Bottle 'o Tamoxifen

morelandks

Hello friends! As you can see from my sig, I've had the pleasure of visiting many stops on the BC treatment train line, and HT is next - tam for at least a while and then on to AI. I am looking for suggestions of things to ask my MO at our first HT discussion on 2/29. I've been reading the recent posts, and it sounds like you all are well into tam treatment - I appreciate any pointers you care to share. (I am aware of and checking out the content of the HT board for Newbies)

Just FYI re my status: I am 49 and was having very infrequent periods in the 18mos prior to dx, so was already in menopause - having hot flashes and heightened emotional sensitivity. Chemo intensified all of this - hot and cold flashes, night sweats, etc. These have diminished somewhat during rads. I have lost 35lbs since my surgery, and have another 15 to go for goal #1; it will be another 30 beyond that if I want to aim for supermodel status :-). I was 95% for both ER+ and PR+ (and was told this is a good thing as means my cancer will be responsive to HT - some of your comments made me wonder if it is somehow a bad thing?). I am concerned about how bad the tam transition will be for me, especially the mental fogginess (I have a thinking job that requires lots of analytical ability), but my MO says that 70% of the benefit of my TOTAL treatment plan will come from HT, so (*sigh*) I'm resigned to whatever comes with.

MomOfTwins98

I definitely get the mental fogginess but it comes and goes - I also have a job that requires me to be "on" but, I'm human so..the other day, mail went out without stamps! I have to laugh and move on. I forget names of people I've known for umteen years but, then I remember and move on. I'm more afraid I'll mess something up for my children but, thankfully, theyre 17 and so on top of things so they smile and help me out. As I said, it comes and goes and so far, nothing too bad. Several of the side effects have faded so this may too. Im also on gabapentin which has similar issues so, the two of them together is a perfect storm.

I, too, am 49 but had absolutely no menopause symptoms before any of this. The radiation took the most out of me so far although I would not admit it while going through it and worked every day of treatment - ribs are incredibly sore and I go to the lymphedema clinic for PT for swelling in breast and upper trunk - not bad but they're here so helping me. Not sure if my experience is normal as I started radiation and Tamoxifen within 6 days of one another so was hard to tell what was causing what and the Gabapentin was started the week before all of that.

MorelandKS - like you, Tamoxifen is my defense so, whatever it does to me, sticking with it. My Oncotype was 18, right on the border, so my decision (after a 2nd opinion at Dana Farber) to not have chemo was based on having Tamoxifen for 5-10 years.

ksusan

I went with mail order because I wanted to get 3-month supplies. I then learned that my state has for,e a "chemotherapy drug compact" that limits to 1-month refills and for unscientific reasons, Tamoxifen is included. I was planning to switch back to a local pharmacy at the end of this prescription year, but I think I'll do it earlier. The MO's nurse wouldn't write me an extra month's Rx to buy out of pocket in November (I live in an area where the streets don't get cleared quickly, and we're in an earthquake zone and I was updating emergency kits). When I saw the MO, she happily wrote one for me, so I do have extras in the house, but they're a different generic and I'm not happy to switch back and forth and enjoy the side effects of two generics as I switch. I will make a complaint to USPS as well--there might be a barcoding issue, but a 1-3 day first class mailer shouldn't take a week to travel one state over.

solfeo

MomOfTwins98 - One of those uncomfortable subjects, but most forms of magnesium have a laxative effect. If you're trying to find the maximum dose your body can tolerate, you gradually increase the dose until your bowel movements start to become loose, and then you back it down a little until things are normal. That's why I said you'll know if you take too much magnesium citrate. If constipation is not a problem some magnesium products have a weaker laxative effect. I used to take magnesium glycinate/lysinate from Doctor's Best but it didn't help with the constipation after I started tam so I switched to the Natural Calm powder. Somewhere around 400mg a day of elemental magnesium is a typical recommended dose. You have to read labels, because some products will list the total amount of the entire compound on the front of the bottle (1200mg for example), but you're really only getting 200mg or less of magnesium per pill. I have never seen a reason not to take magnesium with tamoxifen, but I try to separate the tam from all other meds and supplements just in case. Since I take the magnesium twice per day, I usually take the first dose around 2 hours after the tam.

I get mis-billed a lot too. I just wrote a nasty letter to the first urgent care I went to the day of my diagnosis for anti-anxiety meds when the surgeon wouldn't give me any. That was six months ago, and two letters with full accounting later they are still trying to eek an extra $5.00 out of me. Like bloody hell I'll give them a penny they are not owed. They are trying to over-collect sales tax which is against the law, and I told them I'm reporting them to the state if they try it again. You know I'm not the only one they are doing it to. Like we need the headache after everything else we've been through.

solfeo

morelandks - I was also told the higher the ER% the better. I don't recall ever seeing anyone claim the opposite. Welcome!

MomOfTwins98

Thank you - I will check it out.

