Bone Mets Thread
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Truly sorry for all you are going through but glad you have found this community. Welcome!
I know there are some procedures (surgery or radiation) which can help alleviate pain from bone mets- so if medication is not helping, press your oncologist for referrals or seek out surgeon and RO on your own.
there is a very active Ibrance thread here, I recommend giving that a look, the ladies there also share about what comes next if your current combo is failing. Cant help with that myself since I am on a different regimen, but there are many helpful and knowledgeable people here who I am sure will have some guidance to offer you.Take good care and I am hoping for some relief for you soon.
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I'm so sorry to hear all you are going through MNPamila. There are very knowledgeable people on this forum that may be able to give you some advice. But, if you don't feel confident with anyone on your medical team, get a 2nd opinion. Good luck with everything and you will be in my thoughts and prayers.
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Thank you. I reached out to get an appointment with the Mayo clinic in Rochester. I am not confident with the care I am receiving here. I hope all is going well with you and pray for victory over your cancer as well.
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Thank you! Best wishes to you.
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sounds like the right move, always good to get that second opinion
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MNPamila, hi and welcome to the boards . One thing I've learned is that in the metastatic setting, growth rates change. Metastatic tumors can be very rapid to change and grow. Generally speaking bone mets only and er+ can be favorable and some people manage to control it for quite some time. But it all depends on how each person's tumors respond to treatment.
Your MO should be able to discuss prognosis though reality is many don't want to. Figure 3 on this study gives some idea of longevity based on hormone status and location of mets. It's based on SEER data but doesn't include some of the newer targeted treatments so outcomes now should be a bit better https://bmccancer.biomedcentral.com/articles/10.11...
And again, at the end of the day, the stats give us big picture for a population and you might not be on those graphs at all...
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Thank you. I have read so much. I hadn't seen this study, so it is much more helpful information. God bless!
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Thank you! Wishing you the best!
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Thanks for all of your good ideas about my back situation, folks. I'm about two weeks out from the worst of it, and today I had an appointment with my primary care doc. She felt around on my back, and said that my lower back muscles were very tight. She also prescribed a muscle relaxant and a prescription NSAID for now, and said that she thought PT would help tremendously. I'm heading there this afternoon for my PT eval.
I had had a previously scheduled appointment with her, but was happy that she could address this too.
Teresa, the lumbar cushion you recommended has just arrived, and it's wonderful!
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BevJen - I'm very happy that the lumbar support is helpful. I think that a muscle relaxant should also really help with the back spasms. And PT will most definitely help! Great job in lining everything up! I hope that your back pain resolves soon... it's amazing how painful back spasms can be!
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Hello, just wanted to share this new research about isometric back strengthening exercise for people with spinal mets/high risk of fracture.
It would be something to take to your MO and refer to a PT to start as modifications may be required at the beginning but this study indicates it was well tolerated intervention, nobody was injured, and pts gained confidence and strength.
There has been little research done to date on this so we don't know how it affects actual outcomes such as bone density, frequency of falls, pain etc but this is a good start to the research beginning to gather such data.
"Spinal Stabilization Exercises for Cancer Patients with Spinal Metastases of High Fracture Risk: Feasibility of the DISPO-II Training Program"
https://www.mdpi.com/2072-6694/13/2/201/htm
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Thanks Moth. I used to use PT for my chronic back issues. But, since Covid I have not been to therapy. And I wondered about what the therapist would be comfortable doing with me with the spinal mets. I now have this to show the therapist. Maybe with the vaccine I will feel comfortable going back to the therapy setting at some point.
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It is great to see some specialists work on this field, ie spine bone mets recovery. Thanks Moth for sharing it.
Candy, the pt clinic I used to go, since pandemic offers online sessions with therapist via zoom or without therapist by giving an access code to portal, which you will have access to many useful exercises based on levels and conditions. You may consider this option if you are not comfortable to go there.
