Bone Mets Thread
Comments
-
Divine - So nice to see a post from you. I was wondering how you were doing, as hadn't seen anything from you for sometime. Hope you had a nice holiday.
0 -
@malleemiss251 thank you for your reply,
Here, none of the onc suggested a bone scan,
In most cases, they suggest PET-CT or MRI. I am sure that all the tests should be done,
So When one test fails to detect something, another one will succeeds.
Because while the MRI of my legs showed mets near my knee and in the heel, the PET-CT scan didn't reveal anything there. No uptake at all.
Actually I have pain in the heel but no pain in my knee, This is strange. Which of the two tests is more accurate?
0 -
@norah2024 this is a bit worrying for me…i discovered my bone met last january through an MRI that 'looked odd', when i did the PET/CT my 6 mets showed. I'm doing only PET/CT since then…here in Egypt (where I come from and live) this is the ultimate scan for cancer. I didn't know and MRI can show something that PET/CT doesn't show.
@moderators can you help, do you have information on this?
1 -
@wren44
Thank you so much for the clarification ❤️❤️
0 -
@radiation_cinderella
By the way, since you are from Egypt, from where you get kasqali? Is it safe to buy it from Egypt? Because i am selfpay now and I have to buy it at my own expense, no more insurance for this year, and the price here in the Emirates is very high, as it costs approximately $7,000.
0 -
Here's some information that may help you understand what each of these types of tests show:
And, here's some more info about Bone Mets:
Bone Metastasis: Symptoms, Diagnosis, and Treatments
We hope this helps!
—The Mods
3 -
@norah2024 it safe and available in Egypt. It’s also self pay but you go through patient assisted program with Novartis…I pay 1000€ for one pack, then they give me a second one for free. You need to follow-up with a doctor though because there’s a code that you get to participate in the program. 7000$ is too much and unrealistic to keep. Albi ma3aki.
I tried to get it through the National Council for Cancer but it’s a full time job and I’m unable to do it, but I heard it’s available for free for women who follow up at the Breast Hospital in Tagamo3.
1 -
@radiation_cinderella
Thank you so much for your reply and clarification,
Actually I bought a bunch of medicine boxes from Egypt from Al Azaby Pharmacy almost the same price , but what made me suspicious was that the boxes were not sealed, However, I use to buy it from Dubai, while sealing is common as it ensures product integrity and safety.
0 -
@norah2024 Al Ezaby sells the box with a bit over 52 thousands EGP, if you're with the Novartis program you get 2 boxes with the price of one. I have no doubt about the medication's status.
I also know they are safe and effective because I'm in remission now and regression started from 2 cycles :) The reason why there's a huge price difference is that Novartis cannot sell their products at the same price for Egypt as other countries because the economic situation. Also the patient support program calls you once in a while for survey - it's a good market for testing their medication
Best of luck, we seem to have a pretty close timeline.
1 -
@radiation_cinderella
I'm really glad to hear that you're seeing improvements, It sounds like you're making progress, which is encouraging!And thank you for your advice about the medicine, I was so concern, especially when it comes to medications. It's important to feel comfortable and informed about what I am taking.
0 -
Thinking about you divine.
1 -
I dont know where to put this so I am trying here.
I have been on Ribociclib and letrozole for 4 years, and as of the last scan, I am stable.
I did develop skin issues when I started the treatment mostly, I have now developed a leg ulcer which is taking a long time to heal I am having a consultation with a vascular specialist.
The Ribociclb has affected my neutrophils but not enough to stop or reduce treatment.
I have had a few infections in the past few months and just generally under the weather.
Has this happened to anyone else?
2 -
Hi @sunnidays, I am on the same combo and I got an infection, or a reoccurrence of a virus after I began some probiotics. It has taken a long time to begin to feel as good as I was prior to the infection/virus. I only felt really bad for about three days - but since then I have just felt a bit "off", even though scans and bloodwork are stable/very good. A blister took 2 months to heal. My neutrophils typically are either at the very bottom of normal or just under the cut-off for normal range.
2 -
Has anybody had CA 15-3 and CEA jump but signatera go down? On kisqali since May. TM have never really gone down. CEA started off normal, increasing a little at a time for three months, but just went out of range for the first time. 15-3 this month jumped from 76-96, but my Signatera actually dropped from 12 to 3. Such a roller coaster ride. Was all happy about the Signatera and so was MO but then 30 minutes later, the TM came in. Ideas?
