Bottle o Tamoxifen

uds17

Cindy K-

My optometrist told me that tamoxifen can cause changes in your vision. It's worth going to get your eyes checked.

I hope your exchange went smoothly!!

Cindy_K

Thanks All.. I appreciate all the information. I didn't ask this morning about the vision, I thought perhaps because I was sleepy. I will be putting a request to meet with my oncologist and Optometrist..The vision is only blurred on lose up vision like reading.. I can see everything else jus fine. So strange.

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Professor50

I had some vision issues while on Tamoxifen and went to see my eye doctor because a rare side effect of tamoxifen is cataracts. Anyway, the verdict was that it was NOT at all related to the tamoxifen. If it were a side effect, BOTH eyes would be affected. I even had my eyes dilated to be sure there was nothing going on with my optic nerve/brain! It turned out it was age-related changes in vision. Many of us started to need reading glasses at just about the same age we were diagnosed, right? So. I would have it checked (obviously, that's what I did ). But I wouldn't worry too much. I don't have any friends (male or female) left who do not need readers.... I'm 51.

Cindy_K

So I got to thinking that the blurred vision may be connected to the Scopolamine patch for nausea, The symptom occurred within 12 hours of application and it really was the only addition in medication. I just looked up that side effects and the first side effect---blurred vision. I'll be talking to my PS today but I also read that this could be an issue for the next 2 days. Fingers crossed that is all it is. On another note, I thought I would be in some kind of pain with the exchange and there is none.

CidneyI

So many side effects from Tamoxifen! Do you ever find yourself in a situation when you tell someone about your side effects and you wonder if that person believes you? I am working out with a personal trainer and during our workout, I will have a hot flash (on top of already being hot) and I will be so sweaty that I cant grip the weights.  I told the trainer why and just the other day, we were streatching out and my legs kept cramping up so bad that I couldnt streatch. I told her it was another Tamo side effect and she looked at me like "yeah, right, whats next that you cant do because of your medication".

lala1

Cidneyl---To heck with your trainer!! All I got out of your post was that you are in the gym with a personal trainer!! More power to you, girl!! I joined a gym for the first time after my diagnosis and whenever these SEs from Tamoxifen get me down (or I look at the stupid scale and see that Tamoxifen belly creep!), I just remind myself that I am fitter than I ever was before BC ( even if I am fatter!) So as far as I'm concerned, if you can get up and go on with your day after all this BC crap, much less get to the gym, then we all rock!

CidneyI

Thanks South Carolina - I needed that pep talk! I have never worked out this hard in all my life to only see no results at all. Every time I get on the scales, I am two more pounds heavier. It is so discouraging and I think about saying to hell with working out but I have to believe something good will happen to spur me on. If anything, I really need to continue to work out to justify all the cute work out clothes I bought, lol.

lala1

I hear ya! I'm on a slow steady gain! I work out every damn day and no results. I've even had days when I gained 2 pounds and once even lost 2 pounds in 24 hours. But mostly it's a few ounces here and there that are adding up. But at least otherwise, I figure I must be healthy...or at least getting there! I also joined MyFitnessPal which is helping now to maintain (or minimize) the gain.

idahoflygal

lala1:

I feel the same way you do! Since my hysterectomy in July 2013, I have gained 20 lbs and have tried very hard to get my weight back down with no avail. Very frustrating indeed!

I just had another 6 mo follow up with my Oncologist and thankfully my blood work was wonderful, tumor marker was low, B-12 was perfect and blood sugars down 20 points from 6 mos ago. Best part (aside from the occasional aches and pains in the bones/joints, the weight gain, HF's and everything else that goes along with a total hysterectomy) is I feel GREAT and better than I have in at least 10 years!! That is not to say the extra weight doesn't bother me, it does, but each time I feel frustrated about it, I remind myself that I am ALIVE and doing well. The weight/number on the scale is a number. I was 20 lbs lighter/thinner and when dx'd with BC, was B-12 deficient, exhausted all the time, no energy, etc. I figured that is what being 43 felt like.

