Hi friends! Just wanted to post a update about my new clinical trial for those asking 🙂 Since my last (less than ideal) scans on July 27th, we finally have a new plan of action. (Waiting for a new treatment plan is usually one of the hardest parts.) I had another liver biopsy in early August. (If you’ve read my previous blogs, “Iiver biopsy” and “prison yard shanking” are used interchangeably.) I needed the latest liver biopsy to determine if the cancer was still triple negative, check the prolific index (I’ll explain that in a minute), and to check for any gene mutations the doctors may be able to target. As expected, my cancer is still triple negative. (If you’re wondering, metastatic breast cancer can morph and change inside your body apparently.) Regarding the prolific index, from what I understand, the “prolific index” refers to the rate at which the cancer cells are dividing and spreading. (Basically, what kind of unwanted “rave” do we have going on in my liver at the moment.) I was told that most metastatic breast cancer has a prolific index of about 10-15%. A year ago in August of 2020, my prolific index was 50%, which is pretty aggressive and rude. A year later in August of 2021, my prolific index just came back at 85%……ummm excuse me? That percentage seems offensive, ridiculous, and way too aggressive for my liking. But it is what it is. My doctor has a way of telling me the truth but not making me feel hopeless, which is a hard balance I imagine. I appreciated the fact that my doctor said “well you know, I’ll take a high prolific index Holly because sometimes those kinds of cancer cells are easier to kill.” GOOD. Because I’m not okay with the current liver “rave” and I’m ready to shut this shit down. Please and thank you.
So, about the new trial. You might remember when this cancer thing started 3 years ago, I jokingly called myself “the cancer unicorn?” (Because really, what are the odds of getting diagnosed with stage IV TNBC 6 months before my wedding….at 34 years old?) Surely the odds are slim. Anyway, the unicorn theme really stuck with my friends and family, apparently for good reason.
As it turns out, despite not having any of the normal hormone receptors or gene mutations they could target with treatment (like BRCA), I do have a very rare gene “amplification”. I honestly have no idea what that means scientifically at this point. I do know that triple negative breast cancer is rare (making up only about 10-15% compared to other the “hormone receptive” types of breast cancer). So, within that triple negative slice, only about 10% of those women have the FGFR2 gene amplification. That’s what I have. #UnicornStatus
Anyway, about my new clinical trial! This trial is targeting the FGFR2 gene amplification in hopes the gene amplification is what’s driving my cancer. The trial is called “TAS-120” and the drug is called “Taiho”. The trial currently has “branches” in several locations around the country, but my “branch” is in Dallas. I’ve been on the trial for 3 weeks. I have 5 more weeks until scans (then we will know if it’s working). From what I understand, there won’t be any doubt if it’s working or not. It will probably work really well or not at all. So that’s a little nerve racking. However, this is where faith comes into the equation.
I get asked a lot “how are you doing this and staying positive?” I was thinking about that question and for me, the key to fighting this disease comes in the form of faith, in 4 aspects.
1.) Faith in the plan God has for my life.
2.) Faith in the medical team that I’ve chosen.
3.) Faith in myself to do whatever it takes.
4.) Faith in the amazing people in my life who continue to support Mark and I in so many ways.
My list of “Four Faiths” may be an over simplification. However, despite the amount of logistical hurdles, emotional turmoil, and scientific complexity that my journey entails, most situations and issues I encounter fit into one (or more) of those 4 categories. (And if I feel like I’m stuck….I start back and #1 and go from there).
I know I’ll get texts and messages about the details of the trial, so I’ll cover some FAQ’s for the people who want to know.❤️
Question: Where is this trial?
Answer: Dallas, Texas (However, as I mentioned, there are several branches of this trial all over the country.) I believe they have the trial in Houston, Phoenix, and Boston to name a few.
Question: Is this IV chemo?
Answer: NO! I’m thrilled that this chemo/treatment is in pill form. This means my body, mind, (and bone marrow) will at LEAST get a little break for the next 5 weeks. (Hopefully longer if it works!🙏). Praise GOD for a break. My body was really beat down from 11 months of the Cisplatin/Romidespin/Opdivo chemo regimen. My bone marrow was getting to the point where it couldn’t recover between treatments…which was scary for me. For the record, I always prefer #ThePill over #ThePole. (Talking about the CHEMO pole).
Question: How many pills do you take?
Answer: I take 5 pills per day at the same time every day. I have to fast two hours before I take the medication and 1 hour after. Phone alarms are key.
Question: Are there only one type of pills?
