Need your Tips for Taking Oral Hormonal Meds as Prescribed !
Comments
-
I take it at the meal I eat at the most consistent time, which is breakfast. I use a weekly pill holder so that if necessary, I can check that I got my pills that day. I leave this on the table where my breakfast plate will go after dinner.
I am intentional about my gratitude for tamoxifen, especially in periods when it's causing side effects. Specifically, I say to myself, "Thank you, tamoxifen" each time I take it.
0 -
Hello.......I believe we have similar diagnosis, i was diagnosed with DCIS and did a lumpectomy with radiation and was prescribed Tamoxifen. But i have stopped the tamoxifen. Have been off for about 7 months now. Well in my last months MRI there was a suspicious finding on my left breast, two non mass findings. Since 2016 I've had T2 multiple foci and cysts. I believe it would just be a cyst, although the small lump seems to hurt when touched. I am up for a biopsy but don't want to go thru the process if the likelihood is just a cyst.. I am confused since the lump hurts and i don't recall on my previous lumpectomy findings to be in pain, this was on my right breast. I would like to know if the MRI's contrast used actually have false readings, which ones have more clear readings. It may sound ridiculous to try to skip the biopsy. My body has had many problems and turmoils i feel like it barely is recuperating and here we go again thru more needles and pain. Please help..
0 -
blueteal
I know you are tired of being poked and prodded (to put it mildly). No scans are 100%, and yes the MRI can get false positives but with your DCIS diagnosis, I think the biopsy is a good idea, as hard as that is to hear. Good luck.
0 -
blueteal, yeah, I'd do the biopsy, as onerous as that sounds. Look at it this way: down the road you might regret not doing it. But you're not likely to regret doing it.
0 -
hello took Tamoxifen for 5yrs in evening as prescribe no problem. Praise God I'm now a 25yr Survivor also celebrated our 25th anniversary also. Thank God. msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast got married for we were planning when diagnosed then 7wks rads and 5 yrs on Tamoxifen. Take care all.
0 -
Easy.....just set an alarm on your phone.
0 -
I'm not taking medications yet but when I used to for other things, I just kept it in my purse and took it at work. I didnt want to run the risk of leaving it at home.
0 -
I'm almost at the 5 year mark and just bought a weekly pill container. I don't know why I didn't before. Over the years I really didn't worry if I missed a day because the pharmacology of Femara is that its half life is 48 hours, and actually 1/5 of the regular dose works.
Now I am weaning myself off, skipping one day out of 3 currently, so I need to keep track.
0 -
The reason people have difficulty taking these is that they are toxic and dangerous and those pushed to take them know it. The way to improve the situation is to do better research, so that these things don't have to be taken at all. Research seems to be focused on all sorts of things that kinda/sorta slow cancer down, but not on treatments that kill cancer cells outright. Consequently, people with breast cancer are forced to endure awful treatments, often for years, most of which actually never work, and more often than not produce lasting negative side effects. Using pill boxes, and taking another pill to counteract side effects, and then another pill to counteract those side effects and on and on is not the way to go. It is not the answer. The problem is not "remembering" to take them. The problem is that there really is no effective treatment out there - just all of these temporary band aid solutions with their own horrible downsides. When researchers really put their efforts into finding a way to kill cancer cells and cure it, the problem will be solved.
0 -
I just started anti estrogen therapy (anastrozole) 2 weeks ago. Took my first dose in the morning on a day I didn't work, so I could be home If I had any issues. Did ok for the first week, but then found I hit a "wall" every day at around 4:00pm. I'm still working, doing ok at my job, but exhausted when I got home and napped every day for a week. Tried taking at 4:00pm in the afternoon, felt fatigued and just "not well". Now take at noon, have extra meds with me at all times if I'm not home and need to take a dose, and so far working well after 5 days. Still tired but don't feel like I'm fighting my way through a thick fog. My cancer nurse navigator said sometimes its trial and error, and need to find the time that works best with my body chemistry. I tend to be sensitive to medication side effects, so hopefully this schedule will work for me.
