Bottle 'o Tamoxifen

I just had a partial hysterectomy (wasn't ready for full-on menopause, I'm only 40!) because of uterine fibroids... oh & not wanting to get pregnant but not being able to take hormonal birth control! Now I am glad I did, because it sounds like my uterine issues would get even worse!

I was a big Benadryl taker prior to Tamoxifen. I have terrible allergies (and it also helped me sleep on nihts when I had trouble). My oncologist said there is no reason to no take it, that it doesn't inhibit Tamox, but I have read in several places (including right here on BC.org) that it does. I think I am going for the better safe than sorry route & giving up my Benadryl, so does anyone have any suggestions for helping with: a) stuffy nose from allergies and b) the occasional bout of insomnia (less occasional, now, that seems to be my Tamox side effect!) without taking a sleeping pill?

Scorchy - that is wonderful news! Congrats!

Neti pot totally grosses me out! I'll try the claritin or zyrtec, thanks!

I wasn't sure if melatonin was on the "no" list, I'll try that as well, thank you!

I just heard of something and I'm wondering if any of you have experiences this: vision changes.  I have had such problems lately--particularly with nearsightedness.  I thought that perhaps it was just working with computer screens, but maybe not.  Anyone else experience vision problems with this little tyrant?

Scorch

smo23915 - I'm not sure what the source of your headaches are and it could be the brand you are taking.  I have read here that it can make a difference.  The manufacturer of mine is Teva and I have so few SEs it is not worth talking about.  I do have some warm flushes - it could be because of the Tamox or the simple fact I am postmenopausal.

I swear by my neti pot and use it in the shower several times a week.  I very rarely take any kind of sinus medication, and it keeps my sinuses from drying out in the winter.  It really helps with migraines if you are prone to that, too.  Just breath thru your mouth and do it in the shower.  Magic saline sinus rinse, yay!

My vision actually improved since before BC.  I thought my eyes had gotten worse because I could not see my PC screen, the TV, etc ... when I went for my eye exam I had gone from a -8.5 to a -7.5.  New lenses are great.  My eye doc knows about the cataract risk with tami and is watching that, too. 

well its been 3 weeks on tamoxifen and I am feeling so very down. I cry or feel like crying over anything. Its so silly at times. I dont even know why I feel this way at times. I was feeling great and now I am just down. I have never experienced such a depressed state. Nothing seems to bring me joy or even a happy emotion. I dont know what to do? Am I going to stay like this for the next 10 years? I sure hope not, I am not happy:(

Hi Dora - Im sorry you are having such a tough time right now - you have been through a LOT in the last nine+ months!  I started on Tamoxifen back in Sept 2012 and one thing that my doctor told me and that I have read on these boards is that sometimes some of the initial seeming "SEs" actually do settle down after a few months on the med.  You definitely should talk with your doc and perhaps even get some counseling r/t all the stress associated with a BC dx.  But - I would try those avenues b4 taking yet another med, as most come with additional SEs.  Meds can be appropriate, but just think it is important to realize that much of what you are describing feeling would seem understandable for all you have been through.  Coping tools might work and in the long run help you feel better than medication.  I wish you all the best and send big cyber ((((HUGS))))

Dora - Talk to your MO.  I know you probably don't want to add another medication to your mix but there are meds out there to help with the depression.  Don't let this go on for too much longer - you shouldn't have to live like this.  I am on an antidepressant for permanent nerve damange from rads and of course the added bonus is I am feeling better all over.

