"Tamoxifen Road" - Support and Encouragement
Comments
-
Dani I swear by my visits to the acupuncturist for hot flashes. I have to go every three weeks. I will also add that I did a vitamin B12 shot a few weeks ago and I am sold on the fact that it can give you better energy. My gyno offers them for less than $30. I think I will be adding that into the mix maybe every two months now.
I felt like I got to a toxic level of the tamoxifen about two years in - looks like we are about the same timing. That switch to twice a day at 10 mg each has definitely helped me.
0 -
Rah, thank you for the information. My breast surgeon had mentioned that she prescribed acupuncture for hot flashes. I am going to ask th NP when she calls. Also did you have to get any levels checked before starting the shots? Are they more effective than an oral supplement? Thank you in advance for answering my questions. I literally don’t know what I would do without this community 💙.
0 -
hello all, wondering when you all started on Tamoxifen in the course of your disease/treatment? Thanks
0 -
I started Tamoxifen one month after finishing radiation treatment. My doctor said to take some time to regain my energy, and then start the medication.
0 -
I started Tamoxifen 4 months after my last TCHP treatment and a month after my double mastectomy. I also started Kadcyla the same day as Tamoxifen
0 -
I started post radiation and full hysterectomy following a pelvic ultrasound that showed a thickened uterine lining.
0 -
I started Tamoxifen 3 months after finishing radiation. Took a vacation first.
0 -
Dani I had recently had bloodwork that included B12 levels so I knew i was mid-low for that particular vitamin. I don't know if protocol would require blood level testing each time that is why I am thinking of spacing out every two months or so. I do feel that the boost from the shot was much more effective than an oral pill.
Hope you get the acupuncture and that it helps you as much as it does me. Don't be surprised if you take a nice nap the first time, it can be that relaxing. My acupuncturist is a BC survivor herself so she completely gets it and she is very good,
0 -
Hi, your post is very interesting. I’ve just had a bilateral mastectomy - chemo and radiotherapy have not been recommended (happy about that !) but I’m likely to go onto tamoxifen. I’ve never really taken any pills in my lifetime so I would like to learn as much as possible about this drug. It’s seems crazy that there is little historical data...
0 -
Colholly hope you are recovering quickly from your procedure. Quite a few women tolerate Tamoxifen very well, I sincerely hope you are one of them. I believe I began the medication four weeks after my surgery. One of the things I have seen women do is to ramp up to dosing levels (so start out at 5 or 10 mg then move up to 20) so that is something to discuss with your MO. Mine just prescribed 20 mg from the get go.
0 -
Hi Everyone:
Hope you are well. I am new to this topic. It has been a hectic 3 months with diagnosis and surgery. I finished radiation last week. Saw my MO today. Based on my research through this wonderful site, I convinced him to start with a lower dose to build a gradual tolerance and hopefully control side effects. He agreed to 10 mg daily (starting 11/12...I told him I need a break post radiation) for a few weeks and then a check in. Of course, he eventually wants me on 20 mg daily but if I am miserable he is willing to be flexible. I have read that a lot of women take 10 mg in the morning and 10 mg in the evening and it is more tolerable than taking 20 mg all at once.
My Mom has taken Tamoxifen 2x in her life (1997 and 2019) and now has a fatty liver and in July had a DVT/PE. He is running blood work (Prothrombin 20210A, Factor 5 Leiden, MTHFR) to check the clotting factor to be safe. I have been taking a baby aspirin for 3 years but am worried about Tamoxifen and clots. MO said if I have an issue, he would prescribe Eloquis to prevent clots. MO is recommending Tamoxifen for 5 years and f by then I am in menopause he has recommended 5 more years of Femara. Has anyone else gone this route? He also said that depending on my estrogen levels he may want to also give me ovarian suppression shots. It is definitely a lot of information. Any tips to handle the impending side effects?
Be well.
Ginamarie
0 -
Ginamarie, re SEs, drink plenty of water as Tamoxifen can be dehydrating. Staying hydrated helps with many of the potential SEs.
