Tamoxifen Holiday and another 4 month check up

I am on a "Tamoxifen holiday".  What is that you ask?  Well, I have decided to take a break from Tamoxifen.  I have many reasons for doing this and while I do not encourage others to do this, for me I had to.  I know that Tamoxifen is a well studied drug and has many benefits but for me I am wondering if my quality of life is more important than the benefits from this drug.

How it all started is back on November 16th I had a doctor's appointment with a general practitioner who I have since designated as my primary care physician since I didn't have one.  I needed help with monitoring my cholesterol and the clinic is really close to my house so it made sense.   At my appointment we discussed many things and the biggest complaint I still have is the menopausal side effects that I have listed more than once on my blog and there are a lot of them!!!  She talked to me about a drug called  Brisdelle and how it has been approved for treating hot flashes in menopausal women, however when she typed it in it came up with a big red flag that it can reduce the effectiveness of Tamoxifen so she couldn't let me try it.  I wasn't surprised!  There isn't many options and I believe I have exhausted them all.  I left feeling defeated once again.  Before I left I had to get blood drawn for a complete panel.  I got a call on Thursday, November 17th that said my cholesterol has gone down quite a bit since I have been on my statin but they want to double my statin dose to get it down even further.  My cholesterol has always been high but lately it has been through the roof almost topping out at 300.  The next conversation we had was quite concerning, my A1C levels are pointing to diabetes.  Right now I am classified as a per-diabetic.  So of course I turn to my friend Google and start learning more about Tamoxifen and of course the high cholesterol and diabetes can be side effects of this drug.  I was in tears.  Right then and there I decided to stop Tamoxifen, I haven't had any since November 16th.  I am now 13 days without it and I feel great.  My hot flashes are almost non-existent now and when I do have one it is so minor compared to what they were on Tamoxifen.  Each time I got a hot flash, I had to pee (real bad) and there were many times that I would leave a little bit because of the urgency.  Now that the hot-flashes are not just little tiny warm flushes, I am not peeing my pants anymore!.  Last night I got a little over 8 hours of sleep without waking up once.  I am in tears even typing this out because I feel so dang good, I can't explain in words how great I feel.  I have gone over two years now without sleeping more than about 1-1/2 hours to maybe 3 hours at a time before waking up due to my hot flashes.  The other main side effect I have noticed is my "foggy brain" that I had been contributing to chemo a.k.a "chemo brain" probably isn't chemo brain after all.  It had to be Tamoxifen that was making me feel that way.  It is hard to describe but I seriously felt like I was trapped in my body and couldn't get out.  It is a really weird, hard feeling to feel so foggy all of the time.  So to say my quality has improved in just 13 days is an understatement.  I forgot what it feels like to be me.  It has been a long two years since I have felt this way and I really like being me and not someone else that Tamoxifen was making me.  I have also ditched the Gabapentin that I was taking to help get me a little sleep at night.  I see no need for it now that my hot flashes are so minor that I am sure they are happening but I don't notice them.   All the while these two drugs have made me gain almost 20 pounds since I finished chemo.  I had to taper the Gabapentin because it can have nasty side effects.  I have now been without it for 5 nights.  I sure hope to finally lose some of this excess weight I have gained.  Even if I can just drop the 20lbs that I gained I will be happy.  My goal is to get my weight down a bit and hopefully get my A1C levels down and possibly be able to get my cholesterol down too without the statin drugs.  I am sure that I will remain in menopause and that is okay now that my hot flashes have subsided quite a bit.  I used to say what I wouldn't give for 5-10 hot flashes a day and now here I am.  I am so very happy!!!!

So where do I go from here?  Right now we are calling this a "drug holiday".  When I saw my oncologist for a 4 month followup on Monday and told her about what I have done, she was clearly not happy.  She told me that I really need this drug for 10 years and I shouted out "absolutely not".  I said my quality of life is more important than my quantity of life.  I told her if I had to continue to feel that lousy, I would rather be dead.  I know those words are harsh but I HATE feeling the way I have been feeling.  She told me it is okay to take a "drug holiday" but that she will be calling me in a month to discuss this further.  She said she is going to test my hormone levels again and if they are still consistent with menopause then I can try the aromatase inhibitor drugs.  I am willing to give these drugs a try, I believe there are three of them and I will try all of them before I give up completely on the blockers.  I want to know that I have tried everything out there before I make my final decision.  I do know that I don't want Tamoxifen ever again.  Have I said how great I feel?  I just wish you all could feel the way I felt before and the way I feel today and then you might understand more.  I know I am not the only one out there that cannot tolerate Tamoxifen.

So the rest of my appointment went well other than her being dissatisfied with my decision to stop Tamoxifen but on the other hand she did say she understands that quality of life is important too.  She told me to reschedule for another 4 months and that she would call me in a month to discuss all of the above.  I didn't schedule another appointment because I have an appointment made at the Huntsman Cancer Institute in SLC.  I have made the decision to get a second opinion and I may transfer my care to them.  They are one of the top cancer hospitals in the United States.  I know that they are constantly researching and have new trials going every day.  My appointment is scheduled for December 15th and I hope  to discuss the hormone therapy as well as my care going forward should I decide to not ever go back on these drugs.  I know I might be sealing my fate by stopping this drug but I do believe in God and I do believe that our story was written before us coming here and no matter what I do with this choice that is before me, I will die at the exact time and day that I am supposed to and not a minute too soon and not a minute too late.  When God needs me he will call me home and I have to have faith in His plan.  I look at all the ways I could die right now, a heart attack from my extremely high cholesterol or from diabetes or from cancer.  Right now it makes sense for me to eliminate the drug that is causing all of these other problems for me and live the best life that I can while feeling this great.  Sure cancer might come back and bite me  but it could even if I am on the hormone blockers.

Life is precious and if you feel good right now please, please enjoy it and embrace it for tomorrow it could be very different.  I know first hand how fast life can change.  I don't know why but this song sticks in my head and it is from the movie Tangled.  It is seriously how I feel at this exact moment with God in control of my life:

"I See The Light"

All those days watching from the windows
All those years outside looking in
All that time never even knowing
Just how blind I've been
Now I'm here blinking in the starlight
Now I'm here suddenly I see
Standing here it's all so clear
I'm where I'm meant to be


And at last I see the light
And it's like the fog has lifted
And at last I see the light
And it's like the sky is new
And it's warm and real and bright
And the world has somehow shifted
All at once everything looks different
Now that I see you


All those days chasing down a daydream
All those years living in a blur
All that time never truly seeing
Things, the way they were
Now she's here shining in the starlight
Now she's here suddenly I know
If she's here it's crystal clear
I'm where I'm meant to go


And at last I see the light


And it's like the fog has lifted


And at last I see the light


And it's like the sky is new


And it's warm and real and bright
And the world has somehow shifted
All at once everything is different
Now that I see you

I have said before that I do not practice an organized religion but that I am a very spiritual person.  I was a spiritual person before my cancer journey too.  However, I am so much closer to God now and have a clearer understanding of this life and our eternal life that we will be granted one day when we journey back to heaven.  I am firm believer  that we are here to help one another and treat one another kindly.  I wish everybody could remember this saying when they are treating someone poorly:  "Be kind, for everyone you meet is fighting a battle you know nothing about".  I am praying constantly for peace, comfort and clarity for the decision that I need to make regarding Tamoxifen, ovary suppression or the other hormone blockers.  I don't want any more anxiety from cancer in my life.  I don't have time for it.  I want each day that I feel great to be a gift.