treatments and scans

[Cocoacandy]

I have MBC on one rib and possibly some in lung . Does anyone just get the Faslodex shots and Xgeva ? CDK4/6 are on the future plan . Versenio was mentioned but I see it is the worse for causing diarrhea . Anyone have experience with that ? Also what scans and how often are they given to everyone ? Thanks to everyone

[Aprilfoolz1]

cocoa , I have scans quarterly , so every 3 months . My cancer center (Fred Hutchinson in Seattle WA) has told me that is standard of care . I do not have bone mets , yet so have not been on xgeva. I had 5 years on fulvestrant and Ibrance . I had slight progression so they just switched me to Kisqali and I stayed on fulvestrant . I did have 4 years of totally clear scans . Fulvestrant and a cdk4 work great. I am still working as a real estate broker so I chose to switch to Kisqali to avoid the diarrhea side effect possibility. Of course, not everyone gets side effects but I'm out and about too much to risk that ....

Re : scan frequency, while I had "clear scans " my onc said I could have scans every 6 months but I prefer every 3-4 months so I can "catch " any changes .

Hope this info is helpful sounds like you are doing well .

[Cocoacandy in reply to Aprilfoolz1]

Thank you very much for replying . Sounds like you are doing fantastic . The cdk4/6 mentioned for me was Verzenia ( spelling is probably incorrect ) I read that is the worst for diarrhea ., which like you worries me . Which scans do you get ? So far mine have been PET/CT every 4 months . The bone lesion has not been seen for coming 2 years now . Do you get bloodwork done every month ? That is a big issue for me ugh . I just noticed you are Aprilfoolz , I was almost born on April fools day just 45 minutes after midnight .

[Aprilfoolz1 in reply to Cocoacandy]

Hi, yep - my birthday is April 1st! So, you are April 2 ? I have a pet/ ct with and without contrast. So the pet scan is first and then the ct , followed by a ct after they inject the contrast. These are done in the same machine . I do have a monthly faslodex / fulvestrant injection and they did a blood test at that time , mainly to check white blood cells/ neutrophils but it also is a full panel with liver enzymes and all that . They do monthly tumor marker tests 15-3 and CEA but these have never been elevated in my case, ever!

My next scan is in the end of this month . I had my last scan in early December so that is about 4 months . Fingers crossed Kisqali is doing its magic !

[Cocoacandy in reply to Aprilfoolz1]

Yep , I was born 12:45 AM on April 2nd , so just missed your birthdate . I also get pet/ ct scans . 4 months apart . They inject the radioactive liquid then I wait 90 minutes before I go in the machine . I get monthly faslodex but do not get bloodwork with that . That will start when I start a cdk4/6 which I will dread because they have a hard time drawing blood from me . Might have to think about getting a port put in again Wishing you all the best results on your scan the end of the month !

[Kaylab]

I’m on second treatment. Diagnosed stage 4 Nov 4, 2020. I am Er+pr+ and Her2- with pik3ca mutation. Numerous Mets to liver, lungs, spine, pelvis, ribs, 2 fractures in spine. I was full of Mets. First treatment was Verzenio (150 mg for 6 months and then 100 mg twice a day) with letrezole for 10 months. And Xgeva monthly. Got NED after 6 months. 4 months later on the PET SCAN saw one 1cm bilatefal lymph node in chest and some uptake on iliac. Changed to PIQRAY and fluvesterant since Oct 2021. I am still on xgeva for 4.5 years monthly. First 2 years I had petscans every 3 months. Now petscan is every 6 months. I have been NED and/or stable for 3.5 years. Verzenio was hard for me with all the diarrhea and low white blood cells. When they lowered my dose that was better but also when I got progression.

[Cocoacandy in reply to Kaylab]

Thank you for your reply all input is helpful to hear .

[fancydog]

I am on Faslodex only, no CDK 4/6 inhibitor yet. I have had single small tumors show up every couple of yrs and so far I have been able to have radiation to take care of these But standard of care now requires something taken with Faslodex. I'm a unicorn 😀

[Cocoacandy in reply to fancydog]

Thanks for your reply . So far you are the only person on just faslodex like me . They don’t offer me radiation . Each new oncologist I get asks why I am not on cdk4/6 inhibitor ? I had 3 different oncologists in one year , hopefully this one stays longer .

[Dragonfly2]

hello! Yes, diarrhea is the hallmark of many oral treatments. You are putting “poison” into your body so no surprise. After months on Piqray (my second line) I’ve learned to walk around with Imodium pills in my pocket… at the first sign I pop one in and I can feel the instant calming effect. Interestingly, I’ve started to take a tums at night when I take my trazadone (for sleep ) and I have started to go for long stretches without diarrhea … coincidence? Extra calcium? Who knows but right now I’m happy. So my point is, don’t stress about impending diarrhea problems… your ONC should recommend a course of action to minimize the effects. 🙏🏻🙏🏻

[Cocoacandy in reply to Dragonfly2]

Thanks for replying , I appreciate your input

[Nocillo]

I was having scans quarterly but am now on a trial, so have them every 2 months (Which is a pain and too often for me). I’m just about at the 10 year mark and started with Anastrozole and Fulvestrant. Those lasted for 6 1/2 years and I was thrilled. The last treatment before the trial was Verzenio. I didn’t like it at all. I never did take anything for the diarrhea. I watched what I ate and that helped, but I never felt like going out much. It made my stomach a bit nauseous too. It only worked for about a year. I got about 2 1/2 years on Ibrance which was preferable to Verzenio to me. Maybe you’ll have better results with it.

[Cocoacandy in reply to Nocillo]

Thank you for your reply . Fantastic hearing you will be 10 year mark soon . Very encouraging to hear that .