Bottle o Tamoxifen
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Hey Sara - for the cyst on my ovary my gyn is doing another VUS next month, my last one was in October, he is being very thorough I guess. So glad to hear that the cyst are the problem for the pain and nothing for severe.
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I also developed ovarian cysts on Tamoxifen. And thickened lining and enlarged uterus....My first Gyn said "it's all gotta go! Total abdominal hysterectomy!" but my second opinion (which I get for EVERYTHING!) said "slow your roll. Let's watch and wait and do ultrasounds every 3 or 4 months. And IF you need a hysterectomy I can easily do it laparoscopically. " Needless to say I swapped to him, and he's now my favorite doctor of all of them! He did a completely painless TVUS every few months until one day we realized all my numbers were getting worse. So I had the hysterectomy. Spent one night in the hospital. Went home and took Tylenol for 2 days and then nothing after that. Was walking at least 30 total minutes a day from the get go per his recommendation, and was back at the gym easing into my usual walking/weights/yoga routine at 2 weeks. Easiest surgery and recovery of all of them! And so glad I don't have to worry about that issue any more! Having said that....even with a total hysterectomy you still should get an annual exam. As my Gyn said "you still have a vagina so you should watch for that cancer and removing your ovaries and such doesn't mean you get every single cell so annual checkups are a must!" Bottom line, get frequent checks make sure your doctor is paying attention. I think every woman who takes Tamoxifen should have a baseline TVUS and a baseline bone scan just to be safe before starting the med. (And having said that throw in a baseline eye exam since we all know Tamoxifen can mess with the eyes.)
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SM627: I have had two pelvic ultraounds (plus two uterine biopsies) in the year since starting Tamox, but mine was driven by the fact that I had bleeding. Even though I hadn't finished menopause when I started Tamox and it seemed like I was just having a regular, run of the mill period, my OB-Gyn said that any time a woman on Tamox has bleeding it needs to be investigated, which I appreciate!
VL22 - Thanks for the Vmagic recommendation. I just looked it up and it looks really good (and is also cruelty-free, important to me!). It looks like the "skin cream" is the right one to get (as opposed to their other products).
Lala1 - About your hystectomy. I'm considering staying on Tamox (despite thickening lining, hypervascularity to uterus, ovarian cysts) and potentially just going with a hysterectomy if needed. However, I am worried about how it will affect my sex life and feeling/experience during sex. Did your doc talk to you about that at all? I am going for my 3rd uterine biopsy in a year on the 20th and will talk to my Ob-Gyn but trying to gather info before so I am prepared to discuss with her. Also, why did you not want to switch to an AI as opposed to Tamox? I've also considered switching to AIs but really afraid of osteoporisis and joint pain, however my MO said she could give me another medicine for that. I'm guessing it has side effects too! Ugh, I hate taking medicine.
Ashweb--agree with you 100% about how much more would be available if men had to deal with this crap! Haha. I take Celexa and my MO says it is fine with Tamoxifen.
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PrincessButtercup - I have bladder issues with frequent urination (every 2-3 hours during day, seldom have need after going to bed) and urgency as I get near a bathroom. In my youth, it seemed like I could hold it all day. One of these days I am going to get arrested for crouching behind a bush. I do not associate it with Tamoxifen, since it seemed to start happening before cancer diagnosis or tamoxifen, but maybe Tamoxifen makes it worse? Coffee might play a role, and I sometimes wonder about turmeric. In addition to supplements, I often add it to food. In my late 40's (I'm now 60) I complained about it during an annual (it was not nearly as bad at that time) and an ultrasound indicated some fibroids, the PA suggested age and premenapausal might also play a role, tested for bladder and yeast infection, negative.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil. For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine
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. 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.
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Hi vampeyes,
YES! Last night I slept for 10 hours straight!! First restful and uninterrupted sleep in 4 months! I feel great this morning. I feel more positive and more like my old self again.
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Thanks, BlueGirl- I have noticed the urinary urgency only after starting tamoxifen. Nothing is ever the same after having children, but now I am at the point where I will wet the bed if I don't wake up in the middle of the night first. I'm very careful about not drinking fluids right before bed, but I think it's time to talk to my gyn.
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Just saw my oncologist, so far so good. Asked why they chose Tamoxifen for my pill and she said because I have osteopenia, so that make sense. Tamoxifen is suppose to help with that. She said everything looked good, will probably always have some discoloration where the radiation was, and some numbness where the surgery was. So next month will be the mamo, hope that goes well. I really do hate the fluctuations of side effects from the Tamoxifen though, wake up feeling something different from it.
