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MBC bone pain

blms profile image
blms
29 Replies

MBC and bone pain? Any info on cervical spine vertebra and MBC pain?

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blms
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29 Replies
USIrishcolleen profile image
USIrishcolleen

blms,

Sorry, I am not anyone with knowledge or experience with this, but wanted to let you know, that I am wishing you peaceful thoughts. I believe someone here will be able to help you though.

Best,

Colleen

luckysmom13 profile image
luckysmom13

Hi there!Bone pain can be from bone mets, which are pretty common with MBC. Talk to your doctor about most recent scans and ask where the mets are. PET scans show the activity as well. If it's a met with severe uncontrolled pain (pain meds don't help) they sometimes do a little radiation to the area.

I'm dealing with neck pain right now and looking for causes. As with any person it can be from muscle pain, nerve pain, disc problems, etc.

Wishing you well!

blms profile image
blms in reply to luckysmom13

Yep, that is what I figured as well as I have had back issues most of my life but this one turned out to be MBC! sucks.

TLLS profile image
TLLS

Hi I have MBC with mets to the spine. I also have monthly bone infusions. I do have quite a bit of pain but it's mainly in my legs/joints rather than my spine. If you are in pain mention it to your oncologist and see what they can prescribe you, please don't be in pain with this x

blms profile image
blms in reply to TLLS

Do they worry about your spine breaking

TLLS profile image
TLLS in reply to blms

No I've not had that said to me. I also have monthly zometa infusions x

Rubyjude profile image
Rubyjude

Pain in my back and ribs was how my mbc was first suspected. Took paracetamol initially but, after starting on Ibrance and having Zometa infusions every three months, the pain has virtually disappeared. Still get some aching in my ribs if I overexercise but nothing more really. Others on the forum have talked about some kind of radiation to particularly painful areas.

luckysmom13 profile image
luckysmom13 in reply to Rubyjude

My initial symptoms were back and rib pain as well

queeneee profile image
queeneee

Some of the cancer medications have bone pain as a side effect

Bettybuckets profile image
Bettybuckets in reply to queeneee

Which ones because I am on Ibrance faslodex and Xgeva x 1year. I am alway envious that people on Ibrance talk about how there pain went away. My hips are always sore/ discomfort… ans I worry that means it isn’t working.

queeneee profile image
queeneee in reply to Bettybuckets

Use this site below to check your drugs... It is also possible to take your bone strengthener in pill form - it is an older way of taking it and slightly less effective statistically, but I find it works for me. (Ibandronic acid 50mg per day) drugs.com/sfx/xgeva-side-ef...

Bettybuckets profile image
Bettybuckets in reply to queeneee

So it is the Xgeva which may cause bone pain? I guess I should reframe them pain into thinking that is how I know it is working

blms profile image
blms in reply to queeneee

Interesting, wondering now if this is what is causing my passing out episodes preceded by a fib then BP drop, etc.

Beryl71 profile image
Beryl71

I had something like sciatica. The pain was al down my leg and across my back. They found Mets in the sacrum and femur. Pain was pretty awful. The local hospice pain management team were very helpful until it improved. They say my bones are stable now though after a year on ibrance and letrozole. X

Jaxon2007 profile image
Jaxon2007

My sister had bone pain, hip and spinal. She had the nerves deadened. Good luck to you.

blms profile image
blms in reply to Jaxon2007

I gave a pain management doctor I had seen for siatica about 5 years ago who was brilliant and at the time talked about killing nerves. It made me nervous but I have been seriously thinking of calling him for this. So I am glad to hear it worked well for your sister

Jaxon2007 profile image
Jaxon2007 in reply to blms

Yes, it was a very welcome relief for her. It worked great. Good luck to you.

blms profile image
blms in reply to Jaxon2007

Thanks

Lolli2020 profile image
Lolli2020

For me, pain has been the indicator for new bone mets. I've had 3 different rounds of radiation and it really has taken care of the pain. Mine have been in my pelvis, so treatment for you might be different. But I can attest that radiation has helped. Blessings to you!

