Bone Mets Thread
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Nicole, since you have only theee bone mets, I think you can qualify for SBRT or cyberknife treatment. It can kill the bone mets and they can do it in a very few sessions 1 or maximum 5. Pain should be indication for such a treatment.
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Maaaki...I don't have only 3 mets..I have MetS in those areas....
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Nicole - When my back pain began, it simply felt like I had pulled some muscles or slept on a bad mattress but it kept progressively getting worse. I found the breast lump about the same time I realized I needed to see my doctor about my back. The tingling/numbness in my fingers started about 3 weeks before I saw my doctor (phone appt). The finger mobility issues started that weekend so I was able to update her at my in-person appt on the Monday. Unfortunately it took another 5 weeks for us to get the CT results (3 weeks for CT then 2 weeks for results due to screw up at hospital) and during that time my symptoms went from bad to kill-me-now.
It sounds to me like you have caught your symptoms early so I’ll be surprised if you have the bad luck to follow in my footsteps. My biggest piece of advice for anyone is to take any continual tingling or numbness seriously and see someone as soon as you are able.
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Hi ilowen, just waving to a fellow British Columbian!
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Hi Moth! Big wave on back
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NicoleRod, my first diagnosis for bone mets in March 2013 was the pain in my upper back along with tingling and numbness in my arm. Upper body MRI revealed C7 mets. I had cyberknife treatments to that area and so far that seems to be the only area that is not painful anymore! Cyberknife really helped me. The neurosurgeon and RO had both recommended Cyberknife over regular radiation due to the location of the tumor.
Hope you can get some pain relief soon. I have extensive bone mets all along my spine and can understand how disabling and painful it can be.
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S3K5.... did you get that side effect (after having the SBRT) that effects your esophagus or throat where it burns for like months??? If you don't mind me asking are you very thin, or tiny? I ask this bc this was an Issue with my Y90 that I was so thin with minimal body fat that when the radiation beads leaked through the liver wall , instead of being absorbed or caught in the fat layer between the liver and colon wall...I didn't have any body mass there and they went staight into the colon wall....
BTW...my MO called me today she is trying to schedule an MRI in the hosptial bc I will need to be sedated or pain meds bc of the pain in my liver when I say on my back.
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Polemonium - Can they do a PET/CT? I only ask because the CT and the PET work on very different principles. The images can be overlapped to see if the areas correlate with both signal difference in the CT and the active uptake in a PET. I had a bone scan done several months ago and it showed a large focal area in my left shin that was suspicious for a met progression. Turns out after looking at it on X-rays it was a non-malignant cyst that we are just watching. Sometimes having imaging done in multiple modalities can help a radiologist define one thing from another in a suspicious area.
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Nicole after Cyberknife sessions, I had increased pain in the upper back which was due to temporary inflammation. I was given steroids and pain medications which helped. I had no other issues with throat or oesophagus burning.
I am considered ‘skinny’ and have minimal fat in my body! I am not tiny (5’ 4”) but just thin. Lost a lot of weight since early 2020. If I push for y-90, I am wondering if I’ll have similar experience as you did.
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Thank you all for your advice. I had a PET scan today and received the report already. It pretty much agreed with the Bone scan (but not the CT scan)- eighth rib, manubrium, plus a few other potential areas (described as unclear) for me to stress about, described as small FDG avid and osteoblastic lesions. At least, I think osteoblastic is preferable (???). The pain has subsided mostly and the radiologist thinks it might be better to wait for radiation until another scan shows progression, or I am in a lot of pain. Does this make sense? Waiting until it gets worse seems to be our perverse reality.
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S3K5 ...I am actually relieved to hear you didn't have that burning throat thing. do you mind me asking what state you are in? Also did a RO do the cyberknife or an IR?
Ref: the Y90.... I am not gonna tell you it cant happen (what happened to me) but remember my tumors where they were located in the liver literally butted right up against the colon wall...if your's aren't then you probably wont have any of this. I still have pain in my liver..but its like 3 or 4 now.
If you have any questions please ask
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Hi lovely ladies and gents!! Have not posted in a while as my mets were pretty quiet up till last year. Question about radiating new sites. I had 3 great years on ibrance/faslodex then last year had 2 spots of progression in the hips. We radiated the spots and they continue to get smaller. Just had a second PET confirming a small (SVU 7) new spot on my iliac crest. My primary Onc suggests to radiate it...second opinion says she would let it go as the cancer seems to be moving slowly and she wants to save the bone marrow for potential chemo treatments down the road. She also said with my history, people can live a long time and wants to be able to treat me for another 5-7 years....was that a estimate on how long these treatments will likely work for me? Feeling very confused and a bit anxious with the life expectancy prediction. Thanks for any thoughts on whether I should radiate now as it is "small" or wait and let it grow and start planning my next cocktail of treatment? 😶
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Perky2020- was the second opinion from a RO or another MO
I would probably want the RO opinion in the mix, too
I have not been where you are yet (I am at just one rad treatment to bone so far) my instinctual desire is to stay on the same systemic treatment as long as possible and do a local treatment as long as it's one small area of progression.
In other words, I think I agree with your primary MO, not that I am a doctor of course but just based on my gut feelings in my own case.
