Bone Mets Thread
Comments
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JG, Are you comfortable reading the report of the results yourself or would you rather wait to find out when you meet with your MO? If you are okay reading the results before that appointment, check with the radiology department or medical records department where you had the scan done. They should be able to give you a copy of the results day or two after you had them done. In the US, we have a legal right to get the results. It might be different in Australia, of course. I am always impatient and find it hard to wait an entire week. Some people were prefer to hear the results from the MO. There are pros and cons to each. I hope your results are excellent! Let us know.
Hugs and prayers from, Lynne
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My onc scheduled my scans two days before my appointment with her. She is aware of "scan-anxiety" so didn't want me to have to wait too long for results. I appreciate this -- I would be a wreck waiting for a week. Two days is bad enough.
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Hi Scwilly,
Welcome to the group. I am happy for you that they found it in time so the surgeon could fix it before it really became a problem.
I'm am almost 10 years out with stage iv diagnosis of mets to bone. So there is hope. You seem to have a positive attitude, that will help your quality of life.
This is a wonderful group.
Therese
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Celebrate_Life - WOW - 10yrs bone only and it looks like you aren't on any treatment. That's wonderful. There is hope indeed. Thanks for sharing!
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Hi All,
Had 1st CT Monday to assess tx response. MO reviewed results with me today. No new lesions and known bone mets appear to be responding to tx because there is more sclerotic lesions fompared to previous imaging. Of course this is good news.
My concern is though, my lesions were sclerotic to begin with...
I have read that sclerotic lesions are more difficult to assess than lytic ones.
Warmly, V
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Gumdoctor - I would take that scan report at face value, which is awesome, and get on with life. In general we say that sclerotic lesions are healing, but you are right that we don't know that for sure. One of those known unknowns that we live with. There are many.
Congratulations.
>Z<
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Hi all - just stopping in to catch up with the bone crew. I am finishing my second round of Ibrance and Faslodex and have had my 3rd Herceptin after my mid-feb dx of a single met to my rib. I also completed 16 radiation treatments to the rib.
My first scan (PET) is scheduled for May 8. I requested a Brain MRI since I haven't had one since the MBC dx and Her2+ likes to go to the brain. I just got those results today and it is clear - THANK GOD!
My doctor said that if my PET is clear on May 8, we will only scan again in 6 months unless I have symptoms. I’m happy to have less anxiety but it seems most of you do scans every 3 months? Is anyone else on the 6 month schedule?
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Scwilly, welcome.
CelebrateLife, it is inspiring to learn you are having an exceptional response to treatment of 10 years with this disease!
Lauren, I scan every six months and would love if I could stretch that out even longer in between scans, say nine to twelve months.
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my first stage Iv diagnosis was in Sept. I had a follow up bone scan in Dec which was stable. When I had my scan on tues they ran me thru the machine once and said 'you're right to go'. Can I assume that because they did no follow up scans they found nothing new? Sorry but i'm stressing.
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Lauren- I now have scans every six months. If I get new symptoms the scans are done sooner. For the first year it was every three months.
Julie- Usually there’s an appt with your oncologist after scans to go over the results. The technician wouldn’t necessarily know as they haven’t seen previous pix. Stress is normal! Getting answers will help
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Thanks ladies! I am happy to do the 6 month scan schedule and good to see that others do it too.
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My scans were every 3 months during initial treatment after dx and since my bone met is stable, scanning is every 4 months. Hopefully cancer in the body is lazywhile I deal with the brain.
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Hello fine people,
I was diagnosed stage four, bone mets, in February 2017 from Pet/CT scan. My CA 27 29 continues to rise, First on Letrozole, then with Ibrance and although the onc sees it as somewhat stable, still rising since on Faslodex for the four months that I have been on it alone.
My question is about tumor markers and what others have experienced with them while treating bone mets. Have you seen them rise even with treatment? Needless to say I am very worried.
Chats
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Chats-my tumor markers
rise when the treatment stops working. My oncologist looks for trends. So we usually wait 2 or 3 months of it going up before we change drugs.
Lauren-I get scans regularly on trials and then when there is other indications that would necessitate. Several times I would only get them once a year just to double check things. We have found my tumor markers to be fairly reliable regarding cancer growth.
Julie-I always believe no news is good news! Plus stressing about it won't change anything but your stress hormone, which isn't a good thing to do. One of my techniques that I use is I can't change anything once the test is done. Like labs or ct scans or mri's. What will be, will be and I will deal with the issue when that time comes. There is no benefit to what if.... unproductive energy
Divine-yes, I am an exceptional responder, but I think a lot has to do with my attitude. Keeping the mind in a good place has been my priority. I have been under many treatments, but how I think about each one is important. And drink plenty of water!
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Chatsworth-my tumor makers rise with progression. My Mo weighs things in this order 1) how I feel 2) PET scan results 3) tumor markers. I swear, tumor markers exist to freak us out. Remember, fulvestrant is a slow actor. My guess is that you will be having a scan soon? Tumor markers can also rise as a result of tumor death(tumor flare).If you do have progression, your MO will come up with a treatment plan to ZAP it, especially if it is confined to bone. Best, MJH
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Chats: my TM CA15-3 rose for the first 6 cycles in Ibrance/Letrozole plus Zometa. It was 38 at dx, then went up to 149 - 161 - 174. Now it dropped to 130. During the whole 7 cycles, my primary tumor decreased in size from 8x2.5x2 cm to 0.9x0.4x0.4 cm, the nodes also decreased in size and the bone mets show beginning of sclerotic healing. It will be interesting to see the TM and the staging in 05/18, but currently I would say that TM can also rise during treatment, if you are having a good response (the TM in this case comes from the dead tumor cells).
