Bottle 'o Tamoxifen

Nancy618

Lala, thank you for the info. I KNOW I need to get back to yoga. The Tuesday class especially is gentle stretching. However, lately the instructor has been doing way more meditation and reading than I like.

I am happy to report that after 7 days on the new brand of tamoxifen, the aches and pains in my thighs, knees and left hip are gone! I still have some in my right but I've had that for quite some time. The sciatica is very minimal. I have been able to move better. And my attitude and emotions are much improved.

So don't let anyone tell me that there is no difference between manufactures!

---

Beaverntx

Great news, Nancy. It is so very good when things work!

rljes

I wish I had the energy to go to a yoga class.  Its a catch 22 (like Nancy said)  Too tired to get up to take yoga, but I'd feel better if I did.  Today I was cross eyed so tired driving to get my port flushed.  So tired I locked keys in my car.  Its a danger for me to drive I'm so tired. and again, I'm only taking 5mg. I can't imagine going any hire. I'd never get out of bed. 

sm627

Hi Everyone,

Wanted to check in and see how you all are doing?

I want to thank you all for your input about questions to ask my MO. I saw her last week. The good news is she spent 30 minutes with me answering all my questions and she did a great breast exam. She gave me a clean bill of boob health and ordered my 3D mammogram for May. The only thing that disappointed me was I felt like she didn't take my concern about my very heavy periods seriously. She said it was not caused by Tamoxifen and that it was just a part of getting older. She told me to talk to my GYN. I wish I could meet with my MO and GYN together that way I could get both their inputs on how to make my side effects better in one visit.

I still think Tamoxifen is the reason why I am having all these changes going on all of a sudden.If everything starts to go down hill in your 30s that sucks!

Does anyone else sometimes feel that Dr don't take your concerns about changes in your body seriously?

Thank you all for listening it helps to vent.

Hugs to all and I hope you all have a good week.

Lezza13

LomLin and Beaverntx - I have done physical therapy for both hips n the past. Now I do acupuncture for my trocanter bursitis and really recommend giving it a try. It seems to help and lasts for months. I even got a groupon for it. Hope this info helps.

sm627 I have to agree with you that mds do not take changes in your body seriously. My onc says sure I have hot flashes and minor joint pain with Tami but I still have to take it. I am going to ask her about splitting the dose. After almost 7 years on it I did not think I could. Now I know. Glad you are getting that 3D mammogram. Perhaps you need to see a gyn. for your heavy periods.

Beaverntx

Lezza, Thank you for your suggestion, I'll keep it in mind as a potential next step. Right now I'm working on retraining my hip muscles to do their jobs the way they are supposed to do. It has only been two weeks and I am seeing progress so I am hopeful! In the meantime I'll look into who does acupuncture in my area so I'll be prepared.😊

Nancy618

I may have been premature with my celebration on the new manufacturer. I've had a couple of bad days and last night I was in pain much of the night until I got up and took naproxen.

However, I was busy today and it entailed lots of walking... Well lots for me. More than twice my usual daily Fitbit steps. And my hips and legs feel good tonight. Got up out of the chair tonight after watching The Voice without grunting or groaning and walked without pain or limping.

I do think it's important to stay active and to move even when you don't feel like it. I'm going to yoga tomorrow!

MinuteAtATime

sm627 - I am much older than you (53) but had not completed menopause before going on Tamoxofen. Every time I have a period or bleed, my OB-Gyn wants to do a pelvic exam to test for uterine cancer because I am on Tamoxofen. (Thankfully, I haven't had one in about six months. ) Have you talked with your Ob-Gyn about your heavy periods? Can you suggest to your Ob-Gyn that she talk to your MO about it?

I agree, docs should conference more with each other about these things. I honesly think a lot of times they don't know the answers, so they punt.

My biggest problem with Tamoxofen is vaginal atrophy resulting in painful sex. An older woman I spoke with said that her UCSF docs put her on the Estrogen Ring vaginally while she was on Tamoxofen to prevent vaginal atrophy. She looked at the packaage and it said "don't use if you have had breast cancer" but her docs told her it was OK, she should do it anyway. Generally about sex they said "use it or lose it" to her. Meanwhile, my docs won't help me with my vaginal atrophy and my husband and I haven't had sex in forever b/c it hurts me too much.