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MinuteAtATime---I didn't find any change in my sex life from the hysterectomy. However, for me it was already going downhill before the hysterectomy. I was dealing with mild dryness and lack of desire but I feel one was from Tamoxifen and one was from dealing with BC period. The hysterectomy actually made me feel better....both emotionally and physically. I am no longer dealing with cramping or bloating or just feeling crappy. I lost a couple of pounds and generally just feel better. I looked into swapping to an AI and discussed it with my BS who basically oversees all my doctors. He's considered to be the best in the area and pretty much 90% of BC patients go to him. His philosophy was that since I seemed to do pretty well on Tamoxifen why mess with a good thing for what would amount to about a 1-2% reduction in risk of recurrence. Don't get me wrong, I had SEs on T but I dealt with them through turmeric, magnesium, lots of water and regular exercise. He said if I thought the joint pain was bad on T, just wait till I tried an AI! All of this was discussed before my hysterectomy which was at 2 years on T. He pointed out that I could swap anytime but he'd recommend I continue on T for now and see if I could handle it mentally (i.e. not worrying obsessively about recurrence). My MO concurred. So I did and found I could handle the tiny risk. Then I hit my 5 years and we did the BCI test which showed that I got no benefit from continuing T. It also showed that I had a "high" risk for recurrence. I put that in quotes because I was on the very very low end of high risk and that test doesn't have a "medium" risk...it goes from high to low. So once again after much discussion with him and my MO, I quit T understanding that I could resume any time. My MO even sent me home with a refill and gave me a year's RX just for some peace of mind. At first I worried but then one day realized I wasn't worrying any more about not being on it. My docs pointed out that exercising and eating right actually gave me a greater reduction in risk recurrence than being on T. The BCI test showed AT BEST Tamoxifen would give me a 1% reduction and a healthy lifestyle, according to studies, would give my about a 3%. So here I am 9 months after stopping T totally ok with my decision. And totally ok with not having swapped to an AI after my hysterectomy. But all of this pertains to me. It all depends on what you are comfortable with. I was very freaked out about quitting T but my MO suggested I look at it like belonging to AA and just take it one day at a time but to give myself a minimum of 3 months off before going back on. In that 3 months my anxieties lessened as did all those nasty SEs to he was wise to advise me this way. Hope this helps and sorry to ramble!
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Lala: Thanks for that information! The only reason I would consider switching from Tamox to AI's is to avoid a hysterectomy. I feel comfortable with the efficacy of Tamox vs the AIs. My risk is pretty low also per my Oncotype Dx. However my MO had encouraged me to stay on Tamox for 10 years per the newer research that shows it reduces risk to stay on longer. I don't think I will at this rate! I'm only just over 1 year on Tamox. I did have some leg cramps and have experienced joint pain but have managed them with magnesium, exercise.
I'm hoping that, if I decide to stay with Tamox, that I can avoid a total hysterectomy and keep my cervix because I feel it's important in my sex life--have read that nerves in cervix can affect pleasure and that seems to fit with how my body works.
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Found this post a woman did that is on Tamoxifen... kind of made me chuckle at her writing style, but also made me open my eyes as well. Anyway here is the link for anyone who may want to have a see.
https://tougherthantwomurs.com/2017/02/08/the-tamo...
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Anyone alse having cramping on the legs at the moment of standing up after sitting for a while??? If I sit for more than ten minutes the moment I stand up both my legs and knees hurt so bad for about 1 minute, but then After walking a bit the pain gets better....0
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Nas, are you taking magnesium supplements? They help.
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I second the recommendation of taking magnesium. My leg cramps went away since I've been taking it daily.
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pi-xi
- No, Im 7 months into lupron and tamoxifen, and Iput 15 kg in this period, can I get that without prescription???
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Just joining this thread. I'm glad it's here, as I'm trying to make my own decision on whether or not to take the Bottle O' Tamoxifen.
Have a lot of catching up to do but must say, thank you Vampeyes for sharing that blog today. I've added it to my list of people to follow along with. She's right up my alley - snarky, sassy, and smart. Similar to Jenny Lawson (aka "The Bloggess" - one of my fav posts of hers being https://thebloggess.com/2011/06/21/and-thats-why-you-should-learn-to-pick-your-battles/ ) who deals with the world of mental health and so on.
The SEs of Tamox are what I'm so worried about given my own prior to BC complicated health, pain, fatigue, and quality of life perspective. I'll probably be lurking here but thanks to everyone who contributes on this thread, sharing your experiences, the good and the bad.
