Bone chills

Kringle12

Hi,

I’ve been on ovarian suppression for just under 2 years. I get monthly zoladex shots and take letrozole daily. For about a year prior to my diagnosis, I started having deep bone chills (as if I was out in the freezing cold for hours) a few days before my menstrual cycle. That’s how I knew it was coming. It’s hard to shake and I sleep in heavy layers, drink hot tea, etc until it goes away. That all went away when I had my surgery and started OS. Fast forward to this spring, it started again every month, just a few days before my shot., even though I have no menstrual cycle.

I guess my questions are, does anyone ever experience this or something similar? It concerns me because I’m wondering if there’s estrogen being produced somewhere and the OA is starting to not work. I brought it up to the PA last time I saw her and she never heard of it. I plan on bringing it up to my MO next time, but wanted to know of other peoples experiences.

Thank

Anonymous

I had this but due to ibrance. Agree tht they are really annoying.

ShetlandPony

Well, we know that hormone fluctuations can mess with the body's thermostat. Usually it is hot flashes but I have also had cold flashes. When doctors say they have never heard of something, and imply that therefore what you describe is not real or important, it really bugs me. Just because they have not seen it does not mean it is not real or important! I would ask to have hormone levels (FSH, E2) checked to verify that the Zoladex is working to keep you at postmenopausal horomone levels, especially as you near the time of your next scheduled injection. I find that timing suspicious given that you experienced chills related to your cycle in the past. If Zoladex is not completely suppressing your ovaries, letrozole will not work, and you will need to discuss alternatives such as tamoxifen, or oophorectomy.

Spookiesmom

Even if your ovaries have shut down, or gone, your body still makes estrogen through the adrenals. Might want to check in with an endocrinologist.

Kringle12

Thank you. Good idea, I will ask them to test my hormones. It bugs me as well that the PA kind of dismissed it. To me, something feels off about it. I go for my shot this week and will see what they can do as I don’t see the MO until February at this point

ShetlandPony

Send your MO a message.

FarAwayToo

Kringle, your concern is very valid. We know our bodies best, and I'm with Shetland here:

1) Do not let anyone convince you what you are experiencing is not real. You know your body best, it doesn't matter what other patients experience

2) Get your hormones tested.

Just a word of caution: my MO (who I otherwise love) refused to order my hormone levels (specifically, estradiol) tested. She told me there was no upper boundary where they would consider that lupron (and therefore, letrozole) were not working. She told me to go by other menopausal symptoms, like if I would stop getting hot flashes or would get a period. It was not good enough for me. In the working ovary letrozole stimulates ovulation. I was concerned that if my ovaries were not suppressed sufficiently (I was on lupron for 6 months), letrozole was doing more harm than good. Sure, chemo put me in chemopause, but we could not be sure that my ovaries would not wake up in time. From your signature it appears you didn't have chemo, so if you were premenopausal at the time of DX and zoladex is your only weapon in getting your ovaries to sleep, I would pay even more attention to anything that may resemble ovulation symptoms for you.

My solution: I got my estradiol tested myself (paid for the sensitive estradiol test) AND scheduled oophorectomy. This is not for everyone, and you need to work with your MO and your body to determine what's right for you. BTW, my results showed that my estradiol was below the level that sensitive test could detect. Which meant lupron was working very well. However, it gave me a peace of mind to have my ovaries gone. Also, not having to do the monthly shot.
Again, I do not recommend everybody gets oophorectomy, there are certain studies showing our ovaries doing good things for us even when they are not producing estrogen. But if you have concerns about zoladex not working, you should pursue this further until you have hard data to go by (like hormone levels)

ShetlandPony

They need to check FSH too, to see if it is at the postmenopausal level. If the oncologist won't order, maybe your gynecologist will.

FarAwayToo

Depending on the situation, even PCP might order these, if you ask. My PCP is never stingy with the blood work - easy for him to order, why not? He is not obligated to "do something" about the results, like my MO. He can always refer me to a specialist if he thinks my results indicate I need further work up.
In hindsight, I should have asked my primary care to order the hormone level tests.

Kringle12

Thank you all for your experiences and advice! I messaged my MO about this and she ordered 3 tests: FSH, Estradiol, and something with Lutien hormone? I’ll let you know how they come back!

ShetlandPony

Good. Well-done advocating for yourself, Kringle.

Kringle12

Thank you and thanks for your advice!

I got my blood test back in mychart. Not sure what the results mean in regards to OS. But they are as follows:

Estradiol: less than 5, LH: 0.4, FSH: 6.0

Any thoughts? Haven’t heard from my MO ye

FarAwayToo

Kirngle, I don't know how to interpret LH and FSH, as they are not necessarily in the menopausal range, but then you are not in menopause - your ovarian function is suppressed and that is done by "tweaking" LH and FSH with Zoladex. The estradiol <5 is a good news, this is what you are looking for.

WC3

Kringle:

Chemotherapy put me in to menopause and I was then put on Tamoxifen but had to switch to Anastrzole and Zoladex and now the Zoladex has been swapped out for Lupron. My estradiol levels and FSH levels were checked before I started the AI ans OS and I was confirmed to be in menopause still, and my estradiol is checked regularly and has remained less than 12 but these past few months I can tell when the lupron is wearing off a few days before my next injection, and I do wonder if my ovaries aren't so dead after all.

Kringle12

I get what you mean. I feel it too.

I just heard from my Dr’s office. They said the numbers indicate my ovaries are shut down properly. So I guess it’s just a weird thing I’ll have to dea with.