Bottle o Tamoxifen
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Thanks Beaverntx for explaining about the compression stockings. I can only sit comfortably for about 30 minutes, fly in First Class so I can do my stand up/sit down routine over and over again without bothering anyone. I will probably wear the stockings anyways.
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Anyone notice as a side effect of tamoxifen a weaker bladder? No leaks, butI feel like I now need to pee constantly!
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kec1972 I agree it seems my bladder is weaker since being on Tamoxifen.. I would also kindly suggest you might want to rule out a bladder infection. Otherwise I do seem to pee more being on Tamoxifen.
Beaverntx. I forgot to mention besides the sleeve I wear while flying, I also wear compression stockings while I fly. Also besides the breaks to walk around the airplane, I do have to get up to pee. I have decided its best for all i don't get a window seat lol.
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I had the bladder issue for the first month or two but it went away and no further symptoms like that.
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Twills, thanks! It’s good to know that this will hopefully go away...so distressing
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Rljes, did she mean BELLADONNA in the homeopathic way? Belladonna is a much used homeopathic remedy. While I am not much into hocus-pocus medicine, I do study and use homeopathy, often with astounding results. In people you might pass it off as the placebo effect. But in animals, who have no concept if they are getting the real drug, the fake drug, or any drug at all, it can have profound effects. I use it on my livestock, myself and family members.
The GOOD thing with homeopathy is that no detectable levels of Belladonna will be found in your tablets. You cannot poison yourself even if you eat all your homeopathic Belladonna at once. The BAD thing with homeopathy is that no detectable levels of Belladonna will be found in your tablets and you can eat them all and it will have no effect whatsoever because it is make-believe. Or is it? (insert music from The Twilight Zone)
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rljes - belladona ? Is that what is actually in the homeopathic? Several years ago a tomatillo like plant was growing in my garden, but the flowers were not the right color. As it fruited, I sampled some of the small purplish fruit. It was a little seedy, slightly sweet, but I thought I might be able to do something with it, but I thought I should find out what it was. I walked down to the nursery a few hundred feet from my house and asked one of the garden crop specialist. She told me it was belladona, deadly nightshade, often spread by birds. So I quit eating it, and yanked it out of the garden. If you google belladaona, you will find that women took it to get a botox like effect. Belladona means beautiful lady, and is poisonous if too much. But it is used in some medicines, ointments. I don't think it is an opiod.
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Hi, I am in my first week of taking 5mg everyother day, easing into this..., but I travel a lot for work and my MO said to use compression stockings for airplane rides over 2hrs...
Actually he said "use the 2 hr rule" so maybe that also applies to car rides...
I fly the first of June, so I already bought a pair of socks via Amazon...I wasn't given an Rx or any guidance on what to get, they are medium compression 20-30mgHH...used for athletes/nurses/DVT prevention...I think they are just trying to make us feel less bad about wearing them. TT
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Hi Runor and BlueGirlRed - very interesting about Belladonna. I have no idea why my OBGYN Dr would said it was an opioid, and not explain that it was homeopathic when I said I had never heard of it. That was very misleading. After googling, it sounds like it has some amazing potential results. It says it can help with nerve and joint pain, HOT Flashes, stomach pain, Nausea, calming effects and a painkiller. Everything I need. and of course I can order from Amazon. I wonder how my OBGYN would prescribe it? She did say it would be rectal. Sounds amazing, but so did CBD - which did nothing for me. And I really gave it a good try.
I'll try her first choice of Gabapentin this weekend, give it a chance and see what SE's come with it, then I plan to re-start Tamoxifen next week. and I have to work in my auto-immune suppressant Methotrexate, trying to keep track of which SE's go with what drug.
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Deadly nightshade, in your garden, is a toxic poison. Do not eat ANY part of that plant!! Yes, it looks like a delicate potato, quite attractive in fact. Get it OUT of your garden. DO NOT EAT IT!
Belladonna, when used as a homeopathic remedy, is prepared in such a way that there is no detectable deadly nightshade that can be detected in the pills. This DOES NOT mean that you should brew up belladonna tea and drink it, that is a good way to die. Do not do it.
