Bottle 'o Tamoxifen

loriekg

I absolutely had chills and hot flashes when I started in July. I felt like I was constantly adjusting the air conditioner (not too mention making my family crazy!)--or putting on more clothes only to turn around and remove them!! I do still get the hot flashes sometimes but the chills, thankfully, have disappeared.

lala1

Peachy2--I also have ringing in my ears. Can't say for sure that it's due to Tamoxifen since I just developed it this past Nov and I've been on the med for 3 years. I've started taking olive oil extract capsules and something called Citridrops which I put in my saline rinse (NeilMed). It's helped quite a bit. I think next week I'm going to go see and ENT and have him check my ears just in case. I really think mine is due to a chronic sinus infection that just won't totally go away. Sometimes I have pressure in my ears and sinuses which makes me lean toward sinus issues.

keepwalking

Another vote for the chills. Oddly, the hot flashes that have lingered from menopause about 7 years ago have been less while on tamoxifen. My MO had me stop the tam for 2 weeks to "reboot" and during that time the chills went away and the hot flashes were worse. Back on now for about a month and I am overall colder than normal and get spells where I just can't get warm. However, at night as soon as I snuggle under the covers and warm up to a comfy temperature, I start to overheat and end up sweating and having to kick off the covers - repeat cycle most of the night. Nice to hear that some got better after recovery from radiation. I just finished rads almost 2 weeks ago and the burns are finally starting to turn the corner towards healing, so hopefully that will help with the chills too.

Trvler

Does anyone know the protocol for missing a pill? I take mine in the am and I didn't realize until last night so I skipped it. Should I have taken it?

Englishmummy

Allison, my MO told me if you miss to just skip that dose and be sure to take it the next day. Tamoxifen has a pretty long carry over. She told me absolutely do not double your dosage for make up.

Englishmummy

oh, and another one (me) for occasional chills.💎

MomOfTwins98

It does say right in the literature that accompanies my Tamoxifen pills that, if you miss a dose, do not take it later..just go on to the next one. I do not know how many hours constitutes a "missed" dose. I find great answers with my pharmacist and, if she doesn't know, she looks it up for me. As I am on so many different things, she is always checking the interactions for me. Do you have a pharmacist to ask? I'd be interested to know the answer - oh, and woohoo...our temps just hit 0 - such an improvement over -19 yesterday

mrsbeasley38

Tamoxifen Tamoxifen

How do you fare?

Hopefully well since

I took the dare.

.

For 5 years

my skin warmed

to try to keep my

boobies from harm.

Piles of hair

on my bathroom floor fell

leaving me wondering

If I looked like hell.

The good thing is

my period began missing

and as a result

moods were less pissy.

So it comes to an end

this relationship with my drug

Bittersweet hoping it stole my cancer

like a THUG.

keepwalking

Mrs. Beasley - love it! Congratulations on ending!!!

solfeo

That's a question for your doctor or pharmacist, but I don't think it matters either way. Tamoxifen has such a long half-life that missing a pill occasionally shouldn't hurt anything, but you don't want to make a habit of it. The only concern about taking a pill 12 hours closer to the next dose is the possibility of extra side effects, which should be temporary if it happens at all. There is someone here who takes 20mg 2x/day every day (twice what most of us are taking) without any problems.

jbokland

Take the missed dose as soon as you remember it. However, if it is almost time for the next dose, skip the missed dose and continue your regular dosing schedule. Do not take a double dose to make up for a missed one.

superius

Oh yeah.. the Chill & Hot Flash. I had it just now. I was so cold & needed to get something hot to drink. by the time I got it, now I'm fanning myself. Or it the morning turning on the space heater in my room before shower, & by the time I got back, I turn on the fan...

