Spring 2018 Starting Hormone Blockers

star2017, not quite ready to remove my ovaries, I’m only 33, but that would be a fool proof way

Hi, all--another check-in:

So happy to hear so many of you are doing well!

My last dose of anastrozole was June 7. Stopped after the MO said my SEs were severe enough that it just wasn't the right drug; he did not recommend trying other AIs since my joint pain was so severe and my blood pressure was terribly elevated. I could barely climb stairs to go up to bed; could not go shopping; had pain on a scale of 8/10 (in my wrists, shoulders, back, hips, knees, and ankles) that was present all day and kept me awake at night; and my blood pressure on the day I saw him was 175/90. It had been creeping up throughout the three months I'd taken the drug, and I was getting daily headaches. The cardiovascular risks were therefore too great, considering that heart attack and heart disease run in my family. In addition, my partner noticed, and I must say I also noticed as well, that my verbal fluency had declined. In fact, I did not feel like myself at all, mentally, for the three months I was on the drug and it was degrading weekly. (That, BTW, is an SE I did not expect.)

Now that I've been off almost three weeks, my pain has completely resolved (except for pre-existing arthritis in my back and right hip, which had been chronic for years). My blood pressure is back to normal; no more headaches either. I can drive, mount stairs, go shopping, and resume all my normal activities. My brain is beginning to feel more normal, although that's taking longer. It's obvious to me (and to my partner) that the drug was causing all my issues.

Before you get scared about my story, please remember that most women who take anastrozole do not experience all the side effects I've described. My situation is not typical.

Now I have to decide whether to take tamoxifen, which is what the MO has recommended. I'm still on the fence about it and may not decide until my mental state is restored. It's frightening to decide to do nothing and wonder about recurrence; it's also scary to take something that may cause me similar issues. So I'm going to wait another couple of weeks or so before I decide.

In the meantime, I'm headed out to visit my daughter, her husband, and my grandchildren in less than a week. Love them all dearly, enjoy my visits, and I'm grateful that I can travel again. Hope you all are having some fun this summer!

Marigold8 - sounds like you made the right decision to go off the meds. My oncologist - who has been my favorite doctor through all of this - said you need to consider quality of life. Yes, if we choose to do nothing our risk (which is not 0 anyway) is higher for a recurrence. That being said, if your quality of life is so degraded that you can't enjoy it then it seems that the elevated risk may worth taking. He said if I ended up needing to do that they can screen more often or do some things differently than if I stay on the meds. Easier said than done I know. I felt really empowered and know that as I move through the cycles of SE and other changes to my body he is a reasonable and approachable doctor who will help me make that decision if it comes to that.

I have been lucky so far - I do feel like the SE's have changed over time and he said that any drug can cause any problem at any time - so not to assume what I had in the beginning are the only SEs or that I will always have them. The earlier months were actually a bit easier than it is now. Interesting you mention the mental acuity and verbal fluency - I have not actually felt like myself in that regard for a while too. I thought maybe it was just all catching up with me after trying so hard to keep up with everything during treatment. I had only mild fatigue during treatment but feel like it is much worse now. I will watch more closely now!

Good luck with your decision and do what is right for you!

Veeder,OMG !! Is your name Jobe?? Oh dear .I am so sorry to hear of your misfortunes. I hope you heal quickly and have people close to help you through this.

Marigold, good luck with tamoxifen and hope you tolerate it better than the other med.

I am doing well on anastrazole , I did see the NP of the MO for 8 wk F/U on the med. and she Dx breast lymphedema after I told her some symptoms I was having .I am seeing a lymph. specialist PT and am improving with the exercises and compression bra. I find it curious that no provider ever mentioned the risks esp after having axillary nodes radiated. Thank heaven for web sites like this where I have learned so much!!!

Happy 4th of July everyone.

Hi, Veeder! Guess if you didn't have bad luck you wouldn't have any at all!