Answer: Im taking two types of pills while I’m on this trial. I’ll explain. There is only type of pill in the actual trial. However, I have to take an additional medication (Sevelamer) to regulate the phosphorus levels in my body. I take two 800mg Sevelamer tablets (with food) 3 times a day. (Yes, 4,800mg of this stuff a day.) I’m taking the Sevelamer is because the trial drug causes very high phosphorus levels in my body. (After being on the trial drug 2 days my phosphorus was already extremely high.) Why is high phosphorus a problem? Good question. I’ve never heard or thought about phosphorus in my life by the way. Apparently, too much phosphorus will bind to the calcium in your body and drain it out….which can lead to a number of serious complications. There are also risks of heart disease when you have too much phosphorus. There are also heart risks with the chemo pills/trial drug I’m on, which is why they gave me an EKG two hours after the first dose of the pills. So, between fasting for the chemo pills, but then trying to eat 3 times a day to take the other pills…..I’ve really had to stick to a schedule. Praise God for phone alarms. I’m not used to eating in the morning….I still don’t enjoy it, but I’m getting used to it and I’ll take that ANY day over IV chemo. My in laws were always so sweet about this issue…. but I could tell it made them cringe a little when I told them I don’t eat breakfast haha.) I’m lucky that I grew up with loving parents (who did feed me breakfast I promise) and now I have an extra set of parents who love me unconditionally. (Love you Barbara and John! You’ll be happy to know I’m now eating breakfast every day!) 🥰😁
Question: Do you have to be on a special diet?
Answer: Oh yeah. I have to be on a “low phosphorus diet.” (Less than 800mg a day). I was initially given a one page list of low and high phosphorus foods. I felt like the list was strange to say the least and needed to be more extensive. I immediately sent this list to my friend Shari because I knew she’d see the humor in it. Jellybeans anyone??🤦🏻♀️
As a result, I contacted the nutritionist with the cancer cancer to see if I could get more guidance on the issue. The internet has conflicting information, as expected. The nutritionist sent me this list (below) to offer more guidance.
She also sent me Link to Low and High Phosphorus Foods. (For those that are curious). I still found some contradictory information even between the second list and the link above.
Note, I’m supposed to be on a *LOW phosphorus diet. Since my normal (healthy) diet contains a lot of high phosphorus foods, this has been an adjustment. It seems like most food with protein is at least in the moderate category. Overall I just want to do the best I can to have a healthy diet within these restrictions. Mark has been really helpful. (He cooks for me a lot.) He still eats things I can’t have because any normal person wouldn’t need to follow this diet. But for the most part….following a plant based diet is the best option for me since the phosphorus in plant sources isn’t absorbed as much as phosphorus from meat sources. (According to my research).
You’d think the pro version of an app like MyFitnessPal would track that sort of thing right? Wrong. The only app I could find is called “My Healthy Kidney” for people tracking phosphorus related to late stage kidney failure. Lovely. Regardless of the traditional use of the app, it sort of works for my purposes. I say “sort of” because the app is SO SLOW and doesn’t recognize a lot of foods. I need to find a better app or way to track this honestly. I can’t stand a slow app. It feels like I’m waiting on dial up internet! 😉
After being on the diet my first week my labs were good. However, the second week labs showed that my phosphorus was high. (We took a vacation for the first time in 18 months, so I was having trouble getting the right food at the right time). Now that I’ve buckled sown and finished week 3, hopefully my low phosphorus diet combined with the medication will do the trick. I get labs tomorrow for that. Wow, I’m sick of typing the word “phosphorus” so I’m sure you’re sick of reading it. But- if you guys find any good literature or resources on the topic, I’m all ears. Moving on.
Question: Do you have to live in Dallas?
Answer: My gut reaction to this question is “let’s not get the cart before the horse.”😉 I need to make sure this treatment is going to work first (remember, 5 more weeks until my first scans on this trial). For the first month of the trial, I do need to be in Dallas quite a bit, then after that the visits are much less. It seems like this trial has a LOT more freedom than my last trial for SURE. Lord, please please please let this work. I would love to have my life back! My eyes are welling with tears at the thought of having a more normal life again. (Not to mention having a break from the constant nausea and vomiting I had on the last trial.) AND hello… being able to travel?! The stuff dreams are made of. Moreover, not being hooked up to a chemo pole for 6-8 hours at a time sounds fantastic.
Question: So you’re not going to be in Kansas City anymore?
Answer: No, other than getting a U-Haul and moving the things we have in Kansas City back to Baton Rouge. (That’s been a fun little task to coordinate and Mark is REALLY looking forward to the moving part😉).
So, the Kansas City chapter of my life is closed for now. I owe a huge thank you to my AMAZING Kansas City friends (Mary and Jay Desch, Stacy, and Linabelle Finnegan and her family) and the medical team at K.U. Thank you for helping Mark and I get through the last 11 months!❤️ We couldn’t have done it without you guys.
Question: What are the side effects?
Answer: I’ve only been on this medication 3 weeks, so I hate to say “this is great” only for the pills to be cumulative, and tougher as time passes. However, I’m cautiously optimistic so far! Fatigue is the main thing I’m experiencing so far- which is like going to a 5 star resort in comparison to endless nausea and vomiting. Example: spa day vs root canal.
Will you lose your hair on this trial?
I don’t **think I will loose my hair on this treatment! I’m trying not to get TOO excited about keeping my hair at the moment, because the backup plan if this doesn’t work in 6 weeks is traditional IV chemo (Trodelvey). Unfortunately, loosing my hair is pretty much a guarantee with that drug. But for now, I’m going to enjoy every minute of the next 6 weeks!
