Bone Mets Thread
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I failed Piqray/Faslodex or it failed me. My most recent scans showed new mets in my proximal femur, base of skull, and more activity in many of the other bone mets. I have a lot of pain in my sacrum/ pelvis.
We are waiting to hear from Interventional Radiology regarding the possibility of a biopsy of the proximal femur.
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So sorry, dutch iris. I hope you find a more suitable treatment and some relief soon.
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Dutchiris, sorry to hear it. How long were you on Piqray? I've been on it 3 months.
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Dutchiris, I just looked at your signature line to answer my own question, and we have such a similar path in terms of date of diagnosis and lines of treatment! Wow. I've also only had bone mets (hard to biopsy), except for a miraculous met to skin on my upper back, which they popped out and got a great biopsy for genomic testing. That's when they realized I'm HER2-, not +. Thus Piqray. When it fails me, I have one more line of treatment: Keytruda. I refuse to do cytotoxic chemo anymore (I've done 4; Gemzar doesn't show up in my list for some reason).
They're wanting to do a biopsy on your femur because....? They're not sure it's cancer? They need to do genomic testing?
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does anyone know what this means. Saw in my bone scan tort yesterday and am freaking out. Does this mean I have skull Mets too. TIA
Improving focal uptake within the calvarium. Consider correlation with head CT.
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ditchiris, sorry to hear of your progression. I pray your next treatment works for you.
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Pearl-girl ....I had been on Piqray 3 months. My routine 3 month scans showed progression.
My previous progression was to ovaries and was ER-, PR+ (moderately), HER2 low. Then Xeloda (oral chemo) for one year. They were less than confident Piqray would work given ER- but I was moderately PR+, so we tried.
They're wanting a biopsy to showing what the new Mets are hormone driven or not and the possibility of any other changes or mutations.
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Chathamlady - I had a similar finding on my last bone scan. It doesn't always mean a bad finding. Bone scans are notoriously non-specific so they almost always read a report showing uptake with "consider correlation with ___" just as a CYA and because other modes of imaging are more specific. My MO said that this finding is more common with people on cancer therapies. They aren't sure why. I guess the theory is it likely has something to do with cancer drugs effects on the skeleton. I had an MRI shortly after that was seen on my imaging and it was completely normal. Hope that helps ease the anxiety a little.
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Dutchiris, sorry to hear about the progression and increased pain. Have you had radiation to treat the mets? I’ve had several rounds of radiation to deal with pain and symptoms associated with the bone metastasis including to my hip and have found it remarkably effective. As to Piqray, it’s interesting that they no longer prescribe it here or check for the mutation as apparently the results didn’t stack up. Lots of hype but in the end there wasn’t enough of a benefit to keep it on the drug list here.
I’m also waiting to hear back from my MO regarding what’s next for me after recent progression on Xeloda. I must admit that I’m getting a tad stressed as I seem to be running out of options. I’m dreading “the talk” which is looming. Not responding well to IV chemo and I’m hormone resistant despite the strong ER receptors in my biopsy. Hoping a clinical trial presents itself but being so heavily pretreated makes it tricky to find anything. Sigh…
Hope your team gets you on something to beat back the cancer!
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The rad group is recommending a PET scan.
Sadiesservant - I had rads to L2 and sacral mets approximately 2 years ago. The I had one met in my sacrum. Now there are 3.
Stupid question maybe but how many have gone to the ER just to help get pain under control? I don't know why I feel foolish or like someone won't believe me.
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That’s interesting dutchiris. I had rads in April to C7, T1-T2 as there was a large lesion that was causing pain in my right shoulder and issues with my right arm/hand. I’m now having pain again in my shoulder, although not as intense, and more numbness in my arm and hand. I assumed that it had to be another lesion somewhere else in my spine given the recent radiation. I didn’t think it would grow again. Another question for my MO.
I can’t help with the ER question as I avoid that place like the plague. Our system is stretched beyond belief with many people having trouble accessing a family doctor. As a result, the ER is a zoo. You can wait 6-8 hours to be seen unless you have symptoms of a heart attack or are spewing blood. 🙄
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Dutchiris, I'm surprised your MO hasn't provided you with pain relief. I'm with sadiesservant: I wouldn't go to the ER if I could help it. It just seems like your MO should be listening to you and referring you to a pain specialist or prescribing pain relief that makes a difference. I'm so sorry to hear this. Chronic pain is miserable.
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Dutchris- I agree with the others- get pain meds from a doctor who knows you, ER doctors may give you a few and put a note on your chart re drug seeking- stupid, but, have seen it done- not to mention the wait in an ER.
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I did go to the ER and they gave me 3 days of paIn meds. I had sent a message in the late afternoon yesterday but didn't hear back. I doubted myself and tried to be tough thinking maybe I overdid or something. Sometimes I am my own worst enemy. Even my body failed me.
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Just checking in for folks on Xgeva for bone Mets. My bone met to L2 no longer lites up since doing SBRT 3 years ago. Out of nowhere my MO mentioned about going off Xgeva since no further bone metastasis. I wasn’t prepared for such a discussion. Hence I asked can we continue for another 3 months, when my next injection is due. MO was fine with this plan. Anyone else in this situation? Anxious about going off Xgeva due to the fear of potential fractures and progression. Thanks for input.
