So, after 7 months, Xeloda has failed me. The vague pain in my side was exactly what I was worried it would be. The lesions in my liver have tripled. Another therapy down.
I will schedule a consult with an interventional radiologist for possible Y90 treatment. The oncologist wants to move me to a SERD after the radiation. Hopefully, I will be able to get into the oral medication arm of a trial.
I'm so sad. Much love to everyone, Andi
I have had several lesions in my liver since 2019 but I do believe that the taxol has helped reduce them pretty much. I will have my scans in two weeks so I will know better. But, I have NO more liver nerve pain and before these neuprogen shots, not bone pain either. Where are you living and being treated?
I live in Birmingham, Alabama and am treated by 2 different groups here with consultation at MD Anderson. I'm trying to put off Taxol and have been encouraged by the data on Y90.
Best of luck to you. I'm so glad to know there's another good option out there.
Andi
Andi,
I am so sorry to hear that Xeloda failed. I’m really interested to learn more about Y90 please keep us in the loop. What SERD will you be on?
xo Jade
Hi Andi, I am surprised that taxol has been so good for me without feeling bad. it has been much easier than Ibrance. Tell me about the Y90.My oldest son, 31, had two major surgeries in Birmingham, AL with Dr, Andrews and Dr. Clancey.
Yes, I remember Taxol as not being so terrible. I just really don't want to lose my hair again nor be able to go anywhere for more than a week. Dr. Andrews and Clancey are wonderful. Actually, Birmingham is an outstanding town for medical care. Many advances in AIDS, juvenile diabetes and even COVID treatment have been made here.
Dr Andrew’s is a prince! He is one of the kindest, most compassionate and skilled doctor I have ever met. Dr . Clancy on rgebb CBD other had is not, kind of an ass.
Here is a pretty good article on Y90.sciencedaily.com/releases/2...
After speaking with the radiation oncologist today, I'm having doubts that I will be able to access the treatment. Ugh
Andi,Wondering why there is a problem accessing treatment?
xo Jade
Looks like private insurance doesn't like to reimburse as it hasn't been widely used. Also, there is language about exhausting all alternatives, so they may insist on IV first. I'm lucky my disease is only in my liver. It helps a bit. I'll keep you up to date.
I just learned I have progression in my liver, so I’m going to discuss Y90 with my oncologist today. Hoping I don’t run into the same problem with insurance.
Well hell, Jade. I'm so awfully sorry. What a kick in the gut. I really thought Xeloda was going to be my drug. Maybe Y90 will be a great treatment for us both. Please let me know what your doc says. Are you with Dana Farber?
Hi Andi,
I hate Xeloda, as it is the only drug that has made me feel sick. The first month I vomited constantly and had no appetite. I’m always tired and feel nauseous.
There are a few trials that look promising. I’m at the University of Vermont Medical Center and Dana Farber. I have a telemedicine call at noon and will let you know how things turn out.
xo Jade
I hope they give you all the right answers.
Hi Andi,
My oncologist at UVM wants me to start Taxol and my oncologist at Dana Farber wants me to try Tamoxifen and Verenzio. I would prefer the latter but I’m concerned about my liver mets.
xo Jade
Why no interventional radiation?
They have not ruled it out, waiting to hear back from the radiation oncologist. Ideally, I would like the radiation along with Tamoxifen and Verenzio. I want to stay away from IV chemo as long as I possibly can. Trying really hard not to get emotional.
I've been sitting in bed crying all day. I can't get to the radiation oncologist until next Thursday. I'm thinking of shortening my Xeloda break and going back to my original dose until something is done since it's moving so quickly. I agree with you on the Verzenio Tamoxifen course. I hate this emotional roller coaster.
Oh Andi, I wish that I could give you a hug! This disease is insidious! My daughters will be home from school soon, so I need to pull it together.
Where are your tumors?
