Bottle o Tamoxifen
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I haven't posted in a while but read everyday. I went to the eye doctor today. The vision in my left eye has been bothering me. I have been far sighted for many years and wear no line bifocal glasses. Starting last month, I noticed things in the left eye were blurry and the lights at night looked like start bursts. First thing I thought of was a cataract. Well, it turns out I went from one extreme to another - was far sighted - now near sighted. And not just a little bit but a whole lot. The eye doctor said it was due to our friend Tamoxifen. We all know Tamox can cause vision changes. At this point, we are going to wait a month and see if the left eye corrects itself. If not, then I will have to get a new lens in my glasses. What else is this damn white pill going to do to me? Just got past all the uterine issues - now this. One year, 11 months and 17 days to go.
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Jo, I'm sorry that you are now dealing with this vision thing....
Over the past few months, I have been having vision issues too....sudden light flashing which got me seen by the doc quickly....dxd as a vitreous gel sac shrinking and tearing away from (and irritating temporarily) the retina which was the cause of the flashing.....a month later, less flashing, but lots of fast moving spider like floaters that were very distracting to my field of vision. Well, the doc checked my retina again and said it was a progression of the same thing and that my brain would adapt to these "spider flies" , so I would eventually not be distracted by them...but that everything was fine in terms of my retina. oy! Well, he was right about the brain piece...so I barely notice them that much, but overall I feel that my vision has gotten a bit worse....tho as he pointed out, it is still twenty twenty, with some cataract involvement. He was hesitant to say that Tamox had any impact on any of these recent occurrences. I feel (with no med degree) that my eyes have been very dry since Tamox, and wonder if that had caused this vitreous gel sac shrinking process. Who knows.....
Eye changes are so concerning....I hope your situation resolves or is helped purely by getting a new lense for that side. Am keeping a close eye on mine.
Good luck!Question for you on another topic....just started biotin last week since the thinning hair was starting again and my poor nails are a breaking/short mess! Should I assume that if my hair grows thicker, it will only be the hair on my head?
Thanks Jo!Got my Ritalin script today, so will fill it tomorrow......wish me luck! Feeling a bit nervous.....
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Lacey-I will be so anxious to hear about the Ritalin. My script for Provigil has not been approved yet-so hoping to get Ritalin. My brain power just sucks big time.
For those who have seen the news today. My little town in SE NM had a school shooting. Please keep the families of those shot and the shooter and all involved in your thoughts and prayers. Thank you.
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susan, how horrible of a thing to happen in your little town. I just feel terrible that our kids keep doing these violent acts towards each other. I am from a small place, too and I know how everyone knows everyone, so it is even more unnerving. You all are in my prayers big time!
jo and lacey, eye problems are very distracting. I hope yours clear up. There is always something to stay on top of, isn't there?
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hi all- thanks for your support and suggestions. I like quinoa just have to learn how to cook with it more.
I also am noticing eyesight changes but I was before "Vitamin T" I think all the computer screen time aggravates as well-
Just hopped up to read my bottle- it says take orally (ya think) once daily. It also has the pregnancy warning and said to read the "black box" warning haha- nothing on with food.
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Lacey,
I having been on Biotin for 3 years bud. It has helped my nails tremdously. I have always had strong nails and found in the beginning, they would break easily. Now, no problems. My advice, stay on it. What have you got to lose?
As for the eye issue, the doc did check my retinas and they are fine. I do have the beginning of cataracts but that could be due to the aging process. I am no spring chicken! HA HA.
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Another day, another pain. I tore my meniscus about a year ago, just a minor tear and I was completely okay after a month, but since starting T it has been steadily getting worse and worse, to the point where I have trouble climbing stairs! Anyone else had this kind of thing happen? My arthritis is 10 times worse on T, but that was expected - I didn't expect it to effect cartilage as well, so am unsure whether to chalk it up to T or go see the orthopedic surgeon... so I come to ask you amazingly informed and supportive ladies!
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lahela, a friend of mine also had the same meniscus injury. She has found that turmeric supplements have helped a great deal with joint pain. That's all the information I personally know about this. How are you feeling on the effexor, or did you discontinue it?
I met with my MO today. Got a lot of my questions answered to my satisfaction. However, she said absolutely no to Remifemin. She said black cohosh is not safe. I have read conflicting reports to that effect, and I know others here have had their MO docs approve of it. Instead she recommended Ativan as a first line of treatment for the night sweats. She said it doesn't make them go away but allows you to sleep through them.
