Bone Mets Thread
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Quaatsi - You can edit your posts, which is a wonderous blessing.
All - I have been coughing for more or less 2 months straight due to one viral illness after another. My sternum has started to be painful yesterday ... more or less in the location where I have a bone metastasis. It could be spreading mets or it could be a strained muscle. I am not sure exactly where the mets are but there are a couple of points in that region that are tender. There is also a generalized pain I would associate more with a muscle strain.
I am curious about your experience both with pain from sternum mets and sternum pain that turned out to me nothing. I have a couple of fractures in that region that could have been exacerbated by the coughing so teasing out the cause will not happen without a scan.
I am going to Rochester MN to get rads to the sternum on Monday. I am guessing scans are part of the process? It will be nice to see if it the sternum got worse since the last scan.
I've never done rads before so any perspectives on rads to the sternum appreciated. I am guessing I will be getting proton beam SBRT (high dose, 1-3 sessions).
>Z<
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Z, I am sorry you are having pain. Can't answer any question about rads to sternum, but am wishing you all the best in Rochester. Mayo can be a fabulous system and they are generally incredibly efficient and kind. I live in Minneapolis and would have loved to support you in some way but am in Florida trying to escape the lousy weather -- walking the malls is no fun way to get exercise!! Bring warm clothes!!
Sending love and hope that you are feeling better soon!
Kimberly
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Thanks Kimberly. At the moment it appears I will be landing in Minneapolis in an ice storm. Trying to change flights and arrive Saturday instead. Never a dull moment.
>Z<
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Z, I have not had rads specifically for the sternum but rather through the sternum for the spine. Scans prior were done, and of course the standard measurements and markings as well as a visit with the RO. Side effects included a heartburn kind of feeling, and a sore throat that wasn't really located in the throat. Cold liquids and small soft meals helped.
I wish you much success and look forward too hearing all about your time at the Mayo.
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Z, when I had the mapping for SBRT they had me lay very still on the CT machine and took images. They didn't use contrast and didn't share the scan results or even show them to me. Using the scans, the techs took some measurements and then made tattoo marks (not too painful but I felt it for sure) so that the radiation techs would know how to line you up and be consistent with it during your treatment. Physicists then use the scans and tattoos to map out the beams.
My sense is you need might want to ask for the scan to be reviewed so that they can answer your questions about potential spread.
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Bigb:
I love the picture of Skittles! My two Yorkies are my pride and joy, and you are right....unconditional ❤️!
Here’s a picture of Huey Lewis.....he’s our rescue, so I can’t take credit for his name:
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Thanks Jen and N01 and those who responded to my question by PM. I see I will have to ask to see the scans. Putting it on the list.
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Eddy:
My counselor told me the best advice I have gotten to date. She said to live in the moment, and don't try to project what will happen tomorrow, next week, or next year. Easy for her to say, huh? But honestly, it works. She said all any of us really have is today, and wasting it wit worry and anxiety is exactly that—a waste. I try to practice mindfulness, and it sure has helped me to deal with my dx. I hope maybe this might help you too.
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Booboo1 -
that dog!0 -
Hi Z (and all), I just had my SBRT on Monday so thought I'd chime in. Mine was on lumbar spine so can't help with the sternum q's. But, can say I had mine in one high dose. The first step was an MRI followed a few days later by mapping. I was warned that it would take about 1 week following mapping for all the quality assurance checks (I asked what that entailed but didn't get a very helpful answer - something about lots of formulas and measurements that had to be checked and rechecked. Right. Good.) So then there was a CT done immediately prior to the treatment which they said was to ensure precise line-up of previous MRI with day-of body positioning. I was given a steroid to take 4 hours prior to procedure to help reduce inflammation in the surrounding tissue. The treatment itself was pretty easy as mine was done without contrast, no IV or anything - about 40 minutes for the whole process. I threw up right after because it made me so nauseous but an anti-nausea med did the trick. Incidentally, I did see my MRI and had the RO walk me through the radiation plan that showed the radiation field of the whole area but I had to ask for that. Following, I've felt good if a bit fatigued though frankly, I'm never quite sure what is the culprit of fatigue these days. That and some tingling sensation in my back around the area that was radiated but nothing that’s beentroublesome. I'll be scanned in about 3 months to see what effect this all had but so far, I'm glad I've given it a go. Wishing you safe travels and a good vibes for the procedure! M.
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MargaritaMI -
Thanks very much. I haven't been very concerned but I leave home tomorrow and I am suddenly feeling shaky. I am not worried about the procedure itself. But the cancer becomes real when I have to have a procedure and spend a week away from home starring in my own show on the All Cancer Network. The rest of the time I can believe I have things under control. Ooof, no one has this monster under control.
