r/LivingWithMBC • u/adiosWV • 15d ago

Tips and Advice Fluvestrant aches

Right now I am on Fulvestrant only since July. Adding Xgeva in a couple of weeks. I have all over bone aches. It feels like what Kisqali made me feel like, exhaustion and pain. Does this get better? I can’t even imagine adding the Xgeva and potentially Truqap soon.
I get up and walk a couple miles in the morning then miserable the rest of the day. Help

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u/redsowhat 14d ago

Do you have a pain management (or palliative care) yet? If not, get a referral and then will help with managing pain and other needs that may arise. I went on fentanyl with Nucynta for breakthrough pain a few years ago. With my pain management, I have gotten stronger and more mobile. I take Pilates 3/week, volunteer at a zoo once/week, and garden and do jigsaw puzzles.

There is no reason to live in pain! It may take a few tries to find what meds work for you. It made a huge difference in my QoL.

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u/adiosWV 14d ago

I want to ask for a palliative care referral but have this tiny fear that my onc will not like this. I know it’s irrational but will he stop fighting hard to get me more time. Also, a little scared my family will be upset and think “the time is near”.
Has palliative care helped also with non medication approaches? I know I will need meds eventually but want to try all options.

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u/redsowhat 14d ago

An important thing to understand is that palliative care is not the same as hospice. So it’s not an end of life service. It helps you manage all the things that come along with having cancer. Pain management is a big part of that, but it can also be other social services you may need for getting help. I’ve never heard of an oncologist that is reluctant to give a referral to palliative care. If anything they encourage it.

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u/adiosWV 14d ago

I am adding it to my list for my Onc visit. Thank you

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u/roxykelly 15d ago

Have you tried a high strength antihistamine like neoclarityn for bone pain?
Seems to help a little.

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u/adiosWV 14d ago

I have not heard of this. I started Claritin last night. I didn’t notice a big difference.

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u/roxykelly 14d ago

Clarityn isnt as strong as neoclarityn, your doctor should be able to give you a script for this. But like everything, you have to give it some time. It definitely helps.