Well, now I focus on my overall health and find it odd that even though I have an extra 20 lbs on my body, I am more healthy overall and feel so much better than I did back when I was thinner. Go figure. I try and walk moderately 3.25 miles about 3-4 times a week for about 13+ miles a week. Again, my weight has remained the same but I am getting my muscle back and toned legs so my jeans are fitting better again so maybe I am losing some inches. So I am focusing on that instead of the weight.

This past Spring my hubby and I hiked 3 miles up at Rocky Mountain National Park to fly fish at Loch Vale Lake up at 10,500 ft. Since I suffer from altitude sickness, this was a big accomplishment for me and I know I would never have been able to do that 3 years ago (even much thinner) ;-) So I am embracing what I am, continually working on maintaining good health and stop beating myself up because as you know, life is short and precious!!

Hugs!!

lala1

Acaligirl---I hear ya! I have all those same problems but still feel better than ever. I was also a smoker, albeit more social than anything, and quit the night before my mastectomy. I figure that's got to count for something, right? And people are constantly telling me how good I look, so I'm trying to ignore the numbers on the scale and focus on how good I feel about myself.

islandmom

Ladies Great to hear you are sticking with your exercise!!!. It is already doing its magic, which is making you feel better than before.

When I started exercising 4.5 years ago I did not have too many expectations. The first year I did mostly cardio then I added weights and high intensity classes. After about two years, I could actually see some definition on my arms and legs, not a lot, but a lot more than I ever had. It is better than loosing muscle, which is what happens at our age if we do nothing. I can mostly control my weight by what I eat, but the exercise has changed my shape.

Scottiemom11

I too am seeing shape change through exercise. I'm losing a bit of weight not much, but better than gaining on the Tamox/Lupron combo. Mostly though I just feel better. This time last year, I was walking with a cane do to a degenerated L4/L5 disk. Went through 3 lumbar epidurals before BC diagnosis and then stopped thinking about my back. In February, I started walking on a treadmill. Then in March I started very light weights with my arms. Now I am power walking 5+ miles a day and hope to up my arm exercises some before exchange surgery in late July. My back is better, I have energy and I'm feeling so much better about myself.

And yes, I still have HFs and nerve pain from TEs but I work through it.

Scottie

JustAJennifer

Hi all, going through a little something with my Tamoxifen and thought I would share. I started in March, so two months for me. I was tolerating really well, just minor itchy skin at first, mild heat flashes, some discharge, amazing sleep. So really not many issues at all. In my recent oncology appt, my bloodwork showed a decrease in white blood cell count and platelets, which is a rare side effect of tamoxifen. My levels were 5 in November, 4.3 in January and recently 3.1 which falls into the "low" area. I am three weeks out from exchange surgery and of course they will do preop bloodwork. In discussing with my oncologist, we decided I will stop Tamoxifen now and pick it back up after the 6/5 exchange surgery and monitor over the summer.

All of this to share with others and ask if anyone has had similar issues? Fingers crossed this does not cause an issue with the surgery date, I want this done!

Stenokim

my white blood cells and platelets have dropped too. My doc said that's expected on tamoxifen and he's not concerned about it. I just get it checked every three months right now, then after I've been on it for two years, I'll get tested every six. I feel fine, so I guess it's ok.. Ki

JustAJennifer

thank you for the reply!

ndgrrl

Kim, do you find  you catch everything since you have been on Tamoxifen? I seem to catch everything under the sun.

 

Stenokim

ndgirl, I definitely catch more than I did before but I seem to get whatever my teenage daughter has. My last blood test last week my wbc count was higher.

shelleym1

cindyK that patch most definitely is causing your vision issues. It dialates your pupils. I had it for a few days after I took the patch off. Couldn't see up close.

fizzdon52

Hi everyone. I've been on Tamoxifen for about 1 month now, maybe 5 weeks. I am feeling so much better than when I was on Femara and Zoladex injections, unfortunately I just couldn't tolerate Femara, it did terrible things to my heart and blood pressure. With the Tamoxifen the only SE I am wondering about is my eyes. I always feel like I have something in my eyes blurring my vision. I am going to the Doctor today just to make sure it's not conjunctivitis or something. Does anyone else have this?

lala1

Tamoxifen is known for possibly affecting eyesight. Check with your doctor but you should also have a full baseline check of your eyes (same as with a TVUS) so your doc can keep track of any possible changes.

ladyb1234

Fizzdon, yes Tamoxifen is known to effect the eyes per my discussion with my MO. I was given an eye exam before chemo, during chemo and then 6 weeks after radiation to get a baseline of my eyesight to keep track of changes.

