Bone Mets Thread
Comments
-
Hi Lauri…I hate that you’re joining the club, but you are most welcome to lurk or participate! This is a great resource and the folks are wonderful.
Positive- Glad you are feeling better and those numbers seem to be good news! Seeing your son race sounds like good medicine if you are up to it. If not, fresh air, sunshine and a walk are a nice alternative. Hope you can get the pain under control. That will help. I’ve been on 75 mg for a long time and it has worked so far.
Enjoy the champagne! Bubbles are good for us in moderation
0 -
Stacy
I have no idea. I really know so little. I was surprised that MO finally gave me this info. I probably don’t know what to ask either. when I asked how many Mets do I have she just said the report said multiple.
I do have a cd of my scan but I just haven’t looked at it. 2 weeks ago the RO showed me and pointed out the Mets.0 -
The name of the tests are right before the number results . The reason why I asked was so I might be able to shead some light for you and maybe you for me . My oncologist really relies on those numbers for my response to meds . He had explained that with some people , not everyone the test number results can determine progression or clearing . From day one my number always coincided with scan results so he was able to run these cancer antigen blood test in between scans to follow my response often . I was just curious which test they were if they were the cancer Antigen 15-3 or the CEA . Those are the ones I only get and am familiar with those . I was just trying to help. This is all so overwhelming sometimes more so than others. Just now you have another person here that is on your side with you and here to answer any kind of questions or fears you might have that I might have the answer to from experience. No experience I ever wanted, But you were certainly not alone. Good luck and write any time and ask anything even creepy questions I’ll answer. Good luck ❤️❤️🩹🌹
0 -
Stacy,
I will see if I can find out. My MO just told me from my blood test. I have seen any paperwork.
I was clueless to ask her. I really do appreciate all the help and support.
0 -
Iwrite
Thank you for the support. The news that the medicine is working helps a lot in not being so paranoid about any pains.
I just hope I can have a few hours free of thinking what if
0 -
sure I am always here , I am always scared , and I am always functional . It’s horrible to feel alone when there are so many of us in the same scary mindset . Misery loves company is a very true statement 💕❤️🌹❤️🩹
0 -
Positive to Strong - sounds like the meds are working. I was told that the meds do not help with pain so the pain is not necessarily an indication of whether the meds are working - in my opinion. So if you control pain with particular meds, I would keep doing that. Your surgery is still pretty recent so it makes sense you are still feeling it as you recover from that.
Gailmary - I'm hoping you are just feeling arthritis. So crazy to root for arthritis, isn't it? Could you switch up your OTC pain meds and see if that helps? I take Alleve sometimes (though I am taking a break from that because CBD is working for me at the moment).
Lauri - I am sorry to hear your news. You can definitely handle this, though. The meds I am on, after I got used to them, are do-able. It doesn't seem like it right now, but if they caught it early, you should be able to handle the meds and do well for a very long time.
0 -
Hi,
I am a lurker too! I have had bone mets since a long time and liver mets since 2019. I have been on multiple chemo, oral and targeted therapies. They all work for some time and then I have progression. So now my entire spine (C5 to L5, iliac bones and sacrum) have metastatic lesions. I am in constant pain.
Currently I am on Keytruda + Gemzar. Scans done 3 months ago showed all mets were stable.
Tomorrow I'll have a spine MRI to map for radiation to my pelvic bone and L5 area. Has anyone had radiation to Pelvic/hip bone area? Any complications due to this? The RO may consider Cyberknife to the iliac bone, based on the MRI report.
0 -
Hello S3K5 - sounds like you have endured a lot already. I had radiation on my pelvic area but I don't know specifics about where exactly. First, I say it was a tremendous help. I was in terrible pain and could hardly walk. I had 5 days of radiation and the pain slowly improved over the next 9 weeks. I still take some pain medicine daily, but I can also walk a lot more now. As far as side effects from the radiation, I cannot say for sure because I started Ibrance and Letrozole at the same time. I might have had some constipation and nausea from rads, or it could have been from the drugs. Fortunately, the side effects resolved, and I am able to carry on pretty well now. Wishing you the best!