Is anyone else here using the Estrogen Ring or other vaginal estrogen? I've tried V-Magic and it helps a bit but doesn't resolve it. Would love to hear how others have dealt with it.

Beaverntx

Looking for suggestions about what folks do to protect your scalp with Tamoxifen thinning hair. With sunny days ahead I will need to do something, especially at the crown. Not enough loss at this point to get a buzz cut but definitely have a "glow" up there! Thanks for any ideas!

Rah2464

Beaverntx I have the same issue! Yesterday I wore a hoodie to do yard work, but it was breezy and not completely warm. That isn't going to work much longer when it gets hotter. I am going to speak with my hair stylist and see if she has any suggestions beyond a hat.

Beaverntx

Rah, I'm interested in hearing what your stylist says. My hair is very fine. I tried piling it on top of my head only to discover that doing that displays how thin it has become on the sides. I really don't want a wig and prefer not to wear hats but am going to have to do something!

Lezza13

MiniuteAtAt I like you are in menopause. I find that over the counter lubrication seem to help with that issue. I have to use lubrication every time my husband and I have sex. Also over the counter Replens is supposed to last for days to add extra moisture. I am too cautious about using anything with estrogen. Maybe others have. Best of luck

rljes

Hi Everyone - I ;just started Tamoxifen (5mg) and I have to renew my Drivers License including taking a NEW photo - so I guess I had better get it over with before my hair starts thinning! 

Spoonie77

Has anyone noticed a drastic decrease in alcohol tolerance since starting Tamoxifen?

I'm on 5mg daily in the AM and had no issues, whatsoever, with a small glass of red wine prior to starting this drug in March.

Now, after about 3 weeks, I can't tolerate any alcohol at all apparently. @ithin 30 mins or so of the wine, I was nauseous, throwing up, flushed, dizzy, and just feeling awful in general. Like I would the morning/day after a party with friends when I was 20 years younger, not after a tiny glass of wine.

What gives? Makes me worry about my liver or kidneys.

Has anyone else experienced this?

My MO is not concerned by this and just told me to avoid alcohol now.

I'm a wine gal, I like a glass every once in awhile. I'm depressed if this is for 5 or 10 years. Le Sigh.

Anx789

Hi, just checking in. I'm 4 weeks post final chemo, no radiation. I'm starting 20 mg Tamoxifen today. I'm planning to take it at night before bedtime. My Onco only told me the possible side effects, didn't recommend any supplements to take. I kind of scared to start Tamoxifen because still have muscle soreness ( leg & arm) due to chemo.

Beaverntx

Spoonie, I am a wine gal too and have noticed a decrease in my tolerance -- not as severe as yours. I have a bit less per glass than I used to, only have a glass when I will be staying at home (just in case of a greater reaction) and no more than 2 or 3 a week. I've also noticed my palate has changed and I am more sensitive to tannins. Bummer!

TrmTab

Spoonie, are you staying at 5mg dose or are starting at 5 and building up?

I am supposed to start next month and have been reading up on lower doses and trying to build the case for my MO.

I too am a wine girl...that would be horrible. TT

Spoonie77

Beaverntx -> Thx for sharing. Glad I'm not alone in a change. I think I'm going to try to see if whites or maybe beer I can tolerate. I just can't fathom going 5 years or more without any alcohol, even for celebrations. Fingers crossed it won't be as severe.

TrmTab -> I am planning on staying on 5 or 10mg. I have a ton of chronic illnesses/immune system issues and the Tamoxifen concerns at 20 mgs for me are too much. (I have a thread on these "Any other Early 40's declining hormone treatment?") My MO is fine with 5 or 10. She gave me a few studies that show there is no proof one way or the other that 20 mgs is needed. Give this study to your MO and see what they think .

"Randomized Placebo Controlled Trial of Low Dose Tamoxifen" https://ascopubs.org/doi/full/10.1200/JCO.18.01779

Conclusion: "Tamoxifen at 5 mg/d for 3 years can halve the recurrence of breast intraepithelial neoplasia with a limited toxicity, which provides a new treatment option in these disorders."

