Bone Mets Thread
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KBL - If the MRI is to evaluate your swallowing then a neck/face/orbit range would want to include both the upper and lower part of the esophagus. I would guess the images will include from about your clavicle to the top of the skull so they will also by default get a look at the upper portion of the cervical spine. I hope the Zometa continues to go well for you. I started out on Zometa and tolerated it fairly well. I usually felt achy and tired for about a day after the infusion. Sometimes it didn't start until a day or so after I was done. My MO switched me to Xgeva because it was so hard to find a vein that would hold an IV. Hope you get some good answers from your MRI :-)
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emac877, thank you for the great information. That makes perfect sense. I am up at 2:30 in the morning feeling achy. Just feeling it right now in my spine. It's not that bad, though. Hopefully back to sleep shortly.
Edit: It's worse. No fever, but every bone in my upper body hurts, including my ribs, and I have a horrid headache. Did anyone else have this more than the first time? I thought I would skate through. Oh, well. It will get better.
I’d love to know the reason it does give this side effect.
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hi everyone, I just wanted to share that today At 1 I’m having surgery, to debulk a lesion in my skull near my nasal cavity. This is causing my double vision , I’m nervous, they are going In through my nose so less aggressive, but if all of you can keep me in prayer. I will be in hospital 2-3 days try say. Then once I recover I start rads and chemo. Hugs to everyone.
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Best of luck Hopfull - that sounds uh... different to the usual bone mets stuff! But I hope you come through it in as much comfort as possible.
What are they radiating and what chemo after?
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hopefull2 just prayed for you.
Olma I did know about insurance possibly not paying BevJen told me that but I didn't know there was people on here that had it..but not to bone..hrmmm that makes me wonder if that is why the at the consult at Hopkins the guy never mentioned it.....i am still gonna ask at my consult next week at my cancer center.thanks for the info 🙂
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I also have bone Mets in other areas. Like my spine. Pelvic area hips. And ribs So I had a biopsy done to my hip recently that’s been sent out for all kinds of genetic testing n tumor testing. That’s when my MO will let me know exactly what chemo. Try need to be sure it’s from the same breast Cáncer and same hormone receptor or not And rads, will b whatever is left in the skull. It’s called stereotactic I guess and a couple of areas in my body that hurt. Like hips n a place near my spine. Im ready to throw everything at this. I’m still so young. I’m not ready to give up. I don’t think anyone is. Hugs ladies. All this is still new to me.
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KBL, the overall pain from the bone strengtheners is quite common. I found that it was particularly bad the first couple of treatments but then it got better and typically the achiness only lasted a day or so. If it's causing concern you can try taking Clariton (antihistimine) before your infusion. I haven't tried it but others have indicated it helps.
I'm struggling at the moment with a lot of pain as well. Hips, lower back and neck are all causing me grief (likely degenerative but...) and then layer on the overall body/joint aches from Faslodex.. yeesh. Are we having fun yet?
Hopeful... sending positive thoughts from Canada!
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I had a strange thing happen before and after being diagnosed with a bone met at T5. My back use to always itch in that location. I was constantly scratching it and asking my husband to see if I had a pimple or bite there. This was even before I knew a had a tumor. I remember the day I had a bone biopsy I asked the nurse if anyone ever talked about that. She said no one had ever mentioned it to her. I received SBRT radiation on the tumor at the end of March and the itching continued, not really sure how long because I just kind of got use to it, but recently I noticed it had stopped. It may be completely unrelated to the tumor but I just thought it was worth sharing. Has anyone every experienced itching at a tumor location?
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Hopefull2, I hope your surgery went well. I’m thinking of you and sending a hug your way.
Sadiesservant, I had read that about the Claritin too and actually took it two nights before and last night. It didn’t help. I’ve been keeping the Tylenol onboard. I can tell you if this happened every time, I’d ask what else have they got. I will keep having it for now and giving it another try. I can’t say I wasn’t warned this might happen. I’ve been sleeping on and off all day.
I’m so sorry you’re having so much pain.
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Question as I'm reading about KBL -- does xgeva have the same effect on your system? flu-like symptoms and bone pain? I haven't started a bone strengthener yet, but we were supposed to start with Zometa, but because I have some kidney concerns, the hospital pharmacist said I'd be better off with Xgeva.
Thanks for any info.