There may be other instances where Belladonna is used in medicines other than homeopathically. I am not familiar with any but that doesn't mean they don't exist. Rljes, you need to ask your doc for clarification. That remark about Belladonna was horribly incomplete and misleading in that it pointed you nowhere.
Digitalis (foxgloves) is used in heart medication, but that does NOT mean you should traipse out to the garden and start eating foxgloves.THe outcome will be quite different than intended! Same applies to homeopathic Belladonna. Prepared for use is a whole other ballgame from growing in the garden. One is safe to use (homeopathically) the other is not an opioid but a toxin. Do not consume it.
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runor, your post really should come with the same buttons they have for FaceBook posts. I'd wear out that "haha" button.
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Hi, Ladies - I'm having an outpatient D&C procedure tomorrow prior to starting my Tamoxifen. Did any of you have any endometrial lining issues before or after starting Tamoxifen? If I'm having issues with thick lining already, I'm really hoping this isn't going to be an ongoing issue? Hoping for the best. Many blessings to all - FaithFilledGirl
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Hi FaithFilledGirl,
Yes, my lining was 2mm prior to starting Tamoxifen and I'm menopausal. After 4 months on Tamoxifen my lining was 17 mm. Then had a hysterectomy so I could continue with Tamoxifen. Otherwise, if I had chosen D & C I would have had to have them often. Good luck with your procedure tomorrow.
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Yes, my pelvic ultrasound before starting Tamoxifen showed a thickened endometrium. As you can figure from my age, I am well past menopause. Outpatient surgery found non malignant polyps. Gyn surgeon was willing to go ahead with a complete hysterectomy (and I figured those organs were not doing much but taking up space!). The path report from the surgery indicated some premalignant cellular changes in the uterus can the surgeon said I made the right decision. All that to say, yes, others have had issues similar to yours. Thinking of you tomorrow -- may all be well.
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Thank you so much for sharing your Tamoxifen & endometrium lining experiences. All when well yesterday with the D&C and the GYN should have the pathology results back in another week, but thought the polyp had a benign appearance so my figures are closed. We're holding off on the Tamoxifen until we get these results. Just another little speed bump in the breast cancer ventures. Since I already have bone thinning & orthopedic issues, the Medical Oncologist believes Tamoxifen is the way to go if we can keep the lining at bay. Thank you & blessings to you both - Judy
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Ladies: Thanks for mentioning about your endometrial lining issues. I have made an appointment for my annual well woman exam. Have not had a trans-vaginal ultrasound in years. Been on Tamoxifen for over 6 years and hot flashes and achy joints are my only major issues.
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Lezza--are you premenopausal? Any periods?
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kec1972. I am in menopause due to chemo, No period for 7 years now.
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To all who post their experiences with Tamoxifen and DR's opinions and thoughts, thank you. It sometimes amazes me that there is so much variance, then again we are all different. I am now experimenting with tamoxifen after going through a couple of weeks of sleep issues. I think tamoxifen might contribute, but I am not sure. At first I suspected the change in generic for a BP drug, because the problems started immediately with that. The generic I had taken was no longer available, and the brand name was cost prohibitive. I was taking tamoxifen for quite a while before the sleep issues came on, so I stopped taking it, and once again enjoyed sleep. I am just starting it again. Also, the tests Drs do. Mine never suggested the endometrium lining checked before/during. Is that only done if something is suspected? I am also experimenting with turmeric, wondering if I was taking too much and if it might be contributing to frequent urination. For a few years I was adding it to meals as well as using a supplement. (1/8 - 1/4 tsp daily in meals). I think it did help with joint stiffness, because that got worse when I quit adding it to meals. I still take the supplement. I guess tamoxifen does not have the generics that AIs or some other drugs have. Generics add another dimension. Generics are not the same for all people, even if the label insists that it is the same drug. The AI forum has quite a bit of discussion on this (I quit AIs because joint issues immediately got worse, especially fingers). A very interesting interview on NPR on generics, now I want to get the book for more details. I suspect supplements might even have more problems/issues than Rxs and generics. https://www.npr.org/sections/health-shots/2019/05/16/723545864/the-generic-drugs-youre-taking-may-not-be-as-safe-or-effective-as-you-think
Exercise very regularly, if not at the gym, then walk/hike, weights, stretch, swim, x-country ski etc
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil (but not now). For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine for about a year. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. – 1. 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. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
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BlueGirl-- My MO didn't order a hysterosonogram, I requested it. My GYN was thrilled I was proactive. She found a polyp that I had to get removed and I postponed T for almost a year after that. Now Ive been on 10mg, most days (my decision, not my drs) and I go back today for a follow up hysterosonogram which are so uncomfortable, I'm dreading it. I'm also praying no polyps are found. Wish me luck!!
