Bottle 'o Tamoxifen

Lula73 - I agree with your take on avoiding sugar. I can’t believe how many people say to me “sugar feeds cancer” or makes side effects worse - there is absolutely no proof. Yes, you can find some studies, but I’ve asked the doctors at my top tier cancer center and John Hopkins and both said there is no evidence that this is true. Eat well, exercise, everything in moderation- you know the drill!

When people find out I had Breast cancer some of them point to these studies as if they can pin the blame for the disease on me - you ate too much sugar! Drank too much wine! You drank out of hot water bottles! It used to piss me off - now it makes me sad for them because they just don’t get it.

Lula- not diabetic. Never had a problem with sugar before. Took me months to figure out it was the sugar making me feel worse!

VL22- I don’t avoid it because it “feeds cancer”. I avoid it because it makes me feel like crap. I can’t speak for anyone else, just my own experience. I had a piece of birthday cake the other day, because life is for living, right? I ended up spending the rest of the afternoon in the recliner with a fan on me, too ill to get up and make dinner or bring in the laundry from the line. It wasn’t worth how bad I felt after, like I had the flu. Even orange juice can make me miserable!

I don’t know what Tamoxifen plus Lupron does that messes with my sugar, but it does.

Lula- no, I would have to borrow someone’s glucose meter though. I did not know that about Lupron. Or maybe I did read that at one time and just forgot? Can’t remember . Makes sense to me given my experience. Thanks!

Lula73,

I was in a bicycle accident with another bicyclist who was going a high rate of speed, and crashed into me. I'm pretty sure the initial impact broke both my shoulders as I was holding onto the handlebars. Unfortunately, both sides are displaced which means either leave as it is and see if the bone grows back together or surgery. Trying the first option first. So can't take anything that depletes my system of calcium or hormones.

I'm not sure what curcumin is but I'll look it up. I do have to be careful of taking lots of products as my stomach can't handle much. I'm interested in trying Melatonin. Is it something you can't get at the health food store vs a prescription? Anything at this point, I need sleep!

Hi Runor,

I haven't tried splitting the pills. My pills don't have any type of coating on them, just dry pills which taste horrible. I'm thinking that maybe taking it in the morning might work. I've been taking it at 8pm and it seems like it would be at the peak of concentration which I'm trying to sleep.

I'm wondering if the other ingredients added to the Tamoxifen might be causing the problem. My doctor wrote a prescription for the name brand to try but I'm not sure if it only comes in generic. Have to talk with the pharmacist.

I've been menopausal for about 11 years and never had any problems with bleeding or anything gyn since periods stopped. The MO thinks it was just because I stopped taking the Tamoxifen for one night. I'm going to make an app't with the Onc Gyn to see if that makes sense or they need check things out. Glad to be menopausal, those periods were a killer for me also.

cpeachy- you can pick up a meter cheap at Walmart for around $10. Would be a good investment.

Veeder-I remember the accident now! Hope you continue to heal and can avoid surgery. I have not found curcumin to mess with my stomach. And the Solgar brand does not require you to be ingesting a certain amount of certain fats to make sure it’s ansorbed. You can just take it whenever you like regardless of your diet. They’ve taken it from a fat soluble supplement to a water soluble one. Melatonin is available at any pharmacy in the vitamin aisle. I would start low at 3mg and see how it does then go to 5 or 6mg and then 10+ if needed. I hope it helps

Hi Lula73,

I'll go to the pharmacy and get some melatonin and check out curcumin also. Thanks.Yeah these shoulder fractures are quite painful but my range of motion is good. Just worried about not being able to get my mammogram (was due in August) because it will mess up the healing already in progress.

Search for "Tamoxifen and gallstones" and you will find references to reports about gallstones in women taking Tamoxifen. Assuming you can have laparoscopic surgery, having your gallbladder removed no longer requires the long recuperation period it used to. Several years ago I had a friend who had her gallbladder removed on a Tuesday and was able to attend a friend's wedding on the following Saturday without looking like she had just had surgery. Good luck!