As far as the number of years they mentioned, off the top of my head, I have seen estimates of roughly ten years for someone who stays bone only and is stable on treatment....that doesn't mean it's written in stone for any of us. Not a promise either way, I would think the doctor was just mapping out a scenario in her head
PS I have no idea why she refers to bone marrow, the effects of radiation on bone marrow is not something I am well versed on. I would ask the RO or your primary mo about that too0 -
NicoleRod, I had Cyberknife treatment at Carol G. Simon cancer center in NJ. This was done by a brain neurosurgeon and RO working together, due to the location of the tumor (C7). They were excellent and very experienced. Both of them retired recently.
Since Jan2019, I go for my treatments to Memorial Sloan Kettering Cancer Center (NY and NJ). The IR is in NY city but the consults are usually done by video chat. I will find out a little more about the location of my liver mets at my next appointment with the IR and yes, I'll be asking a lot of questions about the complications of Y-90 procedure due to the location of the mets. Thanks for posting your experience.
Hope you have found relief for your abdomen pain post Y-90 procedure. Are you taking any medications for this? Where are you getting your treatments? I hope your upper back pain is resolved soon.
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S3K5 Im sorry I think you already did tell me it was NJ..I forgot lol. I am taking Nothing for pain...sometimes I take motrin but right now the Verzenio is really messing up my stomach and I am already on Protonix 40mg 2 times a day (thats a PPI like nextium etc)... and I take Pepcid AC in between... I don't know what else to try....So the motrin I am scared to take bc of my stomach
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thank you Olma61! Good suggestion to get advice from a RO!
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Hello, bone metsters!
I have a question for all of you. I am still having issues with my back, although not quite as severe (but it's a slow process). My primary care physician suggested that I start going for regular massages. I have not yet checked this out with my MO.
I am wondering if any of you were told by you MOs that you should not have massages with bone mets, or if you were given any parameters about getting massages.
Thanks for any info, folks.
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Hi BevJen,
I've never specifically asked my MO about massage but I think it is commonly used as a way to deal with some of our aches and pains. I've had several massages since being diagnosed - I already had a massage therapist who is fully aware of my diagnosis and knows not to be too aggressive in areas that might be vulnerable. For the most part it's pretty safe and can go a long way towards relieving some of the referred pain. Our bodies are amazing things... when we are stressed or there is some pain the muscles respond, often in ways that aren't all that helpful! A good, deep massage is a wonderful thing!
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In the US there is an organization for massage therapists who are specially trained in oncology massage. You can find a listing of cancer treatment centers that use oncology massage as well as search for private therapists in your are who have taken the additional training. I think generally speaking, so long as there isn't deep or forceful manipulation in areas where mets are confirmed, it appears very safe. I was getting massages in the fall but stopped with the uptick of covid cases. I think I'm going to wait now until I'm vaccinated with at least 1 dose (our 2nd dose isn't going to be till 120 days later! eeeks)
https://s4om.org/health-care-professionals/hospita...
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My MO suggested massage to me (I have extensive bone mets) recently but she and I both agree that we don't want to hang out in a tiny room for an hour with the massage therapist, because of COVID. I try to get my husband to massage my tight spots but after like 2 minutes, he's like "My hands are tired."
So, mostly, I use this back massage stick which helps massage your own back. I have used it for a couple of years. https://www.amazon.com/dp/B0006VJ6TO - Back Buddy
Also, try a tennis ball in a sock/old nylons to massage your own back - see this video: https://youtu.be/HzVO9DU-bog
Bob and Brad have helpful hints for home PT exercises. Bob and Brad Physical Therapy You Tube Channel
Heating pads also feel awesome on my sore/tight back muscles. I have definitely had pinched spinal nerves before with bad muscles spasms, and I know it is awful.
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Thank you, Moth and kkcita. I appreciate the suggestions.
I am in physical therapy right now for my back -- just got back from a session. This particular PT uses acupressure to force the muscles to fire and then the tension is gone. Oh, wow, that was great.
But I would like to do massage, and I am fully vaccinated and beyond the wait time, so when my PT ends, I think I will look into massage. A personal indulgence, yes, but well worth the $$ if it helps my back.
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has anyone taken Ibrance and Letrozole while in menopause but not yet post-menopause? Dr is prescribing these, but I don’t think I’ve had blood work to confirm menopause status.
It’s been a busy couple weeks of scans and dr visits. Pet scan showed Mets to sacrum, iliac bones, and one on spine Plus a few lymph nodes near lungs. Radiation starting today.
Supposed to start ibrance tomorrow but I have a call in to the dr to ask about menopause vs post menopause.
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Hi! New here!
As you can see from my sig, I am part of the 1% of breast cancer cases where the breast cancer never went to the breasts, but straight to the bones.
Anyone else out there like this?
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Heidigwotr, I have occult de novo breast cancer as well that was a missed diagnosis in my bones for six years before it spread to my stomach. They never found anything in my breasts. If they had caught it when they should have, it may still be in my bones instead of in my stomach as well. I'm sorry you're dealing with it. It's odd when you ell people you have breast cancer but they don't find it in your breast. They give you funny looks.
I also started a de novo thread, so you may want to look there as well.https://community.breastcancer.org/forum/8/topics/876918?page=23#idx_679
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I'm curious to find others like myself. I've lost 5" (12.7 cm) in my spine and pelvis. Needless to say, my muscles and bone structure were not meant for this.
I'm sorry if there is a way to search within a thread, I haven't been able to figure it out.
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I just posted on the Ibrance thread that I had my Bone and CT scans. Basically stable with no significant progression. I'll take it!
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Congrats sunshine.
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Sunshine- I posted on the Ibrance Thread, but another WOOHOO is quite ok.
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Thanks, Candy! I'll take it!
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excellent news Sunshine! here's to stability!
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