Bottle 'o Tamoxifen

etnasgrl

Well, I saw my MO today, to get on Tamoxifen. He gave me a prescription with 11 refills and told me that he will see me in a year. That's it.
He did say that if I have any side effects from the Tamoxifen, that interfere with my life, to make an appointment with him and we will try different things to lessen the side effects.
He explained that my SO would be the primary oncologist for me. I already have an appointment for a mammogram scheduled in June, meeting with her right after.

Anyway, he wants me to start the Tamoxifen in 2 weeks. Since I just finished radiation on Monday, he said that he wants to give my body a break and some time to heal from the radiation. I'm good with that!
I'm SO nervous to start the Tamoxifen as I've heard of so many women having some pretty horrible side effects. Obviously, I know that not every woman experiences this, but I'm still anxious.

solfeo

As I have said my MO doesn't test for anything but liver function and no scans without symptoms for me. I just had ten tubes of blood drawn this morning for my naturopath, though, which is the first follow-up since August, right after I was diagnosed. Both of them say there are no reliable tumor markers for breast cancer (as opposed to other types of cancer I guess) so I think that's why a lot of MOs don't test for them. It's one of those controversial areas that there seems to be a lot of disagreement about. What strikes me after following this thread for a few months is that we all get told different things by our doctors, sometimes completely opposite. That right there is reason to never blindly trust your doctor. They can't all be right. I like my doctors but I've caught all of them giving me wrong information at one time or another.

I'll share the blood work my ND gives me, and some of the reasons for it, for anyone who might be interested. These things are not directly related to cancer, but are geared toward identifying areas where risk of recurrence can be lowered.

C-Reactive Protein (CRP) - an inflammation marker. Mine was high in August. There have been studies for breast cancer. The higher the inflammation in the body, the higher the risk. Losing weight is one of the best ways to lower this, but there is a lot of different stuff you can do. I'm closing in on 100 lbs lost, 30 lbs of it since I started the tamoxifen November 17th, so don't think you can't lose weight on tam.

Vitamin D3 - most of you probably know the benefit of healthy D3 levels - some MOs test for it, also gynecologists and most holistic docs.

Vitamin B12 - people with high levels have higher risk of several types of cancer. This is a chicken/egg kind of thing where they don't know if the excess B12 causes the cancer or if the cancer does something to raise levels, but mine was sky high in August. Hopefully it has come down.

Copper & Zinc - high ratio of copper to zinc may contribute to angiogenesis. I've eliminated extra sources of copper and take a zinc supplement to improve the ratio.

Fibrinogen - people with cancer often have high fibrinogen levels so it's good to get it down to normal. Mine was slightly elevated last time. It also puts you at higher risk for stroke due to blood clots, so it's good to reduce levels no matter what, especially on tam which also adds to the risk of blood clots.

Cortisol - stress hormone. We all know we need to reduce our stress. In August my ND said I had the highest cortisol level he had ever seen! Hope it's come down but breast cancer is a pretty stressful thing in itself. I meditate and try not to sweat the small stuff.

Natural Killer Cells - tells you something about your immune system.

A1C - it's good for everyone to keep this low, but especially people with cancer. Every human gets this test at some point, but if you haven't in awhile it's something to keep an eye on.

There was more but related more to general health than specifically for the cancer (healthy body fights off cancer more easily), and some hormone tests to see if I'm in menopause yet.

etnasgrl

solfeo.....I'm so glad that you shared about losing weight while on Tamoxifen! That is such a concern of mine as I'm losing weight, (which I really need to do!), and want to continue to do so. I've heard of several women who complained of GAINING weight, so I was pretty nervous.

And by the way.....MAJOR KUDDOS to you for losing almost 100lbs!!! That is absolutely FANTASTIC!!!

Sloan15

lovetodance - I'm tempering my stress with your message until I get a 2nd opinion on the 29th. THANK YOU!

solfeo

Thanks etnasgrl. I'm proud of losing it but I sure wish I had never gained it to begin with. It was probably the major lifestyle contributor to my 100% ER+ cancer, but sometimes it takes a wake up call and that's how I choose to think of it. I still have 50 lbs to go so I was very very heavy. The point being that it's never too late - if I can do it anyone can. And strangely enough I have no other health problems at 51 except for the cancer, which hopefully I've seen the last of. I've done enough evangelizing about my diet here, but since you're new to the tamoxifen thread I'll just say that I'm on a strict modified ketogenic diet recommended by my ND. Some people think it's good for cancer, but from prior discussions there are others having success losing weight by reducing carbs in a less strict way. If you have any questions feel free to PM me anytime.

