Bottle 'o Tamoxifen

superius

Maybe it's because of age / menopause status? One of the question my MO asked when I first saw her was, if I had any plan to have kids in the next couple years & the possibility to preserve some eggs before chemo. (I will be 43 end of March)

lala1

twiggly---I am always happy to answer any questions! I had a total hysterectomy and ovary removal last January after having been on Tamoxifen for 2 years. About a year + into it, I asked for a baseline TVUS just in case the Tamoxifen caused any changes. I wasn't in menopause and according to my doctor nowhere near menopause. That TVUS showed that I did have some mild issues like a slightly thickened lining, ovarian cysts, fibroids and a slightly enlarged uterus. My doc and i agreed to a watch and wait mode. I had a TVUS about every 3 months, each time showing a little more. Finally my doc said you endo lining is getting into the territory of possibly being able to become cancer and I said let's do it. Best decision I made! I feel great! Yes, I went into surgical menopause which is supposed to be worse but I wasn't in menopause before so really I have nothing to compare to. I started getting hot flashes and night sweats after about a month. I'd get about 15-20 in a 24 hour period. They weren't dripping wet hot flashes and I'd have to do the covers on/covers off a few times a night but doable. Then my MO told me to try iCool which I buy from Walgreens or Amazon. Made a huge difference. Now i get about half a dozen in a 24 hour periods and they are much shorter and milder. I can totally handle them. I struggle to lose weight but haven't gained any. I go to the gym, ride horses, do yoga, whatever! And the recovery was so easy. Mine was done laparoscopically so 3 tiny incisions. One night in the hospital. Only Tylenol when I went home. No pain meds after day 3. Started walking as soon as doc said ok which was day 3 for 30 to 45 min total each day. I was driving at about day 6 and in the gym going easy once my doc cleared me at 2 weeks. Easiest surgery I did of all the BC stuff! And so glad it's done and I've reduced my chances of BC as well as all the reproductive cancers.

Trvler

I don't think it is correct that just because you don't have SE's, it is not working. I think it just has to do with your body chemistry.

KateB79

My MO has this plan for me:

Tamoxifen alone for six months; then Tamoxifen and Lupron for about a year. Then we evaluate whether to switch to an AI and/or consider ooph.

She does it this way because, if we were to do it all at once, she said it would be a lot more uncomfortable for me. She's all about keeping us comfortable, which increases our compliance. A lot of women quit their endocrine therapy, and that's just not an option for me!

I'm allowed to take vitamin E; in fact, my MO recommended it for chemo-induced hot flashes ...

Peachy2

I had a follow up visit with my MO today and discussed vitamin E. She said it is fine, though did caution me against the standard recommendation of calcium supplements. She said that at my age, and because I am on Tamoxifen and not an AI, there is newly more concern about calcifications in the heart. (Like I didn't already have enough to worry about!)

jbokland

they can draw serum levels to determine how you are metabolizing Tamoxifen.

Scottiemom11

KateB. . .I will have to look into vitamin E. . .had not heard that it helps SEs. I'm taking lots of supps. As for lupron, I had major fertility issues and my ds was in vitro which required a month of lupron before the fertility drugs. So I already knew lupron did not agree with me. MO and I discussed it and I agreed to try because I have a history or ovarian cyts and Tamoxifen increases the risk of them. After 7 months of lupron spread over 10 months I appear to be in menopause. Fingers crossed because I could not tolerate the lupron any longer. I am on Tamoxifen for 10 years planned.

Scottie

KateB79

Welp, I'm three days in and my hot flashes are back. In a way this is good--it means the Tamoxifen is doing something. But in a way it really sucks, too, as I was getting used to sleeping through the night again. . . .

Who takes melatonin? I've been taking 2.5 mg every night since I started chemo. Anyone taking more than that?

Trvler

I started taking melatonin about 3 weeks ago. I take 3mg. It does seem to help me but I am also taking .12 mg of Xanax. The only thing keeping me awake is the chills that I keep experiencing. Hard to sleep when you can't get warm. I want to stop the Xanax.

ksusan

My ND (with agreement from my MO) has me on 20 mg of melatonin.

Scottiemom11

I used to take 3mg melatonin. Have bumped that to 5mg and added turmeric. I sleep better when I exercise each day and eat a light dinner w/ no spices, heavy fats or fried food. I love Cajun food. . .Zatarains etc. I can't eat any of that for supper or I will have a miserable night.

Scottie

TinyDancer5

I take 3mg of Melatonin 1 hour before bed. It works great! Yea I have a couple of hot flashes while sleeping, just throw the blanket to the side and pull it back on when I'm cold.

I'm having a problem with my nails behind very thin, bendy, brittle and splitting. I put strengthener on them, but no luck. I have noticed being on Tamoxifen (Watson brand) that my skin is very dry.

twiggly

Lala1 Thanks so much for responding to my question. I feel as though my MO is being very aggressive to want to remove my ovaries but I also feel like maybe If I have the surgery and stop the production of estrogen that my recurrence rate will be reduced, even though Im not really at high risk. She said its the long term that would benefit from removing them now......sometimes its just so hard to know what to do. *sigh*

ayr1016

I can not take melatonin because it gives me strange dreams (sometimes nightmares). However, a dr. recently told me that some of her patients who had the same problem (strange dreams/nightmares) started taking the gummy melatonin and that it worked better (no strange dreams). I am not ready to try it (but my daughter is going to try it as she gets nightmares from them too).