CassieCat

I've been on Tamoxifen for about ten months now, and the hot flashes have subsided quite a bit. They started during chemo and would wake me up, but now I can't remember the last time a hot flash woke me up. I still get them, but they're mild.

rleepac

Been on Tamox since November with the exception of about 10 days where I was feeling defiant and quit taking it. But, I've been good about it for the past several weeks. The hot flashes are super annoying! And then I get the chills. I have occasional ringing in my ears but it doesn't last long. My worst complaint is achy body. Hands, feet, hips, knees, back. It hurts to grip/grasp things and I'm constantly dropping things. I feel like I'm 80 years old most of the time. They gave me Gabapentin but I haven't started it yet. I think I'll start it soon...I shouldn't have to deal with SEs all day and all night

I still have 2 more Herceptin treatments to go and I wonder if some of my achiness is from that. It will be good to be done with Herceptin so I can definitively say if the Tamox is causing all these SEs or not.

Trvler

I hope it's the Herceptin, Bekah. How often do you get them? Is it once a month?

rleepac

Every 3 weeks

Scottiemom11

Mrs. Beasley lol. . .I think I'm on the 10 year plan.

Rleepak. . .I've been on Gabapentin since about 1 month on Tamoxifen. Had to increase the dose a couple of times but it really helps. Also works on my continuing nerve pain from BMx.

Scottie

Sloan15

I posted this in the lumpectomy thread, but if anyone has any insight for me, that would be great. Thanks.

Saw my MO today. For the most part, my blood tests were good, but one of my markers was a little elevated. The CEA test was 5.2 (the CA 15-3 was good). Normal range cut off is 5 for the CEA, and I've always been 4.5-4.7. I heard some of you say your docs don't do marker tests. Were you talking about this one? I don't know anything about these tests. I was hoping to get off 40 mg of Tamoxifen/ day and go down to 20 mg/day like EVERYONE else, but I have to continue taking 40 for a month until my next blood test. If it's normal, I can go down to 20. Then, my doc wants to do a full set of PET scans, and I heard some of you are at institutions where they don't do scans if your nodes are clean and you don't have symptoms. Ugh! I called to find out some other docs where I can get a 2nd opinion, but this kinda bummed me out with the whole "There will always be something stressful in the back of your mind" thing going on. I pressed my doc o show me the literature about Tamoxifen, and he said his office will send it to me. I'll keep you guys in loop.

Jennie93

My MO does no blood tests of any kind. No scans of any kind. Only mammograms, (I had UMX), every 6 months at first, then back to once a year after 2 years.

My family doc gives me a thorough exam once a year, too.

That's it.

Jennie93

P.S. I have never heard of anyone taking a double dose of tamox! What reason do they give for that?

Sloan15

I don't know! That's why I told my MO to send me articles, and I'll be open to it. Then, those dang markers came back a little high, so I decided to stay on 40 mg/day until the next blood test in 1 month. Ugh. Good thing I'm not having SEs except hot flashes.

Stenokim

I just passed year 2 since diagnosis and starting tamoxifen. I've had no problems with tamoxifen and no problems with menopause. Blood work says I'm post menopausal. I'll be 50 in a couple weeks. My MO does blood work and thorough exam every three months. After just passing two year mark, he's moved it to every four months. This seems excessive to me, maybe a $ thing? I'd prefer every six months, as I'd rather have the anxiety only twice a year. Just wondering what others have to do.

MomOfTwins98

I take gabapentin every day for severe pains in legs (that I'm repeatedly told has nothing to do with BC) - who knows? Started after my second surgery coincidentally. In any case, after so many Drs and MRIs, went to a rheumatologist who started me on Gabapentin. I took 200mg, 3x/day and he wanted me up to 300...nope! Felt like Still Alice...was confused, got lost driving (in my own hometown) - was so weird. So, back down to 200 mg 3x/day and slowly titrating up the evening dose to 300. Then, thats it for me. Ironically, the nurse at Cancer Center said they prescribe gaba for Tamoxifen SE so perhaps helping me without that reason.

Rleepak...give it a try. Just know that you cant quit cold turkey. According to the pharmacist, you must titrate down too to avoid withdrawal symptoms so, once you start, stick with it.

