Bottle 'o Tamoxifen

Mymomsgirl

Everything I had a similar situation, a few more days between cycles, very short and mostly brown like old blood. My doctor said the same thing about if I bleed between cycles, call right away. As for menopause, it can push it along. I've been 3 months without now, we will see how it goes. Good luck!

everythingwillbefine

mymomsgirl,

Thank you for the reply. So I know I am not the only one..

Good luck with both of us on this tamoxifen road!

I have asked the doctor if I should increase to 20mg and I have not heard from her yet.

TrmTab

With DCIS I was told 10 was sufficient. It seems to work and SEs are minor...TT

Mymomsgirl

Everything I actually take 10 in AM & PM, it has worked out fairly well. When I tried 20 at once my side effects were awful.

everythingwillbefine

Thanks trmtab.

I hope the 10mg is sufficient too.

mymomsgirl,

So far I did not experience side effect. I was hoping to get hot flash so I know the medicine is working!

MeToo14

I was on OS+AI for 5 years. I had my last shot in may and in August I started tamoxifen. I've been fine and really have had the same side effects. But Monday I got my period for the first time in 6 years. It's very different. It's light and I don't really have any other kind of period symptoms. I'm now wondering if it's not my period but irregular bleeding. Has anyone else experienced this? Bleeding is a side effect of tamoxifen. I can't get into see my doctor for a while.

everythingwillbefine

MeToo14,

I would call your doctor and ask. OB or Primary doctor.

MeToo14

Thank you for your reply everythingwillbefine, I have already contacted my doctors and I can't get into see either of them for 2 months. I was just hoping maybe someone else might have experienced this.

BlueGirlRedState

MeeToo14 - call your DRs again and explain the situation. With my first bc in 2009, I was already in menopause and the oncologist Rx'd Tamoxifen rather than AI because he had more confidence in it. I was told to contact him immediately if there was any bleeding beacuse it coud be an indication of more/other problems. Covid is making everything more complicated, but it is important that you see someone. Is Telemed an option as a first step?

MeToo14

Thank you bluegirlredstate, I did explain. My appointment is January 29. They said if it's bad to go to the emergency room. I'm not too happy. Hopefully everything is normal and it's just my cycle starting up again. Thank you!

runor

Everything, I was diagnosed at 53. I was having regular horrendous periods with no symptoms that I was approaching menopause. I had my period in July 2017, started tamox a week or so later and that was the LAST period I had. Not even a whiff, hint, trace or rumour of a period. They quit, cold turkey. I asked doc if tamox would affect my periods and he said it might a little bit. He did not tell me they would stop dead in their tracks. But they did. Earlier this year I went off tamox for maybe 7 - 10 days and shortly after starting up again, I had what I'd call breakthrough bleeding. I was MORTIFIED that my periods might be coming back! Oh hell no! I would have called doc in a panic over this, because random bleeding after years of no bleeding definitely warrants checking out. But since I had been on and off again with the tamox, I pretty much figured that was the cause. So can tamox mess with your periods? In my experience, yes.

(I apologize to all the regular posters here who have heard this particular story 100 times already. But this question of tamox and periods does come up now and then.)

everythingwillbefine

runor,

Thank you so much for sharing your story with me! Hmm I will keep an eye on. Don’t know what I can do though. Hopefully it won’t mess up my uterus and ovaries.

MeToo14

Thank you runor for your story, I think it's ok but it just threw my a bit. I have an appointment to see my doctor on January 29.

Trishavip

I started Tamoxifen about one month ago. I take 20mg at night before I go to bed. First week I had pretty severe headaches and some joint pain. There was also nausea but I manage that with little snacks. I think I have adapted fairly well now. Some sleeping issues but that is not unusual for me. I know there are a lot of posts about how horrible this medicine is so I thought I would share my prospective too. I am 47 years old and when the doctor took my blood tests to see if I was near menopause all of my levels were still very high - not even showing peri-menopause yet so I was so afraid Tamoxifen would really affect me. Overall I am watching what I eat, walking at least two miles per day, and trying to keep a positive attitude. I thought it would be much worse. It actually feels very similar to times in my life I started taking birth control pills - just a little off at first and then my body adjusts.

Good luck ladies! I hope we all stay cancer free!!

GoKale4320

I have a question about muscle and body aches from SERMs. Is it Magnesium that you take for muscle soreness? Which kind and how much do you take?

For hydration, I am attempting to increase the amount of water, but I am considering adding some coconut water each day because I read that it helps hydration. I am not a fan of the taste though. But I can tolerate most things if it helps. Has anyone tried Coconut water and found it helpful?

I have been taking Raloxifene (generic Evista) for 8 months- a SERM similar to Tamoxifen. It felt like my sciatica was bothering me after a big hike almost a month ago. The stiffness and pain has moved around. Even before this, my right ankle was very sore and swollen and I attributed that to running on consecutive days and not resting or stretching. Because of COVID, I haven’t been to the gym to lift weights since February so I blame my decreased muscle to my injuries.

So now I’m trying a bunch of stretches several times a day, anti inflammatory spices, potassium from food, hydration, etc. If I can fix this problem, it would ease my mind.

Thanks!

edj3

I take magnesium glycinate at night, it's a 200mg capsule. Can't hurt, might help.

GoKale4320

Thanks, Edj3. I went to a nearby CVS but they didn’t have glycinate form of Magnesium. They had other forms. So I ordered some Magnesium Glycinate online. Looking forward to trying it.