MomOfTwins98

Etnasgrl - hope all goes well on Tamox...I started Rads on 11/23 and Tamox on 11/30 and, to be honest, was hard to tell what was causing what symptoms. My RO wanted me to wait on Tamox but my MO wanted it statred as I had been delayed. My insurance had denied my radiation so was a fihgt to get started and should lhave started couple weeks earlier - but, here i am, rads done and healing and on the Tamoxifen. As Ive said before, I also take gabapentin so told that helps with SE. I had IMRT radiation which apparently is much more expensive for the insurance so they were not happy about it - thankfully, my RO fought for me. Wising you well. I do think some SE get better with time, at least thats been my experience in only the 3 months I've been on

Suzanne50

I just want to agree with lovetodance - these little fluctuations are normal. I think we can get crazy with this stuff. Good you are seeking a 2nd opinion Sloan. I think all will be fine. It is just a nerve wracking process and the "what ifs" can really reek havoc!

hsant

Solfeo, wow! That's awesome! Congratulations! Out of curiosity, do you use Keto sticks? I lost 40+ pounds over 20 ago by reducing my carb intake, and that's been pretty much my way of eating since.

I think it's near impossible to truly know what the contributing factor is as to why anyone gets breast cancer. I'm 5'7", weigh between 105-110 lbs, and I was 99% er+. My sister also was diagnosed with a high estrogen %, and she had 9% body fat.

Etnasgrl, I was also nervous to start Tamo. I tend to get SE's in general with meds. Plus, I had never been prescribed any medication long term before Tamoxifen. My SE's are limited to night sweats and chills. I didn't connect the chills to Tamo until I came to this thread.

However, I experienced extreme anxiety for around four months after starting this med. I would wake up in the middle of the night with panic attacks, and just felt a constant, overwhelming feeling of anxiety. It's difficult to say whether Tamoxifen was the cause, or circumstances that had nothing to do with the cancer diagnosis, but I've been in many stressful and challenging situations and didn't experience this type of anxiety.

I asked my MO, who's been practicing for over 40 years, and he said it was unlikely that Tamo was the cause. Has anyone else experienced this?

One_Bad_Boob

Anyone notice a difference taking it at bedtime vs in the morning?

etnasgrl

Thanks everyone, for such a warm welcome and for sharing your experiences with Tamox. My period is due to arrive Feb 28th, so my MO suggested waiting until it's over and then begin....so around the first week of March.
My ER was 95%, so it's important for me to stay on Tamox! Hopefully, I won't have too many side effects.

TinyDancer5

Etnasgirl, I've been on Tamoxifen for 1 month and I take it after breakfast. During the first few weeks I have felt chilly with a little nausea, and while sleeping I get a couple of hot flashes. Drinking ginger lemon tea helps with the nausea. I guess my body has become used to it and I feel ok now. Good luck.

solfeo

Hi hsant - now I know what I can eat so I don't use the keto sticks every day but I check in every once in awhile to make sure I'm still on track. One thing I've noticed is that when I accidentally kick myself out of ketosis, I go right back into it the next day. It used to take a few days so my body seems to have adapted.

One_Bad_Boob - I started taking it at night for the first month, then the MO suggested changing to morning because I was having trouble sleeping. My sleep didn't immediately improve, but has gradually gotten better. Still not good enough so I think the slow improvement is just my body adjusting and the timing doesn't matter. I guess I notice a few more hot flashes taking it in the morning but they don't bother me too much. Other side effects that might have been affected by the timing, like headache and nausea, were temporary only in the very beginning.

I got most of my lab results today. My CRP is half of what it was in August, but still barely in the group with the highest risk of death from BC. Here's BCO's article on CRP and risk. Cortisol is higher than ever, and as I mentioned it was already the highest my ND had ever seen. Don't know what to do about that! My thyroid function has also declined quite a bit. Otherwise everything looks pretty good. B12 is back to normal, my liver enzymes are better than ever, and my hormones have apparently crossed over into menopausal territory. I wonder if my MO will still want me to complete the two years of tamoxifen or switch me to an AI now. I want to make the switch as soon as possible because there are fewer supplement interactions to worry about with AIs. I don't see the MO again until next month.

