I’ve never seen such a massive center. Having visited quite a few cancer centers in the last few months, I’ve seen my fair share of buildings. This one was massive. I was in the Mays Clinic building and at one point, I had to walk to the main building. I used the sky bridge – which takes you over traffic outside – and I kid-you-not, it took me at least 10 minutes just to walk the bridge. There’s even a shuttle to take you across! It was very nice. Anyway…
I liked this doctor a lot. A young gentleman with a toddler himself, he enjoyed chatting with Jacob and was very candid with me. I enjoy candid when it comes to cancer. I need it.
We talked about my visits with the different centers, which he very much supports, and he said something that I thought very highly of. When I mentioned what the other the centers had said (clinical trials are the way to go), I also stated that I did not make a decision yet because they are the number one cancer hospital. He looked me in the eye and said that it isn’t the center and status so much as the trials available. Are the trials something to get excited about? Then go for it.
So they do have one trial (potentially two) for me. It is an immunotherapy trial (I am very certain it’s the same trial that Sloan wanted to test me for but I put that on hold). It is “promising” but not exciting, in his words. The other trial is not quite as promising for me (PARP indicator, which is a targeted therapy, currently used on BRCA positive patients, but may work on TN without that mutation) but an option nonetheless. Immunotherapy is showing great promise in other cancers but hasn’t had significant progress with breast cancer yet. This trial is still in its early stages (Phase 1) and because I am triple negative, immunotherapy has the potential to work for me.
I expressed my hesitation with a Phase 1 trial (still determining dose toxicity, side effects, etc) and he agreed but said not to be deterred simply because it’s a P1 trial. Most times, they have been proven to work in other cancers and they have reason to believe that it would work on the one being tested on (in this case, triple negative breast cancer). So it is not necessarily a first on humans drug (though that is certainly a question to ask). This particular drug also pays a small travel related expense, which I understand to be extremely rare. It’s also weekly chemo initially, so relocation would be likely…assuming a strong response (big assumption and hope there!). It also is worth mentioning that trials provide access to drugs that are not FDA approved. So if they are in a trial, there is reason to believe that they are “good” drugs with the potential to target cancer. I wouldn’t have access to these drugs if I did not participate in a trial. There is also the potential that the drug would not work, which would be a risk and a reason to stop a trial. Regular blood work, scans and doctor/research coordinator visits are required aside from actual treatment. Trials are labor-intensive.
The doctor also mentioned that I should not have started Xeloda if I want to get on a trial soon (I do) because of the wash out period. He also said that he would not have necessarily stopped Xeloda when I did because of skin progression. Yes, it’s progressing and a systemic therapy is required, however it is not likely 100% progression and since it is working great internally, he likely would have kept me on it longer. Interesting, right?
Side note – I am staying on it for now, until I know what trial that I want and what the wash out period is. This will also give me time to prepare for wherever the trial is located.
The doctor had a lot of great advice and comments. One thing that makes me incredibly joyful is that he said I am in the infancy of my treatment regimen. He rattled off many standard of care treatments for my cancer and said that any of those are all viable options when I am ready (aside from trials). I cannot express how happy I am to hear that. I had thought that my standard treatments were only 2 IV chemo after trials and am so relieved to know that I have many options left. Many of those are IV chemo, however they are there and ready when I am.
We talked at length about quality of life. I don’t talk about it a lot here, however it is a conversation had at home often and something that doesn’t leave my mind. Many of these trials have unknown side effects (particularly P1), as well as the potential for significant travel expense. In his words, this is not something to go bankrupt for and the quality of life gained from continued treatment is important to recognize.
Going through chemo initially last year, I had obvious down days (weeks, really). I fought through to enjoy the good weeks. After surgery, life slowly returned to a relative normal while I got used to long term side effects. As I continue down this path of life-long treatment, I am beginning to recognize my new self. It’s harder to get up from bed, often a sit to get my head straight and stretch my body so it doesn’t ache is required. Stairs make me more tired and winded than ever before. Joe helps me up when I squat or sit at Jacob’s level. I’m tired most often. I am still healing from radiation and the pain that I have from the open wound is not like anything I have felt before. It hurts, continuously, and often keeps me up on nights like this. My feet ache more often than I would like and I have stomach pains after most meals that sometimes require me to sit still until they go away. I don’t share these side effects because I want to make a spectacle. I am simply sharing my new normal. Things that didn’t bother me before but sneak up on me now, whether because of treatment or metastatic disease. The idea of quality of life is very real to me and I understand why he feels the discussion must be had. There may come a point when treatment becomes worse than the reward.
So for now, I will embrace my sore feet and aching body and continue on with life. I will enjoy these days that I am blessed with and not roll my eyes and push off the tiny hand that is covering half my neck (along with the little body snuggled up against me in slumber).
This visit was informative and I am glad that it was possible. I am meeting with the clinical trial team at Emory on Tuesday as well. Since we were headed there for Thanksgiving, we are going a day early to meet with them and discuss trials. The doctor at MD Anderson is anxious to hear what trials I may qualify for there as well. I plan to share with him what I learn and look forward to his honest assessment and recommendation, as well as the doctor’s at Emory who I very much liked as well.
I know there is more to share somewhere in my head but that’s all I can think of for now. Saturday we head to visit Waco, which I am crazy excited about. Who doesn’t love Fixer Upper?!