Bone Mets Thread
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@fighter00 Oh, that sounds awful. I hope they can give you some relief. I’m really sorry you’re in such agony. 💕
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yes @kbl a lot of pain meds
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@fighter00 Thats good. I hope you can get your insides flowing again. I can’t even imagine.
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@fighter00, in your pocket with support and hoping that things begin to work really quickly for you.
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fighter00,
Before your recent spinal cord compression fracture, were you on a bone strengthening bisphosphonate like Fosamax (IV) or Xgeva (injection)?
Have your doctors talked with you about the need for surgery to stabilize the spinal fracture?
Because I have spinal mets, one of my doctors has mentioned the risk for Cauda Equina Syndrome. This is when a disc in the lumbar region collapses and this can affect the ability to walk and loss of bowel/bladder control. My understanding is timely surgery is needed for best outcome. 🙏
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fighter00,
This sounds hopeful. I'll keep you in my prayers for speedy recovery from surgery, good pain control w/o too many side effects, and return of walking and bowel/bladder control. It's a lot of healing, but when surgery is done quickly this increases a good outcome. Stay hopeful. 🙏
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Just catching up on this thread and my heart goes out to you, fighter00. I hope you are on the mend soon and back on your feet for this fight.
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@fighter00 I wish you a speedy recovery <3
I want to ask if anyone stopped (gradually or not) X-geva at some point when the bones looked good on the scans? I read about the negative impact of stopping this treatment, but at the same time, the longer you take it the higher the risk of side effects. I took 6 doses so far.
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Radiation-cinderella
I stopped it. I had a bunch of jaw pain. I needed root canals. Now I have arthritis in the jaw. MO wants me back on it to help prevent mets in bones.
I too saw that stopping could lead to fractures. I was nervous the first year. But no problems here.
Good luck
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I went from a monthly dose to a dose every three months. I had the dose reduction afyer 2 years of it. As it can give severe SE if you do it too frequently for too long.
And my recent MO say I should of have the dose reduction even before...
I didn't feel any SE anyways in this two years...
My bones get more dense where I had metastasis during this time, and the MO say it is good.
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Oh no @fighter00 ! I hope you are doing better since your last post. It sounds like it came on really fast. Sending strength while you recover from your surgery. Let us know how you are doing.
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kbl/ Thank you. Everything stable from pet scan.
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@jen1 It would be abnormal if you did not get depressed under the circumstances. This stage IV mets thing is so tough to live with because there is no end to treatment. We’re in treatment for life and part of the side effects include depression. Hang in there girl.I try to wake up each day thinking what to do that makes me feel good about myself. It works sometimes but other times I have no drive either because of pain and overpowering tiredness or jut wanting nothing more than being by myself and reading. I get annoyed why myself for preferring to isolate but truthfully, I feel like I have a social phobia being around people lately. I’ve gotten self conscious being the identified cancer girl…….”how do you feel”..”are you ok”…. How was treatment…..hoe long will you have to be in treatment…….ughh on & on. You look great for having cancer……………………😒🙄I’ll be in your pocket Monday for your PET scan.. Prayers it goes well🩵
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thank you so much @amel_83 & @gailmary ❤️ I will discuss this with my doctor early July.
Good luck @shanagirl with your PET scan, I have mine next week…and a mammogram for both breasts. Not looking forward to my needles going into the (almost) two useable veins 😔 I spent yesterday reading about scanxiety because as soon as I booked them I started feeling horrible.
Sending much love to everyone - @jen1@fighter00
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Awww, holding you in our thoughts while you manage your scanxiety for the upcoming imaging next week, @radiation_cinderella. ❤️
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Fighter I hope recovery is going well.
Great news on your pet, Jen
My scans are scheduled for the week after the 4th. I'm doing well, preferring to believe my aches and pains are all age related. Scanxiety kicks in when I drive to hospital for scans then while I wait for results.
Shanagirl, I too have become a homebody. I've had people tell me I must be cured. Most stopped asking . Saw my sister today. She asked how I'm doing and what meds I'm on now. I just said I'd rather not talk about it. She has no empathy and was just asking cause she's feeling old since she turned 65. Health is a common topic with older people and I don't like it. My other sister is no better. It's not an exciting sport to track. But she would take notes on my scan dates and drugs etc. The thought was there I guess, but her tone was way wrong. She thinks she knows all about it cause her m-i-l died 15 yrs ago after 15 yrs of several kinds.
