Both my daughter and I are dealing with MBC. Her's came back just a few months ago after thirteen years of remission. I'm doing quite well with Ibrance and Anastrozol. My concern is the bone mets my daughter is dealing with. She can't seem to get a handle on the pain. They have been very aggressive with treatment. Chemo and radiation both. They tried different pain pills and a patch. Haven't found what works yet. She still has to use a cane or walker to go just a short ways. As so many of you have been dealing with different issues, I'm wondering what you have found best for dealing with bone mets. Anything that I might be able to share with her, I would be grateful.
Thank you so much, I appreciate all of you.
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AuntMildred
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Does your daughter have bone Mets in multiple places? I have one bone met in my left pelvic bone which fractured the acetabular at the mid point. 6 months ago I had SBRT 5x (very focused “CyberKnife knife” radiation) to shrink the tumor so the bone could heal on its own. Initially, it hurt worse because the bone swells from the radiation. I am also taking IBrance/Faslodex/Xgeva and the Joe Tippens tumor shrinking supplements. I walk with a cane & take prescription Ibuprofen 800mg 3x/day. I am walking better so the oncologist thinks the bone is healing. It could not heal if the tumor was the same size. I get my first PET scan (after the initial Dx in April) this week to see the results of 6 months of treatment.
My story is similar to hopenowandtomorrow with mets through the pelvis, spine and ribs. I’m 15 months out now and stronger than I was at 4 months out. Gabapentin helped me tremendously and now I’m on 1/4 of the dose I needed in the beginning. Now I only use a cane when I know I will be walking uphill.
Take courage. I believe with patience things will get better for you both. With the MBC our ability to heal also slows down. Time is a difficult taskmaster.
I have it on my neck, last year it was hurting so much and nothing was working, my onc prescribed morphine, 2 times a day. It helped me a lot! I took it for couple of months and now I can say that horrible pain is gone and I feel much better. Oh of course I did radiation and I am on IBRANCE, faslodex and xgiva.
I am so sorry that you are going through this and I wish all of you the best
Sima
Hi Mildred,
I have bone metastases too (a couple of spots on my spine). I was in quite a lot of pain after I started treatment. The treatment seemed to make the mild pain I had felt prior to my diagnosis much, much worse. I complained to my oncologist and she referred me to another hospital where I received some palliative radiotherapy. I also had several physiotherapy sessions, and now I feel normal again. I have also been adding Epsom salts and essential oils to my bath for over a year now, which I find so relaxing and soothing. So even though I am no longer in pain, I do it now more out of habit. Perhaps palliative radiotherapy is an option for your daughter. She should not have to suffer and have to deal with limited mobility. I hope that she can soon get some treatment to help her. Your shared diagnosis must be hard to deal with, but you have each other and I hope that you are able to draw strength and comfort from one another.
Not sure why your daughter is being treated with chemo for bone mets? Typical protocol is combo of Ibrance and Letrozole. Do you know her markers? ie, Estrogen +. Progesterone +. Her2neu - ???
I have mets in spine and suffered bone pain for about six months after starting treatment. Now, 2 years later, very little pain. Sometimes the body takes a while to acclimate and for side effects to diminish. In the meantime, the oncologist should prescribe medication to relieve her pain.
God bless you both on this journey which we all share. Both of you have emotional pain to bear that is double what most of us endure, as you suffer for your loved one’s pain as well. Please know that love and prayers are with you. God bless both of you!! 🙏🏻🙏🏻❤️❤️
I am so sorry that both of you have MBC and that your daughter has so much pain
I have MBC to my bones and I have a lot pain specially at nights, I take Gabapentin it makes me sleepy, I got radiation palliative and others say that CBD oil help the pain I did not it, I have to deal with pain without much medication because my liver is being affected by the chemo pills my liver enzymes are elevated so I try not to aggravated it more.
My daughter also has live mets, that's why some medications are difficult as are metabolized through the liver. All of these suggestions are helpful. Thank you.
I was talking to my doctor about pain medications. He said he would rather me be on Dilaudid than an Nsaid(Ibuprofen or Naproxen) because Dilaudid did not affect the kidney or liver.
I am a long timer with bone mets--15 plus years so far. I haven't had pai n myself but I pay alot of attention to what others say aabout dealing with pain in their bones. Radiation can help -- sometimes alot. It's interesting to read others notes here saying that gabapentin (aka neurontin) helps their bone pain. I take it to help nerves heal--damaged sciatic nerve and not much sensation in feet. One thing that alot of us women have a hard time doing is asking for help and being assertive about our needs. If tht's the case with your daughter, let her know that alot of us ahve to work on that and that it is okay for her to push her onc about this after talking with her/him about just how hard the pain is making her life! One of my friends with bone mets has put herself between her onc and the office door and doesn't move out of hte way until all her questions are answered! lol I wouldn't do that myself but I do let my onc know when I have something tht I need help with. Our quality of life is really important! Also, the compounding pharmacy I go to has started carrying CBD products and I have found the cream helpful for muscle and arthritic pain. The tincture is supposed to help boost the immune system.
It depends on where her pain is coming from. I had some compressed thoracic fractures that were radiated and that took care of the intense pain that was making me walk with a cane. But I have other bone lesions that can’t be dealt with that way so I am on a Fentanyl patch and extra Dilaudid for when I do more active stuff and the patch isn’t enough. Elaine
I can't believe you are both going through this! I pray for healing for both of you as you support each other through this damn mbc!
Love,
Marianne
I take hydromorphone and Vimovo. The Vimovo actually works the best. It is a naproxen pill and a built in stomach pill. The combo kept my pin at bay. Recently I have been having hives and they stopped my Vimovo thinking it is the cause and I can hardly move with pain and joint stiffness. She should try this.
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