This Tamoxifen sucks!

jancie

Thanks for the responses on the dizziness.  I had another bout of it yesterday when I was standing in the kitchen.  Needless to say I went to bed and stayed there.

I am on TIVA brand - that is what I got from Caremark.  I don't know what brand I was on before when I was getting refills at Target.  I do know the size of the TIVA pill is larger than the other pill I was getting. 

I usually take it late at night around 11 pm.  I have a hard time remembering to take pills in the morning and that is one I don't want to forget to take.  I even have that multiple pill box and will forget to take my medication.

eulabt

jancie, sorry about your issues with the dizziness. Mine was terrible and I could not function.

Kaara

jancie and eulabt:   I had that once and I took one of my seasick patches, cut it in quarters and applied one quarter to the back of my ear...it worked!  Also works for nausea.

vettegal

I get about 2 hot flashes a day now. Especially right after I take it. Still get those chills. Bone pain is al out gone, I joined a gym. Going to take care of myself now. Lost my job! What a shock.

Smithy

Just wanted to throw this out there - not that it pertains to me (my discomfort/side effects have been completely Tamoxifen based lol) - I know for many of us we have had to switch up our birth control to being "hormone free." We all know that it is not a good idea to get pregnant while on Tamoxifen. My obgyn suggested I get the Mirena IUD. I did a little research - found out that Bayer (Mirena IUD) has listed in their patient info packet that if you have or had cancer you are NOT to use this product. How could my doctor even suggest I use this product. Long story short - hop on over to the "Mirena IUD?" forum board. I posted some info on the Mirena IUD. After hours of research I had learned that Bayer mentions the side effect Alopecia (condition of hair loss - complete baldness), along with other side effects... only in their physician information packets. NOT in their patient information packet. Doctors are continuously denying that side effects such as Alopecia are caused by the Mirena IUD. Bayer says it does. Doctors say it doesn't? Are they not reading their packet? Are they skimming over the patients' info packet instead? Serving as a form of "Cliff Notes." When I read that Bayer was not listing side effects...in the patients' info packet only the physicians - I needed proof. I read both documents myself. Sure enough - it's true. There are three class action law suits forming because of Bayer's intention of misleading costumers through their omission of side effects. Alopecia was not listed in the physicians info packet for 8+ pages (section 6.1) Do you know anyone with Alopecia? Ask them if they have the Mirena. I called my friend who has Alopecia the very next day. Her doctor was so wrong. Even told her that the Mirena does not cause Alopecia. Letting her believe that it was the birth of her last child and stress that was the cause of her Alopecia, depression, loss of libido, irritability...She had it removed that Monday. Her hair has started to grow back! First time in three years! She is feeling happy...like her old self.  From what I have found from my research - women who have the Mirena IUD inserted post child birth - and breastfeed (like my friend) seem to develop the common, and extreme side effects. Side effects which seem "normal" like PPD..."baby blues" - when it is not - it's the Mirena IUD. Several of the woman on the "Mirena IUD?" forum board have posted that they believe the link with Mirena to their breast cancer. Many I noticed  posted that they had the Mirena IUD inserted post childbirth, and they had breastfed.   

The Mirena IUD can cause irritability, loss of libido, hair loss, depression, anxiety....and many, many more side effects. Side effects that Tamoxifen also shares. Now let's say your obgyn suggested the Mirena IUD, and you have it inserted right around the time you have started on your Tamoxifen (that's what my doctor was suggesting).  Who is to say you are not one of those lucky people who CAN tolerate Tamoxifen well? What if you are experiencing the side effects of the Mirena IUD. Just something I want to throw out there. It might apply to someone - or someone someone knows.

My Tamoxifen side effects were harsh. I had been on the Tamoxifen for 4+ months. Crying for no reason...hot flashes, fatigue, anxiety, a whole mess of side effects. My oncologist took me off of the Tamoxifen for a little over a month. I was so much better. Happy, back to myself. Then she started me on the generic for Effexor 4/9/2012 (Costco has it cheap), four days later I was started back on the Tamoxifen. I am not feeling any of the Tamoxifen side effects. I also went to an integrative medicine MD. He put me on mushroom supplements (energy), vitamin D, fish oil, a multi vitamin. So far so good.   

Patriotic

Thanks for all of the good info.  I was on Tamox for 4 months before starting the Zoladex.  I did not experience dizziness until then.  But, I did divide the dose (10 mg morning and night) because I read on these boards that it might help with SE's.  And, I didnt have any noticeable issues with Tamox. 

For any of you that switched your Tamox manufacturer from Teva to Mylan, what is the consensus?  Is the latter better as it pertains to SE's? 

Ruth2011

I would love a list of what you take to lessen the side effects of tamoxifen. Thank you.

chemoangel

If you are bothered by constipation during treatment. Try eating 10 dried apricots with a tall glass of water. Guaranteed you won't get through half of them before running to the bathroom. It truly helps a lot. 

Ruth2011

I am wondering how you are doing.  I am contmplating going off and am seeing the MO tomorrow.  Did yur SEs go away after stopping?? Good Luck

tamoxsucks

I can't thank you ladies enough for all of your posts!  I was so scared!  I have been on Tamoxifen since Feb and have had mild hot flashes and such but in the past few weeks the constipation, bloating and gas have become unbearable!  I am ready to throw in the towel and go off of it!  I have never been a super model but this is out of control!  Thank all you ladies again!!!!!  God Bless you all!

Jennt28

Gas! Yes!



I haven't really seen this mentioned but I seem to have gotten the weird SEs...



I just had a 1 month break because of a surgery and during that time I worked out my main SEs are: so much gas when I lie down at night; constantly dripping nose (hubby and I are going to buy shares in tissues); and bloating.



I started back on the Tamox 3 days ago and all 3 of those things have already come back. I could play a concert under the covers :-/



Jenn

tamoxsucks

I thought I was alone with these side effects!  I don't know how much more I can take! I'm miserable!

vettegal

I am on my last 3 tamoxifen. I can not wait to see how my body reacts!

jennsmc

Has anyone else had the SE of not being able to pee? I noticed a couple weeks ago that it was difficult to start peeing the first pee after I took my pill. This past weekend I woke up and could not pee at all. After a trip to the ER, I am now hooked up to a catheter. I really think this was caused by the Tam. I've stopped taking it and will hopefully be able to get this thing removed ASAP. How am I supposed to push through this? I can't even go to work like this.

hmurph

Hi Tammy,

I know it has been years since you wrote on the forum I'm looking at, but was wondering if you are still suffering from watery eyes on the Tamoxifen? I started it in November and finally realized that it must be the Tamoxifen causing it. Every morning, it takes at least an hour for my eyes to stop watering and throughout the day, they have a slight burning sensation. I just wanted to ask somebody who has been on it for a while to see if this side effect does subside. Thank you for any help.

Holly