Bottle 'o Tamoxifen

mumofone

ali68 - hello! The friendly response on this forum has kept me going this past few months. I hope you're feeling well .

Too early to say much but I did get a headache last night after my first (tiny) dose. May have been coincidence... 

RunFree16

Mumufone, I bet it was coincidence.  My doctor told me that side effects usually start up at about the three-week mark, or somewhere from two to four weeks.  I found that quite comforting.  It suggests the pill isn't some alien force that will immediately take over.  (I know that fear was a little irrational.  The cancer was an alien force.  The pill is on my team, cancer-wise.  But I'd gotten myself freaked out about the pill.)  I'm still in that honeymoon period, two weeks today, and I feel fine.  I had some mildly achy muscles one day, but there are other explanations for that. 

I don't know how you are all determining what manufacturer made your Rx.  My pills are in a plain pill bottle, no manufacturer listed.  I could ask the pharmacy, but am I missing something?

mumofone

RunFree16, thanks for that... you've put my mind at rest too . I'd read that it takes a while for the drug to build in a person's system but had forgotten about that, in my nervousness about taking it!

My tablets came in a branded box, and then blister packs with the brand name on. I did read somewhere that the tablets themselves might have a number on them that relates to the manufacturer? I haven't looked that closely at mine yet.

RunFree16

Thanks for the suggestion Mumufone!  I checked my pill and found the code 93 782, which I then learned from this website is Teva brand: http://www.drugs.com/imprints.php?action=search&drugname=tamoxifen

In the course of searching, I also found this BCO thread that was quite uplifting:  http://community.breastcancer.org/topic_post?forum_id=78&id=802604&page=3  Some of the same people comment there as on this thread so I know this isn't a really hot scoop, but it was new to me.

mumofone

RunFree16, how are you getting on? Thanks for the link to the other thread... I hope to be able to post there myself in a few months time

Just over a week on the tablets now and starting to feel achey in my hips/abdomen. Feeling grumpy, too. But very early days and this could be totally unconnected - getting back to a new 'normal' might well be the reason instead!

Edited to add: my period just started, a week early!!! It explains why I've been feeling the way I have :-). Could tamoxifen have brought it on, or is it likely to be unrelated (just pre-meno)?

Mardibra

Ive been on tamoxifen for just about a year.  Mylan brand from CVS.  A couple of months ago they changed to Watson and I thought nothing of it.  However, I cannot get through a day without taking immodium or pepto bismol.  Miserable.  I called CVS to see if they could get the other brand back and they said they would try. But from reading here, the manufacturer is this issue.  Damn!  Ill ask for another brand....this Watson stuff isnt going to fly!

Anonymous

Mardibra,.. Who'd think the brand would make such a difference in SE's? But it appears from these discussions that it does.....could it also affect the effectiveness? I'm on TEVA brand and have never had any nausea issues,,,,,just the common night sweats, nail and hair issues, and they've been manageable.

Mardibra

Chachamom - no kidding huh?  I have been pretty lucky with the T side effects...pretty mild.  But since the brand change?  Whoooaaaah.

RunFree16

Thanks Mumufone!  Today is three weeks and I still feel no discernible side effects.  Mardibra, thanks for the heads-up about CVS. 

jo1955

chachamom - I've been on the TEVA brand for 2 1/2 years and have had very few side effects.  I have been off it for almost 3 weeks now and can definitely tell the difference.  Unfortunately, I have to go back on it once I have my hysterectomy on Jul 13th.

RunFree16

Jo, that's encouraging about your experience with Teva--but you do have the uterine side effects, no? 

jo1955

RunFree - As a matter of fact I do.  I am having a hysterectomy on Jul 13th.  I want to have it done last year but I decided to have reconstruction instead.  Now, it has come to the point that I don't have an option.

Anonymous

Jo, I'll be in your pocket on the13th!

Gertrude

Question for you ladies.  I started Tamoxifen about 45 days ago.  My only symptoms seems to be related to my cycles.  I was having normal periods every 28-30 days.  I've never had cramps.  Now I'm still having a very very light version of a period but I'm having cramps that started about 10 days before period and lasting.  Is it the Tamoxifen?  Should I call my OBGYN.  I'm so worried about getting uterine cancer.  I would imagine as light as the two periods I have had have been they will stop altogether at this pace. 

Anyone having similar issues?

RunFree16

Gertrude, the odds of getting uterine cancer on Tamoxifen are still very low, and it's early yet.  I would wonder, though, about ovarian cysts.  Those can form within a month and I think they are more common on Tami.  You should call your OBGYN now if you're quite concerned, or you could start tracking the cramps and your cycle for another month to get more information and then call.  Good luck and let us know.

Today felt like a milestone for me as I started bottle #2, made it seem more routine and less of a brand new venture.  Long way to go, I know.  So far my only side effects appear to be heightened appetite--I've fought it to a draw up to now, but it's tough--and a little bit of memory loss, which could also be from radiation and the general chaos of the last 6 months.  My MO said the particular side effects I was most worried about would probably show up by 4 weeks if I was going to have them, so I am encouraged.

Gertrude

Run free



I'm going to keep a watch on things and track my cycles. I started doing that two months before taking tami. I have also had my exchange surgery in June so who knows what's causing all the craziness with my periods.



I'm glad you are doing good. This has been my only issue plus some major PMS before my period. I'm going to try to change my diet to see if I can offset some of the PMS. With this period being super light I may not have them anymore who knows.

