Bone Mets Thread

joined this group back in Dec 2019 when first diagnosed with MBC, bones only.

So far, I think, XGEVA monthly shots have kept bone mets stable. (Had rads to thoracic spine and to right and left acetabulum in January 2020)

Been on a few different systemic treatments, too, since 2/2020.

Went on Afinitor/Exemestane in Oct 2020 but suffered pneumonitis as a side effect. Diagnosed as such and hospitalized due to LOW SpO2 in January 2021. SpO2 as low as 71 (should be 95 or so) So was released on 2 liters of oxygen 24/7. I am improving but still on oxygen. Have a home concentrator, portable concentrator, and tubes of oxygen.

Mid April, had my regular scans (every 3 months— CT scans and Bone Scan). Results were stable. BUT radiologist found pulmonary embolism. Was immediately put on Eliquis. Learned last week that will probably be on Eliquis for the rest of my life.

Ugh

My question for the group— what can I take for bone pain? I had been doing well on regular ibuprofen. Now I can’t take ibuprofen as it is also a blood thinner. I can take Tylenol but that dies nothing for pain. I need the anti inflammatory of ibuprofen—- that is what helps.

Anyone else been on blood thinners and have suggestions??? Kinda worried about dealing with cancer pain further down my journey now that I am on blood thinners. (Yes, I realize the PE can kill me long before cancer does)

Hoping for the very best for Bev and for you, dllttkemann-

DodgersGirl, I would suggest you see if there's a palliative pain management specialist affiliated with the cancer agency. I think they would be the best at figuring out your meds & their incompatibility. Fwiw, I have hydromorphone for break through pain and took it for bone pain last abraxane cycle but it really doesn't do much for it - just makes me dozy and sleep through the worst of it.

you could try T3 (acetaminophen + codeine) or tramacet (acetaminophen + tramadol).

Are you on gabapentin? I'm on it BID right now and there was talk a while back of adding a midday dose during chemo week.

dlittkeman, - best wishes for you!!!! I'm hoping it's all trending in the right direction!

for me, can you all pls hope that tumor markers are NOT indicative of anything? mine are ever so slowly trending in the wrong direction

Moth - Hoping that tumour markers are useless for you and mean absolutely nothing.

Dlittkemann - On the flip side, I'm hoping that your tumour marker are indicative that your treatment is working.

My thoughts are with Bev and hoping everything is okay.

DodgersGirl - I am on Xarelto for a blood clot in my arm and have also been told that I will likely be on it forever. I was advised to take acetaminophen first for any pain and, if that doesn’t work, to then take ibuprofen. I assume they’re not as concerned with ibuprofen because I don’t have a PE. Since neither of these options will work for you, I would follow Moth’s suggestion. I hope you are able to find something that will help with the pain.

Thanks everyone and Moth I pray your markers mean something good for you! I read they can mean nothing. It can be something else causing them to go up. So many difft factors. Praying for you too Moth x

I take hydrocodone/acetaminophen for bone pain. My doctor gave me 10/325 and I cut them in half or fourths and start with 2.5 mg and work my way up. 2.5 mg will usually (but not always) take the edge off without making me loopy (I still need to function!) and I’ll take 5 later in the day when I can relax. If it’s bad I’ll take 10 but it’s not often. My bone pain is only in my pelvis and I can tolerate it fairly well. Spine pain I think would be a different story. I won’t take anything if I have get on the freeway - need all my wits for that. Do ice packs or heating pads help, short term until you can take something stronger? I would even consider a glass of wine or shot of whiskey at night if my chemo allowed it and I wasn’t taking other drugs.

Dodgersgirl, will they give you a low dose daily steroid? I take 5 mg prednisone/day, not much but I feel it when I don’t have it. I am not a fan of the joint pain from AIs; they’re horrible.

Dodgersgirl....I have found some relief from Lidocaine patches for pain from my spine mets/fractures. That's partly because I'm not keen on taking pain meds, especially if they might have cognitive effects. But if your joint pain is more diffuse that might not be a solution....my prescription only says to use one at a time, though the box itself says up to three, and they are fairly localized.

Nicole...thanks for the update on Bev. Praying she gets better.

Dodgers, I take occasional Celecoxib/Celebrex for bone/joint pain and it works well- it is an NSAID (anti-inflammatory) but does not thin blood?

Cross posting question. I had a brain MRI today, which said the brain was fine. Then I reread the report. It talks about possible cervical mets, which I already know I have. I am covered in bone mets. Then it says the calvarium has the same abnormal finding in the bone marrow, which seems to be saying it’s in my skull. Has anyone had this and had bad headaches and funny feeling in the eyes? I can’t drive right now because I feel wonky. I know Sadiesservant commented on headaches, and Ihave a private message out to her.

I will be talking to doc, but I don’t know how this will be handled. I just want the wonky feeling and headaches to go away.

Thank you, Snooky.

Thank you, cyathea. Can you let me know if your headaches go away. I would think that’s not the cause for me only because I can’t drive due to feeling very odd as well. I don’t have brain mets, which is so good to hear. It’s in my skull, which doesn’t surprise me since it’s in every other bone as well.

S3K35, thank you. I had an eye check in December for new glasses. I asked the optometrist at that time to make sure to let me know if he saw anything. He said my eyes were all good.

I’m on Ibrance and Letrozole, my first line. June will be two years on this treatment. My husband is curious if I need to switch and the medications are having an effect on me. I may switch I know the Letrozole is really starting to affect my joints.

I have a telehealth appointment Monday. Unfortunately, the nausea and not being able to eat is how my mets were found in my stomach. I feel the same way I did then. I didn’t have headaches then. I’m wondering if they’re coming from my cervical spine. My sister was here, and she said my eyes look puffy. Maybe that’s why they feel so heavy.

So are you saying Tramadol ER doesn’t have the side effect of drowsiness? My main question is if it causes constipation. I have to be very careful with that. I already have issues.

Olma61, that’s probably a good idea. I just had a chalazion taken off my lower eyelid about a month ago and should have asked her then. I might make another appointment. I am not sure if I should do that or see ENT because reports say my sinuses are a mess. The only thing is I have absolutely no sinus pressure or problems with my nose or sinuses. It’s all one big pain in the ass. Man, I’m tired of doctors. I’m sure we all are.

KBL, for me, Tramadol ER doesn’t cause as much constipation an opioids do. I take Miralax twice a week to make sure I am regular. I guess everything is a balancing act. We have to do whatever it takes to be pain free!