Veeder14 - about turmeric/curcumin . I have not used it for injury related joint problems, but have used it for (general aging?) and now hormonal therapy. Years ago, before any cancer diagnosis I noticed slight issues in hands /fingers with stiffness and occasionally with cold, So I started taking supplements and after a month or so noticed gradual improvement. The supplements vary in strength and "proprietary ingredients". There are many curcumin products. One I use now is made by Gaia , joint formulation, they make several formulations. Another product in cold months I like is "Golden Milk",a mix of turmeric, dates, cardamom, black pepper, which you add to milk of your choice. If you just use turmeric, adding black pepper is recommended for better absorption.

With anastrozole, joint stiffness in hands was almost immediate, and much worse than it ever had been, one thumb even became distorted. My oncologist suggested it might get better ( it did not) and that I could try a different generic or even brand name ( one blogger reported the brand name did not have the SEs of generics, and she was able to get it $1/day from manufacturer. My insurance would have charged 7$/day. I ordered some from the manufacturer, but decided not to take it, because the stiffness/pain seemed to be subsiding after quitting anastrozole.. I take curcumin supplements as well as adding turmeric to food. I switched to Tamoxifen after no hormonal therapy for several months. No SEs, unless those occasional cramps in calf muscles (usually only left leg) are an SE.

My hands do feel a lot better. I do not know if it is the turmeric, supplements, absence of anastrozole or all of the above. I have tried CBD with/without THC and did not find relief from joint issues or occasional sleeplessness/waking up. Don't know if I need to try it more since it might take time to have results.

2009 ER+ left breast. 52 yrs. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in hands. Started tamoxifen March 2018.

2fun- I have almost no SE. Things I have that I think is the tamoxifen are little short time memory loss. (Why can't it be some of the long term there's lots of shit I would like to forget!) I have always had a great memory. I never wrote down a grocery list, if I had an appointment 6 months away I didn't have to write it down or never forgot why I went to a room. Now I put conditioner on my hair 3 times in the shower! LOL because I can't remember if I did it! I also have a urgent need to pee! That is 100% Tamoxifen! I did it the first year I took it but when I was on Anastrozole it went away. I sleep well have no pain and I've most 20 pounds since March. I was on Tamoxifen for a year then put on Anastrozole for 2 1/2 months and have been back on Tamoxifen since about June 5th. I take mine at night after dinner. I consider myself fortunate that I don't have the side effects but then my little brain takes me to the is this really working place since my body is not reacting like so many others.

Veeder14- it is so annoying! I cut back on my water (and coffee) if I think I will not be able to access a bathroom. I'm not ready for piddle pads or depends either! I had to give up my pretty bras due to LE I refuse to let the pretty panties go to! I'm 53 and guess it was time for me to start forgetting things.

Hope you have a comfortable flight!

Hello gorgeous ladies, I was wondering if anyone suffering short of breath with tamoxifen???? I was doing great the first 3 months of tamoxife, but starting months fourth all the side affects said d hi to me...

Hi Lula73,

If this is atrophy after only 7 weeks on this stuff, I hate to think about what will happen in the next almost 5 years. Yikes.

Hi Vagadoll,

I do the same thing and stop drinking water if I'm going in the car for a long time or not sure there's a bathroom nearby. Thanks for your good wishes for my flight. I'll be flying in October. Looking forward to vacation. Oh, I wish I wasn't high risk or I would quit the Tamoxifen.

Veeder- it could be the start. Are you experiencing any discomfort or needing more lube than usual during sex? If you put a finger or two inside is it nice and moist? Noticed any dryness? Noticed a change in your inner or outer labia size or projection?

Hi Lula73,

I haven't noticed any of those symptoms however a couple of years ago when I got really dry outside and inside I was prescribed Estrace Cream, which I have been using. Prior to using it I was just miserable, scratching, itching, burning and ready to tear my skin out. Really bad. Nothing helped.

I talked this over with the MO NP who said they wouldn't prescribe this to breast cancer patients but since I already am using it, it's ok. I have a follow up next month with the MO but will also talk with my Gyn and about it. I've cut down the amount I use and sometimes just put some on the outside, plus only use once a week inside, just enough so I don't go back to the way I was before. I thought the Tamoxifen blocks the effectiveness of estrogen so I guess it would be additional estrogen to have to block out of my system.. I'll have to see if I need to quit using it altogether.

Lewhy- did you have a SNB? I had weird little pains and ended up being LE. I didn't realize you could get truncal LE. I thought it was just arms.

I agree with the shortness of breath Lula73! When I read that the first thing I thought was blood clot to the lung! Please get checked Nas!