So glad you all understand and indeed sorry why
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@gailmary I used to wonder why all of my older friends talked incessantly about their health. Now I'm there and all we do is talk incessantly about our health. It may happen to the best of us, sigh.
Good luck for all facing scans. My results have come in, and I have to pace myself in looking at them. It takes me three days to look at the first one, then another day to build up the courage for the second, and . . . . well. . .. .the third is still sitting there. So far no bad news, but you never know when the serial killer is going to jump out of the closet.
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ToughOldCrow - The "serial killer" analogy is a really good one. Hadn't heard it before. I have a friend with stage 4 lung cancer and she always says to, "Remember, we're all just one scan away from F_ _ _ _ _ _ _K!"
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hi @kbl @weninwi @gailmary @malleemiss251 @tougholdcrow @radiation_cinderella @dulcea
Thank you so much for your thoughts and prayers. God is always good for me. My bowel/ bladder is under control and start walking by myself without a walker. I have some discomfort on the surgical wound but no pain. They scheduled 3days radiation on my spine T11/T12. I don’t know what to expect like side effects for radiation. If anyone had spine radiation experience please share with your sister or daughter or friend. And then start my 2nd line enhertu for her2 low in July.
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Fighter00-Glad things are improving. I had 5 days of radiation on my thoracic spine. It was quite easy. Just go into the center, the radiation only took about a minute or so each day. I had a strong burning sensation on my skin from the radiation but was able to take ibuprofen to ease the pain. Hope it goes well for you.
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@chicagoan thank you dear friend
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Fighter, it's very good to hear that you are walking and your bladder is under control, that's a great response to the surgery!
I had radiation to my T9 vertebrae, and had no side effects at all. I'm hoping for the same for you.
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@fighter00, I am so glad to hear that you are up and around - I am sorry for the delay in responding - I am transitioning from windows to Apple. As I am a techno-fool it is a very slow process learning new operating system. The machine is wonderful. However when opening the boxes turns into an intelligence test - well - you get the general idea - lol.
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@fighter00 It what wonderful improvement. You sure did scare us and I'm sure yourself, too. I had spinal radiation just recently. Zero problems, not even a burn! Prayers (if you accept them) that all will heal well and quickly.
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@jen1 good news pet scan stable.😊
Been catching up on every here. @threetree , yes we’re all just on scan away fo F—-K!
@tanya_djamila @irishlove @tougholdcrow @gailmary @sf-cakes @fighter00 @malleemiss251 @chicagoan @moderators @radiation_cinderella @weninwi Saying hi to everyone this morning. Without commenting everything I’m reading. Wishing you all a good day today. I’m going to get off my iPad now and have my coffee here all comfy in bed 🩵
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@shanagirl, it is very good to hear from you. There is something so comforting being tucked up in bed with a good book, iPad or laptop and a cup of something nice. In your pocket for any aches and pains.
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My husband went fishing with a buddy this morning, and I relished having a quiet house all to myself for the entire day. Tho I nudge myself to stay somewhat active, I’m more of a homebody now than I’ve ever been. One of my simple pleasures is snuggling up on the sofa and reading, especially if it’s a really good book. I just finished Tom Selleck’s autobiography “You Never Know”. I wasn’t his biggest fan, but I loved his book.
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My husband went fishing with a buddy this morning, and I relished having a quiet house all to myself for the entire day. Tho I nudge myself to stay somewhat active, I’m more of a homebody now than I’ve ever been. One of my simple pleasures is snuggling up on the sofa and reading, especially if it’s a really good book. I just finished Tom Selleck’s autobiography “You Never Know”. I wasn’t his biggest fan, but I loved his book.
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Has anyone had a hematoma in the chest as the result of a met to bone? Im not really sure what Im asking here it was something MO mentioned in passing. My last scans I didnt have any breastbone mets, but had this big lump grow up out of my center chest over three days maybe a week after the scan, with some bruising. Ill find out more tomorrow as I get a new scan, but it waxes and wanes in size and can be uncomfortable.
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