Here is Part Two of David and Lori Puenti’s comprehensive story about their decision making process following David’s multiple myeloma diagnosis:
Rather than talk about Little Rock, I would rather talk about why I knew that we needed to go to a “Researching Facility” as I call them. I would urge anyone, with any rare disease, and even some more common ones, to always seek out treatment at a research facility if at all possible. I realize that folks have different insurance, finances, concerns and considerations. My only consideration in going to Little Rock was it was 2,200 miles away. All the logistics that go with that were a real concern. But once we went for consultation, keeping my husband’s life my foremost concern, the logistics presented themselves in a logical progression. I didn’t worry about the how before the what. I will tell you that our experience at Little Rock was A+ in all the areas that matter, and there are many more than just getting treatment, as most of you fully understand. I took care of my mother, who died of cancer and I had first hand experience of all the difficulties surrounding a potentially terminal illness. So walking into UAMS for our consultation was a breath of fresh air in my healthcare experience from the start of the initial phone call to our arrival and beyond.
Why I chose a research facility vs. a “treating” physician…
I worked for the University of Maryland’s Center for Environmental Energy Engineering. I was their sole administrator, it was a small group of highly respected, hard working research professors with about 40 graduate students, mostly PhD seeking students. My director is world renown in his field and was an Editor of a archival quality research journal published by the “society” representing his area of expertise. Part of my job was to be his assistant on managing the many papers submitted for peer review in the hopes of being published in this journal. The society used an online publication management program, commonly used now by all the big journals. This allows authors from around the world to submit their papers electronically, and then for the Associate Editors (we had 12) to organize and invite “reviewers” to review these paper submissions. This process from paper submission to publication (should they be that fortunate) took 18 months to 2 years, i.e., in print and mailed to subscribers. I won’t bore you with all the details as to why that is, but everyone is busy, they don’t get paid to do this, it is an honor, but it is work to pour through someone else’s research paper, examine the evidence presented, check the calculations, check references, etc., and then make a recommendation. Very few papers get to publication in the first 3 months. Edits are often suggested, challenges to claims made, etc., and then it has to go back through again and so on. Once approved, then they go into the next available journal publication, as the actual publication process is another couple of months, so they get in line.
Each journal has requirements for publications that include limits on words, tables, graphs, photos. Whatever the research entails it must fit into parameters listed by the journal. Some don’t allow your paper to have been submitted, let alone published, elsewhere. Some (I would argue most) don’t let a non subscriber see the published paper. Some won’t even let you present it at a conference if you’ve been published. My point being, there are all sorts of rules in publishing scientific research that is backed up by the peer review process, which is the system we value at the moment. Our journal was a “Blind” review. That meant that efforts were made to have a paper go thru review without knowing who the authors were and the authors not knowing who the reviewers were. This was to attempt to minimize biases and attitudes based on the personalities involved. I will tell you that that process is not always successful. In a small group, its not always easy to mask who the authors are on a particular subject.
I knew, perhaps uniquely, that if we went anywhere other than an actively researching facility, they would be arguably 2 years behind what was occurring right now. When I presented this to our original diagnosing physician, who would not be treating Dave long term and had radiated him and started him on a Thalidomide/Dex regimen immediately, he admitted that I was exactly correct in my analysis of the situation. While MM is seeming less and less rare, the fact is, it is still classed as a rare disease. The local treating physicians that were available to us had a few patients. Quite frankly, they had fewer patients in their 30 year careers than a place like LIttle Rock has in 3 months. But I digress… I said to him, “Let’s be honest Dr. L, when you get an MM patient you guys pick up one of your medical journals and find the latest, 3,000 word paper, read it over, and prescribe treatment based on that, and when you do that, you have little understanding of all of the research and you are already 2 years behind what is current.” He said, I was absolutely correct. I said, “unless of course, you go to a Myeloma Conference, but then why would you, if you have so few such patients?” He admitted, he didn’t and he wouldn’t. Now admittedly, he was a general onc and would not be “treating” Dave. We would be heading to those “more knowledgeable” in the blood cancers. While they might know a bit more than he did, my personal assessment was that it was a bit more, but not enough to treat my husband.
Paper publications and presentations. In order to publish papers they MUST produce statistical data that they have collected. It must be verifiable. As a result, they will produce their data, life expectancy, assumptions, theories, conclusions, etc. If you go to a local oncologist/hematologist, they will not collect this data and they will not share this data with you, period. And quite often they will be offended that you asked such a question, as I experienced. A simple question for a researcher, not so for someone else. You ask it at a research facility and they will gladly share their published data, but also their current unpublished data, as illustrated above, the published stuff is old. Most of us know that statistical data can be manipulated and slanted. Its a fair argument and one that we must rely on the peer review process to meat out. Eat red meat, don’t eat red meat, eat red meat once a week… drink a glass of wine, don’t drink a glass of wine, drink a glass of wine once a week. It can indeed make you neurotic.
As I went through this process I also learned, as many of you may know, but I did not, that the stem cell transplant was NOT the treatment at all! It is used to help you recover your immune system to safer levels as soon as possible. It is the DRUGS used prior to the stem cell infusion that is the treatment. Then, it is the treatment AFTER that is in many ways just as crucial – this after care would be years (hopefully). So, for me, as a wife and a caregiver, the last thing I needed was to have my husband seeing a physician that made him feel like everyday he was still breathing was one more day than the doctor thought he would have. One who was just going to give him some drugs to extend his otherwise doomed life, with a “well we tried” shrug. I’m not suggesting that anyone else’s doctor has done this, but we had two who absolutely do not believe you can survive MM for very long, end of story. That was simply unacceptable to me, and I had the good fortune of having two other doctors, who don’t treat MM, who felt the same way I did, based on their understanding of the research activity in the disease of MM. They unequivocally advised me NOT to take Dave to those doctors for treatment. They are friends and they know my husband, and agreed he needed to go to a physician who was up to date, experienced, optimistic and hopeful, because in their view, there was every reason to be hopeful at this time in the treatment options for MM.
When one doctor told me that “the new treatments” were not proven, my doctor friend reminded me, “Well they have not been dis proven either.” That is indeed an important point here. We are in the thick of it folks. No one, knows the way out of the forest, but some have more experience, hunches, instincts about the path out, and some are getting more people out of the forest than others. I can tell you that when I speak to a physician, I have a list of questions, some medical, some not. When I ask my questions, I’m looking for answers to be sure, but I’m also listening for biases, personal attitudes, character. Some people think I’m crazy. Who cares? You just want them to fix you. Well, I’ll tell you why I care. These things tell me a lot about a person’s ethics both professionally and personally. What kind of team is a person likely to have supporting them that I will be in contact with more often than not. For instance, when I went to Little Rock and had our first visit to the infusion center, what immediately struck me was how long the nurses had been working there. I couldn’t find anyone under 10 years (and several were over 16 years). That tells me a lot about a facility, the researchers and administrators behind it. They like working there. They like their job.
Thanks, Lori! More tomorrow. Feel good and keep smiling! Pat