Best Of

@cowgal I've been off Xgeva for over a year. At no point was a relay protocol suggested. Perhaps because I've never been a fracture risk and my bone scans have been "no evidence of active disease" for many years? Nonetheless, I'll ask my MO when I see her in five weeks if I need some sort of bone marker test. I'll let you know what she says. I'll have my nuclear bone scan results at that point as well. Re: confusion. I'm with you. Re: the FB poster. Everyone's situation is different and it's not always helpful to use phrases like "you can't just" and "you have to." No matter what, situations like this remind us to keep asking questions.

@scgal08 Hi there I have been thinking of you every time I pop on here, it's nice to see you! I'm glad to hear rads are over but sorry your battling fatigue and muscle weakness. I can feel the fatigue through the screen and I wish I could give you an energy boost. I wonder if the tea that Rhonda drinks for energy would help? I'm sorry that you're even dealing with all this. I will do what I can on my end and that is pray for strength and healing as you get back to chemo. Wrapping you in a giant comfort hug!!❤️

I have made it almost two years on Kisqali/Letrozole/Zometa and my MO is starting to deescalate to fewer appointments, saying that I may become a long-term survivor. No guarantees of course as we all know. I am NEAD and have been for a while. I mostly attribute this to the luck of the genetic draw. I sometimes think that my dad's genes are at war with my mom's genes, since she died of an aggressive cancer before her time. (A marvelous woman, by the way.) My dad is in his 90s. If there is anything beyond biological luck, I can say that I eat healthily (though I have a sweet tooth), walk everyday, do strength training three times a week, challenge my mind with good books and puzzles, have a supportive social circle, plan things for the future like trips, have a drink about once every three months, use THC fairly regularly as a sleep aid, take D3, calcium, magnesium, MSM and turkey tail mushroom powder. I have no idea whether any of these have any effect at all, but who knows.

@elena_p Really sorry you're going through this. Many of us have had to take some weeks off Kisqali for various reasons (letrozole is doing the heavy lifting) and some of us are moved to a lower dose. The lower dose seems as effective. I've been on 400mg for almost two years. THere are other effective drugs available. So my fingers are crossed for a good outcome for you.

@threetree , sending good vibes as you start the Xeloda!

@lacombattante Thanks! It's interesting about sauerkraut and I have been eating it after reading about its benefits. I found a recipe for sauerkraut salad, which is sauerkraut, chopped onions, peppers, celery, carrots and apple. The recipe calls for 1/4 c of vegetable oil, but I like to substitute applesauce for oil and I add a bit of sugar. It's healthy and even freezes well.

I saw my oncologist today and I will continue with my Herceptin every 3 weeks and 2,500 of Xeloda at 7/7. My platelets are back up, TG. But my red cells are still very low.

@lacombattante - Oh, thank you so much for such an encouraging and comprehensive summary of your experience with liver mets and Xeloda! This is a big help. I have all the anit-nausea and anti-diarrhea drugs here already and the fact that they thought I might need them is terrifying. I have to say though, that I was given similar drugs when I started Verzenio and I wound up never really needing any of them for the whole 2.75 years I got with that drug. My Xeloda is supposed to be delivered by some kind of courier today, so I am anxious about that. Apparently they can't just send it in the mail like the specialty pharmacy did with the Verzenio. This actually comes from my clinic and has to be signed for every month and they can't put it in my mailbox or locker. I don't get it, but they say it is for legal reasons. I'm so glad to see that you are doing so well on the Xeloda. It helps me a lot, because I see so many on here that it only worked for briefly or not at all. Yet there are those who are getting several years with it, so that gives me some hope, at least for now. I'm also glad to see that you eat a lot of probiotic food and think it helps with the digestive issues. Even before I started Verzenio, I was eating a small side serving of fresh sauerkraut every day, which I've continued to do, and I also have an afternoon bowl of probiotic yogurt with fruit and nuts in it most every afternoon. I think that saved me from a lot of the diarrhea problems that so many get with the Verzenio. That never really was a problem for me, thank goodness, so maybe it will all help with the Xeloda too. I'm also glad to see that you are successful with the one week on, one week off, schedule. So many seem to find that much more tolerable and my oncologist thought it would be better for me from the get go, since I am pretty prone to side effects. I'm to start with 3000 mg a a day. He says that although it is a low dose, it is "very effective" and that would appear to be borne out by your experience with the relatively lower doses and time schedule. I really appreciate you taking the time to describe your experience in detail. It is very beneficial to me. I wish you nothing but the best of luck as you continue with the Xeloda and I hope it gives you years and years to come!