My sister was diagnosed with stage4 MBC in January that spread to the bones and possible spots on liver, after successfully beating DCIS more than 15 years ago. She received radiation which reduced rib pain and started on Verenzio on February 19th, in combination with Anastrozole and Xgeva shot. Her oncologist is seeing her every two weeks and so far she has tolerated this treatment with very few side effects, However, she is still petrified as they check the CA27-29 markers every two weeks and the numbers continue to go up, not down. She started aat 318 and they are up above 500. She will have another PET scan on April 27th. We have been telling her that she is very early on in treatment but any encouraging input from fellow warriors might help her mental state. Once she gets a report of some positive results I am hoping shewill have the courage to join this group herself. It is wonderful, not just for those with MBC but also for caregivers. Thank you!
Any advice for sister with MBC - SHARE Metastatic ...
Any advice for sister with MBC
hello Sjherm! Your sister is not alone…especially the fear and anxiety at the beg of the diagnosis and treatments. She is entering a very frightening world…but she will soon see that she will be able to thrive.
Today’s meds are more effective and plentiful than even 15 years ago. I too had thought I had left breast cancer in the year view mirror after 27 years..and all of a sudden I had a limp that revealed MBC in my pelvis. I was similarly treated with aromatase inhibitors and in my case IBrance. The fact is that tumor markers can be terrifying as we watch them rise and fall. Ultimately you’ll find that the markers are a guide but they reflect multiple changes within the body including the effect of infections and other illnesses…
I wish you and your sister well…it’s a confusing and scarey journey. But it can be a long journey yet. 🙏🙏❤️🩹❤️🩹
Thank you so much for your kind and compassionate words. I will share them with my sister Patty. Every encouraging message can do wonders for the spirit. I wish you the best in your continuing journey. ❤️❤️❤️
Your sister is lucky to have a brother like you! Out here looking for info that will help her. Having good support from family and friends helps us alot. This on-line community can be helpful, too. My MBC journey is different from hers, but anxiety and wild thoughts are sure familiar! I was diagnosed at stage 4 with "extensive" bone mets. Learning as much as possible about MBC was my way of coping. I read, attended big BC and MBC conferences. There was a women at the first conference I attended who had had MBC for 30 years--that was sure hope giving! Last month marked 20 years of MBC for me! I never expected to live this long. I hope your sister does well for a long time! And tell her that tumor markers can be misleading and some oncs don't use them because of the fear they can generate in us! They are way less reliable than scans and both come behind what our bodies are telling us!
Thank you for your encouraging words PJBinMIN. It’s wonderful news that you’ve celebrated your 20 year anniversary! My sister is feeling well and your comments regarding what our bodies are telling us is so important to remember when fighting this battle. Thank you so much for your input!
I think 310 to 500 not to bad is slow down the grow eventually will go dow if drug work i was start verzenio at 2022 feb first couole month ca 27.25 elevated around june slow drop to 100 then maintain the number for me for 2 and half years
Thank you kellylinkane for your comments. I have passed them on to my sister who isuplifted by the positive feedback - so important when first beginning treatment!
🙂yes, yes! !
I too have been fairly recently diagnosed with bone mets affter 12 years of other things. It's hard to know what's happening. I'm just trying to lean back and get used to the ride. As someone else said, it's wonderful your sis has a sibling like you in her corner. Donna
You’re right, it’s early treatment days for her. She needs to find a new level of normal. There is every reason to be hopeful. I’m a 9 year MBC patient and many on here have great results too. I was petrified for the first month and calmed down after about 3 months. She needs to have confidence in her oncologist and if not, then seek out one she likes. Good luck to her and you.
Dear Sjherm
Please tell your sister not to get too worried about the markers although I know that’s hard to do. (I’m actually not sure why they’re testing them every two weeks; most cases they just check them along with other routine monthly blood work. Every two weeks seems that they’re just causing unnecessary stress since you’re not taking any action.)
