Hi there. Just an update. Last month, my scan showed that after only 6 months on Xeloda, 2 lesions on my liver had tripled in size. I requested a consult for Y90. After an absolute fiasco of getting the images to the RO, he advised against Y90 because of too much damage caused to peripheral tissue. Instead, he recommended SBRT. He advised I could go with Y90 should the liver disease become widespread.
So Monday, Wednesday and Friday of next week, I will have treatments. 10 days later I will start on my 4th medication (probably Verzenio and Faslodex)....that is if my oncologist is still speaking to me after my hissy fit! Seriously, why do we have to coordinate our own treatment? Ugh!
As always, thanks to this community for being such a great resource! Much love to all, Andi
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I really am pleased with my taxol treatments which I was really concerned taking it again, even after 24 years. This drug has reduced my liver mets by a third in one month. So don't be worried if that is the change. So much better than Ibrance.
Only we know our bodies and, I believe, only God knows when it is our time to go. So tell your onco not to give you prognosis. That is based on everyone else and you are special, truly, we are all different
Sure there are other poison drugs for us, but I don't go there. taxol is where I am and that is enough to deal with for now. When things progress and begin to go back in negative direction, I will deal with it then. Why worry anymore than we do already with what is next. It is enough to deal with today.
I'm sorry to hear you had that run around. It IS extremely frustrating those times when we feel like we've got to double-check everything ourselves and follow up on things that medical staff said they've taken care of, but then it appears they haven't! Meanwhile the clock keeps on ticking. I am currently waiting on my 3rd specialty pharmacy contact for a new medication, fortunately not very urgently needed. I have no idea what treatments you've had before but I'm about to finish with ibrance/faslodex and switch to lynparza. Has that been offered to you yet? (I'm not sure though if it's helpful for liver mets, mine are bone). You could also try getting a 2nd opinion from another hospital. Will you keep us posted?
Good grief! I'm sorry you are having to wait! It can definitely be frustrating.
I am BRCA2 positive, so I assume Lynparza is an option. Tamoxifen was also mentioned at MDA. I'm not sue of it's exact application. It's just scary to have blown through 3 treatments so quickly.
I hope Lynparza works for you for a good long time! Thank you for the kind words. Andi
How did you feel on Xeloda. I'm on 4000mg. Says it is according to my weight which is 120 lbs. Sounds like a lot to me. How much were you taking? My hands starting peeling the first day and getting worse today, only the second day.
Other than HFS, I liked the drug. In retrospect, I wish I hadn't asked for the dose reduction. My pain started very soon after I dropped from 3000 to 2500. I also added an extra week to the break between those two cycles. I think I did this to myself.
4000 seems high. I weigh 138 and was on 3000. There were a couple of weekends I couldn't walk. I hope you tolerate it well, and it works wonders for you! I have my fingers crossed!!
Andi
Hi AndiI hate it when we have to get narky with our Drs, but it looks like it did the trick for you and you are getting the treatment you had wanted after your research.
I will be thinking of you on Monday and sending healing vibes to zap those liver mets. Keep us posted
Thank you, Claire. Hopefully, the liver mets will be fried and no new friends show up for their funeral!
I just saw your photo from your garden. How beautiful! Scenes like that remind me how much there is to be enjoyed and appreciated. I know you've been struggling with the loss of sweet Josie, and I'm so sorry. It's difficult to lose those connections. Continue to heal and know her beautiful spirit will always be a part of this vast universe. Much, much love. Andi
😆 that’s a great way of putting it Andi. We know those mets can get fried so I am crossing everything for you with this treatment.Josie would have been 57 today. I miss her dearly but I am quite content in the knowledge that she will be doing what she can to keep me going on this earth. She was always so positive I can’t really be miserable, it would not do her justice. That’s the first picture I have taken since she has passed. I used to send her pics all the time, so thank you for making me appreciate what I have again Andi. I will be with you tomorrow in spirit.
Sandra we hope you are doing ok and that you have enjoyed the photos.
Hi Andi. Sorry I am not sure of the time difference between us. It’s the evening here but may only be the afternoon for you. Either way, I hope your first day of treatment has gone well.Clare x
I am rather late chiming in here. I just want to say I am sorry for your frustration. Glad you were able to get some more advice and get a plan in place. It is always disconcerting to say the least when there is a change in medications. Try to stay strong and will be thinking about you in the coming week. Keep us posted as to how the treatment goes. Wishing you well.
Hi Andi please don't say you did this to yourself!!!! We all have to make decisions and we can't look back and say what if!!! Quality of life is important and if the side effects of that dosage was not good to your quality of life then you needed to make that decision!! We all have to find what works for us and we alone have to decide what side effects are worth putting up with to remain alive!!! Our doctors know what combinations of meds work they don't know how they effect each and every one of us .So it is up to us to communicate to them what is worth dealing with and what is not!!!!!! Also sights like this can give us a general consensus on what others have learned and we can use that to guide our decision making. Such as maybe a treatment seems unbearable when we start it, but after reading on here that most felt that way for the first 3 months then it levels out , we may decide to hang in there and see if that happens for us. Please keep us posted on your SBRT treatment. I am 🙏 for us all🌞🌈🌹
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