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BevJen - Xgeva is easy easy easy - quick injection and maybe (at least for me) a bit of fatigue or the 'wobbles' as I called them back when I was still on crutches. Made my pelvis and legs feel a little uncomfortable for a few hours and really I just needed to lay down a bit. None of this flu like feeling of the other one. Make sure you warm it up before injection.
ReneV - No mets itching here, but I had a scaly rash on my left elbow for at least two years before diagnosis. It itched on occasion, flaked, etc. I thought it was psoriasis or maybe eczema but since I started treatment? Completely gone. I don't have mets to my elbow but its all healed and I didn't start moisteurizing more or anything.
Hopful - makes sense re: chemo depending on what comes back. The rads will help the pain you have now, but remember that their effect is cumulative too. Some people jump right off the table after three sessions feeling great, others it can take a while for it to get in gear, but it IS working!
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Hi BevJen,
I can't say for sure. I'm in Canada so was prescribed pamidronate which is a bisphosphonate. As I understand it, Xgeva (denosumab) and Zometa (zoledronic acid - also a bisphosphonate) are similar agents so I anticipate that they will all have similar impacts. I'm not sure how they decide which one to use but suspect cost is the big driver here.
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Yes, cost is a factor. My doc said we’ll start with Zometa and go from there. I’m assuming it will get better, but if not, I’ll ask for Xgeva.
My BUN/creatinine level was a little high, and I had a high potassium level. That’s a first. I don’t know why, so I’ll keep an eye. I did drink a lot of water on Sunday, so I doubt it’s dehydration. I don’t tend to pay attention to the numbers unless they go out of whack for multiple months.
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We've actually hit the pause button on pamidronate for me due to rising creatinine levels. Verzenio is the culprit but bisphosphonates can contribute so my MO said let's stop. Not sure if he will want to put me back on...
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KBL - my first Zometa dose was a hideous experience. Seriously the worst experience ever - for about 12 hours and then it started to subside. My MO’s knee jerk reaction was to put me on Xgeva. The worst part for me was the bone pain. After reading about Xgeva, it wasn’t a guarantee that I wouldn’t get bone pain so I gambled and stayed with Zometa. I told my MO that if I was going to suffer with bone pain, I’d rather do it every 3 months rather then every month. Many don’t get bone pain at all. For others the symptoms subside as they stay on it longer. So I gambled. The next dose I took Claritin, I had them give me extra saline in my IV, infuse over 30 minutes (not 15) and my MO prescribed dexamethasone tablets. I don’t know what worked and what didn’t but my next infusion was much easier. Not great - I still felt very fatigued for a couple of days but that I can handle. I wish I knew what worked and what didn’t. If my next infusion goes even better, I will start to ease up on my precautions. Good luck
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RK2020, thank you. It’s nice to know you get what I’m feeling. It’s been awful. They did infuse over 30 minutes and I did take Claritin. They even gave me Tylenol. I’m going to try again and see if it’s better. I am hoping the pain eases tomorrow. So you’re having it once every three months?
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KBL, I am sorry your are not feeling well. I did tell you right after my Zometa infusion I was feeling ok however, after 24 hr of infusion, I developed fever 100.4 while I was under Motrin, I could barely breathe and DH paged the doctor who said to take me to emergency room. I was hesitant to go to emergency and I waited home when a nurse told me some people have SE worst than chemo. It took another 24 hr of awful pains and aches and the 3rd day I was fine. I mean, even the aches I had before zometa are gone. I read you get bone pain while your bones are getting repaired. I hope you'll feel better soon.
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LillyWasHere, sounds a lot like my situation. I’m having trouble breathing, but it’s just because I have lots of pain in my ribs. It’s not where I can’t handle it. I, thankfully, did not get a fever. That would be worth it if the pain went away and stayed away. I would like that. I’m sorry if you already said, it’s hard to remember, but are you still on Zometa? You just had the reaction the first time?
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I also had kind of rough time with the first couple of Zometa infusions. Really bad nausea the night after (like at 4 in the morning) and I ran a fever of about 101 just for about a day and a half. After the second infusion, I took a Compazine before I went to bed, but it didn't really help the nausea. I never vomited - just felt really bad. I didn't note any SEs with infusions three and four.
I've been keeping a spreadsheet with my Ibrance dates (and holds) and also my dates and SEs with the Zometa infusions. I love spreadsheets! It helps me keep track of everything.
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After the first year several folks go on Xgeva every 3 months. I agree with the above comments, quick easy injection in the arm. Nurse warms up the Xgeva. Fairly straightforward process. I've been fortunate, no side effects. If you are struggling on the Zometa try giving Xgeva a chance.