Thank you, Jade. Luckily my son is grown and away. My boyfriend is a critical care doc and he's pretty put out with me today. I guess I am being a drama queen. I watched as my mother, grandmother and all 3 great aunts died of breast cancer. I guess there's some PTSD involved. I understand how hard it is for you to stay strong for your girls. I wish I had understood how difficult it was for my mom. I have only 2 lesions in my body. 3.7 cm and 2.5 cm liver lesions. I know things could be worse. Have a happy afternoon with your babies!! We will figure this out!
They are using y90 very successfully in Montreal. I am from Mobile and maybe it is worth your checking with the Mitchell Cancer Center there to see what they are doing re Y90.
Thank you! I will do that. I've also reached out to Vanderbilt if I don't like the guy here. (He has a 70s porn mustache in his photo. I'm freaking out about it! LOL@@)
Andi— I’m sending a loving hug.
Thank you for the hug! The support is so helpful. It really never ceases to amaze me that I get the most help from folks I don't know! Have a gorgeous day! Much love, Andi
Andi— so very sorry Xeloda didn’t work for you. That really is frustrating and sad. I don’t know where you are getting treatment— but I am hoping your Oncologist has some other ideas to help you. Much love and a ((hug))) for you.
Thank you so much.
Dear Andi
I so feel for you and know just how it does feel when facing a treatment change.
I’m wishing you all the very best & truly hope you find a treatment that sorts out your liver mets.
As you know, I’m now on weekly taxol and whilst I dreaded IV chemo it’s not so bad after all. I’m using the cold cap & haven’t lost any hair. Also, I’m actually in Cornwall (the weather has been awful but hoping it’s better today) for a week so missing one weekly infusion and my oncologist was ok with it. Quality of life is paramount for us and they will try and work around holidays where possible. I just hope it’s working and will know more when I have my next scan at the end of June🤞
Please take care and be kind to yourself.
Jo xx
Thank you, Jo. I must admit I'm reeling tonight. I know you've had quite the fight as well. If I'm turned down for any type of localized treatment, I may request taxol. If that happens, I'll be knocking on your door for cold cap help! Again thank you for your kind support. I'm pulling for you too! Much love, Andi
I gave felt good with weekly taxol . Back in the day I had the hard hitting full every three weeks taxol which was rough with bone pain. With Weekly lower dose , I dint have bone pain.I do take a good b Vit and b6 twice a day to accompany that plus I take 400 mgs of a good quality coq10 to ward off any potential neuropathy. So far so good on 8th treatment
Andi, sorry to hear that you have progression and now need to look at other options
I was recommended Jane McLelland’s How to Starve Cancer book and I’ve read that (a couple of times now to really understand it) and done her online course and that has really helped me see how I can block the metabolic pathways of cancer alongside the standard of care treatment I am getting from my Oncologist. You may find is useful
Thank you. I have the book on my nightstand! I wish you all the best in this battle! Andi
I am at the same place as you except different mets. Mine are in the lung. My only option right now is Chemo which I have rejected. I am taking Tamoxifen and still have progression but I am hoping it will slow the progress of the lung mets. All other mets are stable. Wishing you well and finding some solution.
Cheers, June S.
Drat! Just drat! Here's to the next line serving you well.
Drat indeed! However, my expletive has been a bit more colorful!!! Thank you for the giggle!
Yeah, feel free to drop in another four-letter word!
I am so sorry that you are having to switch treatments , the unknown is always so scary . I have just finished Paclitaxel, Pertuzumab ,& Trastuzumab .
My schedule was Paclitaxel once a week , for two weeks in a row.
Pertuzumab &Trastuzumab on first week .
Every third week off all treatment.
I started in January 2021 and finished May 6 th . I had a 1 week delay due to blood counts and a secondary non related infection .
Generally I have found the IV a chemo tolerable . My CT scan showed a good reduction in size of the Mets in my liver,
I now have a month of no treatment and if my echocardiogram comes back ok I will resume thePertuzumab & Tratuzumab IV treatment every 3 weeks .
For me the IV a chemo made me feel a better than Ibrance & Faslodex , but it does take up a day of the week for treatment .
If you have any questions ask away or private message me .