So far, so good on the Tamoxifen. I' m taking it after my evening meal, as suggested by the pharmacist. Felt really tired for the first week or so and, of course, that was probably compounded by it being so soon after a major surgery which took away a possible source of estrogen (it's wonderful to read the lab report that describes "senescent ovaries"). I've gotten my daily steps back up to at least 10,000 but cannot start vigorous exercise until cleared by my gyn surgeon. However, it is amazing how much better I feel with just the walking (and without a tumor gobbling up whatever it wanted).

Hope you are up and about, able to do some exercising, and to sleep better very, very soon. I know I do a whole lot better when I get sleep. Perhaps the biggest lesson I've learned through all of this is how much better I feel and sleep when I keep moving.

Oh Veeder14,

Shocked and sorry to read of this accident. Sending prayers and good wishes your way for quick healing and minimal pain

Hooray! Had my 3 month post radiation mammo/ultrasound today. Results were usual post up changes (that doggone seroma continues to hang around) and no signs of cancer!!! Also doing well after three weeks on Tamoxifen. Even though it is raining here today, the sun is shining brighter in my mind-- while I did not expect bad news today I really did not expect it 6 months ago since I'd been through the call back dance more than once before.

Hope all are doing well😊

congrats on the good news, Beavemtx! So nice to just go and not get bad news.

FYI for you and Veeder14, I now have a seroma in my axcilla (armpit), at the site of my lymph node incision. Surgeon saw it, will wait to see. Fortunately it doesn’t irritate, but I was afraid for a bit before I knew for sure what it is.

Prayers that all of ours go away for good

I also had a seroma after my prophylactic mx. It took about three to four weeks to go away. There may be a tiny bit of fluid left, but it seems gone now.

My hives (that I thought could be related to the tamoxifen) have gone away, so aside from feeling a bit stiff and achy in the mornings, I haven't noticed anything too bad since starting tamoxifen.

still no major se’s on the tomoxifen, mostly just the hot flashes off and on. I start the Ibrance this week for the pallus clinical study. I am hoping that it is not to bad with added side effects.

I hope everyone is feeling good,and healing,even with broken bones and bruises. :

Beaverntx - yes! re: the tired thing. I do think this takes an emotional toll that is bound to show up physically. I'm still going to be 60 soon, though. Bring it on.

And congrats on getting through your first post-rads mammogram and ultrasound - and for the good results. I am heading to mine on the 20th. I, too have some palpable lumps, especially behind the nipple area. Everything feels better after I've stretched and massaged, but I will feel better knowing it is the "new normal" baseline mammogram - cancer-free, of course. I'm not expecting anything bad, either, but as you say, I was completely taken off guard back in December when the path was positive. So....

Veeder, good grief - I hope you are feeling better every day. I just hate you're having to go through this.

First follow up exam with MO re hormone therapy treatments is also scheduled for the 20th. Practically a whole day at the cancer clinic - yeah!!! LOL

Well, I have my first post-surgery/radiation/hormone therapy follow-up mammogram/ultrasound on Friday morning. I haven't thought much about it, but when I do I have a bit of anxiety. Here is my internal dialog: There is no reason to expect anything, given the diagnosis, prognosis, treatment, etc. - but I have that little earworm that says 'well you didn't expect it in December, either.' I could use a metaphorical pat on the hand to say there, there....

At least, I remind myself, I do not have 2 broken shoulders and clavicle. Veeder, how are you doing?

Hope all are well - thanks for letting me vent a little fear.

Hi Kaywrite,

"There There" It is easy to say every thing will be alright and all we can do is hope that is the case .I do understand your anxiety !! My 1st f/u mammo is in August and I just hope for the best. I will send good thoughts your way !!

Hi Veeder, I do hope you don't have to postpone your F/U and sure hope you will heal completely. Sending good thoughts and a virtual hug your way. Could thewy do an ultrasound instead of a mammo?