MomOfTwins98

hsant - Yes, I also feel the anxiety...wasn't really sure if it were the Tamoxifen or just everyting that was happening to me but definitely feel an increase in it - very moody and get upset and weepy for really no reason. I am a pretty strong person who just copes and have never really had that type of feeling so a bit scary and overwhelming. I try to just take a big breath and move on. Exercise helps a lot - also, when I was going through rads and would be so tired, I never missed a day of work. Poeple would tell me I should be home resting but, honestly, working and moving and not sitting around helped me quite a bit. I still get moody and feel anxious at times but knowing what is causing it helps me get through it

one bad boo - I was told to take the Tamoxifen at night as it helps with the nausea. Not sure if that is true but its what I've been doing. Had nausea in the beginning but not anymore. The care navigation nurse said that taking it at night lets you sleep through the nausea. I dont really sleep but sounded good:-) My MO said that any time is fine as long as you remember to take it -that's the real key

2miraclesmom

Hello everyone. I am due to start tamoxifen on Tuesday. I am still unsure if I really want to do it though. I was barely ER+. As in 2 oncologist said I was barely over the limit of being er+. My current onc has said it will only give me a 2% extra boost in my cancer not coming back. However, 2% is 2%! Im 4.5 yrs out from diagnosis. I did have chemopause, but my body surprised everyone and bounced back. Now im in menopause and my hair is thinning like crazy and i put on 10 lbs. With the side effects of tamoxifen, I am really not looking forward to starting. I like having hair! Haha

Anonymous

I have been on tamoxifen for a little over a year, and my SEs have evolved over time. The only ones I've had from the beginning - and still have - are hot flashes and fatigue. Last year, I had nausea, headaches, dizziness, and hair thinning, but not anymore, One addition in the last few months has been these crazy chills before the hot flashes! I felt better after reading this thread and seeing it is fairly common. My hot flashes are not as frequent or intense as they used to be, but the chills can be very intense, especially at night. I pile on the layers, just to throw them off minutes later!

Emotionally, I know that I am more prone to meltdowns and over-reacting to things that probably would not have bothered me before. I have to walk away from situations at work or I'm at risk of getting weepy. This was worse last year, but it's still definitely an issue. I guess it could be menopause as much as the tamoxifen, who knows...

Regarding dosing, I take my tamoxifen every morning, generally at the same time, with breakfast. I use a 7-day pill container to help me remember. This just happens to be the routine that works for me. When my hot flashes were really bad last year, my MO suggested I take half the dose in the morning and half in the evening. I tried this for about 10 days and was totally miserable. Every SE became much worse. I know it's not supposed to work that way, but I do a lot better with once a day dosing.

RobinLK

Heightened anxiety and panic attacks, along with tinnitus and joint/muscle/bone pain, are side effects of tamoxifen according to my RO. My MO would disagree, but my BS agrees. My oncology counselor also agreed.

My rheumatologist prescribed Vimovo for me. It is naproxen with a stomach medication to prevent gerd. I found it worked very well for the debilitating pain. I no longer have the pain once my ovaries were removed.

CassieCat

etnasgrl, I was nervous to start taking tamox too, but after ten months or so it's been fine. I was/am in chemopause and was having hot flashes already, so it's hard to say if tamox was contributing to them or not. But they've subsided quite a bit now.

chrissie29

Cidneyl-I too had dry eyes and pain. Saw the eye doctor who said that my one eye wasn't holding tears like the other eye. I use drops as needed, but the eye pain was more so from what I think was a sinus infection because after having antibiotics for my exchange surgery, the pain went away. I had the pain for months - no fever. The MO was even going to have me have a scan but I kept saying it felt like it was my sinus but no one said I should take an antibiotic.

Chrissie

lala1

RobinLK-- You're the first one I've seen post who's doctor actually said tinnitus was a SE of Tamoxifen! I've been seeing an ENT who just keeps saying allergies. I'm going for a second opinion today so we'll see what he says. I'm pretty sure I may have an ongoing sinus infection so I'm wondering about trying antibiotics. I read recently that your diabetes risk skyrockets with every course of antibiotics so I'm a little afraid to take another dose. However I also don't want an infection just sitting in my brain! But if it's due to Tamoxifen then I'm not so worried. Wonder how you tell which one is the cause? And is there anything I can do about it? I can live with the slightly runny nose but this whistling in my ears is killing me!!

Trvler

It's funny because I actually feel like my moodiness has declined a lot since chemopause/Tamoxifen. I don't know it is hormonal or if it is because I am working out more.

