6 Qs with the MandaPanda

Manda’s self portraits while waiting to do the end of Week 6 breast MRI at UCSF

Interview with Brian Adkins

Edited by Danielle Farinacci

What do you want your friends & family to know about your journey this week?

There are a few things I want to highlight:

#1: Cancer Health Update

I’m 7 weeks into the first 12 week treatment in this clinical trial which is 2 chemo therapies & 1 immunotherapy. I have some hopeful news to report in that it looks like my body is trying to kill the cancer!

Through this clinical trial I am fortunate enough to have more periodic breast MRIs than if I did the standard FDA approved treatment: this is very comforting for me. The breast MRIs for the clinical trial show something called Functional Tumor Volume and this is one thing my doctor was excited about.

I had a Breast MRI the week before I started treatment (baseline), at the end of 3 weeks of treatment and then again at the end of 6 weeks (last week). The next one will be at the end of 12 weeks, I think. If the tumor feels like it is growing through physical examination over the next 6 weeks, then we may change up the plan. For now, the plan is to continue with this treatment.

Functional tumor volume is measured in cc/milliliters. Below are the measurements:

Baseline: 54.114

Week 3: 78.342

Week 6: 58.542

I’ve been sweatin’ it a bit since I got the end of Week 3 results back and the tumor was bigger both on the MRI and I could physically feel it dramatically bigger! My doctor told me after the week 3 MRI that sometimes tumors grow bigger before they shrink with immunotherapy and that we needed to wait until the end of Week 6 to see how things are going. She told me then that if it didn’t look responsive they would stop this treatment and probably begin another treatment that is more intense. I will have to do this more intense treatment called A+C or what patients refer to as “the red devil” anyways.

So, the first bit of good news is that the dramatic decrease from Week 3 to Week 6 in functional tumor volume “is a good sign that the body is trying to kill the cancer.” - Dr. Rugo

The second bit of good news is that the MRI in Week 6 “showed more dead tumor, or necrosis, which is also a good sign”. - Dr. Rugo

So, basically, the volume of the tumor is decreasing from Week 3 and the tumor is dying in the middle. It’s like I have an oval cancer donut in my left breast at the moment.

#2: I’ve been feeling pretty darn good physically and have had minimal side effects! 

I’m not laying around in bed all day; I’m not losing my hair (yet, at least); I’m not vomiting or having lots of diarrhea. I think it’s these clinical trial chemo pills that are making this treatment much easier to tolerate versus the infusion I would have received if I had gone with the standard treatment. Hopefully these chemo pills are the future of chemo!

The side effects I am experiencing are: fatigue, weight gain (from a steroid I take to help with nausea), a weird sunburn rash on my face/neck and chest I get every week the day or two after my infusion day (also from the steroid), and a little constipation (also from the drugs that help with nausea) and some nausea but totally manageable and has decreased over time.

#3. My family and I found out a few weeks ago that my mom’s cancer has come back.

This is difficult to process. The good thing here is there is a plan in place to beat that cancer back.

Luckily, it is very early and has not spread. She has multiple myeloma and actually participated in a clinical trial with UCSF a few years ago where they genetically modified her T-Cells and it sent her back into remission for a few years! She will start chemo in September when a new drug that will be approved by the FDA. Her doctor at UCSF is hopeful this will send her back into remission.

#4. I’ve been thinking a lot about liminal space and thinking a lot about the parallels of this cancer experience and everything in my life right now with the pilgrimage I walked in Spain back in 2006 called the Camino de Santiago. There is this in-betweenness I feel I’m in now with treatment and wondering if it’s going to work and how well it will work. I also think about my mom’s cancer and the upcoming treatment.  I’ve been exploring that same in-betweenness I felt while walking the Camino that I will write about separately. I am also exploring liminality visually through what I see around me and capturing it as photographs and videos that I will also share down the line.

#5. Thank you to all the friends and family that have been helping me out and sending me love! I am deeply grateful!!!

What are the new words have you learned this week?

Functional Tumor Volume: The size of a cancer measured by the amount of space taken up by the tumor. - National Cancer Institute

Necrosis: Refers to the death of living tissues - National Cancer Institute

What’s your rose - where you’re seeing beauty in the world, what inspires you?

-I attended the open studio for “Art for Recovery” this week at UCSF. I got to make some art and meet other people with cancer or who have had cancer!

-I’m continuing to work on “Hands that Care”, my photography project documenting all the hands that have been taking care of me. I will eventually share this as well.

-I’m working on a slide show of my current pilgrimage that I will share soon.

-I’ve been soaking up the friend and family medicine!

-I’ve been soaking up forest bathing, a simple pleasure I’ve rediscovered.

-I’ve found great comfort in water (being in it and around it)

What’s your thorn - what’s challenging you?

-Sometimes I have lower energy and I’m just working on reading my body and allowing it to rest when I feel I need it.

-I’m scared about feeling sick with this next round of chemo in the fall.

-I’m worried about my family and my friends as we move through this next period together. It’s going to be challenging but there is no other group of people I’d want to move through this with!

-Feeling like I’m not able to make enough time to spend with my loved ones.

What’s your bud - the thing that gives you hope?

-The good news from Dr. Rugo that she is encouraged by the recent MRI results.

-Making short term plans that I can look forward to. Like the fabulous trip I just took with my friend Danielle to Russian River with guest appearances from Oli and Heather!

-Day dreaming about what I’m going to do when I get to the other side of treatment, surgery & radiation.

-Spending quality time with my loved ones.

-Making art

-Feeling supported

What’s the best way your friends and family can help you this week?

-Ask me to go for a walk! I need to walk everyday and it’s easier doing it with someone else either in person or on the phone. :o)

-Send positive healing thoughts/energy/prayers towards myself and all my loved ones.

-Ask me if I want to do an art making session in person or on zoom. I want to make more time to make art.

-Ask me if I want to do a meditation session in person or on zoom. I want to meditate more.