Bone Mets Thread
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Kbl my tumor marker CA15-3 is climbing 200 points a time. My CEA is normal. None of it makes sense. PET scans every 4 months show no progression. I have no pain. None of this seems to make sense. I have asked my Onco if she wants to do any additional testing. I am on the lowest dose of Ibrance , and I have to take pauses because my ANC and wbc get so low. I am wondering when I start back up, are these flare reactions? I will hopefully hear from my doctor tomorrow.
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Hi Gigi- Nice to see you here! I saw a nurse practitioner yesterday and we talked a little bit about tumor markers (mine are ok for now), and how they can be so erratic and that some clinics don't even bother with them, because of the lack of reliability that they have. She said any change in a tumor marker has to also be double checked and correlate with a change in something like blood work or scans to be meaningful. She implied that a change in a tumor marker without other notable corroborating changes pretty much means nothing. It's likely that you are just fine since your PET was OK.
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Gigi, I agree with what threetree wrote about tumor markers. My CA 15.3 shoot up from 16.8 to 53.6 on 1/30. My oncologist had it rechecked on 2/5 and it was 16.3. She said the same thing about needing to collaborate with scans to see if they noted any progression.
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@sunshine99 Hi! How are you feeling with the esophageal mets? Are your symptoms better since starting Truqap? I hope the med is gentle on you. It’s amazing how some doctors don’t even use tumor markers. That should be a crime if you have lobular. I realize they don’t work for everyone, but I believe everyone should have a baseline marker test. How long have you been on the Truqap?
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@kbl, I've been on Truqap since 1/22, although I started with a half dose since I read the script wrong. I was taking only one pill each AM and PM. I'm on the correct dose now and so far, I've had no real SEs from it.
My esophagus is supposed to be getting better, but the last few days, I'm noticing some of the issues I was having before. I'm keeping a sort of journal and will monitor it so that I can tell my MO or the gastro doc if I see him again.
My original MO and my current one both use tumor markers, although they don't get hysterical over them. I think my current MO is curious as to why my CEA is rising, but I'm ok with a watch-and-see approach.
The numbness in my toes continues to concern me but that's another watch-and-see thing.
How have YOU been lately?
Carol
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My Oncologist always did the tumor markers throughout the years he followed me every 6 months. Markers were always consistently low but then suddenly shot up which alerted him to suspect progression which was confirmed with scans.I. I noticed that they don’t test my tumor markers any more since my scans are always stable. I do wish he would do the marker test once in a while just so I can follow my numbers on My Chart.
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Thanks for all the input. It helps to put things into perspective. Threetree hi. We haven’t chatted for awhile. This time you said what I needed to hear ❤️
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Gigi - Again, nice to "see" you, and glad to share what I had learned. Nice to know that it helped a bit!
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shanagirl, it might not hurt to ask your MO to do the tumor markers—just for your information. I've been tracking my numbers (CBC, CMP, CEA, CA 27.29) since my first diagnosis in 2007. My MO is now monitoring my A1C since it can be elevated with Truqap. I love spreadsheets and love being able to look back at my numbers. I think it gives me a tiny sense of control when I can plug those numbers neatly into an Excel box. That's just me…
Carol
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So sorry I fell off the radar. I have been a little busy and now have my grandson for a few days.
Although doctors don’t like to test tumor markers, they are a lifeline for me, as scans for me are as unreliable as tumor markers are for others. That’s why it took them six years and a spread to my stomach, because scans failed me miserably.
If tumor markers are jumping 200 points for more than three months, I would insist on further investigation, especially if you have lobular.Carol, thank you for asking. I’m doing fairly well. Orserdu still seems to be working. I’m so grateful. I’m sorry you’re having some symptoms. I hope they clear up soon.
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Hi Ladies: I will l be starting zometa on April 22. I had to wait because I had to get some dental work done. Did any of you ladies have teeth problems with zometa? I know there can be jaw issues. I do not want my teeth to fall out on top of everything else.And for those of you who had teeth issued with the zometa what did you do?
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hi @jen1, it is true that osteonecrosis of the jaw can be caused by bisphosphonates, medicines used to strengthen bones (like Zometa).
On this page are some tips to helping to prevent this, and it also says what to do should you have dental issues.
Here are the tips to minimize the risk of developing it:
Schedule a dental exam and cleaning before you begin breast cancer treatment.
Tell your dentist that you're about to start treatment and discuss setting up regular dental check-ups during your treatment period.
Tell your oncologist about any dental procedures you have planned, such as extractions or dental implant insertion, before you start treatment for breast cancer.
Have your dentist check and adjust removable dentures as needed during treatment.
Tell your dentist and oncologist if you have bleeding gums, pain, signs of infection in your mouth, or any unusual feeling in your teeth or gums.
Maintain excellent oral hygiene (brush and floss after every meal) to reduce the risk of infection.
Hope this is helpful!
Your Mods0 -
Hi again everyone. I had my PET scan today. Results show some progression in size and number. I am on Faslodex and Ibrance. If my doctor changes my meds what has been your experience there? What will she go to next? Have any of you had to go on from that regimen?
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Gigi - I haven't had to switch at this point (Verzenio and Faslodex), so have nothing specific to offer re your questions, but I did want to let you know that I'm sorry to read about the progression and need to switch. I understand that there are quite a few options out there that I am sure others will know about. Wishing you all the best.
