Now I'm Confused

Here’s a new term for you: Minimal Residual Disease, or MRD. During my May visit with Dr. Joudeh, he told me how pleased he was that my lab result numbers are so consistently good and about a fairly new test that is sometimes done with patients who have minimal residual disease or measurable residual disease. He told me that in some cases, physicians might suggest that it is possible for a patient to discontinue chemotherapy treatment, if he or she feels that the prognosis for long-term remission exists. I asked about this new test and how it’s conducted, and he explained it would require another bone marrow biopsy. Depending on the type of testing done, it’s supposed to show how many cancer cells remain in my bone marrow or blood. A negative test result means no cells were detected. A positive test indicates cancer was detected, and again, depending on the test used, it can indicate how many cells were found. Basically, it’s a tool that can help with determining if we’re on the right track with treatment. Remember, there is no cure for this cancer, and if you read enough about it, most of the literature is pretty grim. Most of it reads as though relapse is inevitable. With the treatment options available now, however, the chances of living longer are very good. Besides, I personally don’t believe that anything is inevitable.

After the visit, I started googling “minimal residual disease in multiple myeloma” to learn more about it. I found a lot of good information from what I consider to be reputable sites. I've included a short video in this post so you can check it out yourselves.

When I saw Dr. Joudeh last week on 16 June, the first thing that jumped out at me was that he was wearing a mask. They haven’t been doing that at the medical center since around last February, I think. It was because I had just recovered from a bout with Covid-19 a couple of weeks ago. (A side note I’ll drop right here: I have never subscribed to mask-wearing as an effective way to prevent the spread of anything, including Covid, unless it was the much-touted N95-type mask, which very few people, if any, wore.) That’s fine, I thought. He’s being extra cautious. Dr. Joudeh had contracted Covid earlier this year, I think, and ended up in the hospital with respiratory issues. My experience with it was more like a case of the flu with headache, body aches, fever, and finally, congestion and a cough. (It probably was the flu – ha!) At the time of this visit, I was asymptomatic, for the most part, but he told me he didn’t want me to have my Zometa infusion because my immune system was weakened, and I didn’t need to be back in the infusion suite with the other patients after having Covid so recently.

This is where the visit turned positively vexing. I asked Dr. Joudeh about the special tests he mentioned in our last visit that confirmed minimal residual disease.

“You told me that it might be possible to discontinue my chemo, if the test results confirmed minimal residual disease.”

“No,” he responded. “I didn’t say that. Your numbers are very good, but I feel you should continue taking your Revlimid at the lower dose.”

He went on to say that I should contact the Stephenson Cancer Center in Oklahoma City where I had my stem cell transplant and maybe schedule an appointment with my doctor there to evaluate my condition and treatment plan.

At this point, I’m pretty sure I furrowed my brow as I looked at him, but he had already turned to the computer, and I honestly can’t remember what he was saying to me because I was contemplating how dismissive he was at my statement/question.

I have since considered that his apparent backtracking might be due to feeling that he misspoke on the previous visit. Doctors tend to have an issue saying, “I made a mistake.” I can imagine they spend a good deal of time in medical school training on how to avoid saying stuff like that. Makes me think of the time when I fractured a bone in my pelvis. When I went to the worker’s comp doctor my employer used, he examined me, took a few x-rays, and told me I had a groin strain. About 30 minutes later, he called me – yes, the doctor himself – and told me, and I will never forget his words: “Can you come back to the clinic? I missed something.” I remember it so clearly because I had never heard a physician admit that he missed anything.

I am not insinuating that doctors are arrogant or that they think themselves incapable of making a mistake. I simply think they are trained to be very careful about what they say and the way they say it because they don’t want to be sued. I’ve heard malpractice insurance isn’t cheap.

So, for now, I will continue to take my oral chemotherapy in accordance with Dr. Joudeh’s instructions, and I will continue to pray that I am indeed in minimal residual disease stage and that I will stay there indefinitely. 😊