Bottle 'o Tamoxifen

Goid morning everyone,

I have been on Tamoxifen for 16 months. I have consistently had hot flashes and night sweats. I have also had some difficulties with word finding and attention issues, but those problems have gotten better. In the past month I have developed hip pain, both sides, and I get a pain in my left thigh bone. I am 54 but look about 90 when I stand up to walk! After a few steps i am better but it looks crazy! Anyone else having these issues?

I told my MO's NP about the thigh pain and she recommended magnesium. I wasn't thinking the hip pain was related because I have been walking a lot lately but now I think it is related to the thigh bone pain. I started the magnesium Sunday night. Any recommendations are welcomed!

Scrafgal, thank you! I have made a note on that Very Fit Pro. Hub would not use it for anything else - he moves around all day long on a 12 hour shift, he really doesn't need to count his steps. I bet I can buy one online. Sounds like it would give us smeo useful information and tell us how much he actually sleeps.

Edj3, I agree sleep apnea is serious and I know people who have it. My dad did. He used to snore like a freight train, then quit breathing, then do this huge gasp, choke, wake up, go back to sleep, repeat all night long. Hub DOES NOT do that. Does not snore, does not gasp, does not wake up, is not overweight. When we returned the apnea rental they man looked over the collected data and said to Hub, well you're getting more sleep than you think WHICH IS EXACTLY WHAT I HAVE BEEN SAYING. But it's like he's fixated on this being tired thing and he can't let it go. We ALL feel tired. Hell, be a mom to small children to know what tired is!! I think there are other issues going on - in fact I KNOW it. But trying to convince him of that is like trying to pull teeth. In my loving, supportive style, after listening to him moan on about how tired he was and how he had to get to bed early, and please understand that he has been yakking on about this relentlessly for over a year, while doing NOTHING about it other than the most obvious and easy (sleep apnea, he wants a machine to fix his problems rather than address issues that might require personal effort and change) I told him that if he mentioned how tired he was one more time I was going to punch him in the throat. He never brings up cancer, never ask how I"m doing mentally, never asks about the lymphedema that aches like an SOB, never asks how tamoxifen is making me feel, sure never did any investigating into how 5 years of this med might affect the dynamics in our marriage, emotional and sexual. No. That never comes up. Because he's too busy howling and bitching about needing more sleep, woke up 3 times last night, almost couldn't make it through the work day blah, blah, blah. I am feeling a little less than charitable right now.

That sounds really frustrating, and I cannot begin to imagine how you don't just blow a gasket. For real.

Lezza13, funny you should say accupuncture because I am going to be involved in a study where I get accupuncture twice a week for 10 weeks. Hopefully it will help!

Today is the start of my second year in Tamoxifen. Made it through the first year and hoping for the best as I move along. It is so hard to tell what are side effects and what are normal changes as I age. Actually hoping some are SEs so there is hope they will improve in a few years!I

Lewhy, I'll be very interested in learning about the acupuncture. I know some folks have found it to be helpful-- may that be the case for you.

Beverantx I do like acupuncture. I do it for trocanter bursitis. Glad to hear you started your 2nd year. I am coming up on my 7th so hang in there!

Rae7200 I saw a study online at Mayo about magnesium glycinate for hot flashes. I did not join the study but starting taking it to see if it helps with hot flashes. I am hoping it does. I will try adding more ginger to my diet. Thanks for the suggestions.

Thanks for the ginger tip! I am sitting in the accupuncture waiting room right now and feel like I need a shower! I really cannot stand these hot flashes. I will try all recomendations!

Hi everyone, had my first accupuncture appointment today. It was uneventful, except for a small bruise on my wrist. 19 more to go. They told me if it works it usually works for a while after you stop. I have been keeping a hot flash diary so I will see if they get better!

Rae7200, thanks for the magnesium tip. I have the wrong one! That might explain the problem I have had this week, lol!

Salamandra, enjoy your month off! Did your MO mention just staying on a 10mg dose and seeing how you do with that?

Strongly support the going on slowly to minimize SEs.

I started at 1/2 a 10mg pill everyother day for two weeks, then 1/2 a pill everyday for 3 weeks...today, saw my first full 10mg pill and will take 5mg/10mg everyother day for a couple of weeks, etc. Letting the body adjust to the drug and only moving to a fuller dose when the SEs of the new dose start to back off/are accepted by the rest of my body.

