Sunday, 9 April 2016.
Throughout my treatment for ALL, I was enrolled in a clinical trial. This was a decision we made early on, before my treatment even started. With everything on my mind at the time, it was extremely confusing to figure out what I needed to know about being on a trial. I thought it would be experimental treatments and would therefore not be covered by my insurance. Thanks to my physician, Dr. Quintana, and the pediatric oncologist who followed my case, Dr. Winter, they were able to explain it all to me after probably repeating themselves about a dozen times.
Being on a clinical trial was not experimental at all, in fact it was actually a standard of care. So it was fully covered by insurance. Once enrolled, you go through the randomization process. This is computer generated and I would be assigned to one of three treatment ARMs. We also had a fear that I would be enrolled in the ‘placebo’ ARM – well there is no such thing. But I think it’s natural for patients to want to be enrolled in the best possible treatment plan for them.
The three possibilities included: Standard, Standard ARM I, and Standard ARM II. The randomization process is necessary because if your doctor had a choice, of course they would enroll you in the program they thought would be best and most successful. But one of the most important reasons for enrolling in a trial is that the results and information will be used to help future patients. When that sunk in for me it made all the sense in the world. But it probably took, like I said about a dozen explanations.
So my results came out to be Standard ARM I – what that meant was that I would receive the standard treatment for ALL with one additional pediatric chemotherapy added in a two stages during the protocol. Standard ARM II would have included two additional chemotherapies. I was happy that I ended up landing somewhere in the middle.
One of the biggest benefits of being on a trial is that there are so many eyes on the patient’s medical records. Doctors, nurse practitioners, nurses, researchers and clinical trial coordinators. They are all watching and making sure that the patient is following the trial to the letter of the law. This is beneficial, because unlike some protocols that are fairly straightforward, mine was extremely complicated. I have quite honestly blocked a lot of the memories out because I was at the Cancer Center or inpatient at UNMH so frequently due to the complex treatment. If my doctor ever had a question about how to proceed if my counts were too low (it was rare that she had questions), she would just call her contact with the clinical trial and they would know exactly what to do. It was a truly incredible process and I learned a lot about something I never thought I would need to know.
I’m explaining all of this as a lead up to my topic of discussion for this post. Throughout the protocol I was required to get several MRIs. This was necessary so that they could track how my bones (particularly hip, knee, and ankle joints) were handling the medications – I received high doses of steroids in addition to the chemo meds over the past two and a half years.
I went in on Easter Sunday for my final MRI and I received the results on April 1st. My hips and ankles look great, however my knees show a significant amount of osteonecrosis. This was not good news for me. Although it is more than expected for this to happen and I consider it a small price to pay to be alive; I was nevertheless sad to hear those results. I don’t have a lot of pain in my knees, but they do feel stiff – I can only describe it as a small amount of bone pain, what I imagine it feels like when knees start aging naturally.
My little ray of hope for my knees however, is a surgery that can be done. Osteonecrosis occurs (from what I understand) from the steroids creating inflammation and pressure within the bone. The physiology of how this happens leads to blood flow being cut off from the bone marrow. Without that blood flow, all of the things that blood delivers are cut off and necrosis occurs.
My dad researched all of this on my behalf and read about this surgery. It is minimally invasive and it sounds like they relieve the pressure that’s been created from the steroids. The release of that pressure alone can significantly decrease the amount of pain in the knee. Then they remove a small amount of bone, and the idea is that will allow new blood vessels to form which will bring all of the good stuff to the bone and will result in healing the bone. I think the success rate is about 70% which to me is a very positive number.
So I will keep you updated on how this little part of my journey goes.
Take care and have a wonderful week ❤