Bone Mets Thread
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Hope so! Thank you so much. My MO doesn’t get too excited but I will take it!! Seemed like a decent drop to me. Fingers crossed.
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Thank you KBL and Sadiesservant. I will mention it to my MO when I see her at the end of the month. It's been about 5 months since I've had any imaging so maybe I'm due? I saw my primary doc this morning and the ear infection is cleared but some swelling remains so I'm on an eardrop with steroids for that. She also thought there was a possibility of TMJ so I was ordered some PT and a referral to acupuncture. I have never done acupuncture so I will say at this point I'm cautiously curious. Not sure what I think of that. She agreed with you that it sounds like an ear infection but that so much of this could be compounded it's hard to know. I got a shot of Toradol and that with the Tylenol has helped tremendously. Today and I feel almost normal so I'm counting my blessings where I find them.
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Hello all, I am new to these boards and decided to join because my last scan wasn't what Inwas hoping for. I had a brain met in 2017 which has been successfully resected and radiated and a liver met. A brain recurrence was blasted successful by Cyberknife which males me NED in the brain since 2 yrs. I am on Herceptin and Perjeta IV and switched to Phesgo recently.
Have been NED below the neck until on my last scan a suspect tiny 13mm lesion was seen on my 3rd lvb. It's sitting in the last third of the left vertebral arch on the inside of the vertebral canal.
I am not ready to leave my NED train already, even started to work full time but currently I need some hope. No other lesions in the monitored area around. Compaires to the last scan 3 months ago it has already been there an measured 10mm and showed up diffuse. I don't get the growth from zero to 10mm in 3 months bit then only a likely growth of 3mm in another 3 months. No pain and tumor markers in the normal range
My doctors suggest to monitor it and add xgeva into my mix.
Is there a chance the lesion could be benign like a cyst or similar?
All my good thoughts to you
Gerda
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mine went down by 30 after 1 month on Verzenio and 2 on lettrizol and I’m doing the happy dance. I think you should too!!!
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So good to hear. Happy for your numbers too and thank you for your reply :-)
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hello. I am not the patient, but my mother. Her scans showed spinal metastasis. Can anyone share stories about them with spinal metastasis that lived for more than 10 years
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Loving, You should check out a Her2-positive thread, ten years is very do-able for her cancer subtype..
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My post maybe disappeared between the recent posts. Has anyone an idea? My oncs want to radiate it now with curative intent as I am in the oligo fraction but I am so much afraid of a likely receptor change and that lesion will keep popping up if it's not benign
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Gerda, I don't quite get why you would not want to just radiate that spot and be sure its gone? Whatever the receptor status of it might be, if it is cancer, you have the chance right now to get rid of it.. And of course, XGEVA, it stabilizes bones but also coats them and can help prevent bone met spread
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Sure I want it to be radiated. Sorry if this hasn't been clear. Anyway I am afraid the tumor changed and the Her2-meds stop working. Would Xgeva be the same as Zometa?
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Gerda, I personally didn't reply because I don't have any sort of educated answer for you. I lean on Curious, as her guidance and knowledge base are typically educated and spot on. The best of luck to you...and to us all.
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Hi ladies I do not see a thread for Faslodex? So i am going to post here and bone mets thread.
About 4 days ago my neck and back were hurting thought I either slept wrong or that it was my mets in C7 and T3 acting up but usually that feels like just burning in the spine. Then I got my first faslodex shots Thrusday and last night my spine (where my mets are) and my whole upper back and neck started hurting so bad like not just the spine the musles too is this from the Faslodex?
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Hi NicoleRod,
Here's the thread for Faslodex: https://community.breastcancer.org/forum/8/topics/816419?page=114#idx_3393
This thread is fairly active; it's not unusual to experience muscle pain/spasms after Faslodex shots,
- I hope it eases up soon.
Meja
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Gerda, I’m oligo too with a single met to my hip bone at diagnosis. After nearly 4 years stable, the spot woke up and became active again. My team does not believe the pathology changed or that Herceptin stopped working but I did get into a trial (EXTEND) to see if radiation with systemic therapy is better than systemic alone. It was radiated last July and has now completely headed. My treatment has changed to address my brain mets but Herceptin is still a big part of it.
I’m also on Xgeva (a shot every 6 weeks), from what I’ve read zometa is similar but Xgeva has better results reported and a higher cost.
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Bev, I wish you speedy recovery, please do check in if you can.
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Thanks Maja
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Gerda, my experience with bone mets and HER2 meds is similar to illimae. Was NED after initial treatment with Taxol, H&P, had one spine met become active in early 2019. Had that one radiated 5/19 and have been NED again ever since with no change in HER2 meds.
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It's good to hear you are still NED without a treatment change. My doctors now assume it could be hemangioma / bone island as they mimic metastasis but anyway it will be radiated. If it's benign the bone gets stabilized. If it's met we'll hopefully get rid of it. Glad there is a plan.
I am still hoping for people chiming in who had benign lesions docs assumed they were mets.
Have a good weekend
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How do I know if I need to go to the hospital if I am not sure if my spine got fractured? I have been in pain in my neck and back spine where my mets are C7 and T3 really bad since friday night also my sacrum is really bad pain too (also have mets there) I cannot tilt my head down I just dont know if should go to hopstial or just wait and talk to doctor tomorrow??
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Nicole...I have been having terrible headaches that seem to come from my neck area and goes up the back of my skull around my eye and ear on the left side. I would always get these same headaches on occasion but it's been daily since 4/14. It all happened a few days after I received my Covid vaccine. I was thinking it was my body reacting to the Covid vaccine and causing inflammation but now my doctor wants to send me for an MRI to rule out a brain tumor. I wrote my own details in the Ibrance thread. But, I was just wondering if you had the Covid vaccine? If so maybe it's causing inflammation? I'm sorry you are still in so much pain. I know how much it sucks.
