Experimentation Update

I’ve now been on the experimental combination of Piqray (alpelisib) and Kisquali (ribociclib) for an entire 28 day cycle and a handful of days. I missed some doses in the first cycle of Kisquali when I was hospitalized and in my efforts to figure out the best time to take both. No PET yet to determine how well this combination is working but we have still been following my tumor markers.

For me, my doctor checks the tumor markers with a test called CA27-29. What this test measures is the amount of a type of protein called MUC1 in the blood. I don’t fully understand how the level of this protein increases when the Mets are getting more active and I do realize that many doctors don’t follow tumor markers because they aren’t always reliable for all patients. For me, though, they’ve been on point every time for the past 3 years so I do watch trends pretty closely.

Back in August of 2019, when I had two new mets in my bones, my tumor markers had been steadily rising. When I started Piqray, they came down super fast (a fact we celebrated!) and remained low while the initial PET showed a mixed response. The markers had been steadily rising over the months between PET #1 on Piqray and PET #2 when we saw that the Mets were getting more metabolically active and lighting up on the PET. Not the direction we want them to go, which has been the source of a lot of anxiety recently.

Now that we added Kisquali, we’ve hit a plateau. My tumor markers have been within one or two points of each test for the last two months or so. Usually this means that the medication is at least stopping the new growth; at the same time, the fact that the markers aren’t dropping is still some cause for concern. My med onc is not concerned enough to do a PET scan earlier than June, especially since we’re limiting my doctor/clinic/hospital visits as much as humanly possible. So, for now, we wait.

Have I said enough how much I HATE to wait!?

The biggest side effect I’ve been dealing with on this combination has been nausea. Piqray caused a low level nausea that I could manage. It literally made me feel pregnant so all the usual adjustments for pregnancy (I was nauseous all through both of my pregnancies) worked ok. Contrary to the 60 pounds I gained with each pregnancy (don’t judge!), I’ve lost about 30 pounds since August. That means I currently weigh around what I weighed when I was in middle school. Not exactly what I expected! My appetite has been affected as well as having to adjust to a modified keto diet since I’m still trying to stick with a mostly raw vegan diet.

When we added Kisquali, the nausea turned into vomiting and I’ve had some trouble managing it. I started taking Piqray in the morning and Kisquali at night and that seemed to help. I’ve also realized that the third week of Kisquali when the toxicity of the drug is at its highest was miserable. I was on Ibrance for 2 years (same class of medication) and I had forgotten about how that last week before the break being that bad. My family reminded me that it was and so we’re watching that a little closer.

Some silver linings of this social distancing thing in the midst of this experiment …

1. I’m not as active first thing in the morning and I’ve not had to take as much pain medication. I’ve been able to nearly eliminate the oxy, which makes me so very happy! I still have a supply just in case and I’ve had to take it at times. I like being able to adjust some of my meds according to my activity level and how I’m feeling.
2. In addition to not being as active, I’m not climbing the stairs as much. This has to do with homeschooling and all of that but also that my husband and mom have been around all day to remind me to take the chair lift or allow them to help. My knee pain is pretty much gone and my hip pain is so much better.
3. Since I can’t go to our community pool to do my physical therapy exercises, I’ve been soaking in Epsom salts baths more often. The inflammation in my legs around the sites where the titanium rods were inserted are quite a bit better.
4. I really like the telemedicine option. No rushing to get to appointments, long waits in the waiting rooms or frustration with support staff. I get on the application and immediately talk directly to my doctor. Have I mentioned how much I hate waiting!?
5. Sweet family time.

Overall, I’d say that the experiment is going well. Challenging, definitely, but it will all be worth it when the PET in June shows a good response. Even if it doesn’t, my doctor and I have been talking about other options we have. I have a list of several clinics I’ll be consulting with as soon as travel bans are lifted. My doctor had already wanted me to fly up to Sloan Kettering to meet with a doctor she respects there. That’s on hold but I’ll make it happen when I can.

Despite all of the craziness of this quarantining and homeschooling and my husband working from home, I’ve found ways to engage with my communities. I’ve done some letter writing and I’ve sent many many cards out. I know more about Zoom and Microsoft Teams than I ever thought I would (and so do the kids!). Some days are more difficult than others, certainly; at the same time, we’re making the best of it and enjoying what we can. These are memories that we will never forget!!