Bottle 'o Tamoxifen

Suzanne50

Quick question...anyone drink Shakeology while taking Tamoxifen? I was told not to take antioxidents during chemo and radiation. Just wondering if anyone has any info.

lala1

CarolAnne--I'm one of those on Tamoxifen who had a hysterectomy in jan and now have the option to switch to an AI. I've declined. Both my BS and MO said that since I do pretty well on Tamoxifen that they hesitate to swap me and have me have increased bone and muscle pain along with possible bone loss. They said my recurrence percentage is only 1/2-1% better on AI. So for now I'm staying on Tamoxifen. May revisit the idea in a few months.

Suzanne50---Tamoxifen did give me pretty severe muscle and joint pain but I got rid of about 90% of it by taking turmeric and ginger and exercising. Don't worry about not being able to exercise. It actually helps alot with the pain and makes you feel way better. I run, do yoga, swim, etc and find that if I workout regularly while taking my herbs I've gotten my pain from an 8-9 on a 10 scale down to a 1-2 which I can live with!!

Suzanne50

Thank you lila1 - that is good to know. I found that exercise really has helped me through this whole ordeal. I trained for a marathon while going through chemo. Finished my treatment and ran NYC 3 weeks later.

MJS1266

Suzanne 50, I have been on Tamoxifen for about 6 months. I am working out more than I did before and feel better than ever. I can't say that I have had any noticeable side effects. I have had no muscle or joint pain.

CarolynnAnne, I too had a hysterectomy and could have switched to an AI. My MO decided to leave me on Tamoxifen likely for a few years because I am tolerating it well. Also, I have neuropathy in hands and feet from chemo and she wanted to give them a chance to heal and felt the AIs might increase my issues.

Good Luck all, MJ

rleepac

Has anyone experience dizzyness on tamoxifen? I've been on Tamox for a little over 5 weeks and just in the past 3 weeks I find that I'm dizzy unless I'm laying down. I've almost fallen a few times and felt like I was going to pass out once but managed to get through it.

I also have pain in my spine but I'm hoping that will go away after a little longer on Tamox

mira845

I've been on tamoxifin since the end of October and have been getting dizzy/woosie spells a few times a week for the past 2 weeks. Otherwise no real noticable problems.

I see my Onc tomorrow for the first time since I started so I'll be asking about this.

FastWalker

Yes - Tamoxifen can make you dizzy. I almost fainted in the supermarket when I got up fast from a squatting position. My MO told me to move slow when changing positions. I have also upped my water intake (I drink about 10 glasses of water a day) and that has helped a lot. (Tamoxifen seems to be very dehydrating for some women.)

rleepac

Thank you...so good to hear that! Of course my mind automatically jumped to brain mets LoL. I'll increase my water and see if that helps

ladyb1234

A few weeks into starting Tamoxifen I started to get the constant dizziness. Feeling like I would pass-out and even vertigo and lost balance. Talked to my MO and she had me up my water intake. Yes, Tamoxifen can cause dizziness. Since I had quite a few SEs my MO had me take a two weeke break and restart, which helped significantly. She called it rebooting my system. Hope this helps

InStitches

Have any of you experienced a blood clot while on Tamoxifen? I have a suspicious patch on the inside of my left calf. It is about two inches in diameter and has a slightly reddish cast. This has been here for at lest a week, maybe longer. The spot is tender to the touch and I can feel something that feels hard, like a dried pea below the skin. I have sent a message to my internist to have this looked at and evaluated.


In 2013 I had a suspected pulmonary embolism and I was concerned about that when my Dr prescribed Tamoxifen.


InStitches

Loral

InStitches:  Here is info. about a blood test you should have...

Among women taking tamoxifen for early-stage breast cancer, an inherited gene mutation (Factor V Leiden) may increase the risk of blood clots. The researchers note that clinicians may wish to consider testing for FVL prior to prescribing adjuvant (post-surgery) tamoxifen if a positive test would change treatment decisions.

lala1

I've been dizzy and sometimes nauseous since about 10 months after I started Tamoxifen. i felt that may have been too long after starting to blame it on Tamoxifen so I started looking for other causes. One thing that i started to consider was the amount of surgeries and subsequent antibiotics that I'd been on the previous year so I started probiotics, really good ones, which helped quite a bit. Also Tamoxifen can mess with your sinuses and cause or increase allergies. I've found out that I now have chronic sinus infections (probably due to Tamoxifen according to my docs) which can lead to dizziness and nausea. Before BC I haven't had a cold in probably 15 years. Now I get 2-4 every winter. At one point my doc finally gave me Clyndamacin which cleared me right up and resolved the nausea and dizziness but now it's winter again and I'm on my second cold so far. It takes much longer for the dizziness to clear because I don't want to keep taking antibiotics. Anyway, this could be a reason for the dizziness.

Sloan15

I'm starting Tamoxifen tonight. I've been perscribed 20mg in AM and 20 in PM. This sounds like a lot. Does anyone else take this much for stage 1 IDC?

InStitches

That seems too high to me. I take a 20mg tablet once a day.