I appreciate that you were willing to share the details of your experience. My mind is going to shut down as I set foot in the clinic. Everyone's posts have helped me to prepare my questions and my thoughts. It seems to go well for everyone and help a lot and its not a big deal ... so away we go.
>Z<
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Godspeed, Z.. Keep updates coming. Plan is SBRT and then more immunotherapy of some sort in Japan?
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I know exactly what you mean. I also like to believe that I have everything under control though it is likely rather a profound state of denial! I only felt a bit nervous the day before my procedure but kept focused on the fact that my RO said this high-dose SBRT is, in his opinion, a curative treatment. I’m always so happy when someone on my medical team uses the term “curative” rather than the dreaded “palliative”. Anyway, shutting down your mind is a great game plan if you can do it. Upon my arrival there was some absolutely awful music playing in the treatment room. I told them, uh-uh. That ruckus noise was messing with my chi and it must be changed. I suggested a Motown station and was delighted to nexthear Percy Sledge singing Sitting on the Dock of the Bay - guaranteed to help tune out the brain.
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Z, keeping you in my prayers and thoughts. Safe travels, and praying that that radiation zaps the heck out of those cancer cells!
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Z, we are all right there in your pocket and don't you forget it. Zap those little buggers to hades, alright? Godspeed and lots of prayers for you.
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Good luck, Z....we're all with you! xoxx
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Z hope things go easy and well!!!’
Babs
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Z-Safe travels! Sending you good vibes for this treatment to be effective and SE free!!
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Good luck Z. This is going to work for you...I can feel it in my bones...
. I believe Rochester is expecting some snow...be careful if you have to drive.0 -
Good luck Z!
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Thank you guys. You are the best. Very few people know I have cancer and those few people I keep at arms length. They may not even know I am metastatic. I just can't talk about how I feel with anyone who does not have MBC. I don't want pity, I want empathy, and there is no where else for me to get it except this forum. Really helping, guys. I appreciate it.
Cure-ious - In a nutshell, it's radiation with intent to stimulate an immune response then an adoptive cell therapy redo starting February 19th. I have other tricks in play to stimulate an immune response. I am also concerned about the pain in my sternum, so I am thinking we may zap the sternum with intent to anhilate it with radiation (a higher dose than the tickle you do to get an immune response). We'll tickle a few liver lesions to get the immune response. There isn't much immune activity in bone so not the optimal target for an abscopal effect attempt anyway. Lots of details, and lots of thinking. I've learned a great deal about the immune system since October and I am deploying everythihg I know. But basically, yeah, SBRT then immunotherapy in Japan.
>Z<
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Good luck Z. Hope the rads blast the mets away. You are one gutsy woman to travel so far and with such determination. I know what you mean about friends and family. This is the only place I feel I can say what’s on my mind even if it’s just F the beast. Safe travels. Maire
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Good luck Zarovka good luck with the rads! I can totally identify with you regarding the pity, this is what worries me most when I think about sharing with my dear co-workers
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Sending prayers of travel mercies for you, Z. We need you here.
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Z- in your corner 100%. Safe travels and hope all goes smoothly. Love, MJH
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Z, hope it all goes well for you. Wishing you safe and smooth travels.
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Z- I had a terrible pain in my sterum, which was worse when pushed or prodded, and that turned out to be costeochondritis. So if you had a cold or coughing spells lately, it could be that, unless you already know its due to mets. I didn't realize that bone mets are not very immunogenic, and have a lot to learn. Don't enjoy that reading because its so complicated. so hopeully when the time comes that I really need it, I can just ask you what to do!
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Curious and Z. Also diagnosed w sternal costochondritis from lifting weights. Prescription Naprosin and rest took care of it.
Z, are you scanning before tx? You are an incredible pioneer.
Margarita, I liked how you asked for music change during SBRT. It is all about us, right? You made me laugh.
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i had stage 2 B breast cancer in 2009. I am having bone pain, especially in the back, knee, collarbone and hands. Blood work normal except defiencant vit d. Recently had a bone scan. Radiotracer uptake at L5 and in acetubulum. Radiologist reports mild arthritis. I looked at my bone scan and there's a hot spot at L5. And hot spot in pelvis. I'm in so much pain. If this is mild arthritis I would hate to see what severe arthritis looks like? Has anyone had this situation and it was actually a bone met?
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I have a sternum met but my sternum has not hurt until I got the virus quadruple whammy from hell this winter. Coughing like a madwoman. He's hoping I've got costochondritis! Scans tomorrow, I think.
We do live in weird circumstances where we wish for horrible things that are less horrible than what we have.
>Z<
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