Bottle 'o Tamoxifen

stage1

I also went through itching when they sent me Teva brand instead of Activas brand. Now I am on Activas brand Tomoxifin only. I must have been allergic to a filler.

daisylover

Stacie, I have a history of migraines as well. They were controlled and only occurred monthly at the beginning of my cycle. When I began a trial of Palbociclib, 4 months after starting Tamoxifen, they were triggered and became almost daily again. When I came off the Palbociclib, they did not go away immediately. However, since my oophorectomy 2 weeks ago, I have not had a migraine!!

My migraines were quelled by the drug Midrin -- I really only needed to take 3 pills at the most. It is Acetaminophen with a sedative and caffeine, I believe. It worked like a charm for me... My neurologist uses it for many women with success. (I tried a lot of other drugs with my PCP prior to seeing this neurologist who specializes in women's headaches.) She also prescribes Gabapentin for me for prevention -- it's a seizure drug as well. It helps with hot flashes and nerve pain post mastectomy too! Both Midrin and Gabapentin are fine with Tamoxifen...

Good luck! I know from personal experience that migraines can be debilitating... also, everyone's remedies are unique... Just like breast cancer... I remember being in a difficult dark place with daily migraines - I feel for you. {{{hugs}}}

katcar0001

Stage1 - That is so interesting about Teva, and I am glad I saw your post. I was switched to Teva recently, and the past few days I have been scratching my skin almost raw. The weird thing is--I don't really see a rash or any bumps. But I itch like I have fire ants running all over me--trunk, arms and legs. I will ask my doc if I can switch back to the other brand. Thanks for passing on the info.

stage1

Yes, my itching was more under the skin. I could feel kinda like little cysts under the skin, with very little surface irritation. Weird. Glad I could help.

katcar0001

I looked under better light with my strongest glasses, and you are right--I can see tiny cysts! Did yours resolve when you changed brands?

katcar0001

I looked under better light with my strongest glasses, and you are right--I can see tiny cysts just under the skin! Did yours resolve when you changed brands? Where did you get Activas?

stage1

I have Kaiser, they gave me Actavis for the first supply, and then Teva for the second three months. It only took two weeks on Teva to realize I needed the Actavis. See if your pharmacy is familiar with Actavis. If not, just try a different brand. I also felt a nausious empty feeling in my stomach with Teva

katcar0001

I will see if I can get it in Mexico; if not, I will get it when I go back to CA. I switched back to a Mexican brand today--Taxus--to see if that makes a difference. My doc in the U.S. didn't want me on the Mexican brand as he doesn't trust it, but it's maybe better than nothing? I can get Nolvadex here (but not U.S.)--may check into that but it is pricey.

cattywompus

Hi all,

I've been on tamoxifen for about a year and a half now. I did notice after the first few months a little bit of the hot flashes but I call them warm flashes because they aren't too bad. For me the dryness is worse and to my surprise my back is breaking out like I was a teenager. Even when I was a teenager it never broke out! Does anyone else have this problem? I also suffer from migraines and use topamax daily. The last few months I've noticed an increase in headaches so I think my doctor will have to increase my topamax. I see my oncologist soon so I'm curious what she has to say about the changes going on.

Blownaway

I'm curious....some of us on Tamoxifen have dryness down south and others have a discharge.  Do those of us who have had a hysterectomy (like me) have the dryness and the ladies who still have ovaries/uterus have the discharge?

katcar0001

All my parts are intact. I started out with dryness the first month or so. Now I have discharge.

lala1

I've been on Tamoxifen for 2+ years and had discharge pretty much from the beginning. I am now 2 months post hysterectomy with ovary removal and still have discharge. My gyn warned me about dryness but so far, so good. Hopefully the Tamoxifen will keep the dryness at bay!!

MagicalBean

I've been on Tamoxifen for 2+ months, I'm 67, and my lady parts are crunchy.

Mommato3

I still have my uterus/ovaries and have the dryness. I'm still in Chemopauseso I'm not sure if that could be part of the problem.

cattywompus

I still have ovaries & uterus, only had an ablation done. I'm dry and I have discharge. It does seem like the discharge is a tad less than when I first started the tamoxifin 15 months ago but maybe I'm getting used to it.

Stacie13

MagicalBean, I read your post and I choked on my coffee. That made me laugh!!. I know it's not funny, but your comment "crunchy" is a hilarious description!

IDartist

I had a total Hysterectomy and between that and Tamoxifen, feel like a dried up prune. No discharge, actually some would be nice because it is so dry down there, it makes sex uncomfortable. We used lubricant and that helps some but it also feels extremely tight, just uncomfortable. Since I had a DM as well, I have no breast stimulation and sex is just something I go through now - no enjoyment or orgasms for me anymore. All it is, for me, is a bonding time with my husband and I go through the motions. I feel sad that I fake pleasure because it is no longer is for me and I want him to still enjoy it. With no breast sensations, no uterus, hormones, etc., I really don't have a sex drive anymore and would be just fine if I never had to do it again. Depressing.

CAS4

Annie88 it's a powder you mix with water- gosh so sorry for the delay!!!

CidneyI

Ditto for me on what cattywompus said. Can anything help with the discharge? My oncologist suggested to use a produce called Replinse for the dryness. You have to use this product everyday and not just on a when needed basis. I have to admit, its not a cheap product but might be worth it to some. OH, I have absolutley zero sex drive - I call it my, "beige, I think I will paint the ceiling beige" moment.