When you first start targeted therapy, the markers can go up because of dead cancer cells in the blood. The markers can also go up for many reasons that are not understood. Some oncos deliberately don’t test markers. Bottom line is that markers are just one bit of data and what matters is the scan. For example, my numbers recently jumped 200 points but my scan showed as stable. Then the markers dropped by 150. So I’ve learned that worrying about markers is pointless. Since your sister has minimal side effects tell her to work on not thinking about cancer and on trying to enjoy each day. It’s also better for immune system to not worry and to not have fear. Best of luck for the scan on April 27!
Helen
Hi Sjherm, this is a supportive community and I think your sister would benefit from seeing just how many women are stable and living happy lives as they continue with MBC. She just started treatment and I was told that sometimes there are spikes early on with bone scans when treatment starts then it subsides. I have areas that radiology says are completely healed in my ribs and I did not have radiation. Some oncologists do not even check markers because they can be up for reasons unrelated to cancer. All of it is frightening but she is not alone. I am confident she will stabilize and respond well to the medications that are out now. Sending her and you lots of positive energy!
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This is my story, and that was 3 years ago. I have been 4.5 yrs with No Evidence of the Disease (NED) and going strong. I have had a few bumps in the road (total of 6 weeks over 6 years), but my life is wonderfully normal. My MBC was advanced (13 bone tumors), and I remember staying up night after night trying to find a positive story and I could find one, so I decided to be one. Prayers for her and your family. It is possible, just never be out of the fight!
Thank you for the postive thoughts and prayers. Your story helps tremendously in these early days and I appreciate your sharing! Prayers for you in your journey!
You are a blessing for your sister. My advice is when she wants to talk about her cancer, her worries and her feelings listen to her. She doesn't need advice, just love and someone tolove and listen to her. And to give her lots of hugs. You will needs lots of hugs and patience too. It is difficult to be a caretaker. It may be as hard on the caretaker as it is on the patient. There will be good days and other days that are not too good. Blessings and hugs ,Hannah
Thank you Hannah. My sister is fortunate to be part of a loving and supportive family - 5 girls and 1 boy, each of whom can bring their own type of support. But hearing from you, facing a similar battle is so helpful at this moment! Thanks for you reply!
as others have said, she is so lucky to have you and your support! I was diagnosed MBC in summer of 2019, also in the bones and possibly lungs. I feel like things got worse before they got better. I was having trouble standing up from sitting without assistance. Now I am almost 5 years with stable scans and able to keep up and care for my 2.5 year old adopted son! Scans and marker checks still cause me stress, but I am able to live a pretty normal life now! Never stop fighting! Wishing her well!
I wish you and your sister all the best on this Rollercoaster ride. The fear can be overwhelming. But with support we keep going. This site is so supportive. I hope she posts soon. We are here for each other!
The scan is what really shows what is going on. Great that she is having little or no side effects, but if this combo isn't working for her, there are other similar medications. It is strange, but medications that are similar can be more or less effective. I didn't get much from Verzenio, but I did from Ibrance, and I found Ibrance easier to tolerate. (For others, it is the opposite. It is hard to generalize.) Then there is a third medication in that class, ribociclib (Kisqali) that is supposed to be the most effective.
Thanks Tammy for that info regarding the meds. I have passed this on to my sister in the event she learns that Verenzio is not providing adequate results. I also will learn more about these alternatives. Thanks again!
Sjherm, I admire your ability to reply to so many notes so thoughtfully. I think I'll just go to sleep. Sweet dreams for you and your sister.
Sorry to hear about your sister. Just know tumor markers are not perfect. They often go up before they go down. It also takes time to go down. My markers took a few months to really go down. Also I had what looked like a bit of progression but turns out it was just the Ibrance starting to work. Praying for your sister.
Hi Sjherm, there are many more treatment options available right now for MBC. I for one had liver mets and clavicle LNs that were zapped by Ibrance as my first line of treatment for 5 years now. Please share with her our hope and blessings of good and fast recovery. God bless you!
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