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Jackie.. No ...no covid vaccine...I don't have headaches either just terrible pain..I originally wondered if it was from the Faslodex shot on Thursday...but this in the spine and muscles and ONLY where I have mets....and plus I use to get Faslodex shots 2 years ago and never felt any of this..(I didn't have spine mets then)....
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Nicole, when was your last scan? It's not very likely all your met's sites start hurting at the same time - especially after a systemic event
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Nicole - I hesitate to chime in on whether you should go to the hospital or not. I feel like the best person to decide that is you. I will say that in your shoes, if there was any question at all about a fracture, particularly in the cervical region I would probably go. I say that only because I am one who put things off historically and I regret that. When I first saw the dimpling on my breast I think my gut feeling was that something was wrong but I talked myself into believing that I had cellulite for about 6 months before I actually asked about a mammogram. I was 40 and didn't think I was a high risk. By the time I had it checked out I was stage 2. When I first started worrying about mets I convinced myself I'd torn a groin muscle and hobbled on that hip for two months before I talked to my oncologist who ordered an MRI. I'm learning now that if I have a legitimate fear with any rationale at all, I check it out. Even if I end up feeling like a hypochondriac. That's just me.
GerdaM - Not sure we have the same situation at all but I do have a non-metastatic bone cyst. I had several bone mets when my progression was discovered. This past year a spot showed up on my left shin that is about 6 inches long. There was some question that it was a met and what should we do if that was the case. It was looked at finally by an orthopedic oncologist who decided it was a benign cyst. I never had any biopsy on it. I am relying on his expertise in reading the films to determine that. In any case, the treatment right now is to watch it and wait. It lights up like a light bulb on a bone scan but also shows up on an x-ray, something my other mets don't do. So, I don't know if that helps you. My treatment remains the same and I remain stable with my other mets without progression.
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Thanks ladies. I decided last night to take a few motrin and xanex and wait it out. Oddly enough when I get up from sleeping (and this happened Sunday morning and today) my pain is much better...I am thinking maybe that is bc there is not pressure on the spine. My pain is worst when sitting. Also I notice my pain is worst on the left side of my neck and back...and again oddly enough I have had to sleep on the left side since december from liver pain from the Y90 on my right side...coiencidence? Maybe...I just don't know I do want to see if my MO mentions anything thing about the faslodex since I got the shots Thursday (first ones) and pain started Friday... we also upped my Afinitor dose Thursday to 5mg....
GerdaM...I had. PET scan done about 4 weeks ago there was progression in C7 and T3....I have an MRI with sedation scheduled for June 16th....1. they couldn't fit me in with anesthsia any sooner than that and the RO told my MO he wanted to wait anyway till then to see if the Afinitor would do anything.....
Right now this morning I feel a bet better I will let you know what my MO says.
Thank you again for the responses.Its really great not to feel so alone when in these situations.
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Nicole, glad your pain has subsided. Cervical mets (for me) hurts more than any other spots on my spine and yes, sitting for longer periods of time doesn't help. It seems like you had multiple things going on which could have resulted in increased pain - faslodex shots, increase in Afinitor and progression. I take Celebrex (anti-inflammation med) along with long acting Tramadol (for pain) and Dexilant (for stomach issues). This combo seems to help keep my pain under control. It is good that Motrin helped you with pain relief but you may want to ensure you take something along with it to minimize your stomach issues (Motrin gives me stomach burn).
Faslodex can cause pain, depending on how the shot was given. My nurses always warmed up the syringe to room temperature and was very slow while injecting. She asked me keep moving after the shot to distribute the medicine and also to gently massage the area so it doesn't harden up. I guess each onco nurse does things differently but this was the advice from my nurses and I think it definitely helped.
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S3K5...wanted to let you know I got the dexilant for free from the Manufacturers THANK GOD!!! It has definitely been helping and yes the motrin bothers my stomach as well that is why I don't think I could take the Celebrex..also why I am so nervous about getting cyberknife to the spine they give steroids to help with the esophagus issues which everyone (except you if I am remembering correctly) gets ....ya know my luck or lack there of with side effects so I will most assuredly get those issues and wont be able to take the steroid bc of my stomach....My GI doc did say when the stomach is VERY BAD I can take the dexilant 2 times a day so maybe that would work if I had to take the steroid?
Yes lots of things going on at once. My husband wanted me to ask my MO if she could just admit me (rather than going to ER) and then they could do the MRI with sedation now? I just sent off that message .... so will probably be a while till I get an answer. I wish it were die off
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Nicole, re your spine pain, just wanted to mention that Afinitor lists bone pain as a possible side effect. I get quite bad bone pain in the days after my nab-paclitaxel treatment and this cycle it really hurt quite a bit in the area where I have a tiny met treated with rads. My RO said it's possible that local inflammation is the culprit. I guess we don't know the reason for sure but it was interesting that a vulnerable area really hurt more than the rest of my bones in post chemo days.
So glad your stomach med was approved by the manufacturerer! & it's working! So glad for you.
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Moth wow...yes that is exactly how I feel pain in the mets areas only....I hope that means its working lol
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ok all I heard from Bev. She is feeling pretty bad..she is still in hospital ..may go to short term rehab later. So let's just keep her in our prayers for quick recovery. I will cross post.
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Thank you so much, NicoleRod. I haven’t been able to stop thinking about her. She is in my prayers.
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