MBC cancer diagnosis: When I was... - SHARE Metastatic ...

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MBC cancer diagnosis

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When I was diagnosed with breast cancer nine months ago, it had already spread to numerous lymph nodes, several ribs and a pelvic bone. My oncologist recommended letrozole, Ibrance and Xgeva. Two PET scans and six months later the breast tumors had shrunk and other areas of concern had either shrunk or disappeared. My main side effects are fatigue, low white blood cell count, hair thinning and the return of hot flashes. Due to the white cell count my Ibrance dose has moved from 125 mg to 100 mg and five of the first six months I had to take two weeks off Ibrance before restarting. Recently I have started having some joint pain in one hand and need to weigh the pain with the fact that the current medications are working favorably for me.

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9 Replies
nstonerocks profile image
nstonerocks

Yes you do have to weigh the side effects with the therapeutic effects. I get joint pain on and off, probably from the letrozole. Last month the fatigue was awful, probably from the Ibrance. But stable...and that's what it's all about. Glad it is working so well for you.

Bekadawn profile image
Bekadawn

Try asking your Dr about celebrex. Worked wonders for joint pain. I still have bone pain, mostly in my back where it is the worst.

PJBinMI profile image
PJBinMI

Celebrex has helped me alot with joint pain, too! I take 200 mg in the morning. Effexor can help with the hot flashes. The long acting Effexor, I can't think of the two letters that mean the long acting one. I take 75 mg two to three times a day. Both these meds are Rx. Ironically, I am on more meds for side effects than for cancer! That always cracks me up, but it does improve quality of life for me alot! I've had weeks with alot of fatigue and times when it really isn't much at all. Crazy!

blms profile image
blms

I too was just switched from 125mgs to 100mgs. So far, I am experiencing much less exhaustion and no nose bleeds on this dosage where 125mgs left me so exhausted I could barely function and the bright red nose bleeds were interesting. But, early on with this dosage so we will see but I am optimistic!!

sweeetk profile image
sweeetk

Hidden,

I did the very same thing as you for 9 months. I stayed at the 125mg of Ibrance.

My MBC was throughout all of my bones, lots of lymphs (from my breast, up to my neck, and in my body). I got a clear PET scan after 9 months. I was so tired of all the medicines, I went off of them for a few months. This last January, the cancer returned. They wanted to try me on Tamoxifen for a while. It did not work. The cancer is raging now. I'll be back on Ibrance, Letrozole, Xgeva, and Lupron most likely tomorrow.

I deeply believe in God, and that he holds the future... but I'm scared for my 5 year old.

CindyBisch profile image
CindyBisch in reply to sweeetk

Praying for you 🙏

Kimr2081 profile image
Kimr2081

Overall that sounds like good news. Sometimes it's frustrating when you want to just feel "normal". Have you ever tried essential oils. Doterra has one called Deep Blue and it helps my husband with aches and pains in his lower back.

BeckyHobson profile image
BeckyHobson in reply to Kimr2081

I swear by Doterra Oils and Deep Blue is the best thing since sliced bread. Serious! Rub it on the achy joints at bedtime (it smells like Ben-gay) and it feels so much better come morning.

I have the same thing MBC, was on same meds for 18 mo. I felt a lot better on meds than off.. tumors shrunk, most pain went away. My back is the worst. If I stand up to long it will start to burn. Then I sit for 1/2 hr and I am ok for a while. Alene works if I need to go some where, but I don't like taking to often. My knees are very bad,but that is arthritis. Maybe that is what is wrong with your hand. Tail to doctor. I will be getting gel shot in knees next week. Hope your hand is something that can be treated. My doctor said comfort is what matters most. Good luck.

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