way thruogh radiation...or half of it..really depended o nthe day and starting Tamoxifen as I was doing radiation somehoe made me feel better...knew i would be at the hospital for 3 and a 1/2 weeks so if i had side affects, there would be someone to talk to about it..but it is my own fears that sometimes paralyze me....fear of the unknown...I have actually done my best to put one foot in front of the other, not focus on "OMG...I just had breast cancer removed..it may come back..i may have to do this allll over again!!!"..instead, I have signed on with a personal trainer (my gym buddy moved to the middle east and my motivation plummeted..of course it was also a few days before surgery....)Still, I needed motivation and I figure life is a good motivating factor. I joined a choir after years of not singing and have also signed up for a meditation course..something I have wanted to do for years bu tcouldn't sit still for. I figure I need all the tools I can get . I need my rose coloured glasses back and my optimistic view point!...best way to get there is to do things I love, to surround myself with people who love me and whom I love and to look at all the things I can do to counter balance the fear I have of taking a drug for 5 years. I don't like chemicals or vaccines etc either but my doc. gave me the flu shot as well this fall to help protect me (I work in a school) ....but I have also gone to my naturopath and gotten an immune system booster (red clover huxlet mix...created for cancer pateints a ton of years ago)...I feel strong...
Just an idea, ....why not keep a journal of how you are feeling physically..give yourself permission for a set period of time every day to write down all your fears and even to feel them...set a timer so it canonly go on for a set amount of time...cry and let it out...and then get onwith your day. Give yourself permission not to feel the fear for the rest of the day ...might sound kooky ...but it is working for me. Use it as a motivator to be fearless...and remember to breathe...this is so scary...and can be incredibly depressing if we let it take our hearts with our breasts.
My thoughts regarding tamoxifen is that it is keeping both my breasts safe....radiation and suregery removed and sapped the cancer from my left breast...tamoxifen is protecting both breasts ...and with lobular features....I am grateful that the drug is out there ....I prefer 92% chance over 82% change of no recurrence.Those are my numbers...and I will simply try to counter balance the potential side effects with diet, exercize, good friends and lots of laughter and tears.
We are here if you need us.
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Morning Gals! Calamity! Man, you have really been through the wringer!! But you are on your way UP now! Years ago, I started having those dizzy spells, for "no apparent reason" and I took the generic Meclazine to help me through it. Something about your inner ear. I was soooo dizzy one morning, I didn't think I could hit the floor out of bed...it was like I was a bumper car, bumping into everything, trying to get out-doors to get sick! I HATE that feeling.
Glad yours wasn't serious....But since I've been taking Tamoxifen, this hasn't happened...yet. My left ear is still on the blink....Doctor thinks it's in my "inner ear" and will send me to an ENT if all the sinus medicine stuff doesn't work. It sounds like everything is "muffled"....She says it could be a polyp...but nothing serious.
I think most Naturopath Docs want to just treat you with "natural" herbs & cures. So it isn't surprising that one would tell you something stupid like that. My one friend didn't want to do the radiation nor chemo after her lumpectomy....even WITH positive nodes. So she wanted to do it the natural way.
She then went to some South American Country to see the guru "Dr. John" or something like that.....He is supposed to be able to "heal" you. She & her DH came back, went back to her Doc, & by now (10 months) the cancer is in her spine. It WAS her choice...but I KNOW the Doctors know more than me, & if they told me I should have chemo and then rads, I would be there on the front door step waiting!
Tamoxifen IS like a gift to our breasts...and little Sandee is so right! If you DO keep a journal, you will notice how differently you feel, if you can just muster up a feeling of happiness, once in awhile, & count your blessings, & then go out & kick start that morning! Attitude has so much to do with any kind of healing! Just take your vitamins & your Tamoxifen, & know in your heart, that you are doing everything you can to protect yourself.
And yes, we ARE here for each other....xoxooxo
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Good Morning Ladies
Hope everyone has a smooth ride on the train today!!!!
Hugs!!!!!!!
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So far so good. The split dose seems to be the answer to cut down on the SE's.
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