Bottle 'o Tamoxifen

Suzanne50

I have to agree that it is all a crap shoot - we can do everything possible to avoid recurrence but there are no guarantees. If it comes back, I like knowing I did all I could.

NormaJean65

rleepac I can empathize with you completely. After taking it for 5 yrs. I have another 5yrs to look forward to. Just last night my thoughts were (and still are) that I just want my life back. I hate that I feel I am now "branded" forever as a breast cancer patient.

DeeRatz thank you for giving me a new way to look at my nightly little white pill. You put it in a new perspective for me.

Wendy3, I hear you and I am so sorry they found it so late in the game.

Suzanne50, I agree with you 100% but with life many things are a crap shoot. Personally after 5+ years I should be more thankful but sometimes all of us grow weary.

BBwithBC45

Cidneyl, my eyes are hurting and I'm experiencing blurry vision, but no redness. I do know that Tamoxifen can alter vision. I finally went to see an ophthalmologist and was told that my issues are caused by dry eyes, which happens when we "grow wiser". I was happy to find out that my optical nerve and everything inside my eye looked OK.

If your issue does not resolve, it might be worth to pay an ophthalmologist a visit

solfeo

Twice I have credited some problems I was having to side effects from the cancer treatments, that turned out not to be.

After my surgery I suddenly found myself with an unbearable case of restless leg syndrome. Since surgery was the only thing that changed I thought something must have happened in surgery to cause it. It was over a month before I realized I had also changed something else. I was trying to get extra protein in my diet for healing purposes and I was drinking whey protein shakes every day. I don't eat cow dairy so it was goat whey. I started the shakes the day before surgery. I certainly didn't think that could be the problem but because it was the only other thing I was doing differently I decided to stop drinking the goat whey to see what would happen. The very next day the RLS went away and has not returned. Who would have thought? Goat whey protein of all things! That was before tamoxifen.

The other thing is related to tamoxifen. I thought it was making my hair fall out, which caused my MO to want to reduce my tamoxifen dose to 10mg. I was about to do that against my better judgment when my dermatologist reminded me that I had stopped using minoxidil (AKA Rogaine) for my thinning hair when I was diagnosed, because I was trying to reduce chemicals in my life. One thing that happens when you stop is that all of the hair you would have lost had you not been using it starts to fall out after 2 or 3 months. The dermatologist thought the hair loss would stop when that cycle was complete, and sure enough it does seem to be slowing down to a normal level. I thought for sure it was the tam but it probably wasn't.

Maybe our MOs have a tendency to dismiss every little thing as a side effect as well. Sometimes it's probably a good idea to take our concerns to our other doctors who have a different way of thinking.

lala1

So I had an appointment with my GYN today to do a one year followup from my hysterectomy. I asked him about iCool. He did a little research for me and said that the active ingredient is not technically genistein. He said it's an "altered" version that should not have pose a risk for BC survivors. I told him about Canada having a different opinion and he said it's just a matter of what the FDA allows as opposed to Canada's version of the FDA. He said if it was his wife or daughter he would not have a problem with them taking it. I have put in a call to my MO with the same question. He's the one who recommended it in the first place. So far, he hasn't returned my call but I'll let you know what he says. His specialty is BC and he's a bit of a research hound so I trust his opinion.

molliefish

Today I took another one. I had my regular hot flashes through the night last night and I didn't sleep well but I attribute that to typical reaction to having to get up before the crack of dawn to be to work on time. I took another tonight. I'm sure it's going to be just fine. :-)

now my biggest issue will be remembering to take it... just like the birth control pills... all those years ago.

Sloan15

molliefish - I set the alarm on my phone 2 go off twice a day...forever. Otherwise, I think it'd forget, too.

superius

I have an ache at the bottom / back of my neck.... don't know if I need a new pillow, or it's because I tighten my muscle when I have the chills, or if it's side effect I should email the MO about. Did someone mention aches & pain as side effects?

dtad

There are many docs out there that feel that Icool is ok to take if you have bc. Wish they could all agree though!

keepwalking

Sloan - love the new pic (hair!). I am glad you are still doing well with your megadose

Well, I am restarting tamoxifen tonight. I stopped 2 weeks ago due to some side effects (mainly lower abdominal pain), but by 5 days I was feeling back to normal. So, my MO says lets give it another try. I decided to move to night instead of morning this time because I didn't want to risk feeling a little nauseous in the morning during radiation treatment. We'll see how that goes.

goldenpawsKim

Hi Claire - just read about your shoulder. Ever since I started tamoxifen, I've had problems with aches and pains (especially my shoulder). Can barely lift my arm over my head. Did you have those problems too? How did you hurt your shoulder? Don't even feel like having it checked out .... enough with the docs already Hope the shoulder is better .... did you have surgery yet?

