There is a sadness in my heart.
It showed up the day before I trudged in to my appointment for chemo. Knowing I was in fact, going to start yet another chemo. We haven’t found my stable place, Xeloda and Tykerb rocked my world (all eyes on you Tykerb). It is funny, I always hear about how the targeted therapies are the newest, the latest, the greatest – with the least amount of side effects. Failing a therapy and having progression is not a good place emotionally.
I can’t take one targeted therapy alone though, I have HER2- and HER2+ mets in my body, the lungs we know are HER2- but what else is what is a surprise to all of us. I am also ER+, but haven’t responded to an ER+ therapy since Tamoxifen for a couple of years and after the lung mets decided to become HER2+ and spread to my vertebrae in my spine (almost every single vertebra has cancer in it – one of these days we will have the online chit chat about pain maintenance).
The night before my appointment my oncologist emailed me back (I had obtained her email address to apply for the trial and she had asked that I send the information over). I had figured she wouldn’t be a big fan of the trial itself, but I think she knows my heart is in moving immunotherapy forward. If not for me, for someone else’s future.
She called me her pen-pal after I stopped emailing and ate dinner which had me giggling.
She had realized that the weekly Taxotere schedule was maybe not what I needed, I had done every 3-weeks last year and she was aiming to mimic the Taxotere portion of the treatment. She also didn’t feel like there was a great benefit for weekly vs. every 3-weeks. This helps me mentally, as I was diagnosed with PTSD after my early stage diagnosis and all of the complications I had. Which of course comes roaring back after an evening like my blood patch the night before.
The rest of it was still undetermined.
My choice is Xeloda or HER2+ therapy. Part of me wants to try to get Xeloda back on board and see what happens with my brain mets, I wasn’t on it very long. They slowed their growth during the last 3 months. More came in, one grew bigger, but not at 3mm a month like they were before. I want to try one good shot before whole brain radiation ends up on the table with all of the micro-metastases floating around making me jumpy. Of course we did have Perjeta/Herceptin in the mix last time – but the theory is that I not be all that responsive to HER2+ therapy – so until my heart heals up a bit, we will see what Taxotere does on its own.
My tumor markers clocked in at 179.4 yesterday. So there was more growing, more cancer stuff in there over the last 3 weeks of decisions and tests.
We are going to check my white blood cells at the nadir stage (when they are expected to be at their lowest from Taxotere). The combo therapy would impact my ability to take a med that helps me grow white blood cells at a surplus rate (those medications are miserable in their own way, but I was hoping a full immune system through treatment would make life a bit more normal if insurance approved it). If my body can stay healthy enough to handle the two chemotherapies – she may add it. If not we look at HER2+ therapies and see if I can maybe get back on Perjeta, maybe, depending on how insurance decides to look at it.
There was a discussion about whether or not we can biopsy a tumor. This would delay chemo and my liver tumor can’t be biopsied (it is only visible on a PET-CT scan at the moment). The chance is that they could get one of the lymph nodes in my chest, but they hide around my lungs and my heart. We may not be able to pull enough out to try and get a report back from Foundation One. This could open more choices for immunotherapy and targeted treatments.
I am also on the list to start getting notified of relevant Phase I and Phase II trials. The ones that are much more of a test, but nothing makes it out to everybody, if someone doesn’t try it. The person who brought me a trial for discussion also told me that progression in my brain knocked me out of the one she brought me *sigh.* She also brought it right before they hooked me up and I would have had another week wash out.
My hope is we beat stuff back enough that I have time for choices. Time to have a “what’s next” on the treatment docket. By then I want to have an idea on what I want to do though.
So with a heavy heart I got my chemo. I can feel the tightening in my scalp today that proceeds hair loss, or I am just imagining it. I am figuring the 3rd time losing my hair I am a pro now. I still grew some hair last time, so I am not going to shave it and see how thin it goes first. Maybe there will be enough left for a little bit of bangs out of a hat. We will see. I expect to find handfuls of hair in the shower in a couple of weeks.
I also booked my plane ticket for the Living Beyond Breast Cancer metastatic conference in April, trying to save on plane tickets ahead of time. Now I am trying to decide what beach cottage we will stay at in February. I need a few bright stars to look for on a cloudy day.