TT

Spoonie77, I definitely will. I see him July 19. I did think about posting in DJMammo's thread but he commented last week that he's not a pathologist so I decided not to.

Salamandra, as I understand it, titrating means to adjust the dosage of a med to get the benefit while avoiding the side effects. This means you may forever stay on a lower dosage. If your doc is saying she wants to titrate you UP, what she's actually saying is she wants you on the full dosage, just not all at once. These two things are not the same. One has the WORKING (most tolerable while still effective) dose as the end goal, the other has the WHOLE dose as an end goal. Which is it that your onc (and you) are aiming for? If she's saying she will ease you in to the 20mg dose over a few weeks then she's not titrating you. She's dosing you.

You have a low Oncoscore. That's a good thing! You are young, that is a complicating factor (in my opinion) as young women seem to be hit harder by cancer. You have a lot of life you can expect to live still, so this is also a consideration. If you were 92 when diagnosed your feelings about treatment might be understandably more relaxed. (or not!). But tamox can also cause one to feel like they are going crazy and their body is breaking down. The benefits of tamox can come at a high price. But you also feel exposed and vulnerable if you take nothing at all. So what is a person to do?

I thought about all of this, my risk, my age, that I wanted some hope of not getting mets but that I didn't want to spend the next 5 years feeling like hell. I had to weigh and balance this out with a treatment plan that I felt I was likely to stick to. I know myself. I know I will try and try and try something but then I reach a point where I throw up my hands and say done, out, not playing this game anymore, the answer is no, I am finished with this shit. I didn't want to do that. So to avoid that I SELF decided on the quasi half dosing I'm doing.

Did the half dosing avoid side effects? NO! I have had the full range of effects AND, it turns out, the added effect of becoming highly reactive to sunlight which turns me almost instantly lobster red. Not a burn, an extreme photosensitivity. The joint pain was ferocious as were the hot flashes and hair falling out. But the pain was only in bed at night and I was fine during the day, so that was okay to live with. Not great, but I was okay with it. I put hair catchers in all the drains so the plumbing wasn't at risk of clogging, so that was okay. The leg cramps have been better since I changed my pill to night taking instead of morning taking. I still get killer cramps, but not as often. And even half a dose stopped my periods absolutely, instantly and without even a trace.

Your doctor might imply that if you don't take the FULL dose you will not get the FULL benefit and there is simply NO research to support that claim. Your doc has no clear guidelines on how much steady state tamox you need in your system to keep you safe from recurrence. The bottom line : this comes down to you and what kind of risk you are comfortable taking. Do you want to be more cautious with your health? Then you might have to suck it up and take the full dose to feel you are doing everything you can. Are you more concerned with living without undue physical misery? Then you might have to live with your doc's disapproval and take 10 mg a day, or whatever you decide on. But ultimately the decision you make is up to you.

If you take half a dose, can the cancer come back? Yes.

If you take the full dose, can the cancer come back? Yes.

Those two questions were the truths that I needed to consider. Where in the middle was I willing to stand? It is not a striaght forward issue. I wish you luck and peace with whatever you decide.

Hi All - Rae 7200 - thx for the info about Ginger for HOT Flashes - Mine are devastating. I have panic attacks they are so severe. So far I've tried Effexor, Oxybutinin, Gabapentin, and just picked up a script for Paxil. But like I've said, its NOT the Tamoxifen. I've been off of it for 3 months now. My hot flashes started the day after I stopped taking my Hormone Pills upon Dx. After Chemo they became unbearable.

Any other tricks of the trade to ease Hot Flashes please let us know!

Rosabella -- How did you get rid of your HOT flashes! Do tell!

Today I got my hair cut SHORT - mini pixie so I can duck my whole head under the faucet with COLD water to ease my Hot Flashes. I can only think of one other place I can do this in public - Walmart. Ha.

This Evening I'm trying Paxil for the Hot Flashes - ANYBODY try this? Then I start back with Tamoxifen on July 1st. (5mg)

I didn't do anything. It went away about a year ago. I'm on the at least 10 year plan since ai are horrible ses. I'll take fatigue over hot flushes though.