Luann
Thank you, Luann. I'm glad you're doing well. I remember that IV chemo was not nearly the beast I thought it would be. I'm sure I'll be facing it soon. Continue doing well, and know you are in my thoughts. Much love, Andi
Oh Andi, I wish you well!Love,
Marianne
So sad to read your post, Andi. Prayers for successful new treatment. Hope your pain has been managed. 💗💗🙏🏻🙏🏻Linda
Thank you for your thoughts. Pain isn't so bad....just a reminder of what's happening. Be well and enjoy your summer. Andi
You too Andi! I have PET SCAN on Friday and dread this awful anxiety. Worried I’ll be on to third line of treatment. The mind games are the worst. God bless you, sweet sister!💗💗🙏🏻🙏🏻
Linda
Bless you, too Linda! I hope your scan brings you good news and at least a short respite of peace! Living 90 days at a time just sucks.
You’ve got that right. Living on a wing and a prayer. 💗💗🙏🏻🙏🏻
I don't have any useful information to add. Just wanting to send you a hug
And IVirtual hug! It’s scary, depressing and there’s nothing you can control about this horrible disease. We are at the mercy of the meds and God. I feel just like you about quality of life. IV chemo scares the you know what out of me but reading these posts I might need to reconsider when it comes up - and it will
Please keep us posted. Do your best to stay strong and positive!
Thank you. I'm trying. It looks like today will be a poor pitiful me day! I'll be better tomorrow!I know IV chemo is in my future and I'm ok with everything but the hair thing. More the eyebrows and eyelashes. Losing them makes you look so sick. What a whiner I am. I'm sorry.
Thank you for your kind message. Hope you have a great summer and no IV chemo for you for a very long time.! Andi
Yes. It does. Can’t lie about that but there are things I do to look and feel better. Even thinning has me freaking out but I’m alive. Using eyelash serum. Biotin shampoo. Will get a good wig when the time comes. For now short hair cut wear bright colors. Be your best self!
So sorry you’re facing a treatment change...I hate them too, although I think the last one may have saved my life...I was having a really rough time on Afinitor (though I know others have thrived)...Thanks so much for the info on Y90...l have liver Mets which aren’t too bad now, but it is comforting to know that there is something out there when/if I need it...that is the wonderful thing about this site....thoughts and prayers to you, and let us know what happens.
It is wonderful to benefit from everyone else's experiences. At least we understand each other! Here's hoping you find a good sustainable treatment and your liver mets diminish! Much love, Andi
I’m on Xeloda now and really like it, except for my painful, sausage like hands! I hope it will last(Xeloda working, not my sausage-like hands—I think I’m going to try overnight gloves) but so far the longest I’ve gone with a treatment is a year....I’m on 7 months (like you!) now. Wish me luck! Barbara
Arisgram, It is so disappointing and scary when a line of treatment fails. Hope the new line of treatment is easy for you to tolerate and works well.
Thank you! I hope so, too!!! 
All the best to you! Andi
Praying for your new medication to be the right one...🙏🏻❤️🙏🏻🌲
Thank you! Take care, Andi
Wishing you all the luck in the world with your search for new treatments. Debra xxx❤️
Thank you so much! All the best, Andi
So sorry you have had progression on Xeloda and I hope the IV does the job on the two tumours ...wishing you well ! x 💕
Thank you. I'm feeling hopeful. You take care! Andi
Thank you, Sandra. I took the drama queen comment better than my oncologist telling me I was somatic after telling him for a year I had shoulder pain. Or, an attorney friend telling me not to be ridiculous; no one dies of breast cancer anymore. I've just learned to smile and nod. Should I ever unleash.......I try to tell myself it's just fear talking.
Sister/Warrior I pray you will get the trial, and that it will work to kill the cancer.🙏
Has it been 7 months already? I can’t believe where the time goes and am so sorry you are having to deal with all this sh**e again. You have your time to be emotional. It’s what we need to do before we pick ourselves up and carry on the journey. I have everything crossed that you can obtain your next treatment option with ease and that you sail along with it.Thinking of you
Clare
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Challenging Week!
Lovely Ladies 
Trial; second opinion