I've had MBC to the bone (spine and pelvis) for three years. Had a bunch of radiation to thoracic spine and pelvis in 2018. Recently pain has gotten really bad, so I had a dorsal spine MRI that showed a lot of scar tissue (sclerotic tissue) around the areas of previous radiation. I have a PET coming up Sept. 1 to explore further.

I've been on iBrance 100 mg and letrozole 150 mg (I think that's the dose) this whole time. Used to have monthly infusions of Aredia to strengthen the bones but since moving to Orange County early 2020 now have Prolia shots twice yearly. The Prolia shots have fixed my 20-year diagnosis of osteopenia so hooray on that count.

I'm looking forward to my appointment next week with my pain management doctor to see what to do about the sclerotic pain. Physical therapy made it worse, so I stopped exercising a month ago as we sort this out. Exercise is a big part of my mental health stability so I hope I can get back to it.

Good luck to everybody! We shall overcome.

blms profile image
blms in reply to

Some days are harder than others.

Timtam56 profile image
Timtam56

Hi blms. I’ve had MBC for three and a bit years now. In the first year I had some radiation done to my upper spine. It helps a lot. My mets are in my thoracic spine, all through my ribs and left shoulder, in my skull, and my left sacroiliac.

I’m on ibrance. I was on letrozole and was changed to anastrozole. I also have monthly Denocumab injections I think you call it something else over there. Xgeva? my oncologist was worried about breaks and that’s why she likes me to have denocumab monthly. my cancer is quite strange in that I tend to have pain that moves constantly from one met to another. That’s why my cancer was missed in the very first instance. It was because the doctor I was seeing for eight months and complaining about my pain to,.... kept telling me "well you haven’t got cancer because cancer pain doesn’t move and cancer doesn’t hurt."

My cancer does hurt although I know other people who are on exactly the same medication and it doesn’t hurt for them. I guess we are all different. mine does move and one day I will have pain on my left rib the next day I’ll have pain in my spine the next day I’ll have pain in my right rib. Etc.

I take daily Targin, which is slow release oxycodone. I also take daily Paracetomol osteo. Stronger Han most and also allow release, morning and night. And if I need breakthrough relief, I take either paracetomol or ibubrofen in between.

I hope this answers your question, and good luck with everything.

blms profile image
blms in reply to Timtam56

Hahaha! Bone cancer can and does hurt so much for that first doctor! You are probably very aware of your body and may notice things others don't. Then there is the pain tolerance level for each of us. I happen to have had my pain level checked metabolically and genetically through a pain center about 5 years ago. I have a very high level of pain tolerance (9 out of 10), so not alot bothers me. But this one in my neck is causing problems. Also, I am wondering if the xgeva is giving me this low BP and therefore passing out issues. Tomorrow I get a new bone scan and what terrifies me is also a CT of my brain.

Timtam56 profile image
Timtam56 in reply to blms

Please keep us posted. I can't totally understand your fear.And I have never had that test... But I know I have a really high pain threshold also. We really do put up with a lot.

blms profile image
blms in reply to Timtam56

Had bone scan and ct of head to look at brain. I would have preferred an MRI but the wait was too long. I have had a very high pulse for two days What the heck is that about!! I have not had anxiety problems, Lord knows there are a million reasons for us tot time I decided NOT to look. I will see onco in AM and see then. I know very little about the brain so I do not want to see something I do not understand and make me more crazy! Anyone have any ideas!!???

Timtam56 profile image
Timtam56 in reply to blms

I know what you mean. I am always fascinated by my photos of scans etc, but I would not want to look at that until the oncologist had told me what I’m looking at. You know that air it’s serious they will get back to you straight away. Try to remember the real things like that.

blms profile image
blms in reply to Timtam56

Yes. I do understand A lot of Info on the scan reports as I gave a medical background and I like to be irritated before she tells me then I can ask questions about what I wasn’t sure of. But the brain one frightens me and I don’t have that background knowledge. So maybe I’ll be pleasantly surprised tomorrow! Let’s hope so!

Itisfinished profile image
Itisfinished

I know about neck pain 😫 prayers for your scans and ct. 🙏

blms profile image
blms in reply to Itisfinished

Do you get pain in your arm from spinal mets?

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