InStitches

lala1

Same here. As far as I know it's 20mg per day. Some people take 10mg twice a day.

ksusan

I take 20mg a day.

gemini4

Suzanne50 -- I wanted to use shakeology to help lose weight, but I decided not to risk it because it contains maca. Maca is said to help menopause symptoms, which suggests to me that it has estrogenic properties to it. I haven't been able to find any resource online that indicates that maca is either safe or unsafe for women with a history of er+ BC, so I decided to err on the side of caution.

Sloan15 -- it sounds like you've been prescribed double the normal dose! I've only heard of 20mg total per day, and sometimes it's prescribed as 10mg 2x / day. Definitely call your doctor. Maybe the pharmacy made a mistake?

Hope this helps

solfeo

I was reading that CoQ10 might enhance the effects of tamoxifen, so I started taking it yesterday in the amount they used in the study I read (100mg). Now today, very suddenly, I have been having constant hot flashes. I have been on tam for about a month and a half, and I have had hot flashes here and there (not much worse than before I started it), but not all the time like today. I wonder if it's just that time for the more intense side effects to show up or if the CoQ10 is working that fast to pump up the tamoxifen? Anyone else with knowledge or experience with this?

Overall my side effects haven't been too bad. I have also had some hair loss, insomnia and constipation, but nothing I can't live with. The hot flashes don't really bother me - makes me feel like it is working so I try to roll with it. I also tore some muscles for no good reason, and I remember reading from someone here who thought they were having the same problem because of the tam. I have no idea if it is related - all I know is that what I was doing at the time I injured myself wasn't strenuous enough to hurt myself as bad as I did. Doctor said I can't exercise again for a month.

Suzanne50

thank you gemini4 for that information. I am going to run it by the nutritionist at MO office. But I will probably air on side of caution as well. I did love that shake - really made me feel good!

Ramey

Hi ladies....I rarely post anything but I was wondering if any
of you have experienced a lot of headaches on the tamoxifen?
I've been on it a year and have consant headaches. I also
Have a lot of muscle pain in my legs. My MO said its not
related to the tamoxifen but I'm thinking it has be. I don't
know if its all related or am I just over thinking it.

ladyb1234

Sloan, That seems too high to me. I take a 20mg tablet once a day in the mid-day. Check with your MO in why a higher dosage.

jojo9999

Ramey,

I have been on Tamox for 1 year and I get headaches if I drink alcohol. I know that anyone would get headaches with excessive alcohol, but I sometimes get them after 1 glass of wine.

TeamKim

Ramey -

I went through a period about 9 months into my Tamoxifen treatment when I was having constant headaches -- a lot of fatigue then too. I took a lot of Motrin and Tylenol and eventually it passed (probably 8 weeks or so). In the last 6 weeks the pain in my hip, knee, ankle and calf on my right side have gotten SO much worse! I can hardly walk sometimes. Motrin and Tylenol takes the edge off, but tonight I got so desperate that I dug out some Norco left over from my surgery back in 2013. I have ordered some doTerra Deep Blie supplement so on see if that helps. I exercise - walk about 5 miles per day.

lala1

I get periodic headaches which my doc says are due to chronic sinus congestion although I have no other issues. And my severe muscle/joint pain is totally under control thanks to Gaia Turmeric, ginger and a really good magnesium. Now if I could just get rid of this high pitched whistle I have had in one ear for about a month. Also blamed on my sinuses but no one has offered to do anything about it.

queenmomcat

I'm going to go out on a limb and say (as I have elsewhere) that Sloan's is a high dose but not an untoward dose--I don't know her MO's logic or her precise diagnosis. Twenty milligrams is the more usual dose, to be sure, and it's the one I'm on. But her medical team may have logic on their side, and for all I know, she will be able to tolerate the side effects.

Or not. But that's something to bring up with her oncologists.

Sloan15

ladyb - I called my MO today, and his office said yep, 20mg twice a day. I read they give more sometimes when the cancer is metastatic, but I'm stage 1. The office said this is the protocol (40mg/day). With whom should I check to see if this is the right amount?

Does anyone know how you double check a doctor's prescription?

stage1

sloan15, I'd call the pharmacist to see what he says. Just ask if this is the typical dose. I have never heard of more than 20 mg ...

Sloan15

I read that 20mg is dosage for dcis, preventive breast cancer for brca patients, and something else, and the 40mg was for palliative care and metastatic IDC cancer. The site just said 20 to 40 mg for IDC. I just don't see any research behind 40mg. I'm 5'8, and maybe a few pounds over a good BMI, sho I don't think it's my size. My ER/PR is 90%. I just don't get it.

MJS1266

Sloan, I am on 20 mgs also. I was under the impression that this was the standard dose. I you could get a second opinion and consult with another MO. I generally take mine late morning. I haven't had any issues. I did stop taking it for a month two weeks before and two weeks after surgery. In fact, I think I had worse hot flashes during that month than I did while on Tamoxifen. Good Luck MJS

queenmomcat

Sloan: the decision is yours, and the discussion between you and your MO. Nothing I might say can or should be construed to pressure you one way or the other. All I've read indicates that 20-40 mg is a normal dose, depending on the diagnosis.

But I don't get it either. I'm rather decidedly beyond 'normal' BMI so that's not it, though I had straight DCIS. Might your MO be amenable to your starting with a 20 mg dose and titrating upward? When do you see the actual doctor next?