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Snow-drop--- Hum. Last time I went to PT was in early 2017, but I have went on and off for years. Chronic low back issues. They usually do hands on stretching, back traction, TENS, heat, etc. How could they do those things virtually. I do not have all that equipment in my home and I would need someone to do it on me, not do it to myself. I could see doing Zoom to train on home exercises, but not the hands on stuff. I don't even know if TENS or traction would be recommended for the bone mets. Maybe just exercises for me now.
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Good Morning, I received the results of the pet scan last week- bone Mets to iliac on both sides, sacrum, spine AND a few lymph nodes near lungs.
I am waiting to be scheduled for a biopsy of the lymph nodes to determine hormone receptors or another type of cancer. Then they will able to decide which chemo.
I am scheduled to meet with a holistic doctor tomorrow to hopefully figure out where I am deficient in vitamins and figure out a way to handle chemo and minimize side effects. Discuss nutrition. Plus mind and spirit methods. I ate well before (not perfect) so I think stress and obsessive thinking has played a role.
I have read a lot from the Life Over Cancer book by Dr Keith Block.
I have looked at the Gerson Therapy and several other books about natural healing. Has anyone juiced carrots?
I just can’t figure out if this natural therapy is for stage 4 or only for early stage. But with node involvement, I am going to do both conventional medicine and mind spirit treatment for sure.
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Good Morning, I received the results of the pet scan last week- bone Mets to iliac on both sides, sacrum, spine AND a few lymph nodes near lungs.
I am waiting to be scheduled for a biopsy of the lymph nodes to determine hormone receptors or another type of cancer. Then they will able to decide which chemo.
I am scheduled to meet with a holistic doctor tomorrow to hopefully figure out where I am deficient in vitamins and figure out a way to handle chemo and minimize side effects. Discuss nutrition. Plus mind and spirit methods. I ate well before (not perfect) so I think stress and obsessive thinking has played a role.
I have read a lot from the Life Over Cancer book by Dr Keith Block.
I have looked at the Gerson Therapy and several other books about natural healing. Has anyone juiced carrots?
I just can’t figure out if this natural therapy is for stage 4 or only for early stage. But with node involvement, I am going to do both conventional medicine and mind spirit treatment for sure.
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I could use some advice about scans for bone mets. On Feb. 19 I let my local oncologist know about sore left ribs. A scheduled CT scan took place on Feb. 24. It showed little change from my previous CT scan (great news), but because of my sore and swollen ribs, the doctor ordered a bone scan for March 5. This scan showed "increased focal isotope uptake in the manubrium and and a second focus approximately at the level of the left eighth anterolateral rib". My local oncologist recommended radiation and a change of letrozole/IBrance to Faslodex/IBrance. I had a virtual 2nd opinion with a breast oncologist from Dana Farber (DF) who recommended 1) radiation and no change from letrozole/IBrance, at least for a while, or 2) the protocol my local doctor recommended. The DF oncologist also suggested getting a PET scan for additional information. Fine. So I met with a local radiologist on March 11 who said that after reviewing the scans she is unconvinced that there is cancer on my rib because the CT scan did not show anything. She suggested that the bone scan may reflect a broken rib or some other noncancerous issue, and does not want to radiate this area. She scheduled another CT scan for late May. I have not heard back from my local oncologist. I know I did not fall or break a rib. The rib area is sore, esp. at night. It has been over a month since this problem began. Do I just wait another 2-3 months while the cancer potentially spreads? Would additional scans (MRI or PET) be helpful in determining the actual nature of the rib pain and swelling?
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Hi to All the familiar people. Since I now have mets in my bones, thought as best join this thread. Some of you have heard my moans elsewhere about side effects of Xeloda (only on cycle 2) which have been pretty bad but I’m hoping some adjustments can help with that soon. Just found out today, because I read the form for my dentist to sign, that I’ve to start Zometa. My MO told me bisphosphonates would be needed to strengthen my bones, but didn’t explain further and I stupidly assumed that would be in tablet form, not IV which was never mentioned. Had a good cry 😢 as I’ve managed to avoid anything IV for MBC up until now (rubbish veins) and this just feels like yet another step in the wrong direction. I’ve looked at the Zometa thread for SEs and if this body of mine behaves the way it has so far I’m in for a rough ride SE wise. At least it’s only an infusion every 3 months for ‘maintenance’.
