Spoke too soon

[Staceyness]

I've recently begun my second round of ibrance (125) and letrozole. I had no pain the first round and my blood work was good. However I'm now on day 4 of round two and I've had various aches and pains. The one that really worries me is the one that seems to be in the same area as my liver. It comes and goes but can be sharp at times. Other areas include my pelvis and general joint pain in the knees. Does it get better? How about the fatigue? Does that decrease with time? Should I be worried? I guess I just need some advice from you who've been there❤️

[Euebdbdbddh]

Hi , I am on 6 round of Ibrace (100) and Letrozole . First 3-4 rounds were horrible. I used to get horrible headaches. It was so bad that I ended it up in hospital twice .... for months, I was getting headaches every other day, it usually lasted 2-3 days , I just could not function. With time It got better , my headaches settled . ...

Now I get joint and muscle ache .... I joined yoga classes and it really reduces pain for me .... if I stop yoga for a few days I feel aches everywhere....

Not sure if it’s related but I use to get very dizzy , but since I stopped taking vitamin supplements it stopped ...

[Epinto]

I have been on ibrance and faslodex for almost two years, 125mg. I feel tired and yes have ache in my knees. I try to walk a lot and keep busy. As long as it works I will deal with the side effects. Good luck and let us know how u r doing.

[SeattleMom]

Hi, Stacey!

I've been on the same protocol for the past five months.

It seems there is plenty of variation with the timing of joint pain, back pain, white cell counts, red cell counts, etc. For instance, the week I seem to experience the most pain and fatigue ends is the week I am OFF Ibrance. Not sure if this is the result of the build-up of the med, but I did have to be pulled off Ibrance for a week a few months back due to low WBC.

I've not had the level (125 mg) changed yet but I understand that this is often managed at lower levels to deal with the side effects, with no apparent detriment to its efficacy.

You don't mention where your mets are located. Mine are in my spine; and my first pet scan (since initial diagnosis) shows no sign of cancer after five months of treatment. But I still do experience back pain off and on, probably the result of the impact the cancer had on my bone density. I get a shot of Xgeva once a month to provide help with that.

I do believe that you become less frightened by the incidents of pain as you proceed with treatment. This med combination seems to be the crown jewel for women with MBC. Good luck to you, Stacey! XO

Linda

[Staceyness in reply to SeattleMom]

Thanks so much Linda❤️ My mets were discovered first (even before the breast cancer) during a bowel resection, so in my intestine. There are minuscule ones in my lungs (which my doctor doesn't seem too worried about) and a possible bone lesion? I go for my first scan on June 4 with results June 8. Praying really hard that it is Gods will that I can live long and be a grandma! My kids are 16 and 20. People on here are so encouraging and so I come back and read, pray, re-read, pray some more and on we go. Hugs to all of you❤️ God is good and His plans are perfect🙏🏻

[SeattleMom in reply to Staceyness]

You are so right, Stacey! I will be praying for your great results. Don't be afraid (easy to say, as I was myself on pins and needles). I'm betting you will have the same positive results as all of us MBC'ers on this same protocol. Bless you!! XO

[Jerseygirl45]

I have been on ibrance for 20 rounds along with letrozol. Now I take Faslodex with Ibrance so far 3 mo. I have noticed I feel better,not so many aches and pains. And my thinning hair seems to be slowing down. So the side effects I thought was from Ibrance was from letrozol. I hope I am right and the Faslodex is working better.

[Jerseygirl45]

I think all of the meds cause fatigue. Maybe it's a sign that it is working. I will be tired as long as it is killing bad cells.