I've also been told not to take anything within two hours of my Tamoxifen so I take my supplements (Calcium/D) in the morning around 7 - I take my Tamox at 5pm and my third Gabapentin of the day after 7pm. The dietician was really only concerned with the Calcium being separate but, after doing so much reading, I decided to separate it all. No one ever told me that Tamox causes constipation but have found out reading here. I take my morning supplement with prune juice which seems to help and I put Benefiber in my morning coffee or tea. I ended up with a colonoscopy and upper endoscopy two weeks ago due to rectal bleeding and not a soul mentioned the Tamox having any effect - I've told everyone I'm on it - love this board for those reasons.

This ride we're on is a constant learning curve

Scottiemom11

solfeo. . .don't get me started on insurance, if I didn'nt love MO I would fire the whole group because of the hospital they associate withe who can't get anything right with insurance. Hugs to you, it sux.

Momoftwins. . .I to have been sent to collection not only for something I don't owe, but for something that was never and could never be billed because I had already met maximum OOP last year. Such a waste of time! My trick in addition to notes of everything is to get a senior supervisor on the phone and refuse to deal with anyone else. That way when I call her I remind her about all our previous calls. I can a bigger pest about money than an actual bill collector. I also make her call me back and verify that the problem is fixed.

Morelandks. . .everyone reacts differently to Tamoxifen. That said, I have noto had the mental fog some speak of, I have an intense job and work long hours, then usually try to get to the gym. I too am very ER+ and will likely be on Tamoxifen for 10 years. MO also had me on lupron to put me in menopause but the side effects from the monthly shots were too much for me. Huge kudos for your weight loss. I have managed to maintain but not really lost. My exercise, however, has majorly firmed me up. I'll take that for now.

I'm also on gabapentin which works on my continued nerve pain from BMx and EX as well as hot flashes from Tamox. I take mag citrate in pill for which helps with leg cramps.

Scottie

ksusan

Tamoxifen showed up in today's mail, yay. Only 4 days late.

Springtime

Hi All, Tamox 5 vs 10 years, and my personal experience.

I posted several months ago about the SE's I was having after 6.5 years on Tamox. I was getting really bad muscle cramps and even muscle tearing when exercising vigorously. I had taken up a running program (Couch to 5K) and I tore a calf muscle. I went to the orthopedist and they said they thought it was Tamox. As I look back on it, I had been tearing muscles the whole time, but really didn't put it together until the calf thing.

In early Aug of last year, I decided to take a break from Tamox. for a while and see if they symptoms of cramping and muscle tearing resolved. All the symptoms went away. Also, vaginal dryness significantly improved. I was able to finish the running program and now run 5K, 3 times a week!

I talked to my Oncologist about this. She told me that after 6.5 years. I had received *most* of the benefit of Tamox, and that given how it was impacting my life, she felt I could stop. I also didn't want to move to an AI as I already have osteopenia (hence the running program to build bone); I've had several friends to into full blown osteoporosis after a year or two on an AI.

Onc pointed me to the research of Tamox 5 years vs 10 years and the risks vs benefits. When I first started in 2009, it was recommended you take it for 5 years, and then, it moved to 10 years at some point. I wanted to share the research results because it helped me make the decision to stop after 6.5 years.

Tamox 5 vs 10 years - my personal summary:

• 2.8 percent lower mortality
• 3.7 percent lower recurrence
• 1.5 percent increase in endometrial cancer
• Higher risk of clots the longer you take it.

Given this, I have not started it again and am done. I didn't feel it was worth what I was going through, the impact it was having on my ability to exercise (which is a great thing for reducing your risk of recurrence!) for such small benefits, and also the medical risks.

I know this is a personal decision for everybody, and I am not saying anybody should stop or go or anything. Sharing in case helpful.

Suzanne50

Why is it important to separate calcium and Tamox? I hadn't heard that. I usually take them together in the evening but perhaps should switch that.

I have found that tamox initially caused constipation but it seems to have worked that out. Maybe my body has adjusted.

Still have the night sweats but I had them before tamoxifen so not really sure I can blame that. Otherwise no complaints.

RobinLK

Neither my pharmacist, PCP,or MO has recommended me taking my meds at different times. Currently taking Calcium (2x per day) Vitamin D3 (2x per day) Tamoxifen (AM), Lovastatin (PM)

solfeo

Calcium, especially in high doses, can interfere with the absorption of medications, supplements and vitamins when taken at the same time.

Thanks for sharing Springtime - I'm having problems with muscle injury too. I tore the soft tissue away from my ribs just doing gentle stretching and had to take an entire month off of exercise. As soon as I recovered from that I injured my calf muscles walking up some stairs. Now walking is my only activity because I don't want to continue hurting myself and have to stop exercising completely.

MomOfTwins98

I was told by the dietician to separate Tamoxifen with all other supplements by at least two hours as they can interfere with how the Tamoxifen is absorbed. Perhaps she is wrong but I decided to err on the side of caution...figure, if I'm going to take this little white pill, I'll do whatever I can to be sure it is working. She also told me no grapefruit and no orange peel although my MO, in the same office, said thats not true - again, don't love grapefruit so no problem to avoid. I was drinking lots of orange herbal tea but just switched to other flavors. I think, like in everything, if you ask enough people, you'll get as many answers.

Trvler

It IS kind of cool that we can hear all the different MO's ideas on what interferes.

