Bone Mets Thread
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Nope, but I had a lot of bruising last month, when I had my eyelift!
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Hello to all!
I'm curious if anyone has CEA done as part of your tumor markers, and if CEA rising was seen as a marker for development or further development of bone mets.
Thanks for any info.
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BevJen, my MO and my PCP (just one time) check CEA along with Cancer Ag 27.29. My CEA has been steadily rising, although it's still within normal limits. She (my MO) has never been too concerned with either of them.
I find it curious that on 7/18/18 my CEA was <.0.5. When I was diagnosed with mets this year, it was 2.1 and my latest was 3.7. My old MO, who has since retired, never seemed concerned with those. Her words were "They don't really mean anything." She didn't include them on my blood work. I don't stress too much over those numbers, but I do find it interesting to track them. Are your numbers rising?
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Hi BevJen
My MO takes both CEA aND CA 27. 29 and last fall increases in both were related to progression in my spine and neck. Hope that answers your question.
Peace
Mary
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Sunshine,
My old MO never used CEA. I changed docs, and starting about a year ago, the new doc started pulling both CA27-29 and CEA. Long story short, my CEA since they started pulling it has never been below a 20; now it's at 39. CA27-29 is not normal either, but I get that one.
My Mo told me once that CEA related to liver mets; but what I'm trying to find out is if it can also relate to bone mets, since that's where there seems to be some activity now.
Thanks.
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Mine doesn’t do CEA and only occasionally checks CA 15-3. CA is on the requisition for my next blood draw but typically my tumour markers ha e not been very responsive given my burden of disease.
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My MO does all three, CEA, CA15-3 & CA27-29. They've all steadily been rising, but they apparently relate to my new liver mets since my bones are still NEAD. My last CEA was 9.2.
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To note, I have not officially been diagnosed with bone mets. I had another MRI of my lumbar and pelvis on the 14th of July, and there has been “significant progression” of the lesions that have been in my spine since 2013, way before being diagnosed with breast cancer in my stomach in 2019. I have decided to get a bone biopsy to see if it is breast cancer in my spine. I had a bone marrow biopsy in 2016 when they thought it was multiple myeloma, but that was before my diagnosis, and they said no multiple myeloma then.
Anyway, BevJen, to answer your question, I get CEA checked every month since diagnosis. It’s never been below 6.0, and it’s gone up for two months in a row and is now at 7.1. It’s been going up and down by a few tenths before this. My 27-29 and 15-3 have been higher the whole time, andthey trend up and down monthly. My 15-3 has also gone up two months in a row, but just a few points each time.
I also looked up what CEA and bone mets, and interestingly, it talks about ferritin levels and bone mets. Has anyone’s ferritin levels been high with your bone mets, and if you could give me a number, that would be good. I’ve had my ferritin checked twice in a year, and it’s gone from a high of 247 to 259 just recently. All other iron levels are good. 200 is normal.
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my MO only checks CA 15-3 and CA 27.29
Since bone mets diagnosis (Dec 2019) both TM are falling each month. CA 15-3 is now back to normal. CA 27.29 is still high but quite a bit lower than the first test
KBL— my MO tested my ferritin in April fir the 1st and only time so far. My number was 227 and shows that number is above the normal range
And all my other iron numbers are in normal eang
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interesting point about the ferritin -- I've never heard that at all nor have I ever been tested for it.
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DodgersGirl, that’s exactly how mine are, ferritin high, all other iron levels normal. They tested my Ferritin in 2016 as well, and it was slightly high then at 208. I am wondering if the ferritin rise and the progression in lesions in MRI are connected. Always researching. I just can’t help it. I know I’m not alone. Did your doc say anything to you about it?
BevJen, I do have anemia and have had it since before diagnosis, so I think that’s why they test me.
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KBL— MO has not said a word about ferritin. He tested it in April. That is the same visit that I said I was having issues sleeping, feet swelling, feeling miserable. It’s the same appointment that my dose was lowered from 125 mg to 100 mg. I had also mentioned how low my platelets were. Wonder if that’s why he ordered the test?
I have been anemic since taking Ibrance.
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Approximately 2 months ago I was tested for ferritin level due to low RBC. Concerned about anemia. All iron studies were with-in normal range except my ferritin was elevated. MO said my ferritin level was most likely elevated due to inflammation. I had just finished 19 WBR tx. in April. No mention of the reference of ferritin and bone mets.
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Tinkerbell107—interesting. MO was definitely looking at my anemia. Could be why I had an iron test and not. E related to bone mets.
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My ferritin has been elevated since 2016, so who knows? My anemia started when symptoms started back in October 2018 and have not changed due to Ibrance. They want to start me on Xgeva or something like that, and I see it can cause anemia. I don’t want it to get worse. Anybody have anemia from bone strengthener? Every time you take something for one thing, it can affect something else.
My MO did say she’s seen people with ferritin in the 1000s, so she said it wasn’t really that bad.
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hi kbl - I have chronically low-ish hemoglobin normally and the Xgeva has not been a problem for me.