GirlPowerDebbie

Daisy - the Vagifem helps with the yuck, and the discomfort.  I have a mental image of my dry, sad vaginal walls rubbing together like sandpaper.  At least, that is what it felt like.  No wonder it was weeping - it was sad!  Seriously, between the blue pills for hubby and vagifem PLUS lubricants ... you just don't know how great spontaneous sex is until it is impossible.  Now we plan for everything and make dates for sex so we can both "be prepared"!  Funny  ... but then not really funny at all.

Gabapentin helps a lot with the neuropathy. 

Tamoxifen kills your sex drive.

Statins (for cholesterol) make your legs hurt.

So buy a ticket on the pharmaceutical train, and treat side effects with drugs that present their own set of SE's - and pretty soon you don't know what causes what. 

Sometimes I take a break from my Tamoxifen to feel normal, if I have an event coming up - vacation, when my oldest son got married, etc.  I always get back on, but sometimes stopping makes you realize how much discomfort and inconvenience comes from that little white pill.  It's a chance I take.  I have lasted 3 years on it, not sure I can do 5. 

So my family doctor retired, and I had appt with the new doc Monday.  I handed her 4 pages of notes - history, treatment, SIDE EFFECTS ... yes, I thought I sounded whiney, but having to dump all that out in 30 minutes was like a race.  Here I was begging for PT for my legs and maybe an appt with a podiatrist to look at my right foot ... what did she focus on?  The frickin' prescriptions!  I take a tiny dose of both ambien and zoloft at bedtime.  And asking for a small Rx of Vicodin for when the pain in my legs does not respond to Aleve ... forget that.  I had to sign a release saying I would not sell my drugs (like somebody wants to buy an Ambien) to others, would always use the same pharmacy, and be subject to random drug tests.  This just seems over the top (I live in Ohio). 

Thanks for listening to my rant today ...

Cheers ladies - enjoy spring!

Deb

gemini4

"Tamoxifen kills your sex drive." I hate that this is true for anyone, but I don't think it applies to everyone. I'm 50 and going through menopause. My drive isn't as strong as it was decades ago, but it's definitely not dead yet! We find that coconut oil helps a lot with dryness, and it actually enhances sensation for both my DH and me. It's messy, though, so keep a towel handy! ;-)

I hope that any of us whose sex drives are limited by medication will experience this as a temporary thing. :-)

katcar0001

Well, I think I have some more side effects kicking in. Haven't really noticed a drop in the sex drive any more than it was prior :-), but now I ache. My legs and my arms are the worst. Since my lumpectomy a month ago, I have had arm pain on that side that feels like "sciatica of the arm." I guess that is neuropathy? I wonder if it's the Tamox, after-effects of the surgery, or the two combined. The only thing that helps is Gabapentin but it makes me feel a little weird. I dump out some of the capsule so only taking half at a time.

So that makes aches/pains, bumpy/itchy skin and vaginal discharge, oh joy. I will switch to Nolvadex and see how it goes.

MarieBernice6234

Hi Sjacobs and Lolis -

I don't seem to have any clear pattern of hot, or warm flushes (I take Effexor so the flashes aren't as powerful). Sometimes at night I do get warm and have to put the ceiling fan on,

MarieBernice6234

Annie88

Week 3 on Tamoxifen as of today. I tried to refill it w/ another RX, however my insurance won't all me to pick it up until Saturday. I guess they are afraid I will sell it on the black market.

mhenz

3 weeks on tamoxifen and the nausea and headaches are out of control. Anyone else experience this... did it get better. Dr. Gave me another pill...oh joy. Has helped a bit with nausea but the headaches are killer. Had to leave work. I have definitely have not lost my sex drive. This dx has my husband and I like when we were dating. I dont want to lose that. I love getting on here and finding out the real scoop the dr. Doesn't tell me.

gemini4

katcar, I don't like the sound of your arm pain (don't worry, not because I think it's related to more cancer). I think you're an excellent candidate for post-surgery physical therapy. Can you get a referral from your doctor to see a specialist? Since you had some nodes removed, it's always a good idea to see a PT who has experience in treatment/prevention of lymphedema. (not that I think you have LE, either! From what I've learned on these boards, it's always a good idea to be proactive with keeping it from forming in the first place.)

katcar0001

gemini4, You are so sweet. I didn't have lymph nodes removed on the right side as the tumor was benign. It is weird that I have pain on this side because the surgery was much shorter than the mastectomy, and I did not have pain like this. A nerve got pinched or something. I do find typing makes it worse, so I am going to try to take a break from the computer today.

I have an excellent P/T, and it's time to make an appt and go so her. Thanks for the concern!

I see you had a similar Oncotype and did not have chemo either. I wish that the TailorX results would come out!

fralaliso

mhenz, sorry to hear about your headaches and nausea. I started taking Tamoxifen just over 3 weeks ago. So far, no real side effects (some slight upper back soreness the last few days, but have no idea if that is due to Tam). I've heard others on these boards say that SEs varied depending on the manufacturer of their Tamoxifen. Perhaps worth talking to your pharmacist to see if they can try another manufacturer for you? Mine is made by Actavis (formerly Watson).

MagicalBean

Thanks Stacie. I guess we might as well laugh about it. I tried whining but nobody pays attention.

GirlPowerDebbie

Here's something too.  I now have my doctor prescribe only Teva's brand of Tamoxifen.  Two times I have been given a different brand, and BOTH TIMES I ended up with what sure seemed like a urinary tract infection.  So now we stick with the Teva.   

D.