I went home with a written rx and of course researched online. My initial reaction is that Ativan is not something I want to take at this time. I'm sensitive to narcotics, and I'm very reluctant to do anything that might make me dizzy (a reported common side effect). It also will do nothing for daytime hot flashes. If I want to sleep through the night, I'd rather eat a pot brownie before bed. ;-)
She said her second rec for hot flashes is gabapentin. She said it is reported to be more effective on hot flashes than effexor. My reading gives me the impression that gabapentin has worse side effects than effexor. I don't want to take any of these! :-(
So as of right now I'm not even going to fill the ativan rx. I guess I'm literally going to just sweat this one out. I'm pretty disappointed, but the side effects of these meds sound worse to me than hot flashes and night sweats. (I previously wrote about horrible side effects that I had from just a low dose of Zoloft; the reported SE's of effexor sound similar, and Lahela's experience that she describes sound exactly how I felt on Zoloft. So that's why I don't want to go that route.)
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Susan, I was thinking of you when I heard the news yesterday. I have a middle schooler and a high schooler and this is way too scary. Clearly this can happen anywhere. In fact if anything it seems like school shootings are more common in small towns. I hope the two kids recover. It sounds as though the boy is really badly hurt.
Lacey, that is great you've got your Ritalin Rx. I will be very interested to hear how that goes.
Lahela, I think you should go to an orthopedist even if it is Tamoxifen, since it feels like an aggravation of a prior injury. Just my two pennies.
My eyesight seems to have gotten suddenly worse in the last month. However, even before I started Tamoxifen, it seemed to go that way. Usually immediately after I have my biennial eye exam, my ability to see plummets abruptly, and then I have to wait a long time to get it checked out. This time I had my eye appointment in June so it's not quite holding that pattern, but I'm not shocked at a sudden loss of visual acuity.
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HI- dx feb 2013 had lump. and rads. Started on arimidex and had terrible rash. 3 months later started tamoxifin. Have had problems sleeping so started taking in a.m. and sleeping a little better. Tried lunesta highest dose and it doesnt help. Have had a few night sweats and infrequent hot flashes. Not as bad as menopause. Hope it doesnt get worse have 4 1/2 years to go on this stuff. I'm 75. Is anyone else out there my age going thru this?
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Saw my MO for the first time today. She prescribed Tamoxifen and said that I should fill the prescription in the next few days. She said it was important to take it the same time of day, but it didn't matter if that is at night or in the morning. To be honest, my main issue lately is trying to reform my eating habits. I can't seem to wrap my head around cutting out processed foods, sugars, salt, butter, dairy, red meat, breads, junk foods, and desserts all at the same time. Ugh!!! Any suggestions on how to make this more manageable while increasing vegetable intake? I should mention that I don't really like to eat most vegetables.
Thanks for any advice you may have.
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lahela---I went to see a doctor a couple of months ago who used to do alot of work with breast cancer and is now semi retired and working with people on their holistic health. He's even written a book about what foods and supplements are good for people to take during/after BC. My biggest side effect from TX is joint/muscle pain at night while sleeping. My MO had suggested Osteo Bi-Flex which barely made a dent in my pain. This holistic doctor suggested I take Turmeric and Ginger. This was actually suggested as something that I should take to help get my cholesterol levels down a bit ( I had a sister die of heart disease at 39) and he said an added benefit would be that since they are anti-inflammatories, they would help my joints. It's been about 2 months now and I am sleeping through the night for the most part! I'm working out at the gym, using the treadmill and circuit machines. Both of these can be taken if you are on TX. Recently I also added 0.3 mg of melatonin (it's the smalled dose you can buy) which makes the sleep I do get that much better. Talk to your doctors and see what they think.
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Susan, I am so sorry for your townspeople to have to go through that recently so common violent trauma. Keeping them in my thoughts....
Lahela, I had a knee "tear" of some sort this past summer (never got an MRI, just an x-ray)and saw an orthopedic surgeon because it was very painful and physically limiting. Her approach was to give me a cortisone shot and refer me to PT (something my son who is an orthopod says he often does rather than rush into surgery). I went to PT for a few months and learned really valuable exercises for strengthening the muscle groups that support and take pressure off the knees in general. Result.....I still have something subtly going on with that knee (supposedly not arthritis)but it is now totally functional and without pain. I exercise rigorously every day, rarely need to use a knee brace, and keep the supporting muscle groups really strong with my PT exercises. My objective was to avoid surgery, and so far I am easily doing that. I will not try to jog again, which caused the initial problem. Bottom line, I would definitely see an orthopod....but hopefully not a scalpel happy one, then a good physical therapist. I credit my PT for getting me on a great track for muscular/skeletal health despite whatever impact hormone therapy has on my joints. Good luck to you!