How were your latest scans?
Apologies for the delay on this topic. It’s just a subject I don’t enjoy thinking about it. Anyway, I had scans about 3 weeks ago. Since I wasn’t on treatment the last 3-4 weeks before scans getting the trial in place, at least 3 liver lesions grew in size and a new one popped up. I couldn’t be on any type of treatment before the trial but you need a “washing out” period before the clinical trial begins (that’s standard). Basically there was growth but we knew there would be because I wasn’t on treatment. I’ll try to write more about the scans next time, but for now, I don’t want to focus on it.
Do you have to take the pills at the hospital?
I only had to take the first dose in front of the clinical trial coordinator. But I do have to turn in the empty pill packages? I assume there’s a reason for that.
How is Mark doing with all of this?
One more thing I’ll mention is that Mark had a little health SNAFU last week. We were in California (I mentioned this earlier…but our first vacation in 18 months is a big win!) Anyway, while we were sitting down eating I felt the weight of Mark’s body on me (I was sitting next to him). His eyes were open but he wasn’t talking. I screamed for someone to call 911 (thank you Meg and everyone that rushed over to help). My friend Wendy (an ER doctor) was there with us and got him on the floor right away. As soon as he laid down he started sweating a lot, his color returned, and he was awake and answering questions. The paramedics came and took his blood pressure, checked his sugar, etc. everything was normal. Because of his medical history they wanted to take him in the ambulance to check him out further. (Mark had a pulmonary embolism and 2 cardiac arrests in June of 2020).
The paramedics gave us the option at that point if we wanted to go to the ER. I wasn’t comfortable not going to the hospital given his history. They did bloodwork, EKG, and a CT scan just to be safe (everything was normal, thank God). He’s on blood thinners so he could have easily just been dehydrated. He wasn’t drinking a lot of alcohol or being irresponsible by any means. But it was VERY hot where we were and we were busy that morning and all week….so he just forgot to hydrate. I’m glad we took the more cautious route and he saw his cardiologist a couple of days ago. Everything checked out and there’s no cause for concern. Amen! (The official diagnosis was a “vasovagal syncope event” for those asking). I’ve known Mark for 7 years and during that time he’s only had ONE medical issue and it was a BIG one. When he slumped over and wasn’t talking it felt like that terrible night in June all over again. (Traumatic AF). Fortunately, by the time we got to the hospital this seemed like an entirely different situation. Thank the LORD. Also keep in mind I’m viewing the event from a trauma lens based on what happened last year- not a medical lens. (But all of the doctors he has seen are looking at it from a medical lens). Mark is much more private than I am, so he didn’t want to make a big deal about it and asked me not to say anything until we got home and he saw his doctor. (I asked him if I could blog about this and got the approval for the record). Everything happened so fast and by the time Wendy and I picked him up from the ER, we were all exhausted. (They wouldn’t let me be with him in the ER or the waiting room because of COVID….you can imagine how pleased I was about that.) Anyway, after getting fluids at the hospital, he felt completely fine the following day. Things like that just remind me how fragile life is and how much I love and adore my husband. Now, if we could just have some downtime without any more medical SNAFU’s that would be wonderful.😊
Here are some other questions I’ve been getting:
Questions: What you do at the hospital for the trial? Are you going back and forth? Is Mark with you? Where are you right now? Why can’t you just get your labs in Baton Rouge? Did the hurricane hit your house in Baton Rouge? Do you still have the cats?
I promise to answer these next time, but for now, I’m going to take a break😊❤️ (Our house is okay as far as I know btw).
Anyway, other than a few hours at the ER, the trip was amazing and exactly what we needed. I have so many fun stories and pictures to share when I have some time. Here’s a few for now🤍
Anyway, I hope this blog helps answer some of your questions. So many sweet people have told me that they start getting nervous when I haven’t blogged in awhile. (I’m honestly touched that people care). Between work, treatment (and trying to have a life) sometimes it’s hard for me to find the time to sit down and blog. I have to be in the mood honestly. Here’s a possible solution: follow me on Instagram (Username @ HollyHollisStars) and if you’re on TikTok, follow me there too….but don’t judge!😉(Username @ HollyhStars).
Even if I haven’t blogged in awhile, you can usually catch an Instagram story, post, or a TikTok. I like to mix it up!
Side-note: My 20 year class reunion is coming up! (I went to a small school with VERY small class sizes- so we knew everyone in our class very well). If you’re reading this and graduated with me…you better be there!🤗 (I’m officially putting out the request for your presence). I haven’t been back to my high school since I graduated and I’m so excited I’ll have the chance to go.
One more request for my Baton Rouge friends. At some point on Sunday September 26th Mark and I will be transferring the contents of our Kansas City apartment to storage. We want to keep the few things we have in case I’m in a clinical that requires me to be away from home. I hate asking, but if you’re free that day and want to lend a hand, that would be great 🙂 Text me! It shouldn’t be too much. We just need to get it from the truck to the storage and can pull right up to the door.
As always thank you for the prayers, love, and support.
⭐️ Holly Hollis Stars⭐️