Hope that your Dr appt goes well!

fizzdon52

Thank you ladies. The Dr didn't know what was affecting my eyes but gave me eye drops in case it is conjunctivitis. I will bring it up with my Oncologists at my next appointment. Thanks again.

DianeNYS

islandmom, I promised I would come back and let you know when I reached my goal weight of 125 lbs.

As of today, I've been taking the med for 6 weeks and 2 days, and have lost more weight: weighed in at 124.8 this morning, reaching my goal of 125!

I'm lowering my goal to 120 lbs. (my Dr. says I can go to 115 lbs. and be healthy; 120 works for me, though; it looks like I'll have enough "skinny clothes" in my hope chest to not have to go shopping ). I've been lowering my goals by 5 lbs. each time I reach one, which has kept my morale intact and excites me each time I reach a goal and can lower it again. 

I'm gaining the confidence that even on this med, by being diligent about what I eat and logging every morsel, and by exercising faithfully (1 hour or more on my rowing machine for 5 days/week if possible), I will be able to reach my next goal and then maintain. I'm really pretty psyched today!

 

 

ladyb1234

Anyone taking Tamoxifen mid-day? I took it at night and caused day brain fogginess and insomnia ; took in the morning caused nausea. Mid-day seems to be working I actually get some sleep now (still have insomnia but when I sleep it is good sleep. I wake-up feeling almost normal, no nausea and most of all I can concentrate now during the day.

mstrouble16

Okso, went Monday to refill my Mylan brand Tamoxifen at CVS and they don't have it. Called Mylan it not a production issue, is any one else having a hard time getting the Mylan brand and if not if I may ask what pharmacy are you using?

AmyfromMI

My CVS does not carry Mylan. They special order it for me. And it's written directly on my prescription so I won't get "stuck" with another brand

mstrouble16

AmyfromMI, mine generally special orders mine as well but McKesson who is our distributor for CVS in Louisiana states they can't get it, but like I stated i called Mylan and the issue they say is not on their end.

stage1

Diane, really proud of you for weight loss and on Tamox! Just wondering how many calories per day is working for you. I lost ten lbs on Anostrosole, but when switched to Tamox the weight will not budge. I am doing the same as you, making five lb at a time as goal. I am now 137, but only 5'2". I am thinking my metabolism is very slow, even with exercise 40 min every day, using fitbit, set 500 calorie deficit. Any suggestions? Thanks for sharing

DianeNYS

stage1, I have an account on Lose It! (an app on my Kindle Fire HD, and I also access it from their website so I continue logging my food and then also read their Forums) and Lose It! calculates your calories after you sign up and give them your info. I am also 5'2" and right now I have a budget of 1329 calories per day (I do log my work-outs, and they give a calorie count for them, but I don't "eat back" my exercise calories), though I tend to come in between 1250-1300 calories each day.

When I started logging my food I weighed 150 lbs., last July 1st, and my allotment was higher because I weighed more (somewhere between 1400-1500 if I recall correctly). As you lose weight your calorie count goes down...Since I've been losing so slowly, I don't actually "feel" the difference and I just have learned to have a little less than before. I also count my net carbs (carbs minus fiber) with Lose It! since that count is just as important to me as the calorie count.

Thanks for your response to my good news, stage1 

 

mstrouble16...My Tamoxifen is also manufactured by Mylan, and I get it at my local Rite-Aid in New York State. I'm only on my second bottle of it, so I don't know whether getting it on a regular basis will ever be a problem, though...I hope you are able to find a way around your trouble with this, mstrouble16...

stage1

Thanks, Diane. I will check out Lose it! I am calculating no mre than 1100 calories. I just bought a food scale, maybe that will help, but I see no other reason, but Tamox, as I was losing on Anastrosole:(. My metabolism slowed, probably..