As you may remember, I had SBRT to my liver for two lesions last month. After the 2 week holding period, I started Verzenio. Due to extreme side effects, I took a 3 day break and went down from 200mg 2x per day to one 200mg tablet every 18 hours.
I continue to have upper right quadrant pain just like I had prior to Xeloda and like that I experienced when Xeloda failed. The radiation oncologist has assured me that is not expected from the SBRT. I assume it is more progression in my liver.
At this point I've been through Ibrance, Everolimus, and Xeloda. Other than Lynparza, there are no oral drugs left for me (no mutations other than BRCA2) I am aware of. I assume it will be suggested I start Taxol by early September.
I have seen posts from other women about continuing treatments after Taxol, but what are they? Are they oral drugs I've already exhausted? If that is the case, how long is Taxol expected to work? What do you do at that point? Is that pretty much the end of the road? It seems crazy to think about as they keep telling me I have oligo disease. (As of my last scan in June, I had only the two active lesions in my liver.)
I had these questions in my head for my appointment last week, but I was so sick from the Verzenio, I was barely able to talk to my oncologist. It will be late August before I will see him again. Any insight will be appreciated.
All the best to everyone, Andi
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Arisgram
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Hi AndiSorry I didn’t see your post until after responding to your reply to my post.
Oh boy I wasn’t expecting to hear this at all.
Is it you that’s thinking progression or has the Oncologist mentioned this to you? I think Oligo is a general term which counts for most of us who have breast cancer that has spread to more than one place. So I don’t think it is as scary as it sounds.
Have you got yourself in a tizzy thinking it’s the end of the road? Take a few big deep breaths and try to calm those thoughts.
I am sure you will get some good advice on here. I know there are lots of positive reports of Taxol.
It’s a shame you don’t see your Oncologist for a while now. Is there any way you can get in touch to ask your questions? It sounds like you need a few answering to ease your mind a bit.
Sorry I don’t have any good advice, but I am sending you lots of calming hugs
I can assure you this! For me taxol has been far easier to tolerate than Ibrance ever was!! I am tired fir about 3 hours after leaving infusion because of benedryl Then can do whatever I want the rest of the week. I felt as you that this was the end game and fir me March/ early April was too close to the end game. But taxol has shrunk my liver tumors substantially. That means no more nerve back pain from liver up toward shoulder and over toward center of spine., Itching stopped all pain stopped. They can s as later you dosage as well.I am currently almost finished my 5 th month. Onco says they have women who have been on it for two years. So that would be nice. I know my doc talks about verzeneo when off this but right now not looking forward to diarrhea for a week or two. What were your symptoms from verzenio?
Wow, I'm so glad to hear you're doing so well with Taxol! That must be such a relief for you. I've always feared needing chemo infusion again at some point. This makes me feel better about that possibility. And I didn't realize it could be tolerated for so long either
Hello, I have mbc to the liver, I burned through all the oral med, Xeloda was the worst medication for me, the pains to my liver were exhausting and it did not work at all. Then I was put on abraxane and gemzar and the disease went from 90% of my liver to 15%, then stopped working. I tolerated the iv meds pretty well. Went to work everyday, 30 min drive to and from, 5 days a week and took the treatments on Saturdays. Now I am on Doxil, and that is by far even easier, once a month and minimal side effects. Tired most of all. But what chemo doesn't make us tired. (Try to eat as healthy as possible and drink water. It really does help).
I am dealing with the uncertainty of not knowing if Doxil is working because of the covid vaccine and the markers going up. (Dr think could be the doxil isn't working OR the covid vaccines I have had before each lab work is throwing everything off). The bright side is the liver enzymes are completely normal, and no liver pain at all.
So, I wait.
Breathe, you are not at the end. From what you are explaining, you sound a bit like my diagnosis, except I had more lesions to the liver. There are plenty of Iv chemos for us to try.
Try asking for a virtual meeting to put your mind at ease.
If you have any more questions on treatments I have been on you can ask me anytime.
Hi Andi I did 12 treatments of Taxol from Jan 2021 to May 2021 . I also have trastuzumab ( Herceptin ) and pertuzumab ( Perjeta ) IV Every 3 weeks . The infusion takes about 3 hours. I will continue on these 2 drugs for as long as they work . My hair is growing back eye lashes & brows . I am having a few side effects but they are manageable .
Like Blms I feel better than I did when I was on Ibrance ( but that could have been due to progression ) I have read many people are on the Traz & Pert for 24-28 months plus .
I am triple positive for ER , PR & HER2
In general I would say I am tolerating it well . If you don’t have one I would highly recommend having a Port put in for easier infusions .
Luann, My experience is very much like yours. I just had my 99th infusion and side effects have been joint pain and tired. I was diagnosed in 2015 and started on Taxol then switched to Herceptin. I also take Anastrozole in pill form every night and will stay on this regimen until it no longer works. I’ve been very lucky so far. 🙏🏻 To all of you here!
I was on anastrozole a few years ago before Ibrance . The Anastrozole was hard on my lower body joints . One of the things I love about this board is there is almost always someone who can relate and has experience.
Hi, if you have BRCA 2 I'm wondering why they haven't suggested the Lynparza yet? That is what it is good for. Or perhaps they want to give you the Taxol first? I would enquire about Lynparza if it hasn't already been discussed. I just started 2 weeks ago (after coming off the Ibrance which I did well on for over 2 years) and I feel fine!Though I don't have active liver lesions, that I am aware of anyway. Mine are bone mets
I meant to add, I am so sorry to hear you are in much pain. That is no fun at all. Seeing as you weren't able to have a decent discussion with your oncologist and you are in this period of transition, you should be able to at least call their nurse and express your concerns, and see if the doctor won't make a call to you, or allow a telemedicine appointment at the very least. You should not have to wait so long in my opinion. If that is not effective, ask if they can connect you with a nurse navigator/care co-ordinator to help get more answers. Good luck!
Hi Andi -
I hope you're doing okay...
I have to admit that I read your post a few days ago, started to respond, then stopped, to mull over your situation a bit...
I've been interested in the whole "oligo" thing ever since my sister read about it online and concluded that she fits the description (she has an occasional tumor/cluster, surgically removed (lung), followed by long (and getting longer...) periods of NED). If I weren't so happy for her, I'd be jealous!
So just as your current situation in combo with your oligo...designation?...has you a bit confused, it confused me, too...
I would still of course take it as a positive, but at the same time, you've moved through a few treatments and possibly (hopefully not!) have progression in the liver?
I guess part of me wonders if maybe the radiation oncology was wrong, i.e. maybe the pain in your upper right is just the last dying screeches from eradicated tumor? This is what I'm hoping...
If it is progression, my first question always is "did you give the verzenio long enough to take hold?". My number one learning from all of this is that *sometimes* it takes along while for the treatments to work, so stick with it unless you really have no choice...but I think you know this from being on the board!
I have no wisdom to add, just wanted to let you know that I've been thinking about you and hope that your status is better than it *feels* right now...Please do let us know...
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