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Pamela, good luck and best wishes today!
Bluegirl, re Tamoxifen, there are only generics available now. Some folks have found the product of one manufacturer to be preferable to others and which manufacturer varies from person to person, others have not reported any difference.
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Pamela, good luck! Keep us posted.
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Hi everyone, hoping to get some insight. I’ve been on tamoxifen for one year next month with very minimal side effects. So minimal I forgot I’m on it. The pills I’ve had for the last year have wpi on one side and 2233 on the other. I just picked up my refill and they now have a different kind, the new pills have 827 on them. I’m so worried I’m going to have horrible side effects now on this new brand. Anyone switch and have no problems or start having side effects? Thank you!
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SSL--I stayed with Mayne (Teva) brand and when I picked up my Rx one month, I asked if it was the same manufacturer and he said no and said he'd get me Mayne and put a note in my file so I always get it. I still ask when I pick it up.
Looks like you were on Watson brand or Activas and the 827 is from a different manufacturer called Zydus pharmaceuticals
You are lucky with no side effects, I wouldn't rock the boat!
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Interesting GYN appt today. I went in for a hysterosonogram to check how things are going with my uterine lining after a year on tamoxifen. After 5 painful minutes of trying to get the catheter tip to the small empty space in my uterus to inject the fluid, she stopped. I had a bigger screen in front of me the whole time. My lining was incredibly thick, so much so, she couldn't get the tip to the open space. Since I'm not showing any signs of bleeding or pain, and this wasn't originally ordered by my dr,( it was just a follow up to my request,) she said I could either do this again with sedation (no thank you!) or wait 6 months and do a regular vaginal ultrasound. I picked the latter. I plan to lay off the tamoxifen for about 6 weeks until I see my surgeon. My surgeon is the one who orders my mammogram and I plan to start it again before that since tamoxifen helps makes my breasts less dense. Then I'll go off of it 2 months before getting the ultrasound.I'm trying to keep a balance of healthy breasts and a healthy uterus. I shouldn't have to choose between the 2!
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SLL, I have been taking Tamoxifen for just under a year and have had pills from at least three different manufacturers. I have not noticed any difference in side effects. My side effects have been manageable even if I do wish my hair would not be thinning so!
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Hi all -- just wanted to update on how things are going for me on 5 mg daily Tamoxifen.
It's not good. I have a long history of multiple chronic illnesses with immune system issues and was super hesitant to even try Tamox. But my new MO offered some good points and info, so I gave it a try. Have been on it since the end of March.
The SEs started within the first 2 weeks or so. Gradually building more and more.
My fatigue is now crushing to the point just taking my dog outside for a short walk is monumental. Dishes sit undone for days, as does the wash, simply because I have no energy and the pain is intense. To the point I cry most days just to move around. I literally feel like I am 90 years old. No offense to anyone who is that age, but at 41 it's made the chronic pain I already before cancer, reach the point where I have had to ask my primary for extra pain meds. Ever since starting it I cannot drink any alchohol, otherwise I feel like I've had 2-3 bottles rather than a small 4 oz glass of white wine. My migraines have gone from being manageable and under control with my prior rx meds, to raging and uncontrollable. Not to mention my depression and anxiety are skyrocketing as well. Sleep is no longer restful but pain-filled and broken, when I am able to actually sleep that is. I also have weird "red circles" on my lower legs which my MO has never seen before (lucky me, but I'm used to being the zebra). They don't itch, hurt, aren't' swollen, or raised, they are smooth like the rest of my skin. They last for a few weeks and disappear, while others appear in other spots and fade out again.