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Dutchiris - I'm glad you got some pain meds. I would definitely stay on your MO for pain meds or ask for a palliative care doc. I know DEA rules vary for different states. Where I am my PCP and the ER is very limited in what and how much they can prescribe and for how long. My MO has much more leeway for ordering opioid and non-opioid based pain meds and has no hesitation in doing so. Were he not that way I would ask for a palliative referral. Anything to keep your mobility and quality of life tolerable. I hope you find some relief soon.
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Regarding pain control, I have an appointment tomorrow morning. Regarding the progression and possible biopsy, IR wants more information. I am scheduled for a PET scan on Thursday.
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I have a few questions about the pain people are having with bone mets.
Is it at rest also or only with activity (like getting out of bed or a chair?)
Does it hurt to lean on the area or touch it?
Does it flare with activity and then calm with the Motrin etc?
Did changing to a more effective treatment (after progression) change the pain? Did a more effective treatment help?
thanks
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Hi nkb,
I had severe pain in ribs, sternum, spots on shoulder, hips that were worse at night resting, but generally had some level of pain all the time. I needed Aleve - which I found more effective than ibuprofen, everyday, in addition to acetaminophen. Treatment with AI + CDK4/6 inhibitor stopped pain completely after 4 months on meds. That was nearly 4 years ago. I don't have bone pain anymore, though sometimes hips hurt after lying on them for awhile, but not enough that I need painkillers. My pain now is from apparent activity in the peritoneum causing me severe stomach/intestinal pain and partial bowel obstructions. My scans show extensive treated osseous mets, not currently active. I wish you luck!
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Hi nkb,
I had severe pain in ribs, sternum, spots on shoulder, hips that were worse at night resting, but generally had some level of pain all the time. I needed Aleve - which I found more effective than ibuprofen, everyday, in addition to acetaminophen. Treatment with AI + CDK4/6 inhibitor stopped pain completely after 4 months on meds. That was nearly 4 years ago. I don't have bone pain anymore, though sometimes hips hurt after lying on them for awhile, but not enough that I need painkillers. My pain now is from apparent activity in the peritoneum causing me severe stomach/intestinal pain and partial bowel obstructions. My scans show extensive treated osseous mets, not currently active. I wish you luck!
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I should have added, it did hurt to touch or press on the spots where I had bone Mets, sometimes a little, sometimes a lot. I was also very short of breath, hurt to take deep breaths. After a few months of treatment, scans showed some healing rib fractures. I don't think exercise affected the bone pain generally, but it did limit my activity because I couldn't catch my breath, or back hurt too much.
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Dutchiris, best wishes to you on your upcoming scans, and on getting pain meds from your MO that work. I think switching treatments can definitely help with pain too. E.g., on Femars I had achy hips and joints which disappeared on the switch to Faslodex from Femara. Changing from Ibrance to Verzenio also helped with my developing stomach pain for a long time. My MO says too many meds in pantheon for one to put up with pain that isn't being addressed by current treatment!
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moominmamma,
I notice you received Everolimus. What was your experience? What kind of side effects did you have? Did you develop stomatitis? How was the stomatitis treated? Did it resolve? Did you have to have a dose reduction? Are you still on Everolimus?
Wendy
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Bone pain with me varied.
pelvis/femur hurts when moving. Had rads to right side and not does not hurt as much. Only with over use.
left arm - pain was on and off and hurt to the touch.
Ribs - hurts to breath deeply and to touch.
joint pain knees ankles hips hurts to move or sit still. radiates pain for about 1 day at a time.
Pain relief - advil but will ask for better meds next time. I try and gut through it waiting for my current target therapy Piqray to work but no success in that area yet.
All fun I tell ya!
tigre
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Thanks Tigre- I hope an effective med does the trick for you and me. I didn't have pain for the first 5 years of bone mets- now if DH hugs me I feel like I might crack a rib! I feel fragile! rest seems to help also
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just diagnosed with covid and feeling pretty rough just wondering how anyone was that got it Hoping I can continue my treatments
Feeling pretty scared right now
Hugs to you all 🥰 Bet
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Beth, I hope you recover quickly. Rest, lots of fluids, and try not to stress.
Both my husband and I had Covid a few weeks ago. We are both 73 and had been vaccinated and had boosters. We had different, but mild symptoms. He had fever, body aches and fatigue. I had mildly sore throat, some congestion, runny nose, fatigue. I took Paxlovid. We both recovered in about 7-10 days. My MO told me to suspend Xeloda and Tukysa for a week. Right after I recovered, I had a CT scan, bone mets were stable, and a blood test, good results.
Again, best wishes for a speedy recovery.0 -
thank you mocogram I appreciate the well wishes and the information as well and glad your scans and blood tests were good after. So happy you are recovering
I know many people that have had covid but none that are stage 4 cancer too so your reply helped. Take care Bet
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I had it start of August. By the time i was offered one of the treatments I was pretty much on the mend, so didn't take any. It was three days of scratchy throat/headache, three days of the WORST runny nose I have ever had and then a bit of coughing. I also lost sense of smell for two or three weeks and then it turned on like a lightbulb. It honestly wasnt that bad, and I was told to hold my Lynparza for a week while I recovered.
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Beth,
I also had Covid in August. It was no big deal-a couple days of fever and achiness, then some congestion in my nose and a bit of phlegm in my lungs. I ended up quarantining for 10 days b/c I kept testing positive but I felt almost 100% after 5 days. I didn't take anything. I stopped Ibrance for a few days and then it was my off week so it didn't affect my treatments much at all. Hope you feel better soon.
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