0 -
New to the site. I like to be independent and do not like to ask for help. Well here goes nothing on my 1 st post. I was diagnoses in 8/2018 with IDC right breast ER+, PR+ and HER2- . Then lumpectomy, radiation and tamoxifen was the game plan. age 42 premenopausal. I felt terrible on Tamoxifen and went back and forth with my onc risks/benefits. rate of re-occurrence statistics and so on. It was always my intention to take it and and on couple of occasions restarted. started at a lower dose and was still not able to get around the mood swings, irritability and insomnia. Fast forward to July 2020 routine mammo left showed a new density, after a negative MRI 1/2020. Biopsy positive for IDC in the left. ER+, PR+ and HER2- again. A 2nd primary diagnosis under age 45. Radiation and tamoxifen. I'm so very fortunate and grateful for my diagnosis again being not aggressive and low oncotype, no nodes involved. I restarted Tamoxifen as its limited choices because I've not been through menopause. So once again I started the Tamoxifen and was good for about a week(insomnia was immediate) and then the emotional rollercoaster, irritability and fatigue. I made it one month. I do not feel like myself on it and I do not want to add psych meds to deal with side effects. has anyone else gone through this? My options are ovary removal, monthly injectiions to shut down ovarian function or monitor closely. My PCP and radiation Onc are leaning opherectomy. I know regardless i will have menopause symptoms. just hoping i could get some info on what others have done when tamoxifen is not tolerated..Thanks
0 -
Hi Cheetos, and welcome to Breastcancer.org,
We're so sorry for the reasons that bring you here, but we're really glad you've found us. You're sure to find our Community an amazing source of information, advice, encouragement, and support -- we're all here for you!
You're sure to get some great responses here. However, you may also want to share your story on the Bottle o' Tamoxifen thread or by starting your own thread here in the Hormonal Therapy forum, asking for experiences and suggestions.
We hope this helps. Please let us know if we can do anything to help!
--The Mods
0 -
Cheetos what is your dosage? I have and you may find others have reduced their dosage with the blessing or consent of their MO. Some of us without. For the last year or so I have been taking 1/2 of a 20mg tab every other day. So 5 mg. My hair loss stopped within a couple of months, I still get muscle spasms, my sleep is affected by my work, and I’m still dehydrated, but I’m much happier than I was. As we all found out there are no ‘low dose’ trials and very few studies so it is very much what we can tolerate vs what was our risk. I am due to end this ride in January and I’ve not been happier for anything else in my time on the planet....except my kids of course.
0 -
I know everyone is different, but here is what worked for me. I ramped up my dosage (just didn’t tell my oncologist). I went from 5 to 10 to 15, etc. I moved up after a week or two. I figured some protection was better than none. In the beginning I got major hot flashes, spasms and dizziness. I feel like I’m finally adjusting. I used to take all my medication mid morning, but now I take it with dinner. Taking it with food and later has helped tremendously. I sometimes have insomnia, but I feel much better during the day. Also, I was prescribed Effexor XR. I was having some depression and anxiety and it just happens it is also used for hot flashes. I now have almost no hot flashes. It’s been a game changer. I agree drinking lots of water is important (and maybe occasional wine), and exercise helps a lot. This is what has worked for me
0 -
Hi all - just checking in, hello to the regulars and welcome to the new ladies! RE: lower doses of tamoxifen - I’m on 10mg, OK’d by my oncologist, and there are some studies showing lower doses are just as effective but they are much newer and not as broad right now.
https://www.webmd.com/breast-cancer/news/20181206/lower-dose-tamoxifen-works-as-well-as-high-dose
https://academic.oup.com/jnci/article/95/11/766/2520250
I am premenopausal and still get that time of month regularly. I do not get hot flashes or joint pain or aches and pains, but I do find it impossible to lose weight on tamoxifen and even gained weight. And I broke my toe when I never had a broken bone ever! Tamoxifen is supposed to help with bone density if you’re post-menopausal but it has a negative effect on bone density if you’re pre-menopausal. Still, I continue to take it but winder if I should stop...
Dani - try Rah’s suggestion re: acupuncture and/or an exercise you really enjoy as that helps increase endorphins and a positive mood? For me, I like to go swimming.
Someone here asked when we started - I had my surgery in September, radiation in October, gave myself about a month or two for my body to recover, and started tamoxifen in January 2019.
I’ve heard magnesium helps for joint pain and I do take baths with magnesium salt and take magnesium vitamins among others. When I don’t have a broken toe I swim so maybe that’s why I haven’t had joint pain too, who knows.
Anyways hope everyone is well and wishing you all a smooth and hopefully stress-free New Year! Here is Finley giving 2020 the boot LOL...
And Domino just being cute.
