Caregiver & Patient Advocate Donna Elkey Chats Tom Brokaw, Getting A Myeloma Specialist, And Asking Tough Questions
BY DONNA ELKEY My husband, Bert, was diagnosed with multiple myeloma in January 2014 at the age of 52. Recently, Bert and I watched the Dateline NBC special with Tom Brokaw talking about his myeloma journey. I was grateful that Tom finally spoke very publicly about his disease and was pleased that myeloma was given a prime time special. As we watched, I was messaging with some others who are in our myeloma circle, including nurses. The next morning, Bert and I talked about the show, our reactions, and the posts of some on the myeloma support pages on Facebook. I will try not to speak for Bert here (I do that far too often as it is). But Bert said he that took away three things:
- Money makes a huge difference when you are facing a diagnosis
- Caregivers really need more care
- You really cannot understand what it is like until it happens to you
My take always were a bit different but I processed the whole show through a very different lens than he did. Bert is more concerned that I’m ok than he is). My take on being a caregiver and the need for caregiver support is this: Each person needs different support. There are some wonderful caregiver support programs available. I am very well supported by friends, by family, by the nurses at Infusion 4 who are priceless. I know when I am in need, I’m usually pretty good about seeking help. My aggravation comes when people (I suppose well meaning but I don't know) say "Let me know if I can do anything for you" and when the time comes that I take them up on their offer, they are unable or unwilling to help. This has happened to me several times. Here's the thing... I don't need much. I don't need someone to take me to lunch (it's nice but not a need). I don't need someone to talk to on the phone (I'm not a fan of talking on the phone oddly enough). What I need is usually along the lines is help with mowing my lawn, or moving some furniture, or fixing my car... They are the things Bert used to be able to help me with but can't now. And I'm finding people really do not want to help with that stuff, at least in my experience. I was floored that Tom Brokaw’s treatment plan seemed to be so out of date. I was floored that they did not seem do adequate testing to determine just how involved his bone disease was. One of the very first things Bert had done once we arrived in Little Rock (where he was treated) was several bone scans, PET scans, MRI's to determine just how involved the bone diseas was and then Kyphoplasty to shore up those areas of his spine that were involved. For Bert, he was fortunate and he only had two major compression fractures, and one broken rib. He had a total of 47 active focal lesions...holes from the myeloma eating away at the bone. By the looks of the X-ray on the show last night, Tom Brokaw had about nine! Had they found them earlier and done the Kyphopasty earlier, he could have avoided months of debilitating pain. I was surprised that Tom’s early treatment only involved the use of Revlimid. This is a good drug but it is usually more effective if used in conjunction with Velacade, which they later added to Tom's drug list. I understand he did not have an SCT (stem cell transplant). SCT is still not considered a mainline treatment. Many people choose not to have one. But I just felt like from what I have researched and learned about the disease, and treatments, Tom Brokaw's treatment was behind the curve rather than ahead as one would expect from someone who had access to resources. This disturbed me. When Bert was initially diagnosed, we were referred to what we were told was a specialist. She was a hematologist/oncologist in Amarillo, Texas. We started at the ER on a Tuesday, were told on a Wednesday that they believed it was multiple myeloma and the following Tuesday we had our first appointment and were expected to start treatment immediately. It was fast and we didn't think to question the expertise of our specialist. Lesson Leaned and fortunately for us, it was learned early... The plan was for Bert to have five to six treatments of what is referred to as RVD. This is the three drug combo Tom Brokaw ended up with: Revlimid, Valcade and Dexamethasome. After five to six treatments, if the numbers were ok, Bert would go to MD Anderson in Houston to have his stem cells collected, go impatient and receive high dose chemotherapy, and receive a stem cell transplant (our specialist called it a bone marrow transplant). I never felt comfortable with our doctor. She wouldn't answer my questions, she couldn't explain the disease or the treatment in a manner that I felt comfortable with. Something just felt "hinkey" to me. So, I kept researching. I suspected my husband had multiple myeloma a month before we ended up in the ER that day. So I was prepared for the diagnosis and I was already reading research and journals. I am not a WEB MD person. Give me the hard data. There was a still small voice in me that said we needed to keep looking. Research pointed us to UAMS in Little Rock. When I first told Bert I thought we needed to go to Little Rock, he was opposed to the idea. He finally gave in and agreed to get a second opinion. Once we arrive there, we met with Dr. VanRhee and discussed the treatment plan, and the expected prognosis (always a guess by the way). In contrast, we realized the doctor in Amarillo may have been a specialist, but not in myeloma. There are people we have met who did the very treatment we were supposed to do. We have met them here in Little Rock when the treatment in Houston failed and UAMS is where they came for hope. I have read many times over the last 18 months that UAMS is too aggressive in their treatment. I have read of patients who spend their whole lives taking chemo meds. I have read of people who have tried (unsuccessfully I might add) to treat holistically. I have been told that UAMS is more interested in research than the patient. What I can say with all certainty, UAMS was absolutely the best decision we have ever made. While previously thought to be a disease of older black men, I have met many patients who were young...30-55, white....men and women. The young ones tend to have the most aggressive forms of this disease. And it is knowing the very form (the genetic makeup) that makes the difference. When we first came to Little Rock we knew that Bert had IGA Kappa. At the time this information was Greek to us (still is to Bert) but I understand a little more now than I did at the time. But there is genetic testing that can be done to determine what genetic abnormalities are present in an individual's myeloma. It is these genetic markers that give a more accurate picture of the disease and what treatment has shown to be most effective. I have met and/or talked with hundreds of patients and caregivers. No two patients have the same myeloma experience. It quite literally presents differently in every patient and every patient responds to treatment differently, which makes myeloma a unique cancer. We have learned more about Bert's genetic components. I am stunned to know that many, many patients never learn this information. Many never have PET scans (the absolute most effective diagnostic tool for MM). So for me, the take away from last night's show was that there are patients who are not being given the most accurate picture of their disease, and therefore are not being given the most up-to-date and cutting-edge treatment available. Tom Brokaw used the term advocate. Have an advocate and if possible have one with medical knowledge. I will go a step further: Have an advocate who is willing and able to read the research and be able to ask relevant questions. I am an advocate. I will ask questions, I will demand information, I will read and study and ask more questions. I am not afraid to step on toes, I am not afraid to ruffle feathers. My number one priority is his care. I can say with absolute honesty, I am fortunate because we have a team that encourages my questions and encourages us to be an active part of his treatment team, but that is not the case everywhere. I guess this long drawn out discussion basically boils down to this: I found Tom Brokaw's story to be interesting. I felt for him and his family as if I have learned nothing else, I have learned that the whole family is effected by a cancer diagnosis. But I also felt saddened that too many people are being diagnosed with this disease for it to be still so unheard of. Too many patients are not being treated by a true myeloma specialist and too many are dying because their treatment was not what they needed it to be. Bert's Myeloma is considered in remission. For him, there is currently no sign of the myeloma anywhere and that is good. That being said, it is still considered incurable and therefore we will live with that uncertainty daily. I am glad we watched the show. I am grateful we talked about it and I am more grateful than ever for UAMS, MIRT, Dr. VanRhee and our team in Little Rock.