0 -
S3K5 - In September I had 15 sessions for a total of 37.5gy to both sacroiliac joints and my left sacrum. I felt 100% relief during my rads. The only side effect was some occasional diarrhea the last few days of treatment and for about 2 weeks after. I did not have diarrhea every day, it was occasional.
I also had 5 sessions to T11-L1 earlier this year. I was told to possibly expect diarrhea. I did not experience any BUT I did get esophogitis which was very uncomfortable. 🤷I also experienced some intense worsening pain for a couple of days - especially at night but thank God that quickly subsided.
0 -
I had a total of 8 rad sessions. I had them to my spine, and hip/femur. 3 to one area and 5 to the other. I don't remember now which got which. What I DO remember is the pain relief. It was amazing. It kind of freaked me out when the nurse called it "palliative radiation" . I thought that was like hospice, but it only meant that was was going to help with the symptoms.
The pain abatement was amazing and I don't recall having any intestinal side effects. I was given some steroids to take, but I didn't take them the whole time.
I hope radiation brings you some relief from your pain.
Carol
0 -
positive2strong, I'd suggest you find out how to set up access to your patient portal. Your cancer clinic should have a system where you login & you will have access to all your test results online. I don't recommend looking at the CD of the imaging - it's usually too hard to see things. You want the written report that the radiologist submitted when they looked at the images. That should be in your patient portal.
S3K5, no exp w rads to that area but want to say I'm sorry you're in pain & I hope you get the pain relief from whatever procedure they go with. Pain is so exhausting.
0 -
S3K5 - I had 5 to the right sacrum, the tattoo dot is essentially right down the middle, just above the pubic crest. I don't know if I had a really large mass or what, but it took some time for the pain to abate for me (though I was never on heavy painkillers, just OTC). What DID happen though was how much mobility I improved from session 1 (essentially was wheeled to radiology) and by session 3 I took the bus there by myself (partner helped me home) and session 5 I took the bus there and back on my own. The radiation continues to work after the actual event is over, so over time it got better and better.
Side effects were one or two sessions of D where it felt fairly constant every 15 minutes over an hour and a half to the point where I called it in just to be safe (cancer newbie at the time!) but really some Immodium helped me out and that was that.
0 -
I hope it's okay to pop in with a question.
I'm having new pain on my right side that feels like it could be my rib. It started suddenly 4 days ago. It's an achey/throbbing feeling that hurts much worse if I laugh or move wrong.
Does this ring true to anyone's experience with met pain on their rib?
Thx for your time.
0 -
I have the same thing and my cancer antigen 15-3 went up from a 9 to 13 I’m scared
0 -
TangandChris - yes, feel free to pop in anytime with a question or a comment.
I'm sorry I don't have any advice about rib pain. When do you see your MO or when is your next scan? I will say that I have a slight pain in the middle of my back, and after my last scan my MO said there is "nothing there" and chalked it up to muscle pain or age. So I suggest contacting your doc. If it's bad, they can do radiation on it for relief.
Prayers that it's just a temporary pain for no reason.
0 -
tangandchris, I don't recall seeing you here for a while. It's always good to see familiar names that have been away for a while. Maybe I just missed your other posts.
I had rib pain before my mets diagnosis. I went to my MO, who was new at the time, and told her about the rib pain. Since she didn't know me that well, I also told her that I was not a worrier and that I didn't run to the doctor over every little pain. She listened and ordered a bone scan.
"Something" showed up on that scan and I was supposed to follow up with her in six months. I did not follow up (which is noted in my chart). That was in 2018. My mets was diagnosed in 2020 and showed up in various places, including that rib.
What I try to do now is to make a note about any new pains, symptoms, etc., and track them. If they continue or get worse, I have a record of it. It seems like they always ask, "When did the pain start?" and I have no idea. "I don't know. Maybe a few months, weeks, days ago??"
I hope your rib pain is nothing, but it's probably worth making a note and tracking it
0 -
Thank you!
I see MO next week, but have Faslodex tomorrow. I'm going to mention it tomorrow.
Sunshine- I had a similar experience with something seen in 2017.
I haven't posted much since finding out I'm metastatic now. But I still love this place. It helped me so much during my initial diagnosis.
