MD Anderson

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?!

The Mayo Clinic

I typically turn to “Dr Google” when I have a question and if it’s medical related, one of the first results is usually the Mayo Clinic. I find their site quite helpful in laying out information and turn to it often. So when I heard it was a top cancer hospital, I was excited to visit them. Their campus is massive but their check-in process is quick and everyone is quite friendly.

We learned a lot today. It’s interesting to hear the perspectives on my disease and what the next steps are. This was the last visit we had planned and although I totally slacked on uploading my recent documents (oops, thankfully they are working to get them!), it could not have come at a better time with my recent progression. We talked for well over an hour and the doctor was wonderful and very kind. She even gave me tips on how to organize my records!

We talked a lot about trials and some of the trials that are out there now. Immunotherapy is the big topic of discussion lately and a lot of them focus on triple negative breast cancer. Many of them also are specific to a particular genetic marker. 

After I asked my doctor about my skin two weeks ago, they requested my brain tumor to be sent off for additional genetic testing. This testing will indicate what specific markers my tumor has, what would potentially fight off those markers AND what centers have clinical trials open for them. That being said, I can make a decision today about a clinical trial but it would be TN only, not a targeted therapy specific to my markers. So it makes sense for me to wait. I was advised it takes 2 – 3 weeks and it’s been 2 so the test should be back soon.

I anticipate progression while waiting. One of my questions was whether I should continue Xeloda because it may be working in other areas. She agreed that is is possible but one of the concerns that oncologists have when cancer grows despite treatment is that the treatment (Xeloda) may actually be feeding my cancer and helping it to grow. No thanks.

I also cancelled my scans for tomorrow. I learned that the scans are not necessary for trial assessment but also that trials require that I have scans within a certain time frame of beginning, which is typically a week or two. No reason to expose myself to additional radiation. I also learned that the Xgeva (which I’ll take forever because of my bones, from what I understand) can potentially cause me to light up like crazy because it is going to work on my bones. This would cause a false positive result, which I certainly don’t want. I was also advised that my bones have holes in them from the cancer, so I need to be careful  (especially with little man) because I can potentially break a bone doing something as simple as catching Jacob. Yikes.

We also talked a lot about quality of life and what that means with different treatment options. I think it’s an important conversation to have no matter what.

I know we learned more but that’s all for now. I’m tired and there’s more to come. No treatment makes me nervous but I also think it’s important to have all the information before making a decision, and that includes my genetic markers. 

Today was a really good day of learning and I’m so glad for the visit! 💚

Memorial Sloan Kettering

A week ago today, we ventured downtown to Manhattan to the Breast Care Center of Memorial Sloan Kettering. The building sat on a non-descript corner and didn’t boast its name so one could easily walk by it. Our little man ventured off to the zoo with family and Joe & I made our way inside.

As the #2 cancer hospital in the United States, our expectations were high. I wasn’t fitted with a wristband or a GPS tracker like the other centers and it wasn’t quite as “high tech” in terms of the center itself but they did not disappoint. I filled out paperwork and was sent to a room to wait for the doctor. Once he arrived, he went over my history and I filled in any holes that he was missing and then a brief medical exam was conducted. He then left while Joe helped bandage me back up and we got comfortable to begin our conversation.

We discussed my current course of treatment and that it will be indefinite until it stops working, which he supported. At MSK they typically do 7 days on and 7 days off of Xeloda instead of 14/7, like I am doing. He expressed that I have that option available to me in lieu of a reduction in dosage, so that was good to hear. We discussed the next “standard” treatment, which would likely be IV chemo (Taxol, a sister to Taxotere that I had last year). The chemo wouldn’t be as intense as the 4 medicines that I had last year but it is IV chemo so I would lose my hair and I’d have to go weekly, among other things.

Next, he broke down the 3 different therapies that are available outside of standard treatment – Molecular Therapy, Immunotherapy and Hormone Therapy.

