Bone Mets Thread
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NicoleRod thank you for the update on Bev. I'm so sorry she's having such a rough time.
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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)
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Hi all!
So I had tumour markers as high as 500 and now on cisplatin they are 104. I know we can’t put a lot of faith in these without a scan. That happens next Friday and I’m praying the scan shows no progression too🙏🙏🙏 I hope it means less scary scan than I had last time. Scans scare us all so much I know. Just hoping the markers are telling a true story. Any prayers appreciated. I am TNBC w extensive bone Mets.
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Hoping for the very best for Bev and for you, dllttkemann-
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Praying for Bev too. Hoping she is ok. Said prayer this morning for her.
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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
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Nicole, thanks for the update, please tell Bev (when you can) she is in our prayers for speedy recovery.
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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.
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I let Bev know everyone is pulling for her to get better and praying for her as well
Just wanted to let you guys know I have MRI of Sacrum tomorrow...been in bad pain since Thursday...
Also yes if anyone knows something that helps with bone pain besides ibprofen let me know too
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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
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Ilowen— thanks for your response. Tylenol doesn’t do anything for pain for me, never has.
Moth— no palliative care at my local cancer center. My experience has been to get ideas myself, do some online research, and then take it all to my MO to look for direction. I do have direct contact with my Cancer Center’s pharmacy so they know I can call them. Was hoping others on this cancer journey may have solutions I hadn’t thought of. 🙃
Also Moth— hoping tumor markers aren’t dependable indicators for you or that it’s like a tumor flair with a large die off of cancer cells. Will keep fingers crossed for you and keep you in my prayer
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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.
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WanderingNeedle— I have a few hydrocodone/acetaminophen left but honestly, they don’t work for me with talking an Ibuprofen, too.
I was on steroids when first diagnosed with pneumonitis which took care of all my aches a pains. Now that I have finished with the steroids, I got by with a muscle relaxer at night. Now, the joint pains from AIs have returned along with hit or miss bone pains. So far ignoring the pain most of the time or using topicals like lidocaine rubs but know the pain will likely increase with time.
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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.
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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.
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prairiesea— I definitely use SalonPas pads on my back. I have degenerative disc disease in my lower back and found those lidocaine patches very helpful.
WanderingNeedle— will keep that idea of maintenance dosage of prednisone in my pocket to discuss with MO He had mentioned that as an option if my pneumonitis didn’t heal Thanks
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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?
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Cure-ious: Celebrex? Ok. I have a script for that but haven’t taken any due to other pain meds at the time. Will check with MO to see if that’s an option.
Thanks
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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.
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KBL I feel for you, our in my prayers
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Thank you, Snooky.
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Hi KBL, I’m sorry you are dealing with headaches and concerned about brain mets. I don’t have brain mets but I have been getting headaches and eye pain lately. Sometimes I get a pain “zinger” that goes behind my left eye into my brain. I asked my ophthalmologist about this and he checked me out. He told me not to worry and that most likely the pain was caused by my eyes being dry. I had eye issues with my Grave’s disease before my cancer, but the dry eye became worse with chemo (especially Kadcyla). Since I’m no longer on chemo my eyes are not as dry and I have not been using the drops like I should. Thus, perhaps my eye/head pain is my own fault. 🤪 Anyway, I hope your headaches have a similar benign reason and that you can get some answers soon
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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.
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KBL, I have diffuse skull mets along with spine mets. I haven't had any symptoms with skull mets. They just show up on brain MRI which are done twice a year. So I am hoping your headaches and eye issues have nothing to do skull mets. Eye check up will surely rule it out. What treatment are you on now? Could this be causing your side effects? A message to your oncology staff may be good idea. Yeah, it's better to have any new, persistent symptom checked out by your MO.
Regarding pain meds, since I have diffuse spine mets, my pain doesn't subside with lidocaine patch or ibuprofen. I take Celebrex along with extended release Tramadol. I work full time so I need to be fully awake! I cannot tolerate any other immediate acting opiods. Everyone responds to different things - what works for one doesn't work for another! I haven't seen a lot of people trying Tramadol ER.
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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.
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KBL, you should see an ophthalmologist if you’re having trouble with your eyes or are worried about mets. The checkups done by the optometrist are not as in depth as what an ophthalmologist will do.
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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.
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Hopefully you’ll get the all clear for you eyes. Glad to see your brain MRI looked okay too
I know the “tired of doctors” feeling for sure. I am currently being uncooperative with my oncologist because my iron levels were low and she wants me to go to a gastroenterologist to make sure I don’t have internal bleeding. I didn’t make the appointment and I told her nurse that I didn’t because “I’m tired of sitting in the doctors office all the time”. I hope they don’t hate me for it. I probably should at least get my colonoscopy done I guess...but, yeah, I need a break first.0 -
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!
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