I didn't notice the chills got any worse after starting Tamoxifen. I was having them while in chemopause, too.

ksusan

Apropos of working out/depression, from today's Medscape:

Exercise, Meditation a Double Threat for Major Depression

Nancy A. Melville

February 18, 2016

A combination of aerobic exercise and focused-attention meditation performed twice weekly significantly improves symptoms of major depressive disorder (MDD) after just 8 weeks, new research shows.

"[We found that] combining these two important behaviors into people's lives might be particularly beneficial," lead author Brandon Alderman, PhD, assistant professor in the Department of Exercise Science at Rutgers University, New Brunswick, New Jersey, told Medscape Medical News.

"The data show meaningful improvements in cognitive function and symptoms of depression," he added.

Meditation and exercise are both commonly recommended for the treatment of depression. However, there have been no studies of the benefits of the two measures combined as a structured intervention, the authors report.

The study was published online February 2 in Translational Psychiatry.

solfeo

Unfortunately it's so hard to get yourself to exercise when you are depressed! But if you can force yourself to do it I agree it helps.

I have had a tendency toward depression my entire adult life, but through some miracle of I-don't-know-what, I never did get depressed after the BC diagnosis. I did have some anxiety early on, but that passed fairly quickly. I have been doing non-spiritual guided meditations from the beginning, which probably did help, and since I started exercising after I recovered from the surgery, I can honestly say my mood is better than ever.

Of course there are so many other good reasons to exercise. I've been injuring my muscles very easily since I started the tam, so all I've been doing is walking a couple of miles per day recently, but that is enough to keep my mood up.

ksusan

Ja, the Tamoxifen makes me have leg cramps during exercise as well as at night, so a good warm-up and pre-sleep stretches are useful.

new2bc

ksusan,

Do you take magnesium and if yes, how many mg?

ksusan

I take 1 tablespoon a day of Natural Vitality Natural Calm magnesium citrate. I seem to absorb it better than I did a basic magnesium citrate pill.

solfeo

I take the Natural Calm also - 2 tsp/day (in 2 doses) seems to do it for me, which is 350mg. It also helps with the constipation caused by tamoxifen if you have that problem like I do. If you take too much for your body to handle you'll know it.

ksusan

Pretty pissed off that my Tamoxifen, which I get mail order, is late by 2 days. Just proves my point that I needed an extra month's supply (out of pocket) to accommodate this sort of nonsense without stress.

solfeo

That's too bad ksusan! I have a choice of picking up or mail order and the reason I didn't sign up for mail was because I was afraid of the same thing happening. Now I definitely won't try it.

Not related to tamoxifen, but what's pissing me off today is that the insurance company has left me hanging for over a month for the pre-approval they require for my mastectomy bras and prostheses. Apparently the BMX they already paid for wasn't enough proof that the things are medically necessary. I've had to buy some cheap ones online because I can't go with nothing. As if the whole ordeal wasn't enough without adding insult to injury by needlessly withholding what I need to feel more normal. It's a disgrace.

ksusan

Disgusting.

MomOfTwins98

I'm so sorry you are having trouble with insurance - they have been trouble since day one of my diagnosis - everything is a fight! Thank goodness I keep meticulous notes - my problem is with hospital billing dept and insurance as the hospital as they have been billing me for things that I do not owe and now sent me to collection AFTER I paid the co-pay bills in full on time. The insurance is so delayed that the hospital is putting my money towards the balance owed by insurance which is making other bills unpaid. The insurance would not approve my radiation either and the RO had to fight for weeks which delayed my treatment - was finally approved after he did a peer to peer review - he told me that his first peer to peer was with a psychologist and he was furious - how is that a peer for oncology? He finally got an oncologist to listen to him. So after all my treatments a woman talked to me form the hospital yesterday and told me I have an outstanding balance of $55,000 for radiation for the month of December - what? I do have to pay co-pays for every visit which adds up but not like that. It will be fixed but takes so long and causes issues every time. Isnt it fun to deal with all this when you already don't feel well? One of our problems is that our insurance is out of state - we live in MA but only a few miles from the NY border and my husband works in Albany, NY (about one hour away) so things are not always covered here or we need to get approval -

KSusuan - that's so unfortunate - can they send you a two month supply so you always have extra? Thats what I do here although I pick it up at our pharmacy - so afraid of running short so I keep a small stash:-)

Solfeo - how do you know the dosing for magnesium? I asked our dietician at the cancer center about it and she did not want me on it but I've heard good things - she said my Calcium/D has magnesium in it and she was afraid of me getting too much - I have stomach issues and thought it may help - let me know. Happy weekend all