Lala1, in what form do you take the ginger and tumeric? Glad it is working for you.
I won't even go into my tale of annoyance and feeling like a 15 year old amphetamine distributer when I went to the pharmacy to get my Ritalin today, but I finally got it and will start tomorrow (before distributing
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Hey everybody who wants Ritalin, Lacey's open for business!
Hope it does the job....
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Hi everyone -- I am new to this thread, but recognizing some names from other forums. I am about one month post chemo. I saw my MO today and he prescribed Tamoxifen, which I am to start now, and continue for 5-10 years. I start rads on Monday.
He also plans to put me on Zometa (I have osteopenia), infusions twice per year. Before I start that, he wants me to chat with my dentist about it. I was on Actonel before chemo, so this will replace it. He said recent research has shown that Zometa also has the benefit of some assistance in preventing recurrence (especially for premenopausal women, but also some benefit for post menopausal women like me).
So I thought it was time I check out this thread -- looking forward to your support and advice in this next part of my BC journey!
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well speaking of eyes I went to the eye doctor for my yearly check up, vision has improved (very weird) my right eye was -2.75 and is now -1.75, left eye was -1.75 and now .75. Now for the really weird, my astigmatism is much much worse, in my right eye it was 0.25 now 1.00 my left was 0.50 and now 1.00. He put me through all kinds of test this time he said that Tamoxifen can cause some severe eye problems, and he gave me a prescription for my eyes (since I've been on Tamoxifen the liquid in my eyes are more of a gel, they then get really dry and I pop blood vessels in my eyes) and now have to see him every 6 months for now.
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Just started the lowest dose of Effexor ER today. My dr. said to take it once every 3 days to see if it helps. Giving it a whirl!
And when I went to get my Tam today- they were out- gave me 3 pills and said "we should have the rest tomorrow, hopefully"..... and it is a different brand than I got last time. Actavis instead of Teva.
I just wanted to share - special brownies, are out for us- pot is super high in phytoestrogens. We should avoid it like soy.
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gemini- wow ativan for night sweats that kind of seems like killing a fruit fly with a baseball bat.
Gabapentin is in vogue right now as part of multi-modal pain control after surgery and yes it does have some interesting side-effect for long term use in chronic conditions.
I agree that managing the hot flashes/sweats might be a less drastic route to go versus introducing yet another med into your system and then trying to figure out how it interacts with your other meds and any symptoms you have will have to be wondered over for which med is causing what or is it Cancer. - My 2 cents.
runfree you are so right- why do your eyes seem worse closely following your exam and expensive brand new eyewear
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I have really been having vision issues and now see they may be Tami related! I see my MO tomorrow so will ask him. But looks like I need to find an eye doc. Until now I have never needed one.
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Gemini, I didn't continue with the Effexor. I could not function at all and I felt like I had a severe stomach flu. I was trawling back through my memory with my mum and we worked out that I had had the same thing with Zoloft many years ago. She recommends trying Cipramil (Celexa) because it works well for her (we have a long history of depression in our family) and a woman on another thread here uses it successfully with no SEs. For now, though, I'll just stick with the hand-hald fan I keep by the bed and cool off with that half a dozen times a night!
Susan, my heart bleeds for your town. Such a sad and terrible thing to happen.
Lala - I will talk to the MO about the supplements, thanks. RunFree and Lacey, I will see the orthopedist, too! Thanks so much for the advice.
My eldest son has severe ADHD but Ritalin doesn't work for him so he took dexamphetamine for years, but it took lots of jumping through hoops for the pediatrician to get approval when we arrived in Switzerland because it's usually only used here as an appetite suppressant to treat childhood obesity. Every time we went to the pharmacy to get his script filled they would ask if it was for him, look his skinny frame up and down then go phone the pediatrician to confirm that it was genuine! I really think pharmacists need to do a lot more self-education about alternative uses for meds!0 -
Hello,
I started Tamoxifen on January 2. I take it at night and so far I haven't noticed any side effects.
I had been taking a very small dose of Zoloft (25mg) for anxiety for a number of years. Because you should not take Zoloft with Tamoxifen, by MO switched me to 37.5mg of Effexor and said this should help with any hot flashes too. So far, I haven't noticed any side effects from Effexor either....and my mood has actually greatly improved.... but this may also be from finishing breast cancer treatment and recovering from ALND surgery!!