Wishing everyone the best as a new week starts.
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Yes, you can! There are some forms that are better for absorption than others. Maybe someone will chime in. I know that magnesium oxide has poor absorption.
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Spoonie - Jenny Lawson - have you ever listened to her books? LMFAO she cracks me up, I bought all she has released, but listening to her is so much funnier, especially the sh!t she does to her husband. As for Tamoxifen there are, believe it or not, women who don't have side effects or at least the ones they get are manageable, you won't find them posting here. I would suggest trying it and seeing how your own body reacts and remember there are different brands available to try. For me the one I am on I have (touch wood) no hot flashes, but I have joint pain and fatigue, heck any problems I have I just blame good o' Tamoxifen! haha
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I take a magnesium complex citrate blend. It has both oxide and citrate, I take 2 capsules before bed, no leg, foot cramps and even no constipation. I have tried oxide and citrate each one alone, this combo works for me.
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Hi everyone,
I used to take magnesium citrate 250 mg, and discovered on this board that it was constipating. I never had that problem before tamoxifen. I switched to magnesium glycinate (also a recommendation from this board), and problem solved. I take between 240 and 400mg, depending on which has the best prices from Amazon., and how many I want to take. I take it in the evening
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I follow this thread (when I have an opportunity ) and I have very few SE from Tamoxifen. Anything out if the norm gets blamed on Tamoxifen! I have an occasional foot cramp, am very forgetful and have the ridiculous "Omg I have to pee now!" That others have mentioned. Oh yeah, constipation. If I talk about what I'm thinking are SE from Tamoxifen of course I'm told no....I'm not the first in to say that either! My eyes were super sensitive to the sun this summer to the point that my eyes hurt. Now that it's not as bright out my eyes are more "my norm".
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Today I visited my MO, after complaining about my joints pain and cramping in my legs she said it could be inflammation, I ask if the pain does anything with tamoxifen, she smiled and said noooooooo, tamoxifen does nothing with joint pain, so why the hell me at age of 39 walking like 90 year old???? It’s just frustrating .. I believe they dont want us to quit taking tamoxifen that’s why they don’t tell us the tr
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Nas -- > I agree. I don't think they want to tell us the truth unless they are confronted with it. Here is a list, composed on the Mayo Clinic site of known Tamoxifen side effects. Joint pain and stiffness is CLEARLY there. You're not imagining it.
I haven't started my Tamo yet, but that is because I am so very concerned about my QOL due to already being under severe amounts of pain, fatigue, joint swelling, heart issues, and more. I feel for you and all of the others who are on it but are worried and suffering. Wishing you some relief and understanding from your care team.
I'll probably be joining you all in the journey in a couple of weeks or so.
Tamoxifen (Oral Route)
https://www.mayoclinic.org/drugs-supplements/tamoxifen-oral-route/side-effects/drg-20066208
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Thanks hun for the link❤️❤️❤️Just their ignorance sometimes is so frustrating ......
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Nas - 100% joint pain can be caused by tamoxifen! Mine started in feet and moved up to hips. MO put me on a 3 week break - around day 10 is when I really started to feel better.
All an MO is doing when he/she denies SEs is make women suffer or secretly stop taking the medication.
It makes me very angry
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Nas - I was at the RO today and she said the same thing, "I've never heard of tamoxifen causing joint pain." I am pretty sure it's on the SE page for Tamoxifen!
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When I first started taking Tamoxifen I had a tingling sensation on my face and scalp. I’d wake up in the morning and I would be numb around my eyes and sometimes my mouth and temple area. It was terrifying. I thought I had brain mets. My MO was like “nope - not an SE”. But also not brain mets. WTF??
I just happened to have a follow up with my RO at this time. Her student doctor or whatever they’re called asked me about tamoxifen- I told him about the numbness etc and he said it’s absolutely the tamoxifen. I stopped taking it for a month and all those sensations went away. Thankfully, those SEs didn’t cone back when I started up again, but now it’s the joint pain
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Nas, each time I have seen the MO, I’m asked if I have joint pain, which fortunately, I do not. He is definitely not an SE denier! I think his willingness to acknowledge what I go through helps me tocarry on with the tamoxifen.
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pi-xi glad you don’t have any SE, it’s doable bu as VL 22 says it makes you think ok so if it’s not tamoxifen what is it?? a met??? They really need tothink about our emotional suffering as well
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So true, Nas!
To be clear, I have many side effects. Just not that one.
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Has anyone noticed a change in side effects with a refill?
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