Now that my wife, Yeonsil (연실) and I have had some time to digest the information, we have taken to hitting the books and researching treatment options. Thankfully, Yeonsil took the lead on this one and found some recent articles that indicate my GVHD may have bee exacerbated by extremely high doses of medication.
My oncologist is world renown, has appeared in several studies, and is quite the celebrity in his field. He also has an excellent track record of saving lives. Nevertheless, he is old school and tends to use high doses on younger patients who can "tolerate" the treatment. Case and point, I am at the hospital mornings and evenings receiving a total of 160 mg of Methylprednisone (this has replaced Prednisone as of today), 4 mg of Tacrolimus, and 1 mg of Sirolimus--all of which are immunosuppressants. This amount of immunosuppressants is nearly double the amount other patients are receiving. When I say other patients, I am referring to patients with AML at other centers across the world, and I am relying on recent studies and publications. Moreover, those patients have a higher stage of GVHD than I. Yeonsil, was keen to note that my medication exceeds even the most extreme cases. I am thankful to have her in my corner because I never would have noticed this. I'm honestly so incapacitated and can barely function. I have said it before, and I will continue to say that my current cocktail of over 20 separate medications daily is destroying me in more ways than I can explain. In fact, the physical transmogrification is such that I do not even recognize myself in the mirror; it's very Kafkaesque. My face looks like a bloated puffer, my chest is concave, my gut seems to be giving birth to water, and the edema in my legs and feet resemble a hobbit sans the hair.
Although Yeonsil and I understand that all patients do not fit neatly into a little chart or statistic and care must be tailored for the art of an allogenic stem cell transplant, we have to signal the red flag when treatment seems too divergent. We have the utmost respect for our team here, but tomorrow, we are going to adamantly question the approach and present some recent studies that demonstrate high doses of immunosuppressants, especially Methylprednisone, carry a heavy risk of mortality with little or no improvement in durable efficacy or overall survival. In fact, studies show that doses in excess of 20 mg of Methylprednisone increase mortality and morbidity by an alarming rate with no added marginal utility. In addition, they ruin the patient and cause several complications that culminate in a rapid and painful death spiral.
I am very thankful to have a wife that cares enough to research these things. This is not the first time that she has caught something and brought it to the doctor's attention. While I do my best to brush up on the treatment as well, this transplant has completely destroyed my ability to focus, and I find myself simply struggling just to make it through a day.
This is a crucial period. Failure to act now could easily result in an irrevocable outcome whereby I die from an infection or the GVHD spreads to other organs, becomes chronic, and I am then severely disabled with a greatly diminished quality and quantity of life. For now, we continue to pray that God will give the doctors wisdom in choosing their course of action. At the same time, God also gave us a brain and the ability to investigate matters ourselves. There is no harm in questioning the treatment regiment, discussing alternatives, and seeking second opinions. I only have one chance at this. As much as I just want to crawl into bed, chow down on narcotics, and be left alone, I am thankful to have Yeonsil who carried the baton in my stead and pushed me to be proactive at this time. I could not have a better wife, and I'm going to fight to remain with her as long as possible.
Oh, and speaking of narcotics, I knew things were bad when they started offering me more pain medication, a.k.a., controlled substances.
Finally, I do not want this to sound invidious and spiteful. I really do believe that my team has my best interests at heart. They have an amazing track record for the time periods in which they worked. However, times change, new studies reveal new information, and people must adapt. I do not pretend that my two hours of perfunctory studies can make up for years of medical school and experience. However, the studies upon which I am relying were also written by prominent figures in the field of oncology. We simply intend to present the studies and discuss the issue. When we have done this in the past, the team was very accepting of our concerns and worked with us rather than against us.
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