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Lacey--I take ginger and turmeric in a capsule. Turmeric is by Gaia (which my dr strongly recommended as it being better than most) and I take 500mg (1 pill) once a day. I bought the ginger at Vitamin Shoppe. I take one pill (550mg) once a day as well. He actually suggested I might need to take the ginger 3 times a day but I just do once and feel really good on it.
Odd happening yesterday, out of the blue yesterday afternoon I started feeling very lightheaded and somewhat nauseous. I drank alot of water and Gatorade thinking I'd let myself get dehydrated. Didn't seem to help. So I tried thinking what was new and realized I started taking a different brand of multivitamin about 3 days ago. I compared the new with the old and the only difference I see is that the new one has Vitamin K and calcium in it and the old one had neither. I didn't take the vitamin today and feel great now. Coincidence? Have no idea. Just another reason to closely keep track of all that we take now. I did do a little googling and saw that Vitamin K can act as a blood thinner. Since my MO has me taking a baby aspirin, I wonder if the aspirin and Vitamin K were too much together. Also too much calcium can cause lightheadedness but I don't think a sudden increase of just 500mg would really affect me that much.
Anyway, just another side effect from cancer and Tamoxifen!! Having to watch every little thing that goes in your body!! (And, yes, I bought new multivitamins today with no K or calcium and will see how they do.)
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welcome TeamKim
Hope all goes well for you on T
I gave found it to be pretty plain sailing so far
)) - 3months in NC x
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Lala, thanks for that info on the tumeric and ginger.
So, here is a tamox serendipity.....I just got a letter from my former health ins co (I changed to a different plan a few months ago, after retiring), with a check in it. They are reimbursing me for my co-payments for tamox from February thru August (after which I changed my coverage). Here's what the letter said: " (Name of ins co) is reimbursing you in accordance with the Massachusetts mandate to cover a prescribed orally administered anticancer medication on a level equal to intravenously or injected cancer medications."
I recall hearing something (on the news?) recently that tamox patients would not need to pay for the drug in the same way as in the past, so maybe this is why I am receiving this check? Tho I thought that info related to people who were taking it as a preventative measure, and had not been dxd yet. Anyway....no complaints here!
Glad not to have to pay for my SEs . Has anyone else been notified about this stroke of good luck in Mass, or in your states?So far jury is on long lunch break re: the methylphenidate...will keep you posted.
Welcome new posters, and runningfromc, glad to hear that you are feeling well after your active treatment and on your changed meds. Many people I know had no side effects on Tamox. I had expected that myself....maybe eventually.
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Nocompromises & others, thanks for the welcomes! I went to the pharmacy today to pick up my first tamoxifen prescription, and was told the lab which supplies them has it on back order. Have any of you had trouble getting the drug?
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Hi teamKim-
Welcome- and yes, there are shortages of different ones in different places it seems. I went on 1/14 to pick mine up, and they gave me 3 pills saying the rest should be here soon.... hoping they have it tomorrow. And it is also a different brand. That may or may not have caused my stomach upset the last 2 days.
Wheeeee! this is the funnest ride!
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I have been on T since October 2013. After my first month there has been a shortage, but I have been able to get T in 10 mg pills and I just take 2 a day. My pharmacy, CVS, said the shortage is with the 20mg tablets.
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Interesting, ladies, your mention of lack of Teva tamox...... the letter about tamox that I just wrote about, got me wondering when I would be getting the supply I just ordered and whether CVS Caremark is also honoring the no copay mandate. So I went to my CVS Caremark account online to see when they would be mailing the two drugs I ordered over the phone last week. Well, one was mailed yesterday, but the Tamox was listed as "unavailable". It says on my account to call them, but they never notified me to that effect which is pretty annoying. Anyway, .....when I placed the order, I specifically requested that I only be given the Teva brand when I ask for refills, and they said fine, checked on availability, and said that in their Wilkes Barre, PA distribution center, they had Teva brand.......HA!.......not so fast, I suppose! So I will call tomorrow, and find out what they plan to do. I so do not want to change brands if at all possible. I will ask about the possibility of getting 10 mg tablets if the 20mg is the problem. That seems to be what a number on this thread are doing now. "It's always something....."
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Lizzy -- mine is CVS too. Maybe they have a problem.
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Lacey, I'm in MA and have BCBS of Ma for insurance. My tamoxifen rx is a 60-day supply, and I paid for only the first one back in April. The next refill I noticed had a $0 price -- the pharmacy tech at CVS said it was ringing up as fully covered. Then at some point last summer I received a check from BCBS reimbursing me for the one scrip. I need to deposit it! I want to put in back in our HSA account but haven't gotten around to it.
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