Bone Mets Thread
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Hi all! It's been awhile. I will be ten years into this in a month.
I have been living my life, camping and horseback riding for 2 years now! I will admit this past year has been difficult. Too long to go into.
I have a question. Has anyone had any luck with steroids clearing up their pleural effusion so they can breathe easier? I've been fighting the flu, pneumonia and pleural effusion for a month now. The flu and pneumonia are resolved, but the pleural effusion is worse and the coughing and shortness of breath are terrible! The doctor said if the steroids don't help, I am looking at thorosentisis(sp).
I read gokale has gone through this and I wondered who else.
Oh, I almost forgot, we are moving to Arizona! Yay! No more hurricanes!
Claudia
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Bigbhome - so glad to hear that you have been enjoying life and for so many years.
I hope the steroids clear up your effusion; I had not heard about that as an option. I did the thorencentesis twice. It wasn’t easy but I am sure it’s easier than other treatments. I then had a pleurex catheter installed and I drain it myself every day. It’s cumbersome but doable and I get some relief.
Congratulations on your move to AZ.
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Hello there! I was diagnosed in 2017 with mets to liver and lymph nodes. In November 2021, the cancer progressed to my bones, specifically spine, hips, and skull. I had palliative radiation to my cervical spine about a week and a half ago. I’ve now developed issues with swallowing anything. The pain in my esophagus is towards the lower part of my neck so unless I can drink it, mouthwashes have not helped. I’ve tried liquid Norco for the pain, but that hasn’t helped either. I’m currently working with Palliative care to try to resolve the issue but I was hoping someone on this site might have some advice. I can barely take a few sips of water at a time before the pain gets too bad or I start gagging.
Thanks for listening.
~Kc
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KC - My RO had Walgreens make up a bottle of a special mix to help with swallowing. I think it contained maalox and lidocaine and something else. It wasn’t a mouthwash, it was swallowed.
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rk2020- thank you so much for responding. I thought something with lidocaine in it might help. I’ll definitely bring this up with Doctors.
Thanks again! Have a wonderful weekend!
-K
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rk, you're a gem. kc, I hope you start to feel better and will be able to swallow.
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Bigbhome - congrats on your move. I grew up in Arizona, in the Prescott area, which is wonderful. Lots of horse people there. I hope your move goes well. I miss it and have not ruled out going back at some point.
Pearl-girl - I have never taken the Fentanyl patches myself but I do have an aunt who uses them for severe back pain. She has leukemia but not bone mets, just a really severe degenerative back with disk and nerve involvement. The Fentanyl patches allow her to remain functional where she would otherwise barely be able to walk or move. I'm a nurse and have had patients swear by them for various chronic pain issues. If and when my pain gets to that point I definitely have it on my list of things to try to maintain my pain control.
I wish I had more to offer in terms of pain control. I have mets to the spine, pelvis and right hip. My doctor does not consider me NED but at the same time my mets are stable and not progressing right now so I am able to treat my pain reasonably well with Norco 5/325 and OTC Tylenol and ibuprofen. I'm in Oregon and so the THC/CBD thing here is legal. Several of the people in my cancer clinic use various edibles and topicals. My PCP has even recommended it for me but she did say that the research is limited on CBD alone. For pain specifically CBD topicals are usually most effective with a THC component. I tried a topical CBD/THC cream that I did not find effective at all. The combo might work better in edibles, I haven't tried that.
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KC - I hope you've gotten some relief by now. I had a similar experience over the summer last year after radiation and none of the radiologist-recommended strategies (mouthwashes, lidocaine, etc.) helped. I went on an all-liquid diet for 2 weeks, but since even water was too acidic for my burned esophagus, I lived on slippery elm tea. It allowed me to stay hydrated, take meds (diclofenac is a high-powered anti-inflammatory that helped a bit.) You can by it in capsule form or powder. I steeped the powder form in water, let it cool and kept it near me at all times. Truly a life-saver.
Again, I truly hope you're getting some relief.
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Thank you for all the advice! Unfortunately, the swelling in my esophagus was so bad that I couldn’t swallow anything, not even my own saliva. I ended up in the ER and spent Easter Sunday in the hospital. After lots of IV hydration and steroids for the inflammation, I’m feeling much better. Im home and I’m able to drink liquids/eat soft foods like jello and eggs. Slowly building my strength back up after not eating or drinking much for a week. I hope you all had a better weekend than I did. :
Take care of yourselves! -KC
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KC - wow, so glad you're back home. I had a similar experience involving my poor swollen esophagus and a pill I was attempting to swallow. In all, I felt inadequately prepared for how hard radiation would be in that area. In the end I would have been well served by going to the hospital for IV hydration. I hope the rest of your healing is less of an adventure!
