One year into treatment!

[Betbop]

Was diagnosed with MBC and have been on Ibrance Faslodex and Xgeva for a year. Had spinal stenosis to begin with and am now having a really hard time walking. Anyone else have this problem? Am seeing a vascular doctor next week and a back surgeon the following week. I can deal with the hair loss and how hard it is to eat also the fatigue but not being able to walk has just about done me in. Anyone else have this problem?

[marybv]

Hi Betbop,

I am so sorry to hear all of this. I'm glad that you will be seeing vascular and back doctors soon and hope that they will be able to provide you with some relief.

I manage the Breast Cancer Helpline for SHARE Cancer Support. Our Helpline has many volunteers who are MBC and take Ibrance. If you think it would be helpful to speak to someone who may be experiencing some of the same things, please feel free to call 844-ASK-SHARE (844-275-7427).

I hope things improve for you very soon!

[Betbop in reply to marybv]

Thank you so much for your reply.

[Snowcone16]

Congratulations on the year! Hope they can resolve/ease the stenosis.

[PJBinMI]

Congratulations on the one year anniversary. Just getting this diagnosis is so hard--like a sharp kick to the gut! The first year was sure the hardest for me, emotionally. I'll hit 15 years next March! Bone mets only. I got almost five years from Femara and over 9 years from Faslodex. And early scans showed spinal stenosis that explained the long term lower back pain I'd had on and off for 30 years! I have had two back surgeries now. My onc referred me to a neurosurgeon to evaluate my back. Pressure on the sciatic nerve ended up scarring it and leaving me with impaired feeling (neuropathy) down both legs and into my feet. That has left me with gait and balance issues. Physical therapy has helped alot but I think the back surgery helped even more. The second back surgery involved placing some metal support in there. My first back surgery was about a year after I was diagnosed and the second one was a few years after that, both to the lumbar section and in an area with mets in the vertebrae but not due to the mets and the surgery did not cause any cancer issues and the cancer did not cause any problems with the surgery. How crazy does that sound! But you want a really good surgeon so check into that with people you trust whether that means your onc or other doctors. You've not been on Xgeva very long, in the big picture, but these bone drugs can cause changes in the bones which can complicate surgery, so probably good to get the surgery sooner rather than later. I also suggest that getting second opinions about the mbc from bc specialist oncs at Comprehensive Cancer Centers. Those are the top tier of cancer treatment facilities in the US and they have very specialized oncs, like bc oncs, who see patients and do research. You can find a list of these CCCs on the website of the National Cancer Institute.

cancer.gov/research/nci-rol...

I hope you will find a way to be more mobile and more comfortable. And know that many of us with bone mets only and E + mbc do well for a long time. You are off to a good start!

[Betbop in reply to PJBinMI]

Your reply was so very helpful thank you so much.

[SeattleMom]

Hi, Betbop,

I just met with my oncologist this past week following pet scan. I’ve been on letrozole, Ibrance, and Xgeva since December. I had my monthly Xgeva shot that same day and onc is now changing schedule to having the shot once every 3 months. She told me that I had been getting a monthly dose for long enough and that over time, Xgeva really stiffens the bones and that it was unnecessary to schedule this injection every month.

Makes me wonder if your back bones have stiffened? Worth a discussion with your oncologist as well. Good luck on resolving this. “If it ain’t one thing, it’s blah, blah, blah . . . “ Story of our lives, right?! Bless you; prayers for finding solutions! Linda

[Betbop in reply to SeattleMom]

My oncologist also has cut down on the frequency of my Xgeva injections im sure there's a correlation. Thank you for the info.

[PLASEM]

I am sorry I know i have fatigue a hair loss and i am losing protein in my urine but not able to walk it has to be worse, take care take ut one day at the time i will pray for you

[Betbop in reply to PLASEM]

Thank you so much prayers can work miracles I'm sending some to you also.

[Juliandrea]

I wish you a speedy resolution so you may walk pain free. Hang in there!!!! Do you know if one of the drugs causes this or is this something that you have had but didn’t know?

[Betbop in reply to Juliandrea]

Yes I've had spinal stenosis prior to my diagnosis but it has much worse since I've started treatment. Will know more after I see my 2 new specialists. Thank you for your reply.

[Puppy_love in reply to Betbop]

Maybe there is a minimal invasive surgery they can perform. My Mom has spinal stenosis and it helped her a great deal.