I did buy some coconut water from the cooler. It was flavored with pineapple. Pretty good. Later, I will buy more and try to drink some daily. There are quite a few benefits. I’ve had plain before and found that with a splash of lime juice, AND chilled it’s okay.

Another thing I have tried for aches and pains is tart cherry juice concentrate. Two tablespoons mixed with 1/2 cup of water. It naturally contains melatonin and apparently 2 Tbs is a lot. I zonked out that night I used the full serving size. But did it work for aches? Possibly. The next time, I only used 1 TB with water and I didn’t zonk out and I felt the aches during the night.

BlueGirlRedState

GoKale - it is amazing how many forms as well as strengths and brands there are for magnesium. I use a mg citrate for a long time, but swtiched to mg glycinate after someone posted that it worked better for them. I tried mg-malate for a while after reading that athletes favor it. For me, it did not work as well as the glycinate which I take now I have not tried the bi-glycinate. I use the "KAL" brand which I find at the local Co-Op as well as the "Natural Grocer" chain. I wish the pills were not so big. Tempted to try the bi-glycinate, which only seems to come in powder. You might also want to look up foods with mg, I thought I had something bookmarked, but cannot find it.

Thank you for the mention of tart cherry juice and melatonin. I take melatonin as well, maybe tart cherry would be better than the pills. Get your calculator and look at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5617749/ . So If I did the math correctly, they drank 8 oz 2x day , so 16 ounces day, for 2 weeks. Each "dose" (is that 8 oz serving?) had 0.135 μg melatonin per dose (0.000135 mg). The biggest effect seemed to be with the "waking up" after just going to sleep - my problem. Because of the low amount of melatonin, they speculated that it might be on how it interacts with naturally occuring tryptophan in the body

Beaverntx

GoKale, I have been trying tart cherry juice too. Verdict is not in yet on joint pain. I started with 1/2 cup in the morning and in the evening and couldn't stay awake in the afternoon. Now take only at bedtime and sleeping has improved (if only it also took care of the need to get up to pre during the night).

Ampmusic14

Looking for some insight! I've been on tamoxifen for one month. I also just went back to work 3 weeks ago after being off since June for my bilateral mastectomy and chemo. I'm having increased lower back pain and hip pain especially on the right side. I'm hoping it's just from being on my feet all day at work and from the tamoxifen. Anyone else have bad back and hip pain from tamoxifen? When I try to stretch it feels a little better and feels ok when I'm sitting down. I'm hoping it's not a recurrence... Thank you!

Mama2FourKiddos

Ampmusic14, yes I'm having lower back pain too. I actually only started taking Tamoxifen this past Wednesday and by Thursday evening my lower back was aching. It's been happening every evening/late afternoon since. It's uncomfortable to go to sleep with and then better in the morning, until later in the day.

GoKale4320

This pain you describe sounds like my pain on Raloxifene (generic Evista). It’s a SERM just like Tamoxifen is.Sometimes I absolutely must take an ibuprofen for it. Yesterday I was hobbling around the house. I’m getting very little exercise this past month because of the pain. That is not good. I sent a message to my doctor to see what to do.

BCat40

GoKale--there's the dilemma with these anti-hormone meds--they cause pain and fatigue and make you not want to exercise. But you're also supposed to exercise to prevent the cancer from coming back--and just for general health like keeping weight in check (also better for cancer prevention!)

Mom2bill

I’ve been on Tamoxifen for 8 months, and my lower back pain started about 2 months ago. I am hoping that it will go away at some point, as this happened with my foot and ankle pain. When I first started Tamoxifen, I had horrible pain and stiffness in my feet and ankles when I first got out of bed in the morning. After walking around for a bit it would be OK until the next morning. After about 4 months of this, the pain went away. Shortly after that, the back pain started. So for me, the areas of pain seem to shift around. I’m hoping the back pain will move on as well!

AmusingSoprano

I've just started taking Tamoxifen (6 days in). At what point would people start getting side effects if that is going to happen?

datagirl

Amusing Soprano,

I've been on it for about 3 weeks. No problems so far, except some minor hot flashes. They are more annoying than anything else. I don't know if I got lucky, or there is another shoe that is going to drop. I'll see my doctor next week so I'll ask. I just hope the lack of side effects doesn't mean that it's not working.

crsharper

Hello! I apologize in advance for asking these questions because I"m sure they have been asked before...I tried to read through...this message board is long! lol

Do most of you take your Tamoxifen in the morning or night? I usually take my meds at night and wondnering if there is a reason why I shouldn't take it at night. I take melatonin at night also and it really helps me sleep. Those of you that have had sleep issues did you take Melatonin? Does it help? Any natural sleep aids that help? I think I'm going to go ahead and preemptively take some magnesium to hopefully help with muscle pain!!

Any other tips you all have to help me get started I would appreciate!!

Beaverntx

crsharper, I take Tamoxifen with my evening meal as advised by my pharmacist. When I am having trouble sleeping 1/2 to 1 cup of tart cherry juice at or near bedtime helps, but that is due to melatonin, in my understanding.

beach2beach

crsharper,

I take mine in late afternoon. Works best for me. In the beginning I took it in the am and noticed a headache about 4 hours later. So I switched to about 4-5pm that by the time its at full strength I'm asleep. I;ve used melatonin long before I had bc, I like the sublingual types and it helps to calm my mind and relax me enough to go to sleep. I usually get a solid 4 hours, usually with vivid dreams, when I take it.

crsharper

Thanks Beaverntx and beach2beach. I ended up taking my with dinner. We'll see how that works for the time being. I'm drinking tons of water and I started on Magnesium as a precaution! We'll just ride the wave and see where it takes me!