0 -
I really need some help here. I feel like there must be something wrong with me. I finished radiation in July and started lupron shots and letrozole in august. I was having a lot of joint pain and chalked it up to everything my body had been through in this past year. Visited a gynecologist and decided to go forward with a complete hysterectomy. I stopped the letrozole for a week before and a week after the hysterectomy. I felt amazing after surgery. Literally the best I’d felt in years. Started the letrozole again, and bam, felt horrible again. Visited the oncologist in December and he suggested I try tamoxifen. So I started that January 1st. It’s only been 9 days and I’m already experiencing problems that I can’t tolerate. I’m normally a very strong person and I can normally tolerate a lot of pain. I’m having severe joint pain in my ankles, knees, wrists, hands, fingers, elbows, and neck. I have researched and this doesn’t seem normal. I can handle the hot flashes and moodiness, but I have to work. I can’t function like this. Can anyone relate? I feel like a total failure.
0 -
dots, you’re not a failure. The musculoskeletal system is filled with estrogen receptors which is why muscle and joint aches and pains are common occurrences on hormone blocking drugs. There are other drugs left to try. Hopefully you can find one that you can tolerate. Also ask your center for whatever pain management they can offer you—acupuncture, medical massage, certain types of drugs such as celexa, etc. you’re not alone.
0 -
BCat40 thank you for your encouraging words. I’m afraid my MO is going to think I’m crazy. I couldn’t move yesterday without excruciating pain. I’m still having pain today, but not as bad as yesterday. I can’t go to work like I was yesterday. I don’t have the ability to take more time off to try and get myself used to the medication. And I worry that I’m not protecting myself. Others have had this type of reaction to both ai’s and tamoxifen
0 -
Dots, I started on 20mg of Tamoxifen a year ago. With the SEs I got from it, I wouldn't have been able to function at work. Instead of switching to another med, my MO recommended to take a lower dose, wich I did. It's been a year since and I am doing ok. I still get SEs, but manageable. In my case, I was perimenopausal and the tumor I had was of a lower grade. I am not suggesting you do the same without checking with your doc first. I also know that some would start with a lower dose and gradually increase to 20 mg. Yet some others take 10 mg at two different times a day. It is worth exploring these possibilities. With tamoxifen, while SEs don't disapear completely, they do subside some once the body adjusts to it. I can relate to not being able to function while on it, so I hope you will find a solution.
0 -
Thank you Rain88. I have emailed my oncologist today. Hopefully I’ll get a response tomorrow. I want so badly to be able to take this.
0 -
Hi dots,
Taking a lower dose (temporarily or ongoing) may help. Some women find that one particular generic is terrible for them while another is like a sugar pill, so that may help also. None of those ended up working for me but I was able to talk my doctor into toremifene, which is going well for me!
I am very very curious about your experience with the liquid tamoxifen though. If toremifene hadn't worked for me, my plan was to ask for that next. Both on the basis that it might be different enough chemically from the solid to not impact me the same way, and that you can get a much smaller dose of it (down to 3mg), so I could try to really start small.
How come you were prescribed the liquid from the start?
0 -
salamandra I was on the 20 mg tablet. I never took the liquid. What is toremifene
0 -
Hi dots74,
Your signature says "liquid tamoxifen (soltamox)" under "Hormonal Therapy", that's why I asked.
Toremifene/Fareston is another SERM, same family as tamoxifen. There are retrospective studies showing it is not inferior to tamoxifen for preventing recurrence of breast cancer, but it is not currently FDA approved in the US for that purpose for premenopausal women, and is mainly used for women with stage 4. But it is more widely used in Asia because the genetic variation that inhibits tamoxifen absorption is more common.
0 -
salamandra thanks for the heads up. I just changed it. If it’s not approved, what does that mean? Can I still get it? I’m willing to fight the insurance for it. I’ve been fighting them for a year over everything anyway.
0 -
It means your doctor may be more reluctant to prescribe it (I went back and forth with my doctor for a bit and she agreed after she consulted with some more veteran doctors) and insurance may be more reluctant to pay. After my doctor agreed to prescribe, she said she'd also fight with insurance if necessary. It turned out not to be necessary, thankfully, but just in case I had also looked up that there was some drug assistance program that would have brought the cost down a lot. (Even the generic is super expensive, it turned out).
0 -
Anybosy else experience vertigo or balance issues as an SE? I've noticed when climbing on playground equipment with my daughter I get very light headed and unsteady on my feet.
0 -
32B, when I first started taking Tamoxifen, I did get lightheaded at times. This did pass, however, I do feel like my balance is still off, after 10 months of taking this medication. As others have said, staying really hydrated is very important and seems to help lessen some of these side effects.
0 -
32B - could definitely be hydration related. They say to drink half your body weight in ounces a day. Tough to do. I try and have at least 8 ounces of some type of electrolyte drink daily as part of that total. I use nuun tablets dissolved in the water. More economical than gatorade.
0