I have blood work still at every appt which is still monthly. Have had some odd issues so perhaps thats why. HOnestly, I prefer to have the blood work each time. He checks for differing things but at least I feel like I'm being watched. He said that, if my bone pain continues, he'll consider another bone scan. He was very clear "not checking for cancer but for inflammation" - okay...as long as they're checking me, I'm good!

Suzanne50

Hi Sloan - how stressful all of this is for you. I am sorry to hear. I would definitely get a 2nd opinion unless you absolutely love this dr and would never switch. I got lots of 2nd opinions when I was going through this process - I didn't agree with a few of my MO's recommendations. He eventually came around to agree with me after and came back with different opinions. I like him but I don't love him so if push came to shove, I wouldn't have problem switching MO at this point.

Anyway - my MO has me coming in every 3 months for bloodwork. As long as markers are fine I don't need any other tests. I asked about PET scans and he said not unless I have indicators that there is an issue. Honestly I don't know what marker tests he does.

I would ask around for another MO recommendation and get the 2nd opinion on the Tamoxifen. I doesn't hurt to hear what another dr. has to say about it. I would be uncomfortable taking 40 mg if everyone I knew was on 20 mg.

Keep us posted. We have all been through so much that we all deserve a break after 2015! I wish you the same. Who needs this stress? Cancer sucks.

lala1

Sloan--My dad is a doctor (retired now) who also many years ago started his own company which insures docs. It's now a national company. As a kid, I used to work summers there so I've learned alot of "info" on docs. When I was diagnosed my dad said I'm going to give you 3 important pieces of advice...1) always always get a second opinion 2)don't remove a healthy breast if you don't need to 3) never pay the first bill you get from the hospital/doctor/lab because they always make mistakes and are usually willing to discount for cash. All 3 of which have stood me in good stead!! He has seen every stupid thing a doctor can do and says if there is ANY doubt or question, to always get a second opinion. And if your docs get pissed, move on to the next one. I actually had this happen when my gyn said I needed a hysterectomy and was only eligible for an abdominal one. That just didn't sound right with me so I got a second opinion. This one said no problem with a laparoscopic hysterectomy. When I told my original gyn, she got mad that I was getting second opinions. I dropped her, moved over the second guy (who I love, love love!), had a hysterectomy last Jan, recovered in record time and am back to regular life without the worries of endo cancer from Tamoxifen. I also kept my healthy breast which I'm fine with and I received a $2800 biopsy bill from the hospital which had repeat charges on it. I challenged it twice and ended up paying $1200! So thanks Dad!!

As to blood work, I see my MO once a year for blood work and breast exam. My BS still sees me once a year for checkup and breast exam as well as he does my mammogram and then goes over the results with me immediately after so I don't have to wait. I also see my gyn once a year for my annual which includes a breast exam. My BS has me space all 3 out so I get a breast exam every 4 months. (My PS sees me every 2 years and no breast exam). All this works for me!

Loral

I was seeing MO for blood work every 3 months, he just now changed it to every 4 months. I have blood work and exam. I asked him about tumor markers and he said only stage 4 he uses that to monitor if treatment is working, he said for me it could show false positives????

Sloan15

All -Thank you so much. I am definitely going to get a second opinion now!

rleepac

Loyal - my MO said the same thing about tumor markers

lovetodance1

sloan, 5.2 is nothing.. Cea fluctuates every day.If your normal is around 4 or so, 5.2 is nothing.ca153 is better for breast..cea is metabolized in the liver and you just finished chemo which insults liver a lot. 40 mg of tamoxifen is insane..and is also metabolized in the liver. This slows down metabolism of cea...so it stays longer in blood... You only worry if it goes up a lot consistently... Again, 40mg is crazy

Suzanne50

lala1 - love your dad's advice. Especially the one about not removing a healthy breast. I really battled with this decision. My MO strongly recommended that I have a prophylactic mastectomy in 2016. I saw several different doctors regarding this and none of felt it was necessary. So I decided not to have one and I am being monitored with alternating MRI and mammo/sono on annual basis.

I disagreed with my MO on a few things. It is ok to question these doctors and you are right, who cares if you piss them off.

I certainly don't!