#sciencesunday – Avera Precision Oncology

It’s been several busy weeks (travel, hurricane, etc) so I’m just getting around to writing this now. Honestly, even though it’s been a few weeks my head is still spinning due to all the new information and all the decisions ahead of me.

First off, I was really impressed by both Avera and Dr. Leyland-Jones. My appointments went seamlessly, with little to no waiting and us leaving at a normal time. I really felt the “small-town cancer center with big-city brains” thing.

Dr. Leyland-Jones is a brilliant man who is passionate about curing cancer in his lifetime. After a year of hearing about him, I was pretty thrilled to finally meet him. I felt like we were on the same page immediately with our views on now to best attack my cancer. I’ll do bullet points of our discussion…

• I have seven mutations. One is Her2, which we have known about from the start. Seven is considered a medium mutational burden. Under six is low, 6-19 is medium, over 19 is high. He wants to run another test, but it sounds like immunotherapy would not be an ideal option for me as it tends to work best on high mutational burden cancers.
• There are drugs that he believes will target my mutations. Two are drugs already used for Her2 positive disease. One I took as part of a clinical trial years ago, one I’ve taken a similar drug to it. He believes the combo of those drugs, along with the third targeted therapy he’s recommending, will be much more effective than those drugs taken by themselves. The third drug is approved for other cancers but not breast cancer.
• Because of a recommended drug not being approved for breast cancer, I will need to work with a patient advocate to first appeal the inevitable denial and then, if they continue to deny, to appeal to the drug manufacturer directly. I have not yet heard of anyone being denied going through those channels, so hopefully it will work for me.
• He is going to check to see if my cancer has become resistant to hormone therapies. If so, he’ll change my therapy from a 12-week stomach shot+daily pill to monthly stomach shot+monthly butt shot.
• Since my original genomic testing was done more than a year and a half ago, my blood was taken for a liquid biopsy to see if any mutations have changed. I should be getting those results back soon and could change my treatment plans.

So where do we go from here?

• After coming off Evil Xeloda, I started on a treatment to tide me over for the time being. I’m on two targeted therapies and a traditional infusion chemo. This is almost identical to a treatment I had in 2014, but my regular oncologist, Dr. S, thinks after almost 3.5 years, I may be resensetized to the treatment.
• He may be right, as my bloodwork before starting this treatment was a little out of range (tumor marker and one liver enzyme) and are now normal, after just one treatment.
• I will have scans in a week and a half to see if the current treatment is working. If it is, we will have to decide whether to stay the course or switch to the Avera recommendations. My tumor burden still appears to be quite low, which is good, as there is less cancer to fight against.
• Since I’m on traditional infusion chemo again, my hair is falling out. I don’t care. I have bigger things to worry about.
• Dr. Leyland-Jones and Dr. S had a phone conversation and they are on the same page except for the off-label drug. Dr. S doesn’t feel right prescribing it when it hasn’t been tested in clinical trials. I see Dr S’s point. It can be dangerous to use these drugs in untested combination. I know one person who went to Avera who died suddenly even after having good scans, likely due to complications of her treatment. But with metastatic breast cancer, the phrase often used is, “it’s a marathon, not a sprint” with the idea of using gentler therapies, often just one or two at a time. Maybe that leads to a better quality of life, but that approach isn’t leading to patients living longer lives. The life expectancy is still around three years. That’s not a marathon, that’s barely a 5K.
• If the medical professionals involved can’t come to a consensus, I’ll have some tough decisions to make as far as where I want to be treated, how I want to be treated and who I want to be treated by. I find all my doctors to be smart, compassionate and I respect them all immensely as leaders in their field. Ultimately, the person who looks out the most for me is me and I have to do what I think is best.

On a lighter note, after the appointment in South Dakota, I went to Minneapolis to celebrate my uncle’s 70th with a bunch of my family. Then, not wanting to go back to Florida and face the aftermath of Irma, I spent a week with Younes in his truck. We took another trip out west and I saw more beautiful scenery and black bears.

The sign in Dr. Leyland-Jones’ office

Family fun

Out west in the truck

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#tbt – Fruit off the trees

Throughout my 26 months in Swaziland, there were two constants – I received, from my host families and community members, avocados from the trees in winter and mangoes from the trees in summer.