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Karenfizedbo, oh that sucks that your MO didn't go over it & explain properly what was involved. I got bumped to denosumab (Xgeva) instead solely because of covid. Our cancer agency was requiring bisphosphonates IV first and if they didn't work, then they'd switch to the more expensive Xgeva. But because of covid they're trying to reduce the length of time we're in clinic so everyone suddenly qualified for Xgeva (which is just a fast injection. Every 4 weeks for me right now). So anyway, there are other options possibly if Zometa sucks too much for you.
Also, were you told to see your dentist before starting? I had a consult with an oncology dentistry specialist before they'd let me start & I have strict instructions on what my regular dentist can & can't do.
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P, yes pet would give you more information. and most MO s would suggest what DF onc already told you, they don’t change I/L with a bone progression while you already have bone Mets.
Karen, please make sure you take daily calcium and vitamin D once you start zometa, clinics usually administer it in 15 minutes, the minimum duration!, but you get less se in 30 minutes, ginger tea helps reduce some se. good luck.
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Polemonium, I agree that a PET is probably a good idea before radiating anything or doing a treatment change. I once cracked two ribs in three places and those showed up as fractures on the PET rather than mets. When I did develop mets to a different area, the PET detected them first, the CT did not detect them, and the MRI did detect them. A PET scan is a good tool. I agree that getting more specific answers would be helpful at this point.
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Karen, I'm sorry to hear about your bone mets. Two thoughts for you:
Do check with your MO about the calcium. I am NOT taking calcium nor am I taking a multi-vitamin. My calcium levels were elevated, so my MO said NOT to take calcium supplements.
Re: the Zometa. I am getting it monthly. The SEs after the first infusion were the toughest. I had pretty bad nausea about 4:00 AM the night after the infusion. My MO had given me a prescription for Compazine. I took one and it helped a little. I felt flu-like the next day, but it wasn't horrible. The next infusion was easier, and since then I've had no real SEs from it.
I gave my dentist (periodontist) a print out of the drug facts, which she appreciated. I've heard that taking a Claritin the day before, of and after your infusion of Zometa should help with your SEs.
Do ask your MO about the Compazine and check with her re the Claritin.
Again, I'm so sorry about your mets, but I'm glad you're here for support.
Carol
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Hi Karen, I know it’s probably cold comfort but the oral bone strengthener is a royal pain in the butt! I started on Clodronate and found it almost impossible to manage. The issue was timing as you need to take it an hour before a meal or two hours after a meal. There are some additional parameters related to drug interactions which, with my schedule, meant that I had to set my alarm to get up, take the damn pill, and then go back to bed. It was ridiculous. It didn’t take long before I said, this is stupid, I want something else.
Polemonium, you have received good advice. I would just add that there is likely not a lot of risk associated with waiting to see the next scans given that everything else seems under control. That would be my choice as burning through treatments has its own risks.
Kale, I’m sorry I can’t provide any advice on naturopathic approaches. My one and only outreach to a naturopath didn’t go well. While appearing to be pretty legit he had some inappropriate suggestions and was, quite frankly, a bit creepy. (I realized after the appointment that he had a chaperone in the room. Couldn’t quite understand what “his associate” who never said a word, was there for. Okay, bit naive of me...) I did try to layer in some additional herbal treatments to support red blood cells etc. but then was advised by the pharmacy to stop due to drug interactions. Hopefully someone else more knowledgeable can chime in.
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Karen - I hear you about the IV avoidance... like that is crossing the threshold in some way. I do wonder how they make the call about who gets Xgeva and who gets Zometa as last August I popped in to the chemo ward to get my Xgeva injection and was in the same room as a gentleman awaiting a Zometa infusion. I wondered what he thought that I was in and out (relatively) quickly for what is essentially the same thing. Im sure there is a NICE protocol somewhere on this. I was started on Xgeva while still in hospital, though, because my sacrum was so bad - maybe that is why.
