Checking in.

[Ibelong]

Hello all you brave souls. I have not been on in a while. I just wanted to say hello. I have been doing weekly blood draws for a while now. It has showed a definite pattern of highs to lows during my Ibrance cycles. I can predict when my numbers will plummet and really take exceptional precautions. I wish that were true even with precautions everyday I managed to catch 2 colds this year so far. 2 more than I do in 2 plus years time. Blood work is also is showing that the highes are reaching into the normal lows. Which I am very happy to see. They haven't been normal since before my recurrence diagnosis in Feb 2015. I have been getting monthly tumor markers and they show an increase. Not just cause for scans or treatment change. I hope it normalizes soon so nothing will change. I have started to have a reaction to my xgeva injection and have decided with my oncologist to take it every other month instead of once a month. The letrozole is causing severe achy joints. That being said it's still been a rather great year thus far. Stage IV with mets over and out. Till next time.

[Joan37]

Despite the ups and downs, I'm glad to hear that thus far you've been doing well this year. Sending you a big hug.

[Ibelong in reply to Joan37]

😊

[JulSoul]

Isn't it wonderful that we can all share in this forum how we really feel? When you need to vent, here we are! When you are happy here we are! This is one heck of a journey, but every day we get to see the sun rise and our family and friends, it makes for a good day. May you feel surrounded in love and prayers!

[Ibelong in reply to JulSoul]

🤗

[sabal]

I took xgeva every month and after 2 years was switched to every 3 months. My onc said that is the regular protocol...you might check that out. How long have you been on iBrance??? I am just starting it this week. My onc says my cancer doesn't show tumor markers? Don't know what to make of that...never heard of that.

[Ibelong in reply to sabal]

Yes. I was told I had to take for 2 yrs but it was okay to take every other month instead. It's been 10 months. I was told by my oncologist he watches the tumor markers to get an indication if something is going on but, he says he does not rely on them as the primary indicator as they can be wrong. They could be sky high but scans will show nothing and visa versa. So I am puzzled if that even makes since to have such a protocol to watch tumor markers. I think the tumor markers are a specific protein that the cancer produces as well as cancer cells circulating in the blood. Because cancer is made from your own cells that go arye your body can also produce this protein. I read that tumor markers can be high naturally in some people.

Your doc may just be telling you that you have no excessive measurement of cancer cells or protein in your blood. I would try to get more info from him. I hope you find it's good news.

[sabal in reply to Ibelong]

Thanks...I will ask him about it.

[daf10]

We had one volunteer at SHARE who also experienced similar some ups and downs with Ibrance and hormonal treatment Mostly it was her white blood cells count which fell dramatically. Over the months her doctor was able to adjust the medication and iron out the kinks She is doing pretty well now and even has had some regression of her tumors Best of luck

[Ibelong in reply to daf10]

Thank you. I am always optimistic.

[sabal in reply to daf10]

How long has she been on iBrance???? I was told by the pharmacist that iBrance has been on the market 2 years. I wonder how long any "pink sisters" have been on it???

[daf10 in reply to sabal]

She has been on Ibrance close to two years now Some women were taking Ibrance while participating in a clinical trial I believe I heard from one woman who has been on it for three years. There are many drugs for Stage IV Breast Cancer which are now in the clinical trial stage Two drugs have just been approved which look very promising, Keytruda and Kisqali

[sabal in reply to daf10]

Thank you...

[Ibelong]

🤗