The avocados fueled many days out in the community. Somedays, I would formally make my lunchtime sandwich, scooping the fruit onto sliced bread I had brought from the sitolo, liberally sprinkling the mash with salt and pepper, topping with another piece of bread and wrapping the sandwich in one of my oft-rewashed and reused ziplock bags.

Often days, packing my lunch would be a much more hurried affair, shoving the loaf of bread, the whole avocado, salt and pepper shakers and a knife into my backi, where it took up residence with toilet paper (not provided anywhere in my village), notebooks full of ideas I would enthusiastically pitch that would never be implemented, an extra sweater in case I returned back when the sun was starting to go down, and my favorite water bottle. Those days, I would sink under the sparse shade of an acia tree, unpack my supplies, and make my sandwich, scooping out the remainder of the avocado to give to passing children as a snack.

It was crucial to pack a lunch in anticipation of a 8 or 9am meeting, because the meeting would only begin at noon or 1pm. I remember arriving at 10am for a 9am meeting once, having been delayed from leaving the homestead by the adorable antics of bosisi. The was no one at the location. “Did I miss it?” I wondered anxiously, before arriving at the most logical conclusion – I was the first one there.

Now mangos were eaten differently. They were not take-along snack food, as the mess would get all over my clothes and hands and I didn't want to waste the precious water I carried with me on cleaning myself of the sticky reside. No, mangos were to be eaten on my front stoop during a lazy morning or as a treat after a hot day.

When I returned to the US in 2012, craving the fruit that I had so enjoyed in Swaziland, I was comforted by the towering avocado and mango trees in my parent’s front yard. The trees supplied somewhat inconsistent harvests but when the fruit was good, it was delicious and brought back my many happy Swazi memories.

Then Irma roared through.

The thick branches that fueled not only my appetite, but kept a little part of Swaziland close to me, now lie in disarray on my parent’s driveway, the fallen fruit rotting away, as my family slowly makes our way back (due to lack of power, we extended our South Dakota/Minnesota trip and have been away several weeks).

We were lucky to be out of town when the hurricane hit and escape with little property damage. I know how lucky we are. But I’m still sad about those trees.

Avocado carnage

Belated #tbt – Jolly Irish companions

I am driving from Sioux Falls back to the Twin Cities with my parents (more on my appointment in my #sciencesunday post this weekend) and my parents are playing Irish folk music and “The Fields of Athenry" comes on. A memory comes back.

October 2011, I was on my post-Peace Corps six month trip through Africa and Europe. I had just arrived via bus to Dublin from Cork. I was excited to see Dublin because I had only been once during my study abroad semester back in 2005, and I had spent the entire weekend in two states – drunk and hungover. This time I was interested in seeing Dublin from a different perspective – i.e. not from the the bottom of a pint glass.

I left my luggage at the hostel and asked about someplace that served dinner and had live music. It was Sunday, so I was expecting a quiet night. I was pointed to a pub down the street. There I ate Shepard’s Pie as the musician set up. Two well-dressed couples in their late 40s-50s stumbled in, already more tanked than one would expect for a Sunday evening. They asked (slurred) if they could sit with me. They were VERY jolly, so of course I said yes. They sat down and revealed the source of their jolliness. They had just come from the baptism of their new grandchild. While I was cautious of getting college-era shitfaced, I of course joined them in a celebratory shot of whiskey in honor of the new baby.

The musician played a mix of traditional Irish ballads and American covers and we had a great time singing along and chatting. I even tolerated their advice on my love life. Irish people can be very blunt and direct in their opinions but they are some of most open and welcoming people I know.

After some hours, the evening ended with an encore from the musician – “The Fields of Athenry.” The couples got up, drunkingly slung their arms around my shoulders and we rocked and sang along to the music.

Six years later, I don't remember their names, but I do remember that night, I went to bed with my heart full.

#metsmonday – A followup

I wanted to follow up on my post from yesterday.

Improvements made in the treatment of breast cancer have gotten many patients to the point of NEAD or potentially cured. One breakthrough has been Herceptin, which changed Her2 positive breast cancer (which I have) from a death sentence far too often into arguably the most treatable form of breast cancer. Herceptin led way to other breakthroughs such as Kadcyla, the “super Herceptin” which combines Herceptin a chemo agent, and in trials now, a “super Kadcyla.” Now Herceptin wasn’t a miracle cure for me but I believe it has kept me alive. Her2 positive cancer before Herceptin often recurred and killed vey quickly. There was even a Lifetime movie about Herceptin.

