I’m getting a second opinion Friday from the Hillman Cancer Center our of Pittsburgh. Currently I’m going to a cancer center in my community. Nice people...but no access to genetic testing, trials etc.
My question is I’m currently on Herceptin Perjeta XGeva Zoladex and Arimidex. I’ve heard that 3-4 things is max dose. I’m on 5...is anyone else on this much? I see a lot on here with 2 pills Ibrance and Letroxole and I’m so jealous...2 IVs 2subcu shots:1stomach 1arm and a pill...lol! 😂
It does seem like a lot of drugs to endure! I think the reason you are taking more than others is because of your HER2 status and if you are pre menopausal. To me it seems like you have more tools in the toolbox to fight this disease.
Thanks for your reply...like I said going for a second opinion Friday and looking for any and all advice...😀
Thanks for the link...I guess my fear with all this is...right now I’m NED...what do they do when it acts up since I’m on max dose? Is it like an antibiotic that once u get immune to it you’re in trouble? 😱
Going to a major cancer center like that for a second opinion is a wise thing to do, and something I suggest all cancer patients do at least once early on. In a way, you are at an advantage because both E+ and her2neu+ bc have specific treatments that target them. Besides being on meds for both of those and being menopausal, you are on Xgeva for bone mets. It is standard treatment for those of us with bone mets to get either a bisphosphonate like Zometa or Aredia, or the newer Xgeva. When I was first diagnosed, with bone mets from the get go, and an E+ bc, I was told that for those of us who get a good response from 3 different hormonal treatments before they stop working for us, we can go on low dose Estrogen and for some, that will halt progression, and hopefully for most of us, we can then go back to the hormonals that have worked before. That was what my onc and I planned for me. Now it is 15 years later, I am on just third line treatment and my wonderful onc retired last year and my new onc, alot younger but also very good at communicating with me, agrees that we could do that. Another option for me is to return to the bc specialist at the Comprehensive Cancer Center where I got my first second opinion, and be "co-treated" by the two of them. My new onc was fine with that idea and I am thinking about doing it sometime soon. I am 72 and have other serious health issues and am going to ask about seeing somebody there like a geriatric specialist who can look at the big picture including all my health issues and perhaps address a couple of non cancer concerns I have.
I just went to the Perjeta website and the home page was all about using Herceptin and Perjeta together to prevent recurrence. It said in trials that those on that combo had recurrence 18% less often than those on Herceptin and placebo. I could not find a link for those with stage IV so I think asking the second opinion onc about that is a good idea. My instinct, as a trained bc patient advocate and one who has worked with in the health care system, plus being a long term mbc survivor who has continually tried to keep up with latest advances, would be if you feel strongly about reducing the number of meds you are on, that Perjeta would be the one to drop. You might get longer from the Herceptin if you use it alone to target the her2neu cancer and then add the Perjeta back in later if/when the Herceptin alone fails. My own perspective is that we want to get the longest amount of time possible with each medication! Of course that may not be a good reference point with a highly aggressive cancer. And somewhat off topic, I had a horrible time typing in Perjeta!! I kept writing Prejecta or some derivative of that! lol
Hi PJ! Thanks for your thoughts! I thought of that as well about dropping Perjeta for a while...we dropped it after the first 6 when numbers went down to normal...then we had a 5% progression in right side and did a right mastectomy and added Perjeta back. Then numbers went back to normal but he said that we were going to stay on it. Then he stopped take TM numbers so there’s no accountability to what is going on. It’s been over 3 months since he’s done TM...which is another reason I’ve decided I needed to seek another opinion...
Good luck with the second opinion- great idea. I know my oncologist does not put reliability on the markers but only uses it as a guide- goes more by how I feel and the scans. Please let us know how it goes.
😀 Thanks! I’ll reply back on Friday!
Hi, I just wanted to say that I have experience with Hillman at UPMC. I took my sister there for over a year to see a melanoma specialist and we live in nyc. I must say that I thought it was such a caring and nurturing environment. The entire system is set up to help the patient and caregivers navigate through the system, get useful information and feel taken care of. On top of all this, there is some of the best oncology talent there. I know you are going for a second opinion but just wanted to share my experience. I have been in healthcare for over 30 years and worked for or visited some of the largest healthcare systems across the country and I believe Hillman is a model system for others to strive to achieve. Good luck!
Thank u so much!
That is great to hear! With our disease it’s great to know that I’m in with a system that knows cancer! 😀💕 The group I’m in with now is good for early stage disease. But I’m in this for the long haul and want access to cutting edge meds as they become available 😀
Very low ER positive MBC
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