RunFree16

Good tracking Gertrude!  The surgery is another factor to consider.  I was unsure where I'd be with periods too, because I was on the pill until I was diagnosed in January, and I'm 49.  I'm getting them, but of course less predictably than when I was on the pill, and a shorter cycle.  That's weird because before the pill, my cycle was very long, like 35 days.  It is gradually lengthening now but it's still less than 28 days.  I hope your problems ease up.  PMS and cramps are no fun at all even aside from being concerned about what they might mean.

Lezza13

Thought I would chime in here.

Been a year on Tami and the SE's are liveable.  I have to admit I did not know what the balance issues where but now I know. The only other SEs is the added inflammation in my joints, sleep issues and the night sweats.  The joint pain has gotten better over the months. Don't want to switch to Armidex because I heard it the pain SE was worse

  I am post memopausaul (Chemo stopped the periods)  so I don't have all the night sweat, PMS issues you ladies do. Or the crazy cycles.  I would keep track of those just to see what is normal. MD said if I every had a period, I had to see him pronto

For sleep issues I have taken Melatonin to sleep, 3 mg before and that helped.  I am on restoril, not ambien and I sleep well. 

Best of luck to all of you and hang in there.

tenaj

I have been on tamoxifen for 13 months now with tolerable side effects. (Night sweats, weight gain, hot flashes) my question is this......is common for the joint/muscle pain to start after 1 year. Lately I have been very achy & have significant knee pain that I didn't have before. I had similar pain when I tried femara first. I felt like on old lady & didn't want to live that way so the MO switched me to tamoxifen. Is this a pain cycle that will go away? I question how much the medicine is doing for me....any suggestions? Any supplements work for anyone?? Thanks for any input.

Lezza13

tenaj: Tamoxifen seems to only hurt in the evenings and when I first wake up.  I think once the joints get moving, it forgets about the pain.  You should be happier on this one.  I can't think of a supplement.  I try to do yoga and take advil as needed.

mstrouble16

I use Flex-A-Min I get it at Walmart it makes the bone and joint pain much more manageable during the day

Doragirl34

Been on tamoxifen since 2/2013 and got my first period since chemo in June and 19 days later in July and now 12 days here it is!!!! So annoying! And it's weird nothing like my old periods.....what's the deal?

I had a normal pap in May, see a gyno specialist in Aug for a transvaginal ultrasound, I guess that's a recommendation for not just tamoxifen takers but because I'm brca1.



Anyone relate?

josie123

Ok I just took my first pill this morning at 9am.

I've only had that bottle for like a month and a half.I finally decided to take the plunge.I'm sure it will be pretty much non eventful but I have to at least try it and see what happens.I got myself so freaked out about it.My friends gentle persuasion helped me to finally do it.I tend to be the stubborn type.I'll let you know if I have any problems.

jo1955

Doragirl34 - I can't help with the issues of periods since I am post menopauasal but I do know it is a good idea to have a transvaginal ultrasound.  I have been on Tamox since Jan 2011 and since then have had 2 biopsies/D&CS - the second one also involved having a uterine polyp removed and was negative.  Experienced post menopausal bleeding in June and had to have a hysterectomy on Jul 13th.  At 58, the recovery is much harder than I thought it would be.  This all really sucks.

With all that said, I haven't really had any other side effects and certainly don't want to scare anyone else who is just starting Tamox or is still trying to decide whether to take the little white pill.  I'm sure my case is the exception and not the rule.

josie123

Jo, hope your recovering ok from your surgery.I had a hysterectomy in2011. I had some complications afterward due to heart problem but finally did ok.Listen to your body and don't push yourself too much.

jo1955

Thanks Josie - I had a few complications during surgery but the doctor did get me through those.  I also had to end up staying the in hospital an extra day which did not set well with me at the time.  I so wanted to go home.  Unlike the other surgeries I have had related to this damn BC, I am taking it a lot slower this time.

Doragirl34

Everyone is different. Thanks for the reply Jo. I knew you were having the surgery and haven't seen you on here, so I'm glad your ok. Sorry about the recovery, but at least it's done. All in all I have pretty much zero side effects, I'm happy about that

jo1955

Doragirl - I had my computer in the hospital and haven't much felt like being on the computer lately.  Cabin fever is really starting to set in.  Yes, the surgery is done and I am back on Tamox - so far so good. BTW!  I'm originally from Riverside, CA.  I see you are in CA yourself.

Lezza13

jo1955- glad your surgery went well and you are recuperating.  I know about cabin fever too. I just had my impants removed and no reconstruction. Have not been out for a week! BTW I am just about your age. I am from Los Angeles and now in TX.  My cousin had a hysterectomy in her early thirties.  I have not had a period in years so  I am just anticipating one of those. Oh, well.  You are on Tami and not Armidex. is there a reason?  My ONC is asking to switch me and I told him no way.

josie123- glad you finally took the pill.  That was the hardest starting it and I have been on it over a year now.  Hope the SE's are minimal and you do well on Tami.

jo1955

Lezza - My MO first started me on Armidex - super nauseated.  Switched to Femara - same thing.  Then Tamoxifen.  Other than the uterine issues, the SEs have been minimal.  If Tamox is also working for you then why switch?  I agree with you, stick with it and do your time.  Where in Texas are you?  I am in deep South Texas down my the Mexican border in a town called Donna.