I have two Her2 positive friends. D was diagnosed at Stage ll and after chemo, Herceptin, surgery, radiation and two years of hormone therapy, she appears to be in complete remission and is currently pregnant with her second child.

Now I believe my cancer was always nastier than D’s. We had such similar stats at diagnosis. Same cancer type, same age, similar family history. We both had large tumors and had chemo before surgery. Both we had two differences. While she had only one potential lymph node positive for cancer before chemo, I had a crapton – probably something like 10 – and they stretched into my Level 3 axillary area. After chemo, I had six nodes that were confirmed to have been positive at one point – two still had cancer in them and four were full of dead cancer cells. That indicates that my cancer was more mutated from the start. Then she had a 2mm residual tumor while I had a 16mm one. That indicates that I had a certain amount of resistance to initial therapy.

Then there’s my friend J. She was initially diagnosed early stage at 27 but was probably Stage IV from the start (some drama about an appearing and disappearing spot on the bone scan). She did early stage treatment and a few extras and the cancer stayed away for five years. She was rediagnosised with mets to the hip two years ago and her hip was in such bad shape she was going to have a hip replacement. She was put back on Herceptin along with the new targeted therapy Perjeta and her hip healed so well she didn’t need the replacement after all. I think she may well fall into the small percentage of Stage IV patients that are potentially cured.

So you have three different women with similar age, family histories, same cancer type, but very different journeys. I write this to illustrate how heterogeneous cancer is even among the same subtype. I would not recommend my two friends go outside of the standard of care unless they progress because going outside of the standard of care carries risks and why risk it if the standard of care works for you? In my case, I’m not on my way to living into old or even middle age (and believe me, I’d take middle age!) doing the standard of care. So it’s time to get more creative.

#sciencesunday – Precision medicine and the future of cancer treatment

I am writing this from up in the air. I am, with my parents, on my way to Sioux Falls, SD to visit Avera Precision Oncology.

I have been somewhat interested in precision oncology since my Stage lll diagnosis back in 2014. I had read about testing different chemo combinations on biopsy samples in a Petri dish. Although Petri dish results are not always the most reliable, it made sense to me, to figure out what chemos worked best for a person’s individual cancer instead of just shooting in the dark.

My interested continued when I read on a message board about a tumor mutation that made a patient more resistant to Herceptin, which was the miracle targeted therapy I was on. I printed out a copy of the article and brought it to my oncologist, who basically told me these mutations existed and they were a concern but they didn’t have the medical technology to eliminate those mutations yet. Basically, all we could do was treat me with standard of care and hope for the best.

After my metastatic diagnosis, I had genomic testing done on the brain tumors that were surgically removed. The results came back showing six mutations, not including Her2, but including the one I was originally worried about in 2014. I was glad to have the information but wasn’t given much guidance on what to do with it.

Over the past 18 months, I have been standing back and absorbing all the information I could get about tumor mutations. Last fall, Beth Caldwell brought to my attention a precision oncology clinic led by Dr Leyland-Jones. This clinic uses combination therapy to target multiple mutations at the same time and uses drugs off label. Basically, with my multiple mutations, if we just address one, the other ones will find a way to grow. So we need to find a way to target all the mutations.

I have Her2 positive cancer, which is very aggressive, yet has a lot of treatment options, including targeted therapies in the place of harsh chemo. I have standard invasive ducal carcinoma. But I’m not responding super well to the targeted therapies, most likely because of these mutations. I had three different targeted therapies for early-stage cancer and still progressed. Then I got nine months out of a fourth targeted therapy, but even adding the Evil Xeloda chemo to it didn’t make the drugs last me longer. I had mild progression. We switched to two targeted therapies along with an infusion chemo to tide me over until I get drug recommendations from Avera. They will probably take a blood biopsy to see if any mutations disappeared or new ones appeared. Then, we will probably need to fight to get the drugs approved as they are often off-label.

I believe we are in a critical time for cancer care and that precision medicine is the future of oncology. I’ve talked to some who have gotten to long-term No Evidence of Active Disease of the Avera protocol. Their overall response rate is pretty great considering that many of their patients are heavily pretreated. I’m not saying this will cure me, at least not for some years. Hell, it might not even work at all. But I do believe this is my best chance to turn my cancer into a chronic, manageable disease.