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Hello. Had a ct scan after an auto accident to check that the seat belt hadn't broken the Foobs or damaged things inside the chest. Abnormal results. Sternal sclerotic lesion with associated mild soft tissue component. Report recommends PET scan because of my BC history.
Any one know the stats about this? Feeling a bit freaked right now.
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Stats don't matter much, only the results of the PET scan. Stats don't tell you anything about you, Galsal. Freaking out is your right and privilege. We all freaked out when diagnosed and then continue to periodically freak out. I've been freaking out quite a bit lately.
However, note that one of our long term survivors, Celebrate Life, doesn't spend a lot of energy on the what ifs. Bone mets are manageable ... stick around here and tell us what's going on. Hugely supportive group.
>Z<
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Galsal,totally get the freaking out. My Mets were found on an MRI looking for a torn rotator cuff. The pet scan will give you much more information. Try to get it done ASAP to get it over with..for me the not knowing is the worst. I've had extensive bone Mets for 3 years and doing well. Keep us posted.0
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I have learned that I have 2 types of mets, one expressed in the CA 15-3 tumor marker, and the other not. When I was first diagnosed - straight to Stage 4 with bone mets in my hip - my tumor marker stayed at 11. Despite the bone tumors spreading, my marker stayed consistent at 11 for 2 years. Then I developed mets in my liver, and my tumor markers followed upwards pretty quickly. Taxol dropped it well, but then it spread to ascites and pleural effusion. My markers got as high as 500 before we got it under control. Xeloda seems to have done the trick, all soft tissue mets have disappeared, and my markers are back down to 29 last count. But bone mets are now rampaging up and down my spine, undeterred by chemo and not affecting the tumor markers. I wonder if the bone and tissue tumors are quite different from each other. In the long run I don't suppose it matters, and I will continue on a maintenance dose of Xeloda until something else flares up. At least I will be able to track it with the markers if it attacks organs again. Doncha just love the yo-yo? At its worst, I was told I had "months, not years", now that I am back to bones only, I'm told I could be around for quite a while. I feel like I'm just hanging around waiting for it all to turn to custard again.
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BigPeaches.....I'm so sorry for your pain. I hope you can get relief xxx
Scwilly......welcome to our thread. I'm sorry you find yourself here under such painful circumstances. You'll find lots of support and knowledge here though.
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Thankfully today is better, pain is just a part of my life now I guess but at least I'm not nauseous! I'll take the little victories! Hope everyone is doing well on this beautiful Friday the 13th!
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Went for a bone mri of my spine on Thursday to see if the radiation I had in November worked. I know it didn’t since my right heel is still numb. Waster of time but the RO wanted it done. Sometimes I don’t understand why drs don’t just listen to us! I’ll get the results next week. It does feel good not to have scaniety for once!
Babs
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Babs- agree! Docs need to listen to how their patients are feeling, then use that info to guide treatment decisions. Ugh!
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Going for an scheduled mri of my spine and pelvis on Monday. My hip back pain has been getting worse. Now my arm , biceps, shoulder hurts like heck too. ( I’ve stopped knitting thinking it is repetitive injury.) I had a prednisone shot & antibiotics early this week for bronchitis. I thought it would help arthritis pain.( I was hoping back and shoulder was arthritis. ) Who knows. It just hurts and feels like a bad toothache.
Sometimes I think I’m losing my mind trying to figure this all out. Am I imagining all these pains? I can’t walk around without stopping to sit down every few minutes. Is it the laetrozole?
I guess I’ll find out some info at Friday appt with mo. She mentioned rads to pelvis? But I don’t know if it’s mets.
Not expecting answers just venting. At this point I feel like I’m turning into a hypochondriac. Can’t seem to explain this to mo. She does listen I just don’t think I’m explaining concerns.
So many of you deal with worse with such grace. I apologize for whining .
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Marie,
It’s not whining...sharing symptoms is a way to find help and know someone understands. Whining is “Poor me. I broke a nail.”
The damp weather makes aches worse I think.
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Maire, just a suggestion, but have you tried any topical rubs? I know some of them stink, but I don't care. I use them rather than pills because Mr. Liver doesn't need to clear any more toxic drugs and analgesics out than he has to.
Salon Pas makes a good gel, and if you need something stronger, get your dr to write a Rx for Voltaren gel. It works pretty well too when my hip, femur and back are killing me. Oh, and I have to sit down a lot too. It's getting harder and harder to walk. After my next scan, we'll see where things stand. I just hope I don't need a rod or pins because bloodwise and platelet-wise, I'm not in a good place for that right now.
Take care,
L
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Marie,
I’ll be thinking of you on Monday. Sending positive energy your way that your scan is good.
And there is no such thing as whining on this site. Some days I’m really good and like to build up someone who isn’t. That’s the beauty of doing this together.
Hoping you get the pain under control soon. Pain messes with my head. And none of us should have to suffer in silence.
Big hugs from PA.
Laurie
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I have a question about bone met pain. Have had bone mets for 6.5 years..I’ve never had any bone pain, per say. But I do get horrible back muscle spasms. Not bone pain for sure, but I do have spine mets and I wonder if that could be a trigger for muscle pain. Has anyone had this?
Sunset
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Babs, prayers that the scan gives you much better news than you think!!!!
Z, praying also that things are working for you, and in a very short amount of time, you are going to see improvement!!!!
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