I hope you feel better soon though, and get those SEs under control
Oh - make sure you get the box of Ad Cal chewable tabs from the nurses for your D3. Standard bone met party favor!
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Thanks All for the advice. Got a list of queries now for my MO. What a difference it makes having you all here and know I’m not on my own with this!
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I know this thread moves quickly like the liver mets so I hope some will see this and comment.
I have been off all meds since Dec. almost 3 months now. Last scan in Dec showed I still had mets at C7, Sacrum and new mets at T3. I have always (except when Halaven was working) had pain in my sacrum but never anywhere else (with relation to bones/spine) .... the last 2 days I feel like my spine is hurting??? I feel uncomfortable all the time and I know my cancer is growing bc now when I tilt my head/neck back (looking up to ceiling) it hurts in the bone - specifically where the C7 would be, ya know at the base of the neck.... but I also have pain in the spine and back in the upper back I guess that is where the T3 is.
I would like to know who do I see about radiation there is it a regular Radiation Oncologist RO or IR or some kind of spine specialist??? Then there is also Interventional Neuroradiologist and Neurosergon?? I did have a consult when first diagnosed with the C7 it was with a RO that specializes in head and neck but he said we shouldn't touch anything if I do not have pain. .... but now I am having some pain there and elsewhere in the spine...since he is "head and neck"....is there a "spine" doctor- RO , IR something???
Also last night sleeping I was SOOOOOO uncomfortable and right now bc of my liver pain I HAVE to sleep on my left side (pain from the Y90 in liver back from Dec) well last night I had like tingling and a little numbness in my arms... I woke up VERY scared and upset like am I being paralyzed???? I don't want to sound dramatic here but I am not experienced with bone mets...liver I know a lot about but not bone so please try to be understanding. I was/am very scared.
Thank you for any and all info,
Nicole
OH PS: I did message my MO yesterday (before what happened last night) and told her my whole spine felt like it was hurting...
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Nicole, I just finished rads to my T11 a week ago. I saw an RO for this. I had 5 fractions, 20 greys.
fwiw, I had zero pain. This was an asymptomatic met found on a scan. His intent was to kill an oligoprogression. In some places they can also do SABR/SBRT for bone mets instead of regular rads. Definitely look into it if you have pain but rads are also an option when there is no pain, to reduce tumor burden and try to improve OS.....but the data on this whackamole approach to mets is still very immature.
But a RO is your person for this. Good luck, I hope you're feeling better today. I worry about you being in so much pain for so long! ((hugs))
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Thanks Moth....
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Nicole - I had an extensive met to my C7 when I was diagnosed de novo. The bone was basically disintegrating, collapsing and putting pressure on the nerves that travelled to my arm. The nerve pressure caused tingling/numbness in my baby/ring fingers and mobility issues with my thumb/index finger. The doctor explained that tingling/numbness is caused when the outer sheaf of the nerve is impacted and mobility issues are caused when the deeper area of the nerve is impacted. I had extreme pain in my upper back, neck and shoulder which was worse when I was lying in bed (ie sleeping) and it was very difficult to find a position that allowed me to sleep. Also, I wasn’t able to stand for more than a couple minutes before the pain got so bad that I had to flee back to the couch where the pain was mostly manageable.
I was sent to an RO for radiation to the C6-T1 but my case was so severe that I first required surgery to stabilize the C7. Since this was found at initial diagnosis, everything was done through my family doctor. If I were experiencing your symptoms right now, I would see my GPO (I live in a rural area so I never see my MO who is in a larger centre, the GPO interfaces with the MO).
If you’re experiencing numbness/tingling in your arm, I expect that they will need to do a scan to determine if there is any impingement of the nerve. For me, it was clear on the CT and follow-up MRI what was causing my issues.
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Wow thank you Ilowen you went through some scary stuff....and unfortuately I may be heading in that direction...i feel a dull burning like pain all in my upper back and lower neck and shoulders...I havent had the numbness and tingling while on the couch today or while standing...but I am dreading going to bed tonight...I have a message in to my MO I don't really see a General Practioner....
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