Bottle 'o Tamoxifen

According to my information, there is a risk of clots with Tamoxifen. Clots are generally treatable. Nevertheless, when traveling any distance by car, I stop every 1.5 to 2 hours to get out and walk around a bit. I'm investigating compression stockings for an upcoming multi hour plane trip. I do believe in prevention...

rljes, those flashes seem pretty fierce. I am no doctor but sometimes problems with the thyroid can cause crazy temperature fluctuations. It might be worth it to have your thyroid checked. Hub is prone to wild swings in his blood sugar (hypoglycemia) and when he does not eat regularly (more like constantly it drives me INSANE when he wants to stop every project every hour and have something to eat, oh my god, how does he get anything done in a day!?) but as his blood glucose levels rise and fall he has clammy sweats or coldness. Although being cold after being sweaty is a pretty normal reaction since it's how the human body is meant to cool itself. But still, feels horrible. Plus stripping in public is frowned upon, unless you're at Walmart where apparently anything goes.

Veeder, compression stockings help prevent blood clots by supporting the return flow of blood from your legs. A major factor in DVTs is stasis or slowing of the blood flow such as occurs when sitting with your legs hanging down for prolonged periods. One of the reasons airlines (at least some of them) are encouraging leg exercises while sitting in your seat. My doctor recommended medium strength ones and said she wears them when she does surgery.

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.

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.

Twills, thanks! It’s good to know that this will hopefully go away...so distressing

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.

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. 

runor, your post really should come with the same buttons they have for FaceBook posts. I'd wear out that "haha" button.

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.

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

Lezza--are you premenopausal? Any periods?

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?

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.

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!