The Molecular Therapy is something that I am already being tested for since I am having the Oncopanel done through Dana Farber. This test typically takes 2 – 3 months. It’s also something MSK would have done as well and they are just as anxious for the results. Basically, the Oncopanel is taking slices of my actual cancer and testing it for all of the genetic mutations available. Of course, there could be hundreds of mutations but only a few handfuls of treatment options. In the future though, more options could become available based on the mutations. Once my actual genetic mutations are determined, there is the potential to target my actual cancer at the molecular level.

The Immunotherapy is something that I have read a lot about and also something that Moffitt had offered up in terms of a trial available. It does just what its name suggests. It works to boost up your immune system so that it is strong enough to fight off or attack the cancer on its own, as if it were a virus or infections. It wasn’t MSK’s first pick for my situation since the responses have been mixed, however for Triple Negative (TN) breast cancer like mine, the cancer seems to be receptive.

Next is hormone therapy. So this is where things were interesting. I have been “dismissing” hormone therapy because I am TN. Well, apparently there is also something called an androgren receptor. It is produced in both men and women but primarily men for the purpose of hormones such as testosterone. It is similar to estrogen and is actually a pre-estrogen receptor. Only 20% of breast cancers have this particular receptor but there are trials available that they are able to target this particular receptor. They actually would be able to hit the cancer twice with hormone and molecular therapies. While I am expected to be negative, my cancer is being tested for this particular receptor. MSK said that if there was ever a reason to pick up and move, it would be if I was androgen receptor positive. Crazy, right? Now that being said, I would continue on my current standard treatment plan because we know that it is working right now. It’s all a discussion of what comes next, once the Xeloda stops working.

One of the questions that I had, which he wanted to discuss proactively, was around my HER2+ status changing to TN. I’m interested in hearing the different perspectives on this. I know that we will never know for sure what happened, but I do agree with his answer making the most sense so far. Basically, a tumor is made up on millions of copies of a cell. So when a biopsy is done, a portion of that tumor is taken and analyzed to determine the different hormone receptors. At some point, my tumor didn’t like that it was being killed off by chemo last year. So a portion of the tumor changed or adapted to “fight” the chemo. It began to morph away from the HER2+ status and into TN. Once it realized that it was growing stronger as TN, the entire tumor began to change into that and eliminated the HER2+ status entirely.

The reason that I feel strongly that this is what happened to me, is because I can pinpoint the treatment that I felt like it started to change. I had 6 total chemo treatments last year. My first treatment sucked like the doctor said it would but my second treatment was significantly worse, as anticipated. I remember being concerned about my third treatment because of how horrible my second treatment was and yet, it was “better”. My third treatment (and subsequent treatments) was similar to my first and not my second treatments. So I *think* that it was during that time that my tumor started to morph. Obviously we will never know for sure, but it makes the most sense to me.

I also asked about dietary changes and if there was anything that I should do differently in terms of helping to fight off the cancer. His response intrigued me. He brought up sugar, since that is something that is often discussed as helping cancer to grow. Cancer is a smart beast, as we are learning. If it requires sugar to grow, it is going to find a way to create its own. We can cut out every drop of sugar from our diet and yet if cancer requires sugar, it will find a way to make its own and continue to grow. Interesting, right? Now, I’m not going to change my own habits because I feel better eating the way that I do now (plant based) but I think his logic is on point…if there’s a will, there’s a way – even for cancer!

The doctor also shared that he feels there is a lot in genetics that we have not yet discovered and that most, if not all, cancers are likely based on some form of genetics that we have yet to discover.

Needless to say, this visit to MSK was amazing. We learned a lot, the doctor explained things in a way that was easy to understand and he offered up information that we didn’t even know we needed. I am anxious for the results of the Oncopanel and the androgen receptor tests.

Next up is Emory in Atlanta. Although these trips to the different centers are exhausting and expensive, they are beyond worth it. Each center that we visit provides a different level of insight and performs a different test than any of the other centers. While I’m continuing with my standard treatment currently, we are learning more about the intricacies of my cancer and what’s next in terms of treatment options. Each visit is completely worth it!