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Oh, KC, I'm so sorry! I hope you continue to heal and are able to swallow a bit of food.
(((hugs)))
Carol
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kc54321,
I'm sorry you had to go to the hospital but glad you are home and feeling better!
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gailmary - interesting point re: mets and arthritis. it inspired me to check out the association between L1 and hips (have a small lesion on the L1 and hellish arthritis in both hips). thank you for that. as the spot is small, my mo is suggesting targeted radiation to possibly eradicate it. if i decide to proceed with that, would i be foolish to wait until it gives me significant pain to do so? this seems like a super obvious or stupid question but, i have to say, i'm still being surprised by the things i'm learning re: bone mets. any opinions on the matter are welcomed.
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hey everyone. I’m looking for some guidance. I’ve always been liver involved and now I may have bone spread by the aren’t sure since my GP told me my result and my MO is away.
My scan showed
"Along the superior endplate of L1, there is slightly increased focal low-grade
FDG uptake/SUV max 4.8 along the superior endplate, which is new in comparison
to the previous PET study. There is suggestion for very mild endplate depression
at this level (series 611 b, image 63). No definite underlying osseous lesion is noted” Is what it says
Then at T6 it says : Within the thorax, there is a focus of low-grade FDG uptake/SUV max 3.8 by the
left transverse process of T6. There is slight loss of the cortical lining
anteriorly (series 4, image 97), which is more conspicuous today in comparison
to the previous study.
My GP says it’s great there’s no obvious lesion but it up took the dye. And I know I’m osteopenic bc of the early menopause.
Has anyones scans looked like this ? mom thinking it’s likely an early catch
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Edge-of-no-return - I think this continues to be a learning curve. I'm 3 years in and still feel like I'm learning new things. I don't really know how to advise you. In my case, I wish I had caught my bone mets early and zapped them. I spent 3 months thinking I had a strained or torn groin muscle. When we did discover the met we were hoping it would be just singular and could be eradiated through surgery and radiation but I also had mets to the spine and pelvis. My personal opinion is not to wait on anything that is for sure cancer. You have to do what you feel comfortable with though.
b-a-p - I will be curious to see what your MO thinks. Typically with FDG if the uptake is low it may mean your tumor isn't very active so it didn't take up a lot of the radioactive glucose. It can also mean that the tumor may just be small. In my case I had low-grade uptake compared with previous because I have had radiation to my mets and they are not as active as they have been previously and they have also shrunk in size so the uptake was low-grade where previously they were super bright on the scan. I wonder if your MO will order another type of scan to correlate with the PET if they are unsure?
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Edge, wouldn't it be grand if the decisions were easy to make. I think there's a few ways to look at this. Your radiation oncologist might have different ideas then the medical oncologist. . I think I'd be tempted to treat now with the hopes of eradicating a new smaller tumor if the radiation field were not near viral organs.
In other words, I might not zap the spine if it were close to liver . And then get Mets to liver and too much radiation to area. Probably just me, but I lost a friend with much radiation to liver.
From what I hear, not all bone Mets are painful. Would it be necessary then. What are the chances that zapping it would eliminate it? I have no clue.
I'm all for eliminating pain. Not looking forward to more. Meanwhile I try to get outside much and quilt when I am not outside.
Let us know what you decide
Gailmary
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Edge, to continue:
I would think the smaller the cancer the better the chance of wiping out that tumor with rads. Why wait for it to get bigger and why let it hurt you at all? I'm also curious how it might affect your arthritis. A year ago I saw online that in Europe some patient's osteoarthritis of knee is being treated with rads! Yes, I read Dr. Google took much.
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fwiw, I had my T11 small met radiated aggressively with the intent to kill it. I was totally asymptomatic - no pain at all. The intent was to kill it & reduce my tumor burden & allow me to stay on the same systemic treatment. It's been inactive ever since (14 months now). I'd do it again if I got another bone met & the RO would agree to do it. In fact I try to talk them into radiating anything and everything but my cancer agency has strict protocols... tho they did radiate one lung met for me too...