I agree with Sherry. For the first 3 months, I was a weeping mess of emotions. Luckily it does get better and seems to ease as your body adjusts to the hormone level. Still a tiny bit more weepy than I ever was previously but not the blathering mess I was at the start. Most SE's will ease after the first few months but talk to your doctor for anything that really bothers you. 

chris777



It's not the brca1 that dictates the tamoxifen, it's your hormone receptors. I am brca1+/ER+. Usually brca1 is triple negative but obviously not everyone. So if you were ER+ than take the pill. I was also told by my doctor that they treat you for your time of diagnoses, so even if you got ovaries out after you still take tamoxifen for a few years then switch to another hormone therapy,

Hi ladies.... I agree with Sherry....give it some time. I've been on the Tamoxifen for about 10 months now and the SE's definitely subsided after the first 4 months. I am also taking Biotin for my hair and nails...definitely helps with the hair and even though my nails are still horrible (I have to keep them short due to peeling) at least the no longer shred horizontally! The hot flashes are fewer and not as severe. What does seem worse is my mental fog.....can't remember things, people......turning off the stove, etc. that has me more concerned than anything else......especially since it seems worse now than earlier.

well, just a warning I need to vent....so, last night I'm talking with .....an extremely close family member (no not the hubby, don't know what I would do without him), and was told...........It's been 2 years already, your alive you need to stop already, enough with the sympathy stuff.  I tried explaining to this person that yes while it has been 2 years since I was diagnosed that it has only been a year from active treatment (chemo ended 1-9-2012 and last surgery was 3/6/2012)and that I was still experiencing side effects mostly from the tamoxifen and that I was sorry this was a inconvenience to them, and believe me I wish I have never gotten and become such a burden, I was trying not too.  Nice huh, that I need to defend my self.  Ok pity party over, guess I'll as I was told suck it up and just move on.  Thank you for letting me vent.  

Jill - I tried the AIs and could not handle them.  I know MOs want us postmenopausal ladies on  them but I beg to differ.  If I have to take one of these meds - I'm glad it is Tamox.  I have heard of way too many joint pains issues and such.  AIs are so hard on the bones and require annual bone density scans.  You don't need one with Tamox.  If you are doing okay on Tamox, I would say try to stay on it for the full course if you can.  On the  mental fog - it does stablize but in the mean time I have started writing more things down and referring to my lists more often.  I would like to say that is just part of getting older - LOL!  I will be 58 next month.

Yes, Ms. Trouble, vent away.....it is obviously difficult for so many people to understand that "finishing treatment" is not exactly "finishing treatment"... there are so many continuing issues to deal with and that basic fact of how we are forever changed. I sometimes think that such reactions from relatives and friends are a reflection of their wish to have the "old you" back, but wish people could express that in a compassionate way.



Since I've been on my tamox three week hiatus, I have started to sleep a bit more deeply, and have not had the regular stabbing pains in my knuckles. What I am mainly concerned about is how compromised my memory is, and hate the idea of returning to the meds knowing that it will possibly make that even worse.

My MO said that we could try an AI, (which she insists does not affect everyone with significant side effects)but my already existing joint pain leaves me fearing that I would end up feeling like I was a frail hundred year old! I know people on Tamox who consider it to be like a sugar pill, and was surprised to have so many side effects....I was wondering today if the fact that I tend to be allergic to many things contributes to my not so great reaction to meds such as tamox. I also made the mistake of looking up reviews from patients on some of the AI's .....yikes! Probably was not a good idea.



This may be totally unrelated (I don't want to be a total Tamox basher!)but over the past couple months, I have developed a tendency to get cankers in my mouth, and have a generally sore mouth, gums, tongue, roof, despite my attentive oral care habits (I googled sore mouth and saw some articles that suggested in post menopausal women this can happen, due to shifts in estrogen.....who knew?).It makes me feel really unhealthy...and I dread adding another doc to my list (e.g. periodontist). Interestingly, in my last MO appt, she asked me about any sores in my mouth (I had woken up with a new set of cankers that day). She looked at them and didn't seem surprised but said nothing more about it. So, since they are continuing, I will ask her about any connection the next time I talk with her. Sorry to be such a complainer about symptoms. It is just so frustrating and a difficult new normal to adapt to.

Jill, I don't see what difference it makes what antihormonal one is on as long as we take one.  I wouldn't even consider giving a second try.  Some MOs don't want to hear about joint pains, hot flashes, etc.  The problem with all this is, most of the MOs don't have a clue what it feels like to take these drugs.  OK!  I can climbing down off the soapbox.  Thanks for listening.  Just had to vent a bit.