The struggles dealing with the unknown of a disease that moves at its own pace, never gives you any sign of progression, and does not care how you feel about waiting is, you are at the mercy of the disease, ever watchful for an ominous sign or random pain easily attributable to one of many causes. As I prepare for my trip to MD Anderson at the end of the month, I have spent time researching the latest treatment regimen for High Risk Smoldering Multiple Myeloma and the protocols surrounding treatment before patients progress to an active state.
Search the Internet and you will find site after site telling you about trials in this or that phase and a list of acceptance criteria reminding me of the wishlist for a job opening
Among the options available are clinical trials. Search the Internet and you will find site after site telling you about trials in this or that phase and a list of acceptance criteria reminding me of the wishlist for a job opening. So what does all this mean and is this the right course moving forward for me?
Many Cancer research hospitals in the United States are now publishing findings following 3 years of trials showing early treatment of High Risk Smoldering Multiple Myeloma prolongs remission and survivability rates. Sounds really good to me! How do I know if trials or early treatment are the right path for me?
Let me place the obligatory disclaimer here. The information I am sharing in this blog is based on my research. It is imperative that you consult your doctors to determine if early treatment or clinical trials are the best option for your situation and diagnosis.
Your local Cancer hospital most likely has information to help you determine if you should consider a clinical trial. MD Anderson provides a guide https://www.mdanderson.org/documents/patients-and-family/diagnosis-and-treatment/treatment-options/clinical-trials-booklet.pdf helping patients to understand the decisions necessary before considering a clinical. How much do I have to pay? What does insurance cover? Will I have to go to the hospital more times for treatment? Will I receive real treatment or just a placibo? You should contact your local Oncologist or Cancer hospital for guidance.
Why would I want to be part of clinical trial you may ask? My life has demonstrated a long pattern of service to others and giving back to my community. What better way to give back to the Myeloma community than to offer myself for clinical research? I feel a calling to give back in any small way I can.
After completing my research, I found 2 trials for High Risk Smoldering Multiple Myeloma that I will ask about at my next visit. My doctor and MD Anderson will know if I qualify and if one of these trials is the right option for my situation. Last year, I asked about a clinical trial that seemed great but my doctor told me it was very risky and the patient they highlighted who went into remission almost died. As my situation is still very stable, I decided this was not best option for me.
As for early treatment, the best I can discern is your research hospital Oncologist is well aware of the current research trends so your questions about early treatment will not come as a surprise. The question is really about risk tolerance, both the patient and the doctor. Some doctors are prone to wait until the research is peer reviewed and there is clear consensus on the treatment protocols. Others ask the question, "why should I wait for the patient to show visible signs of active Myeloma or end organ damage?" Why wait if the patient is better able to tolerate the treatment protocol? I agree with this way of thinking.
How is the decision made? Can you just call the contact person for the trial you want to join and bang, you're in? I am sure this is not how these decisions are made. There are review boards that determine admittance into clinical trials based on very stringent criterion.
So how will I convince my doctor I should be treated early or join a clinical trial? Sadly, these decisions are not mine to make. I can discuss options with my doctor but only she will be able to order treatment for me or recommend me for a clinical trial. If I get a recommendation for a trial, I will be interviewed by the researcher running the trial where I will learn everything I need to know including how the trial is structured, how many cohorts (groups) they are working to populate, and the ultimate goal of the trial. Insurance coverage and costs associated with the trial will be disclosed including possible side effects and possibilities of serious reactions to treatment up to and including death.
After meeting with the clinical team running the trial, the decision to move forward is now mine to make. This is where I will be praying for discernment for the direction God would have me take.
So, I need your help. Do you know anyone or have you been part of a clinical trial? Please comment on this blog with details good or bad. As for my next steps, I trust God will guide my conversation with Dr. Patel at the end of the month. Whatever the decision, I am content in knowing God has this and I do not have to worry about the decisions that might soon be made. Either way, I will continue to choose to live through my cancer.