Scottiemom11

I take my Tamoxifen in the morning and supplements at night. Mag citrate especially helps with muscle cramps. I have noticed increased cramping in my calves.

Scottie

Trvler

Has anyone figured out what to do about chills? I am not sleeping much at all. I have a heating pad ON me and I am still freezing.

MomOfTwins98

My chills were so intense but seem to be easing a bit - I get into bed with an electric throw - put it in the bed before I get in so it is all warmed up for me on the sheets (polar fleece sheets) - then get under the throw and under my covers which include a light blanket, heavy winter blanket and then my down comforter. The throw turns off after three hours, on its own, but have usually woken up, hot, and turned it off. Has worked for me. (not so much for my husband who is throwing it all on top of me as he is sweating) During the day, I drink lots and lots of hot herbal tea. I dont sleep well and never have so not pleasant but, trying to figure it out

superius

Interesting about the 5 vs 10 yr. I barely getting started (Nov 1 last year) & couple of Ocno drug researcher friends already said to do 10yr if the SE are not too bad...

The Chills are not as intense now, mainly when i wake up in the morning (my room is coldest in the house). I have a little space heater that i turn on before I get out of bed. & then I have a fan on my desk. LOL. since I have no S/O to worry about, I could have the heater on few minutes, then it got too warm & I turn on the fan!

ajbenefield12

Hey ladies, question for you all. I stared my Tamoxifen in October and had hot flashes and night sweats all the time. It was not as bad as I thought it would be so i dealt with it and had no problems. At the start of the year I did Whole 30....so basically I could eat Fruit, Veggie and meat. No sugar, Beans, Dairy, grains. I loved it and felt great. After reading all these posts about side effects I realized that I dont have hot flashed or Night sweats anymore. Anyone else have this? Side effects just stopping? Should I be worried? Happy? Thanks!

Wendy3

So I have been on tamoxifen for the last nine months and they figure it may be time for a change already... Bone scan today determines all.

RobinLK

In your pocket today Wendy!

ksusan

ajbenefield12, my side effects come and go.

Anonymous

Has anyone heard of this?

http://www.aacr.org/Newsroom/Pages/News-Release-De...

Basically it's saying that sleeping in a dimly lit room (not completely dark) can cause tamoxifen resistance because of low melatonin production. From what I've read it's okay to supplement with melatonin but do any of you have experience with it?

Trvler

This has been discussed here but my question would be how do they know it's from the light and not from not sleeping BECAUSE of the Tamoxifen?

solfeo

I'm skeptical about rat studies, but I'm a better safe than sorry kinda girl, so you better believe I covered all the LEDs in my bedroom and blocked the windows the best I could. Some light from the neighbor's porch light still seeps in if they leave it on so I also wear a sleep mask when I have to. It's pitch black in there, and for nighttime bathroom trips I use a mini flashlight with a red bulb and have a red light in the bathroom nightlight as well (red light interferes less with sleep and melatonin production) I also take a melatonin supplement because I do have problems sleeping. Even if the cause was the tam preventing sleep, the melatonin reversed that effect in the study.

Trvler

Did melatonin help you sleep, Solfeo? How much do you take?

solfeo

The recommended dose for breast cancer is 20mg, which is a lot. That was from a study that was done in women with Stage IV. A good percentage of them lived longer on 20mg/day. I take 10mg because I want to be able to up the dose later if I do end up with resistance to hormone therapy and a recurrence. My ND says 10mg should help - 20mg is only recommended because that is what was studied.

If you do some reading about melatonin you'll find that these megadoses can actually make sleep worse, and lower doses are usually recommended for sleep. Different people have different needs depending on how much natural melatonin you make. I have never been a good sleeper and I took 3mg for years in a sleep formula that contains some other ingredients that might interfere with tamoxifen, so I had to stop taking that. The 10mg seems to affect me about the same - it makes falling asleep easier (I'm out about 30 minutes after taking it) but doesn't keep me asleep all night.

lala1

I buy melatonin from Amazon that comes in a 0.3mg dose. My mom has been taking this dose for years and all of my docs said they'd prefer I start with the smallest dose possible and work my way up if need be. The small dose works for me. Recently I read that it's not good to take melatonin long term. Anyone else heard that?

Anonymous

Thanks for your response Solfeo. I might start with a small dose, like 3mg or even less and see how it goes. I have tried sleeping in absolute darkness but I *need* the window shades open when the hot flash sets in. And there is a lot of light that comes into the bedroom. Since starting tamoxifen the hot flashes have prevented me from sleeping all the way through the night. So I hope the melatonin supplements will help with that.

solfeo

I remember seeing someone on Dr. Oz who said it shouldn't be taken long term, but I didn't listen because without it I didn't sleep much at all (this was pre-BC). I've also run across the claim online, but I don't remember seeing any convincing evidence that you shouldn't. That doesn't mean it doesn't exist. I read so much and it's not unusual to come upon new information that changes my thinking about a supplement.

I do have A/C in the bedroom so don't need to open the windows. Amazon has a good selection of sleep masks if you have to leave the shades open. I didn't like it at first but I got used to it.