Discussion from San Antonio Conference: Tamoxifen at 5 mg halves recurrence of breast intraepithelial neoplasia

also there is a study under way....hope more evidence of lower dose acceptability will be in the near future.

STUDY in Phase 3: Trial of Low Dose Tamoxifen in Women With Breast Intraepithelial Neoplasia (TAM-01)

rljes

Hi All 

Spoonie. thanks for the links, I will take a look.  My MO didn't even want me to start out at 10mg - I am still on 5mg. Will increase to 10mg or even 7.5 after 1 month. I am on my own for dosage.   I too have auto-Immune diseases that complicate things. So I'm not sure if its the Tamoxifen or my Dermatomyositis, scleraderma or Raynaulds.  There used to be a link - about cancer and auto immune diseases - but it phased out. 

Question:  Will the HOT Flashes ever ease up?  Hot Flash/ Strip/ Freeze : Repeat. 

BlueGirlRedState

Has any one experienced "episodes" with Tamoxifen? By episodes, I mean, everything for the most part seems to be ok, then suddenly problems with no changes in diet, exercise, etc. I recently went through about 2-3 weeks of difficult sleeping, waking up and not getting back to sleep - feeling anxious/tense. I blamed it on a change in the generic I was taking for BP, because the problems happened immediately with that. My BP also went up 10-25 pts (still in range acceptable with my primary). Sometimes the BP gets back to where it was (115/65). The BP generic I was taking has not been available for months according to the pharmacist, so another generic was substituted. My primary suggested taking the brand name for BP. I have not done that, yet, costs. The generic was $5/90 days, the brand name would be about $600/90 days. I quit tamoxifen for a week now, and have been sleeping fine. The only problem I've noticed with tamoxifen are leg cramps, usually left calf, sometimes right, sometimes both. Thinking about taking the tamoxifen again and see if sleep problems return. Will think about getting a 30-day brand name for BP, but don't think I can afford it on a regular basis. Is there any way to find out about the status/availability of generics? I quit AIs because of SEs. After several months of not taking anything, I aksed my oncologist about tamoxifen, and she wrote an Rx for it. Some asked about hair thinning/tamoxifen. I do not know if the biotin helps with that or not, but it definitely makes my finger nails grow faster/stronger. magneium and maybe portassium seems to help with the leg cramps.

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. 2/2019, trigger finger and stiffness much better.

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

rljes

BlueGirlRed,

I am experiencing just the opposite re: sleep.  Tamoxifen is like a sleeping pill for me.  I no longer have to take Ambien to sleep. I am so tired throughout the day I cannot keep my eyes open.  I stopped taking Tamoxifen as of yesterday. (after almost a month) I feel I am too sleepy to drive safely. 

Since taking Tamoxifen, my BP has dropped down to its normal 110/60.  During chemo, (and Herceptin) my BP was around 140/? - high for me.   I will start taking Tamoxifen again, since my Cancer was 98% Hormone driven.  

As I keep saying,  How strange each person reacts to diff medications.  Hope you get the BP meds you need - I have a friend telling me the same thing about diff manufactures being discontinued.  Take care!

Lezza13

Spoonie77. Thanks for the link. I have been on Tamoxifen for 6 years. I would love to take half the dose if I can. I will ask my onc next time I see her. I am tired of the hot flashes and the joint stiffness. I wondered if it was Tami causing my intolerance to wine. Now I know. I still enjoy a glass once in a while, I just notice it makes me very tired and more light headed.

riles. I agree it makes you more tired during the day. I seem to sleep fine too even thought I take it in the morning. Like everyone is saying. Everyone reacts differently. I would try Tamoxifen on whatever dose you feel comfortable with or what was suggested.