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Thanks Threetree. I am bummed to say the least. I am wondering if she will want to do a blood biopsy at this point? I just don’t know what to expect. Scary times for me. I can seem to handle things if I know what to expect.
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Similar situation. Progression on capecitabine/xeloda. The suggested alternatives so far seem to be prohibited for people with ONJ, which I developed after one year of bisphosonates
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Hi Gigil❤️. I haven’t posted for a long, long time, but sometimes I was reading the comments. I was like the big bird that sticks its head in the sand, but its b.. is sticking out. I am currently on Ibrance/ letrozole, for about 6,5 years, only bones Mets. Last Pet scan showed progression and I suspect that my doctor will change the medication. I feel so depress …even tough I expected this to happen after every Pet scan. My situation is similar to yours, so I am curious what is your next step. I’ll see the doctor in couple days and will ask questions.
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blueshine, I'm sorry you got less than optimistic news on your PET scan. I hear you about the ostrich! I hope your upcoming visit with your MO gives you some hope and direction.
Carol
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@blueshine - WOW! 6.5 years on the same line of treatment. I just passed 3 years and am hoping for more.
Sorry to hear your PET showed some progression. Good luck with your doctor appt next week. Maybe he/she will suggest testing for the ERS1 mutation if you haven't had that done yet. Read that about 50% of patients on AIs develop that over time.
Sending hugs 🤗 and prayers 🙏 your way. Keep us posted.
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Thank you Carol, thank you Going to beatthis for encouraging words
Yes, I expect to have to do this test for mutations. Does someone know how long time it’ll take until I have results?
So many questions……
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I know KBL had it done last Sept. Turns out she does have the ESR1 mutation. Is on Orserdu/Elacestrant since Oct 2023 and doing really well!
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Man oh man, I have been in so much pain since Saturday. The pain is all on the left side of my spine, from my bra line to my pants line, and radiates to my left ribs under my breast on the front. I can only lay on my right side. My home pain meds are barely touching the pain. I went to the ER yesterday and they gave me some IV meds which brought my pain back down to a 5. They also did a CT scan that didn’t show any fractures or organ involvement. I was supposed to get a PET/CT yesterday but the machine is down. I’ve been taking my breakthrough meds every 3 hours since I got home yesterday. And all night I got maybe an hour at a time of sleep. Now my pain is back up to an 8. I’m in a hot bath floating and that helps a bit. But I think I’m going to have to get my husband to come home and take me back to the ER. I hate that! Sorry for the long rant.
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katyblu, I'm so sorry! I forget if you have a palliative care physician. It sounds like it might help.
I'm sending you virtual hugs,
Carol
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Hi everyone ❤️. I am a little bit confused after seeing my doctor. She wants bone biopsy / never done and scared/ and blood test for mutations. What sounded strange that she wants to start me on Faslodex only after bone biopsy results, before to look at the whole picture with the genomic test results. And I already planned overseas trip, so she said , I’ll give you the shot and you can can go??? What if I have SE and have pain during 10 + hours on the plain and be in a foreign country?
I don’t have trust in doctors and I am planing to go on my trip after the two tests, but not to start Faslodex.
I would like to hear what you think and do you have advice. Thank you in advance.
Love and hugs❤️ Elena0 -
Elena, I think I’d want to wait until after my trip to get my first Faslodex shots. We all react differently, and you might feel better waiting. I’m sorry they found bone mets.
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Thank you Sunshine. I feel strongly about my decision, but it’s a relief to hear you think the same. This doctors look at us as the next case and the only way to put themselves in our shoes is , only if it happens to them. That’s why I would like to be informed as much as possible.
Love to all
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@blueshine I had my doctor appointment today to discuss my PET scan. I have had a little progression, just in bone, but tumor marker going up. I am having a blood biopsy, had a bunch of lab looking for vitamin deficiencies and she switched me to Exemestame and Afinitor. After the genomic results come back, she may change meds again. I was on Faslodex and Ibrance. I was very nervous for today. After a long talk and a look at the flow chart of meds, at least I know what to expect. Is anyone else on this combination? No shots in the rear end for me today for the first time in 18 months. That part was kind of a relief. New meds are never fun, however.
I have had a bone biopsy a couple of years ago. It wasn’t difficult or painful at all. If we don’t get enough circulating cancer cells, I might have to do another one. Here’s hoping we can get enough info from the blood. If not, one step at a time. As for the Faslodex shot, the only side effect I had was a bit of an achey back the second day after, and most months an optical migraine with no pain - usually just one a month. I know it is different for everyone.
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Gigil, from my experience,we didn’t change medication for little progressions only bones, because every PET scan is different, fluctuating was typical for the disease. If I had increase in uptake, next 4 months is less. But like you said, everyone is different. Yeee, for no more shots! I pray for you to find the right treatment with less SE.
Sending love to all
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blue shine that was what I wondered about. My doctor showed me my scans side by side and she was having trouble titrwting the two so they were ar the same level of exposure. I really feel like my PET scan was over-read this time, and now it triggered a change in meds. Once a doctor gets an interpretation like that, she doesn’t dare not sit up and pay attention. Frustrating!
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Elena, do your tumor markers track with the cancer? if so, perhaps your MO wants to use them to track the response to Faslodex alone, and wait for TMs to increase before adding in a CEK4,6i. Bone-only mets sometimes respond well to Faslodex monotherapy and this way they can save the CDK4,6 for a later line. It seems a reasonable suggestion
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