0 -
I have tried taking Tamoxifen after breakfast and after lunch. I had the side effect of insomnia. I read where someone took it around 8pm and was able to sleep. Now I take it with my fish oil and magnesium around 8PM and so far I am sleeping most nights. My leg cramps have recently become worse the magnesium and low dose gabapentin have helped. I just read an old post where someone said a small glass of quinine tonic water or V8 juice helped them. I'm going to try that with my Tamoxifen. I don't have any trouble with remembering to take the Tamoxifen.
0 -
AmandaKate,
You did the right thing, and the advice given to you was also good.
I’ve been taking Anastrozole just short of two years. I tried taking it in the early evening, right after my dinner, and I did not experience any noticeable side effects. So just stick to that schedule, seems to work for me. I also try to get the same generic whenever possible, as some patients have reported different symptoms with different generics (usually it’s a slight difference in the “filler” used). Best wishes forcontinued good health.
0 -
Since I live with a transplant patient we were used to a schedule of meds. We were told to do like 7 and 7 or 6 and 6 depending on your wake schedule. If he has labs he has to do them before his pills so that complicates things for his but I just did mine when DH took his.
0 -
Amandakate,
That's so interesting - I had a very similar impact with tamoxifen but changing time of day didn't help. It was the first time in my life ever that I have taken naps, and I needed a nap every day. I would get home from work, collapse, wake up and work for an hour or two, and then sleep again. I hadn't heard of anyone else with that side effect. It was so sedating I wondered if I should save some for long flights or something. I ended up changing to toremifene which doesn't have that side effect for me.
0 -
Thanks for the reply
Stay safe 0 -
Forgetfulness after chemo made it hard for me to remember whether or not I had taken my meds. I decided tying the taking of meds to something I did everyday was my best bet. So, I made a rule for myself that I had to take my meds before I could put on my pants in the morning. If I have on pants, then I must have taken my pills!
0 -
That is a great way to remember. I take other medications so I have an organizer for each day and that way I take all of them at night before I got to sleep. Are you having hot flashes? I have been on the Armidex for two months and the hot flashes are horrible; I wake up in the middle of the night covered in sweatl have to get up and change clothes and put a towel on my mattress, Five years of this is not good; I am glad I sleep alone,
0 -
TreeThree, I hear your frustration. There are tons and tons of studies about non-compliance with these drugs, with anywhere from 20-70% of women quitting early or not taking as directed. The studies all conclude that women should "get more support in dealing with the SEs." How about instead they spend more time coming up with better treatments instead of continuing to push drugs many women cannot tolerate and then piling more drugs on top to manage the SEs?
0 -
Sandy - Welcome to Breastcancer.org, and thank you for your helpful tip and contribution to this thread and our Community. We hope you're finding what you need from our boards. If you have any questions at any time, feel free to get in contact with us, we're always here.
Best wishes,
From the Mods
0 -
BCat40 - Thank you!
0 -
Darlene63: Sorry you are having the dreaded hot flashes. I had them really bad the first two months. I was thinking about quitting but my MO asked me to try taking Celexa. It's a traditional anti-depressant that they have found can reduce hot flashes. In my case, it worked. I've improved 50-75% from before. Maybe something to discuss with your doctor. Before Celexa, I bought one of those 'sweat towels' that athletics use and I kept it wet and at my bedside to use when I woke up in the middle of the night sweating. I hope you find something that works for you.
0 -
Since I am on frequent dosages of pain meds it is super important to take them exactly as prescribed. It is extra confusing for my one medication that is every two hours as needed. So to make it ez we use two pill containers one for the normal pills for the day and another’s for the pain medicine that Is every two hours as needed. It is a twelve slit container / The pain meds are attached to a clip board so I can write down the exact time I take each pill , plus I also take a picture of me taking the meds and send it to my husband this way there are twosets of eyes monitoring.
