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
Out west in the truck