I am doing neoadjuvant hormone therapy (Tamoxifen and monthly Lupron injections) and at my 4 week check up (4 weeks from starting Tamoxifen) my tumor was softer and flatter (as opposed to a ball). I will have a scan soon. I have not (so far) had any hot flashes. I get cold chills. But, 5 now weeks into taking Tamoxifen, I honestly can say I have to try and find the lump. When I found it on December 15th, there was NO DOUBT about it. It was there and there was no missing it. If my tumor (in December) had felt like what it feels like now, I would not have thought it was anything (how scary!). I was very scared to do neoadjuvant hormone therapy because I just wanted this thing out of me. But, it makes me feel so much better knowing that we have evidence that the Tamoxifen is working. I hope this helps others who are taking Tamoxifen feel more confident that this drug works.

Blownaway

What are the dosages of Gabapentin that most of us are taking? I take 600 mg. every night plus Tramadol for pain associated with Tamoxifen and also chemo induced neuropathy. I havent noticed that it helps with hot flashes at all.

Blownaway

I was taking 10 mg of melatonin, plus a benedryl at night to help me sleep but it stopped working for me. Might revisit that regimen.

Blownaway

tinydancer _ ditto on the thin slitting nails and dry skin.

katcar0001

Blownaway - You might want to check with your doctor, but I believe that Benedryl is contraindicated for use with Tamoxifen. I think on occasion is okay, just not nightly. I am the poster child for dry skin since starting Tamoxifen (used to be oily).

MomOfTwins98

BlownAway - I take my gabapentin in three doses throughout the day - Now up to 300 at 5am, 200 at noon, 300 at 7pm. I was told that it should be divided up and to titrate very slowly, both up and down, as you can get SE if you rush it. When I increased to 300 at night, had some odd things happening with memory, word selection, confusion. Had to stay at 200 for several weeks - I do hope this is as high as I need to go.

As far as Benadryl, please check that out as that is one of the meds I was warned about when starting and it is clearly mentioned in the Tamoxifen literature as a medication to avoid while on Tamoxifen. They have the medications divided into "high" "medium" and "low" and Benadryl is a "high" as contra-indicated. Just check...better safe than sorry in my opinion.

Scottiemom11

Tinydancer. . .I too have paper thin nails and they used to grow like crazy and be strong. ayr1016. . .I'm currently waiting taking 5mg of gummy melatonin. I think it works faster. I tend to have vivid dreams anyway though.

Katcar. . .my skin has also gone from oily to dry.

Scottie

Blownaway

My onc never said anything about the benedryl. Do they pay attention at all or are we just like Charlie Brown's parents????

jojo9999

ayr1016,

Thanks for sharing. It is good to hear examples like yours about how tamox actually works! I hope it continues to shrink. How long will you take it before surgery? are you planning a lumpectomy?

MJS1266

I was told by my MO that Benadryl interferes with tamoxifen being metabolized. In fact, this was the only over the counter med that she told me not to take.

ksusan

From drugs.com:

Interactions between your selected drugs

Major

diphenhydramine tamoxifen

Applies to: Benadryl (diphenhydramine), tamoxifen

When used regularly or continuously for extended periods, diphenhydrAMINE may reduce the effectiveness of tamoxifen in the treatment of breast cancer. Talk to your doctor if you have any questions or concerns. Your doctor may be able to prescribe alternatives that do not interact. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Other drugs that your selected drugs interact with

• tamoxifen interacts with more than 200 other drugs.
• Benadryl (diphenhydramine) interacts with more than 300 other drugs.

Kimmer33

hi ladies

I have been on tamoxifen for 5 1/2 weeks now, and the last couple of weeks i have experienced super dry skin as well, and reading this forum realizing it's most likely from tamoxifen as i have always had oily skin. What are you doing for face moisturizer? I would like to find something that works better than the Bio-Oil i cutrently use. Thanks!

jojo9999

thought i would add to the Benadryl-tamox discussion - the same active ingredient in Benadryl is in Tylenol PM (and probably in any of the "PM" products - to make you sleepy).

JerseyGirl22

Well, after the docs see-sawing for a few weeks here, I've jumped on the Tamoxifen train... She wants me on it for 3 months, as my numbers for everything say I'm in menopause, except that my estradiol is still high... took my first pill on the way home from the pharmacy...off we go!

Praying for few side effects...

ayr1016

jojo9999 I will do the neoadjuvant therapy at least 3 months prior to surgery, but it all depends on how fast it shrinks. She wants some tumor left so they can send it to the lab to see how fast the cells are multiplying, etc. I do not see it shrinking to nothing in 3 months, but I am not sure I could (mentally) keep going past that (possibly 4 months max). I'm learning patience lol. I will be having a lumpectomy.

Scottiemom11

ksusan. . .I checked the link you posted and noticed that the majority of meds listed as high on the interactive chart include generic benadryl. That's good to know.

Still trying the turmeric. Not sure if it's helping.

Scottie

ksusan

The drugs.com drug interaction function is at least a place to help generate questions for our MOs.