0 -
I have taken exemestane for almost a year, having tried tamoxifen and anastrozole. None of them are without side effect for me-mainly almost unbearable pain in my hands, trigger fingers, extreme vaginal dryness (to the point of bleeding cracked skin) and hot flashes/insomnia. And this is the best of the bunch. Like many others, I will not take a pill to counteract a pill's side effect-that is ridiculous and the only offer of help by my onco. I manage the vaginal dryness with Replens and coconut oil, the pain with ibuprofen, and the insomnia-well I don't manage that very well. At times I deliberately cut my dose in half for a week or ten days, that really helps. (Not suggested by doc.) Asked for some Ambien or Xanax and was told by my doc that 'we don't handle the issue that way', Excuse me, we? When did she get cancer? Thank God my family doc prescribed me some Ambien, which one month's worth I have had now for nearly six months. Obviously I am not over using it. I am bitter and angry about this issue. Only someone who has never taken these drugs would think they were OK. Sometimes I wish I had done a bilateral mastectomy, I might not have had to take these poisonous drugs.
0 -
suzyqflowers, I was told the same thing! I had asked for low dose temazepam 15mg. My daughter took Ambien for a while and ended up driving while asleep to the corner store. We only knew because she had forgot to turn off her security alarm and we were called. She ended up safely returning, but thank goodness it was 0100 in the morning and no one was out. Be careful with that drug.
0 -
I downloaded the “Round” app on my phone. It’s a medication reminder app. You can set the time and med and it will alarm you...then once taken you just hit the “all taken” button and there you go. Logged! I do have to admit though I have forgotten to put that all taken button and then I forgot if I took my medicine or not!
0 -
Hello Breast Cancer Survivors!
I am new to the site. I am a 50 year-old who was diagnosed with stage 1B Invasive Ductal Carcinoma, hormone+/HER2- in March 2020. I underwent a double mastectomy and completed 3rd gen chemo regimen on December 10th. I am now looking at the suggested hormone therapy - Tamoxifen - recommended by my oncologist. I am experiencing significant joint pain post-chemo, which is a side effect of Tamoxifen, among others that are much more serious. I am interested to hear from those who have undergone this regimen of treatment - pros and cons, is it worth it? I am also looking at alternatives such as ovary removal. Any input I can get would be most appreciated.
I have struggled more post-chemo, mentally and physically, than during and would love to find some support.
After I get this figured out, I need to look at reconstruction. One step at a time ...
Thank you and my best to all of you!
0 -
have anyone developed dry throat under letrozole? It is more thann a month I have it.
0 -
having a weekly pill organizer helped me to remember, as well as easily double check that I had taken them. I keep it on the kitchen counter for aneasy reminder.
0 -
margun- my dentist brought this up that a lack of saliva can be a side effect from my medications. And if it happens to me, to contact them for a mouthwash. Perhaps you can ask yours?
0 -
Hi eyesofblue,
Ovarian removal isn't really an alternative to tamoxifen. If it were, post menopausal women would not be prescribed hormone blockers.
I think it is absolutely worth it to try hormonal treatment. It's somewhat like birth control, the side effects are different for each of us, and can even vary with the brand. But if one brand of tamoxifen doesn't work well for you, you can try another, you can try to split the doses or different timing, you can try a different SERM (I ended up on toremifene) and you can try ovarian suppression plus an aromatase inhibitor class drug.
If they *all* have intolerable side effects for you then it's time to go off and hope for the best. But many women can find at least one variation of one of these drugs that has tolerable to no side effects. Seriously, for some women, it's like sugar pill that gives magic cancer preventions. What a shame would it be if you were one of those women and you never knew because you never tried.
I can't really speak to the chemo support specifically but if your cancer center has a psychiatric services department, it can be a great resource. And these boards of course.
Good luck!!
0