Kim

fizzdon52

goldenpawsK I have been on Tamoxifen for about 9 months now. I wasn't my first choice but I couldn't tolerate Letrozole/Femara. I can't believe how wonderful Tamoxifen is compared to those other drugs. I almost feel like my old self again which is a wonderful feeling. I do get the odd aches and pains, but I have noticed they eventually go. It's almost like Tamoxifen picks on one part of your body for a few weeks or even longer, then decides to pick on another part of the body. I had extremely sore ankles for a few months and even found it hard walking after getting out of bed. However that has subsided now. At the moment it is my shoulders that are bothering me. So yes, I do have very painful shoulders occasionally. However I am expecting that this will stop in a few weeks/months and maybe some other part of my body will start hurting. At least I am alive!!!

Suzanne50

I put my bottle of tamoxifen by my toothbrush to take before going to bed. It was recommended that I take it at night and I was so afraid of forgetting.

Sloan15

keepwalking -yes, hair! Yay. I hope the restart goes well! Reminds me of a story about the Mars rover. Apparently it wasn't responding right, and the engineer says something like, "Maybe stop it and then turn it back on for a reset, and that should work." Sure enough.

lala1

My MO called me back today about iCool. Said he's still totally comfortable with me taking it but that he would research further just for our peace of mind. I completely trust him as well as my gynecologist so for now I will continue to take. I've gone from 6-8 night sweats every night to one or two so it really works for me.

momwriter

I take Tamox right before bed.

I have weathered it fairly well. But I do think it can give joint aches and muscle cramps. So to combat those I take extra magnesium and fish oil which seem to help. I also do a lot of yoga which helps too even though I'll get occasional muscle cramps and joint aches while doing it. I'm also 50 and in meno so could just be age catching up with me.

ladyb1234

keepwalking, hoping the reboot goes well. Keep us updated

molliefish

Day three

I am not sure why I thought there would be any reaction or side effect from this drug at this point. I am smart enough to know that it will take some time for any side effects to be felt given that the drug needs time to work. Suffice it to say I feel pretty darn good. Happy to be on the other side of 'active treatment'. My skin has healed (except for the tan) from radiation. My nails are growing, hair is growing (everywhere) and I feel well. That is what is important to me. I feel well. I'm ready to go back to the gym and get on with it. My thing has always been 'onward and upward' so let's get to it. Chat with you soon!

jbokland

Mollie- yep! SE may come and go...at any time.

Overall, I think it's a small price to pay after all the other shit!

Attitude is 80% of recovery!

keepwalking

Sloan - Thanks for the Mars rover analogy - I hope that is how it is!

molliefish - Good to hear that you are feeling so energized and ready to march forward!!

I put a sign in the closet on top of my nightgowns that says "TAMOXIFEN". I hope that will help me remember at night.

lala1

momwriter--Just an FYI in case you need it....I take tumeric and ginger for the muscle/joint pain. I started it about 6 months into my Tamoxifen when I couldn't get more than a couple of hours of sleep at night and I hobbled around during the day. Within a week I went from a pain level of 8-9 to a 1-2 out of 10. I now sleep soundly through the night and have joined a gym and run on the treadmill, lift weights and do yoga. And as an added bonus, both are really good for your heart health.

Annchamama4

also picked up my tamoxifen today. I am 34 and the side effects look worrisome. Weight loss is the only good thing I see. 😃 I will start tomorrow morning. I hope to have no horrible side effects. I have to take for a yea

jbokland

weight loss....? It's been weight gain for me.

Trvler

Yeah, I didn't see weight loss as a SE. I wish.

rleepac

I've only been on it about 8 weeks and I've gained about 6 pounds. This could just be me rebounding to my normal weight after it dropped so low during chemo but I'm keeping an eye on it

Wendy3

I have been on tamoxifen for seven months, I am lucky in that I have no side effects. I do attribute this to exercising for at least one hour everyday. Also a change in diet and juicing.

lala1

Weight gain here. Not much...about 6 pounds over the last 3 years but I'm limiting calories and working out every day so I can only imagine what might have happened.

solfeo

I have lost 21.5 pounds since I started tamoxifen on November 17th, but I was already on a strict ketogenic diet before the tam. Others seem to be doing it on low carb diets as well, from a conversation we had on the subject a few pages back. I think tamoxifen affects the metabolism (probably in multiple ways) so even if you don't eat more or exercise less while on it, you can't tolerate as many carbs as you could before. Everyone has a different upper limit and you have to experiment to find it. People who exercise a lot can generally eat more.

pennsygal

Hello all -

I saw my MO today, but forgot to ask this question. Why do some people take tamoxifen at night vs morning with breakfast? This is only day 3 for me, but I've seen many post about that.

Thanks!

RobinLK

I take mine in the morning to split up all the medications I take. I have to take my lovastatin at night so I just picked morning to space it all out some. With the Effexor, calcium and vit d it was just easier.