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emac thanks for your reply. The radiologist has suggested an mri if treatment management would be dependent so I imagine that’s what we will do. I see my MO on the 27th so I suppose we will decide then. Ibrance has been working for my liver but apparently it’s let some bone stuff begin. I think if they are Mets that it’s an early catch
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Has anyone had to have rods, nuts and bolts so to speak with extensive bone Mets? I am meeting with my radiologist this week. He hasn’t said anything about this but it is a concern of mine bc the Mets are so extensive. And then do the rods, nuts and bolts cause pain bc they are foreign to the body?
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Hi Anne,
I can’t answer your question about the hardware but can say that I have extensive bone Mets and have never had a fracture. There are a few on this forum who have had to have femurs braced with rods etc. but that doesn’t seem to be the norm. My Mets have caused some occasional issues but radiation took care of the pain. Sorry if this doesn’t fit your situation but I wasn’t sure if you had potential breaks
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Anne,
I had to have my R hip replaced and a pin put in my L hip as a result of extensive bone mets. The Onco orthopedist said that this was the result of extensive bone mets coupled with arthritis. (Originally they thought I had arthritis in both femurs.).
After the hardware was installed during two surgeries, I had radiation to both sides.
I did not have pain from the hardware at all once the radiation was over. I did have some pain during the radiation, but it wasn't terrible. The only pain I had was on the rod/pin side -- the Onco ortho said that was a result of scarring, and that I should massage it periodically and it would help -- and it did.
It's been a year almost exactly, and no pain.
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Anne, I had one large lesion invading my L1 that was compressing my spine. It was excised as much as possible, then stabilizing rods and pins were placed a couple levels above and below L1. The hardware hasn’t caused pain, but I’ve had some weird sensations of something in my back which isn’t really there. When I move my hand over the area the sensation disappears. I’ve tried massaging the area too, as BevJen did, and that helped also. But no pain
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Yes Anne, I have all of that hardware in my lower back. My L1 was destroyed by tumor so there is a metal cage there now. The surgery protocol is to anchor it to two vertebrae above and two below, creating a five level fusion.
The rods and bolts do not bother me however I'm not real flexible anymore. I can bend and stretch enough to garden, clean house, etc. I do a water exercise class but can't reach behind me to touch the opposite foot like I could previously.
My mets were mostly in the spine. I also had a set of interventional radiology procedures to address spots that needed ablation and cement to stabilize them.
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B-a-p, neither x-ray nor CT caught my smaller Mets, but the MRI confirmed then, with low numbers like yours. I've had all mine radiated as a result. A fracture can also cause low level uptake like that. Wishing you all the best.
Edge, I've had all my spots of bone Mets radiated in the past year. So far so good. Hoping it keeps things at bay. Wishing the best for you, whatever you decide.
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I did go on my trip, and while it was difficult, I managed. However, over last weekend, my vision in my right eye started to go funky. First I felt dizzy, but then I just had to close that eye so I could see. Lots of drama traveling back towards home, but I had an appointment at a specialist clinic that I could not miss. Brain mri was done there that night and it shows brain Mets in 3 places. Scheduled for radiation to brain next Thursday, Friday, Monday,Tuesday, Wednesday. Praying this will wipe out brain Mets and fix my eye.
Sadieservant- I’m so glad you mentioned steroids for your face and head, the specialist suggested it right away (my local MO never did even after me talking about the problem for months).
So the plan after rads is to get a port placed, start Doxil on 5/16 ( the day after we return from daughter’s college graduation), and Doxil most likely will be once a month.
Hoping for the best for everyone!
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Gokale, so sorry to hear about new Mets but glad to hear there's a plan. Sending healing vibes.
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GoKale - First off…hugs because I think you deserve the comfort that can only come from an MBC sister. 2022 has been difficult for you but let’s continue to hope that Doxil kicks butt. Getting confirmation of brain mets on top of your earlier progression had to be a blow but that doesn’t mean that Doxil can’t work for you. You are in my thoughts and I’ll be praying for the best possible outcome.
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GoKale, The eye trouble must have been very stressful and scary. It’s good you had the brain mri right away and now have a plan to deal with the brain Mets. I’m with you in spirit and sending a hug too.
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GoKale, how disappointing to have further mets. I'm glad, too, that you have a plan and that you'll be able to attend your daughter's college graduation.
Love and hugs to all,
Carol
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