0 -
I am afraid I haven't had a signatura test, so I am not much help. My onc goes by tumour markers and scans. All the best to you in your search for an answer. Perhaps one of the other members on this site will be able to provide more information than I did.
0 -
Hello… I have been reading various posts on this site for some time now but wanted to see if anyone had jump in tumor markers due to xgeva? I haven’t been doing monthly blood work for tumor markers but did one in March when bone mets were discovered and it was at 79. In Feb I started with 600 mg of ribociclib, falsodex injections and zometa and 3 months later tumor markers dropped to 44 (I was super excited), we dropped ribociclib to 400 mg in Sept as my neutrophils were yo low and we just retested tumor markers and result is 147. I am just got switched from zometa to xgeva and I am wondering if that might have caused the jump as I’ve heard some other things could influence CA 15-3 to go up? I really hope it’s the medication and not progression. My scans have been stable, last scan was in Oct and next ones are scheduled for February.
does anyone knows of any other blood work test that could be beneficial to check tumor markers, how accurate is Signatera? I feel ok, have some small pains here snd there, mainly in the spine area, but moving and walking helps but seeing this blood work result, it really messed me up as I get worried very easily ( something I really need to work on😏)Hope to get some feedback from
2 -
Hi @vik2ri , my tumor markers are always normal even when I discovered I was MBC. They were never indicative in my case. I hope all will be well and you will get reassured by your medical team soon <3
1 -
Hi @vik2ri, and welcome to BC.org. While we're sorry you have to be here and worried, we're glad you found us, and glad to hear that your scans have been stable.
Tumor markers like CA 15-3 can fluctuate due to medications, inflammation, etc. Discussing these changes with your medical team can clarify and help identify additional tests. In the meantime, you may find our section helpful. Please let us know if there is anything else we can help with. We're here for you!
The Mods
1 -
@vik2ri I can understand why you might be concerned. I also had to drop to 400mg of Kisqali, and on my next blood test, my tumor markers had gone up slightly (still in normal range). They went back down again for the next test. At the beginning of my diagnosis, my tumor markers were sky high, but dropped to normal in about 8 months. Not sure whether what's happening with yours, but I hope your oncologist can give you reassurance.
1 -
Thank you for all the responses, truly appreciated!!
I am just hoping this medication combo is working 🙏🙏 I will redo the test in a week and see what are the levels and discuss with my oncologist on the 18th and ask to do some other test perhaps to confirm if meds are really working.0 -
Hi @vik2ri After I was First diagnosed and treated for Stage IIIA BC. In 2009, My oncologist always did CA27-29 TM blood test at each follow up. My numbers were always Normal, at 28 every time and once or twice 31. These are low numbers and this continued or 13 years with no Change. Then in I got a call from him in Jan 22 that my markers shot upto 84 after all those yeas of thinking I was “cancer free”. Had me do CAT. CT, Bone and MRI, which bowed numerous mets throughout my bones. My Oncologist put me on Verzenio, Xgeva, & Fasoldex. When I First went on that treatment He did 3 tumor CA 27-29 tests the numbers went down from 84 to 64, 35. He has not done any. More. Since. I guess because my Scans have bee stable with no evidence of active disease. NEAD.. I’ve been on the. Verzenio daily 2xday , and monthly. Xgeva & Falsoldex Injections. Your worries about whether the meds are working is very normal. No matter how long you ar on them. I worry every time I’m due for my Scans if they are still keeping me stable. So far so good. It will be 2 years in January.😉Your Onc will probably want to do scans on you to. see if anything shows up any where else. Most likely your upcoming scans in February will give you answers and you’ll learn how well he meds are working. Have a peaceful evening 💕
1 -
Hello,
Just wanted to give you a quick update… I saw my oncologist on Wednesday and he didn’t seem to be too concerned about my cancer marker jump, he said he doesn’t find this particular test reliable therefore doesn’t like to do it all the time. He did move my scans to Jan 8th just to make sure all is good, so hoping for the good news 🙏🙏🙏 as I’ve been mainly stable since started the treatment in February ( ribociclib, falsodex, zometa / switched to xgeva last month)
I will try not to stress about this now over holidays and hope for the good news in the new year!
2