It's made my quality of live nearly unbearable. I feel like I can't do the bare minimum anymore and it takes me to dark places, like back to when I was severely ill in 2015 and had to move home with my folks to take care of me. It's awful.
Acupuncture doesn't help with any of this, even though I've had great results with it helping my Breast LE/Fibrosis and Costochondritis.
Anyway, sorry for the long ramble. I'm just to the point where it doesn't seem feasible to me to continue on with this, even at 5 mg. Which, I am SOOO very thankful my MO started me at that low dose. I can't imagein where I'd be if I'd taken the 20mg.
I saw my MO this week. The plan is to try adding Gabapentin to help with the pain and insomnia. If this doesn't provide relief in the next 2-4 weeks (if I can hold out that long to give it a try) then she said she would suggest swapping out brands of Tamox (as some of you have mentioned has helped with your own SEs). If that doesn't help, the option after that is medically induced ovary shutdown and/or removal. Uggggh.
I just really am not sure if I can make it that long on this at this rate, but I will do my best.
So, has anyone had luck with Gabapentin helping with the bone/joint/spine pain? If so, when did you notice it begin to help? Did it help with other SEs besides pain?
Thanks in advance.
Hugs and healing to all. I am so thankful for this forum.
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Hello all! I haven't been here for awfile but I thought I would update.
I started on 20mg Teva brand tamoxifen last September. Had uterine pain and cramping. Had a Trans vaginal US and all was normal though the lining was high side of normal. Went back on the tamoxifen and the pain went away and everything was great for 5 months. Then, Walgreens gave me Activas? brand and within 3 weeks I was having painful knees, thighs, calves and my sciatica which had been fine for over a year, came back. Next time I was due for refill I called the pharmacist and told her my story and that I wanted Teva. She assured me that they had it. Picked up my scrip and didn't check it before I left. Got home and it was Mylan. So I gave it a try and the pain got worse.
At my MO appointment, we decided I'd go off of it for 4 weeks. Within 2 weeks, my pain was much better and at 3 weeks, I had NO pain. My MO wants me back on it, so I made sure Walgreens has Teva and will pick it up tomorrow. I'm a bit leery though as I'm walking in the Cancer Relay For Life next Friday and the following weekend I'm traveling to see Paul McCartney twice. Don't want to be hurting for any of that!
One thing I like about tamoxifen was that my cholesterol went down 40 points after only 2 months! What I don't like are the intense hot flashes (which are also gone now) and the hair loss. I have very thin hair and it's becoming noticeable. I'm having trouble with my hairstyle looking right.
For those having vaginal dryness... this didn't bother me with tamoxifen, but when I was on AIs it was awful. I found Carlson Key-E Suppositories helped.
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Nancy-- funny you should mention sciatica flaring up again. I have felt a pain pin my hip when I lay on that side. It's been a couple weeks and I thought that it was the joint pain everyone talks about, that maybe it's finally catching up to me. But it seems it's only on that side and last night it was almost a dull pain shooting down my leg, again, only if I laid on that side. Sciatica was my first thought. I'm taking at least a month off T and will see how the pain is. I also just bought Rivitabrow, my brows have thinned so much this past year. I'm going to take pics every 3 months to see if it's working. I know my hairline has gotten tremendously worse in the past year!
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Pamela, I never even thought about my eyebrows. Mine are almost nonexistent. I just thought they were turning grey, but there just aren't many hairs left! Oddly enough though my eyelashes used to be sparse and they're full now. Not sure if that could be due to krill oil or what. I do want to start taking biotin again. My nails grew like crazy.
As far as my sciatica, it's that my piriformis muscle gets inflamed and presses on the sciatic nerve. I get a sharp pain in the middle of my butt, but sometimes also a dull pain in the back of my knee. Seems the tamoxifen really irritated that. The pain woke me at night when I'd roll over. It's gone now. I'm not sure I want to start with that again.
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