0 -
Stacy, I'm right there with you. Been worried so much lately. No pain, no.problem. but then pain everywhere and you don't know what to blame and worry about everything possible.
Yes, GoKale weird to root for arthritis. Sometimes a small part of me, a very small part almost wishes it were cancer that could be zapped with radiation and the pain would be gone. So tired of juggling pain meds. First for this, then that and on and on. Long time now I've had to switch them up for best effect. I've had to do that too for major insomnia but finally found relief. Sleeping 7 hours straight now for a few months already!
Hugs to all.
0 -
tangandchris, good luck with your appointment. Does a nurse give you the shot and can you ask her?
gailmary, do tell about the sleeping for 7 hours. What are you using? I've started taking Melatonin. Not sure if it's working yet.
Carol
0 -
it’s just so scary 😟 we are in this together 🌹🙏❤️💕
0 -
Moth,
Yes, I should open up the portal. Usually I am super proactive about researching and reading, but not this time.
I am so glad I have you and the other ladies
0 -
Very belatedly but heartfelt, thanks Divine for the chair suggestions. I've been looking at ebay and may well spring for a Herman Miller Aeron. I think it would make so much difference to have a proper desk chair,
TangandChris.....hope you get good advice on your rib. I had considerable rib pain with my my mets, several of which were in my ribs, so it's worth checking out. In fact, rib pain is how I first knew something was wrong, though it took awhile to get it properly diagnosed. A spine doctor I was seeing for vertebral fractures that had actually been caused by the MBC (though he did not think in that direction....) was sure the rib pain was from bleeding from the fractures. I imagine that that could be another source if you do have fractures in your spine.
S3K5 I hope the radiation went well, I had it to two particularly bad spots in my spine and a tumor in my femur they were worried could cause a fracture. I think it did help, though it took awhile even after the 10 treatments I had were over.
Positive, I'm glad to hear that the treatments seem to be working and hope things get better....
0 -
Sunshine 99 - so glad that you have found relief from radiation treatment! I am going in for radiation treatment hoping I can get some pain relief and be able to walk normally again.
0 -
Prairiesea, I will be scheduled for mapping next week and my radiation may start the week of 29th Nov.
Thanks to everyone who responded about your experience with spine radiation. MRI of spine confirmed that my lesions in lower spine had increased in size, which explains my pain. My MO has changed my chemo treatment.
I am hoping the radiation will help with the pain and I will be able to enjoy some painless days during the holidays.
0 -
Prariesea, glad you found the chair suggestions helpful! On a somewhat related note, about nine years ago (after I’d been living with mbc for a year), dh and I bought a Temperpedic mattress after sleeping on one in a hotel and having the best night of sleep ever. The mattress was pricey but we have never once regretted the purchase because it is still so comfortable to sleep in.
0 -
Hi lauri, I just wanted to say hello. I too recently joined this club I never thought of belonging to, but so grateful for the kind folks here who share their experiences. May you be comforted knowing you are not alone in your journey, by any means!
0 -
prairesea,
Thank you. It is a struggle to keep a positive upbeat attitude. When I am out and with people, I forget. The pain is always a reminder. I know I had a major surgery and it has been since June that I have been on crutches. But I’ve never taken any prescribed pain pills. I take an occasional aleve.
So I feel I shouldn’t complain. I have lost a lot of weight as after surgery I couldn’t cook and my husband did his best but it was slim pickings. I still am building up my strength so I’m not cooking much. Plus once you don’t eat it gets difficult to eat much.
Hope you are doing well. I always love to hear good things
0 -
Carol, Sunshine, I will reply about my success sleeping on a separate thread. Maybe insomniacs. Big issue for so many of us. Worth sharing maybe with others.
Gailmary
0 -
I saw an oral surgeon the other day for my jaw pain. Not so much pain anymore but earache and mouth sores. An antibiotic has helped. But CT of jaw showed him something was happening. Bone edges look fuzzy.. MAYBE 2 root canals on teeth that have cracks, followed by more antibiotics will help. Then he called my MO. Then I see that my scans were negative for progression. Yay, still stable but dr must have added to my list of allergies, xgeva! OK. I didn't plan to take more. Now I wonder what he'll do next. I see him next Thursday. Thankful he posted scan results early.
0