Taxol lowered my hemoglobin, but since I’ve been off it, I went back to my usual levels.
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Thank you, Olma, for that information. I looked up Xgeva on my insurance, and it said it’s not covered. I’ll wait until my doctor’s appointment to see what she says.
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Yes, my ca 15/3 is stable, but my CEA keeps increasing slowly, it is still in the normal range, but every time they are checked the CEA goes up a bit. in january, when i had my first NED pet scan it was 2.0, it has slowly gone up from 2.9, 3.5 and 3.8 was 4 weeks ago. although normal is up to 5 in the lab my doctor uses, i would be so much happier if it went down only a little bit. i am very nervous about the cea, but my doctor says if my pet scan continues NED she is satisfied and has no concern about the cea. if thats the case, why bother even testing for it??
i'm a little relieved to see that i am not the only person with this issue. hopefully it means nothing. in any event next cea is aweek from tomorrow..
never heard of ferritin level but i will speak to my MO.
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KBL my MO once said cea marker shows liver activity. Mine tests every month, my cea’s gone up suddenly 3ple times after being stable for few months. That makes sense because the last blood tests showed the liver enzymes changed. My MO does not go into details, but I think rising cea level can be related to change in liver enzymes that affected by ibrance. Actually I’m really hopeful to be as simple as this theory. As you said one medication treats one part but damage others. I never tested for ferritin but the MO put it for next blood test.
Ref to xgeva, both xgeva and zometa are suggested for bone Mets, when level of calcium is going up/ risk of SREs is high and really depends on the size and location of tumors, I started bone strengthener treatment before taking first cycle of ibrance.
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KBL, maybe Zometa then. Both prescribed for the same purpose Xgeva is newer and administered via a shot, Zometa is an infusion
Sometimes doctors office can get insurance to approve OR you can get assistance from the drug company
https://www.amgenassist360.com/patient/xgeva-cost-assistance/0 -
Hi, Julia. My CEA has been high from the start, but nothing else indicates liver issues. I did have one CT that said I may have a cyst on my liver. That's as far as it went at this point.
Olma, thank you for the link. I will look it up. I won't be getting anything until my doc talks to insurance company. She told me she was going to seek approval before my next appointment on the 27th. I'm not sure I even want to start anything until I have a bone biopsy and make sure what they see on the MRI is bone mets. I'll write once I find out.
I've also ordered a combo calcium/D3 pill she told me to take for when I start the bone strengthener.
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KBL, did your doctor tell you about dosage of calcium & D3?
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Julia, yes. She said to take 1000-1200 mg of calcium and 800-1000 iu of D3. I ordered a supplement that has the right amounts in one pill.
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I’m sitting here tonight just contemplating a bone biopsy. I am so confused and am not sure I should have it. The reason I had the MRIs was to see if the lesions I had on my spine had gotten worse. They have, but they say the lesions are in my bone marrow. I had a bone marrow biopsy in 2016, and it came back normal. I don’t know what a bone biopsy is going to tell me when they say the lesions are in my marrow. It says another phrase, bony matrices. These lesions have been there since 2013. There has been significant progression in the number of lesions, but I’m at a loss for which direction to go or what they are. Who would think I could go that long without treatment and still have been okay? The breast cancer in my stomach was just found last year.
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KBL, I understand your frustration in doubt. I would follow my MO’s advice if bone biopsy is what your MO wants, then go for it without any doubt. Let us know.
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Thank you, Julia. I’m waiting for the location where I would have it to call to set up my appointment. They’re supposed to call this week.
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Hi,
I have CEA and mine did rise quite a bit, it was progression in my pelvis. My 15.3 and 27.29 were relatively stable I had my pelvis radiated rather than change med's. Will know next month if my CEA comes down alot. This month's test was too close to the finish of rads.
Stacey
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sbaaronson, can you tell me what your CEA number was. How did they find it in your pelvis? I hope your numbers come down.
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Stacey,
I'm very interesting in the CEA numbers, etc. As I posted earlier, my CEA has gone up. Interestingly, today my MO didn't even mention it when we were on a video visit. She did note that my CA27-29 was "stable" and staying within a certain range, so we are staying on the same treatments.
I FINALLY have an appointment on Monday with a radiation oncologist to review my latest scans and see if anything can be radiated. I know I have diffuse mets throughout my skeleton, and the only place that I ever really get any pain is in my lower back -- I guess it's my pelvis? -- and that's usually when I've been doing long walks, because the pounding on hard surfaces like concrete just really does a number on my back.
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KBL,
My CEA climbed over several months. In Feb it was 11, March 12, April 17, May 19. Oddly, just prior to the targeted radiation, it came down to 18 in June and was 17 this month. 15.3 and 27.29 are mostly stable. CT did not show progression in pelvis, Bone Scan was read as potential degeneration versus disease, ultimately a PET diagnosed it. Frankly, I haven't had good diagnostics with anything other than the PET but the insurance company fights it every time the doctor orders it if I haven't had a CT and Bone Scan (totally worthless). In fact my CT showed no progression.
Hope this helps-
Stacey
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