So I was debating on waiting to share this information until I had the full picture, but I decided to let you know what I know and then update you as I find out more. I saw my doc yesterday for the results of my latest CT and the news kind of sucks, to be honest. I now have several lesions on my spine. And by several I mean, like, at least 5 or so. I had one for a long time that showed resolved a few months ago. My doc showed me side by side of my June scan with this latest, and it's clear. They weren't there in June that we could see. Now I'll share with you what we discussed.
My doc told me that bone mets (that's what we in the know call metastases, or cancer that has spread from the original site, which is pretty much ALL of my cancer, you know, having no idea where it came from and all) are hard to gauge because sometimes it takes a bit to spot them on a scan. She said they may have been there for months, but we just now see them on the scan. So there is a possibility that they were there before I went on my current treatment, which was end of June. She also said bone mets can grow and stay for a long time, or they can grow and grow. We'll just have to wait and see.
We discussed next steps, including a clinical trial that I've now been approved for at Fox Chase. My doc got me approved before even letting me know about it, because she's awesome that way. On Monday, I found out from my doc at Penn that I would not qualify for the immunotherapy trial there, and was basically told it would be hard to get into any trial having an unknown primary. So Monday was not a good day. It's not easy hearing that, because they can't figure out where your cancer originated, you're pretty much going to be left out of possible life saving treatment. So while Wednesday did not bring good news, it did bring hope, which is what every cancer fighter needs to thrive. The clinical trial I've been approved for is a Phase I trial determining the safety of a hedgehog pathway blocker. Yes, hedgehog. Seriously. They can't come up with a better name? Hedgehog. Anyhoo, I did some research and it turns out this type of treatment has shown to be quite successful in certain cancers, such as basal cell carcinomas, but not very successful in most. Very few side effects, though, so there's that.
My other option is to stay on my current treatment since, from visual clues, it seems to be working. The rash on my torso is almost completely gone and my lymphedema in my legs seems to be going down ever so slightly. I'm now able to wear lower compression thigh high stockings on most days instead of highest compression full stockings, which is awesome. On days with a lot of walking, I'll need to wear my custom stockings, but it's nice not to feel like a pig in a blanket once in a while, especially since the full stockings push the fluid up to my abdomen and then I just feel horribly bloated and fat, not to mention uncomfortable. And funny looking, being the upper abdomen is all flabby and bloated and the lower abdomen is all flat. Stupid lymphedema.
So I chose plan B. I'm going to stay on my current treatment for another 2 rounds and then have another scan to see if things have changed. (BTW, these mets were the only issue on the scan, other than the effusions in my lungs, which we already knew, obviously.) In a few weeks, after vacation, I will have a biopsy done on the bone to see if we can get a good sample for further genetic testing. Hopefully there will be enough tissue from this biopsy that they can get a good sample and find out if there are any genetic mutations in the cancer. If so, that potentially opens up more clinical trials to me that are based on mutation instead of cancer type. So fingers crossed for that. Before agreeing to it (which I would have done anyway, to be honest), I asked my doc if it would hurt to get the bone biopsy, because I've heard they are incredibly painful, and she didn't answer right away. Of course, being the ridiculous Disney fan I am, my response was, "You hesitated." (If you don't know what movie that came from, you either don't have kids or you don't pay attention. Or both.) She laughed and said she didn't know because she'd never had one, but she thought they gave you not just a local anesthesia, but a twilight one as well, so I'm all like, "Done! Sign me up!" I'm a huge fan of twilight anesthesia, especially if it's Propofol, since you get the best rest while you're under. I know, it's the little things.
So that's how my Wednesday was. It's not the greatest news, but here's the thing, while I would prefer the cancer didn't spread at all, the fact that we have a chance for further testing gives me hope. The last time I had genetic testing done was over 2 years ago. A lot has changed in 2 years. My doc even uses a different company for testing now than she did 2 years ago, so that alone could show different results. Cancers also change over time, so we could find something different about it now that will allow us to treat it in a manner that would not have worked 2 years ago. Also, the cancer was already in my bone, so it's not a new spot. Just new lesions in the same place. I've said it all along, the goal is to keep it out of my organs. So far, that has been the case. I told my doc the plan has always been to keep going until they find better treatment. I've held up my end of the bargain, so now it's her turn. As she said, my disease has a survival rate of 6 months. Over 2 years later, I'm still thriving, and I have no intention of stopping.
So no negativity or sadness in any comments you may leave! I don't want to hear it! Just good thoughts and prayers and juju and anything else you want to throw at me!! And remember to take care of yourselves, have fun, enjoy life, and increase the amount of love in your lives. It's so short and so fragile, you don't want to regret anything.
xo, Lisa
Side note - We are going on vacation in a bit to Florida and I know some of you live in the area and were hoping to get together at some point. I'm going to be a party pooper a bit and make this vacation completely about the three of us. We're not there long and we have a lot planned between Disney and Universal and I want to make this vacation just for us without worrying about meet times or schedules. I hope you all understand. I'll catch you next time!!