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For those who developed a fever later in the evening the first day after Zometa (I know what Lilly did) did you call doc? I'm at 100.9, but I just took Tylenol at 7:00. I'm on Ibrance as well. I'm sure Zometa is the reason, so there won't really be anything they can do.
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KBL - Yes, I get Zometa every 3 months. I get my third treatment next week. 🤞🏻I got my first treatment just days after being diagnosed and it was given to me on the fly after I saw my MO to get my biopsy results earlier that same day. I had no chance to research my new drugs. I had no idea what to expect. By midnight I was in so much pain I didn’t know what to do. I told my husband that if this is what I can expect out of Stage IV treatment, I’m going to just throw in the towel now. Fortunately, my Zometa SE’s became tolerable quickly and then were gone. My first PET scan showed that the triple threat of Fulvestrant, Ibrance and Zometa are working their magic. I really hope you start to feel better soon. Please post an update.
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RK2020, that must have been so scary. I can’t even imagine. I’m so glad the combo is working. I just started my 15th cycle of Ibrance/Letrozole.
My fever spiked to 102 last night, but it started to come down about an hour and a half after taking Tylenol, and it’s back to normal today.If I can say it’s better today, it’s only because the severe pain in my shoulder blades is better, but now I’m having pretty heavy spasms mid back. I’m going to try to do my mile walk today and get my body moving again. I haven’t slept as much as I did on and off yesterday in a really long time.
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Oh KBL, I wish there was something more that could be done to take your discomfort away. I hope you feel better as the day progresses. Cancer sucks. Virtual hug.
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Hmm... I would let your MO know about this KBL as those symptoms don't sound like what I experienced. Mine was just body-wide myalgia. All my bones ached from my toes to my neck. Of course, the problem is, once we are hurting we can easily cause more kinks/pains from holding ourselves funny. I had that issue yesterday morning with issues with my right shoulder blade from sleeping funny. Sigh...
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RK2020, thank you so much. The spasms stopped after I went for my walk. I’m still sleeping on and off all day, but I can tell it’s starting to calm down a bit. I don’t think I was expecting to be hit that hard with that side effect. I pretty much think I’m going to breeze through everything. I don’t know why. I’ve been taking the Tylenol every six hours, so I’m sure it’s helping. I’ll give it one more try next month and see how it goes. I wouldn’t keep doing it if it does that every month. It’s crazy. Lol. Thank you for the hug. I’m sending one back your way. I appreciate it.
Sadiesservant, I can almost bet that’s what happened. I probably tensed up trying to protect my back, so it didn’t like it. It cleared up once I started moving. I’m still feeling the body aches, but they’re better than they were yesterday. I hope your shoulder is better. I totally agree, we can tense up and make things worse.
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Ts542001 thanks for the information, I would have never known about this possibility if you didn’t share it here. It is another reason for me to change my MO and RO, both of them made me sure there is no treatment for Mets in epidural or cord space!!!!
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Had a telehealth appointment today to discuss some results of a neck MRI I had. I have a swallowing issue, which we still don’t know the reason for, but it did show I also have cancer in my cervical spine, so cancer throughout the whole spine. I wasn’t surprised. I have some sinus issues showing as well, but I don’t think I’m having any symptoms from that, so I’ll leave that alone for now.
Anyway, I told her about the 2.5 days of flu-like symptoms, and she said on the next infusion we’ll do it for an hour rather than 30 minutes. Anybody else have Zometa infusion for one hour? I hope that helps.
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KBL, I had the flu like symptoms with the first two infusions of Zometa. The second two weren't so bad. I'll have number 5 on the 9th of September. I've started taking a Claritin tab the day before, of and after the infusions. No idea if it helps, but my MO said it couldn't hurt.
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I-beat-it , I am glad you decided to change your RO and MO. Hopefully the new doctors will act quickly about the mets in the epidural space.
I had a consult with the RO and she said that the mets in the epidural space needs to be treated soon so as to avoid future complication of spinal cord compression. At present she doesn't see this risk but she doesn't want to wait. So she is planning on SBRT to T5 to T10 area. Previously radiation to the spine (C7, T-3 and L5) had helped me with pain reduction and I am hoping for a similar outcome this time. It had also halted the growth of the tumor.
Please keep us posted on your future treatment plan with the new doctors.
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