WAITING AND ADVOCATING
Since my last blog, I’ve been doing lots of waiting.
Waiting on biopsy results. Waiting for doctors. Waiting for insurance.
Most importantly, waiting for answers about my new treatment plan.
This is what I know as of today:
There were some talks about having me go to the Mayo Clinic in Rochester, Minnesota or even transfer to a new hospital in Boston, Massachusetts to receive my CAR-T treatment. Because the treatment is so new, not many facilities perform it nor do many insurance companies cover it. There is a certain criteria which has to be met for hospitals, patients and insurance companies alike to be able to give the treatment.
Personally, I think this is a bit ridiculous. If there is a life saving treatment available for any type of disease, anywhere - anyone should be able to receive it. But what do I know about health insurance policies?
Anyways, I was told I will be the first patient to ever have CAR-T treatment performed at the Mayo Clinic in Phoenix which is apparently a big deal. This means they will be able to treat more patients with similar circumstances as mine in the future. If that means I have to be their sort of “guinea pig”, so be it. No one else should ever have to go through multiple rounds of chemotherapy if there is a better treatment available.
My team at Mayo has been amazing advocating on my behalf for this treatment to my insurance company. While being active duty in the military pretty much guarantees I get treated no matter the circumstances, CAR-T treatment will cost easily in excess of a million dollars and then some. You can imagine my insurance being a bit reluctant to just throw on the green light and say ‘Go for it!’
Nothing is easy about cancer, but knowing you have incredible insurance and a team that makes sure you get the care you need is a blessing. To say that I am grateful to have my medical expenses nearly 100% taken care of would be nothing but an understatement.
THE NEXT CHAPTER
My schedule for CAR-T isn’t finalized yet, but I have a pretty good idea of what the timeline will look like.
I will have my cells collected this Friday, August 17th using a process called leukapheresis. This is a four hour procedure which should be pretty easy. It’s basically like giving blood, except only certain components are harvested.
After my cells are collected, they will be sent off to be genetically modified into cancer killing, warrior cells. This process takes two to three weeks.
During the time I am waiting for the cells to be modified, I will most likely be having low dose, outpatient chemotherapy to keep the cancer under control.
Once the cells return, I will have to do an additional three days of inpatient, high dose conditioning chemotherapy. This is to prepare my body and help lower the number of other immune cells so the CAR T-cells have a better chance to get activated to fight the cancer. The dates for this are estimated to be September 5th through the 7th. After this short three days in the hospital, I would be able to return home for two days.
I would return to the hospital that next Monday, September 10th to be admitted for the process of reintroducing the cells into my body. This hospital stay would last roughly two weeks depending on how I respond to everything.
Some people have had serious side effects from this treatment, especially as the CAR T-cells multiply in the body to fight the cancer. Serious side effects can include very high fevers and dangerously low blood pressure in the days after it’s given. This is called cytokine release syndrome, or CRS. Other serious side effects include neurotoxicity or changes in the brain that cause confusion, seizures, or severe headaches. All of these side effects are why I will be staying in the hospital for a minimum of two weeks after the infusion.
The biopsy I had last week was to test the primary tumor in my chest for certain gene expressions for alternative treatment plans if CAR-T is unsuccessful. These treatments are called Brentuximab, which is a type of chemotherapy, and Keytruda, which is an immunotherapy. Hopefully I don’t need to use either of the two, but they are available if needed.
CAR-T is my last option of curative treatment. If this is unsuccessful, anything else would essentially just be keeping the cancer under control until, well….you know.
Let’s hope this works.
In the meantime, stay in touch, visit again and witness cancer through my lens and keyboard.
Until next time…