TrmTab

Is there now a 5mg pill? or are you cutting a 10mg in half??? I have my MO appt May 1st...trying to get all my research done! TT

WC3

My hot flashes are getting worse. I'm not sure how much of that is the Tamoxifen and how much of that is whatever life my ovaries had left in them dying. Ihad the worst one so far during a scan and I couldn't do anything about it

Lezza13

WC3 I totally understand. I think it is a combination of menopause and Tamoxifen. There is this study out that Magnesium Glutinate 400 mg could be effective for hot flashes. Some women try efflexor but I don't like anti depressants. There is also black cohosh you could try naturally for a while. Up to you. I am trying the Magnesium for this summer and see how it goes. Best of luck with those hot flashes

rljes

Hi everyone - As far as I know Tamoxifen comes in 10mg and 20mg.  I just cut in half or quarters.  (again - against my MO's wishes- Its MY decision.)   I had Horrible Hot Flashes ever since I stopped taking Estrace Pills (had a hysterectomy 30 years ago) when I was DX - they told me to stop my Hormone Pills. (almost 2 years prior to Tamoifen)  Instant Hot flashes.  The Tamoxifen hasn't made them worse.  They cant get any worse than they are now.  I have stopped taking Tamoxifen (because of the severe fatigue - My MO doesn't know it yet) and the hot flashes have not eased up.  Its been a month. 

I also started taking Magnesium 500mg - for about 2 months now.  Not helping. But, as we all know - Everyone reacts differently to all medications.  

Pamela23

I do the same thing, I cut mine in half and only take 10mg. I used to work as a clinical research coordinator who administered drugs in the clinical trial stages, that were pending FDA approval. We were taught NOT to cut pills in half because there's no telling how much of the active ingredient is on 1 side opposed to the other. You may be getting 16mg tamoxifen in one half and the next day only getting 4. That said, I'm getting 20 in two days and the half life is 5 days so I feel OK with my decision. I have also added 2 TBS flaxseed in my smoothie (https://www.goldenvalleyflax.com/flax-facts/health...) and recently started taking melatonin at night (https://www.elsevier.com/about/press-releases/rese...)

MinuteataTime--I'm also on a vaginal estrogen cream that I insert twice a week. It's a VERY low dose, I think it's .01% but it's taken the pain away and I have my own lubrication. The American College of Obstetricians and Gynecologists' Committee approved this for breast cancer survivors in March 2016. My GYN gave me this article to show my MO and she said as long as my GYN was following me, she was fine with it. It's made a HUGE difference. NO pain, but that said, no pleasure either. But I think I got some nerve damage in my clitoral area from chemo unless it's a menopause thing. I was thrown into chemopause 2.5 years ago. Here's the article https://www.acog.org/Clinical-Guidance-and-Publica...

rljes

My pharmacist told me about the cutting pills in halves - not knowing the dosage, that's why I asked my MO to give me 10mg - but he chose not to. So I had no choice.  Its taken a good 10 days to get the Tamoxifen out of my system to not feel the extreme fatigue so I can drive - I;m running out of food!  I plan to get all my running around done, stock up on food, then start back on Tamoxifen, and see how the fatigue goes the second time around. 

2FUN

Can anyone speak to the side effects of stroke and blood clots on Tamoxifen? I am thinking of switching from AI's to Tamoxifen and I am trying ot gather data. I am a bit frustrated that MO said "its up to you" just tell me what you wan to do.

Also, has anyone had improvement in bone density when taking Tamoxifen?

runor

I'm having a hard time with the idea that if you cut a pill in half you might not be getting half the dose. If that is true, then a whole pill is just as likely to be the WRONG dosage. Think about it. If you cut a pill in half you might only get one tenth of its potency, but the whole pill is totally guaranteed to be the exact dosage it says on the box. THIS MAKES NO SENSE!! If manufacturing standards were that lousy you'd think these drug companies would have gone up in flames a long time ago.

I'm not doubting that someone might have told you (the posters who have said this happened to them) that half a pill isn't half a pill - but on what was this advice, this warning, based? Has anyone tested this theory out? People say all sorts of stuff based on all sorts of wrong information for all sorts of reasons. I think this is faulty logic. If you break a chocolate bar in half you get half a chocolate bar. Do drug companies not yet have the same manufacturing techniques as candy companies? I need to look into this. (not sure how!)