LongLifeNoodles

Over the last 10 months, I have come to understand that a Multiple Myeloma diagnosis comes with a responsibility: to understand as much as you can about the disease and your own needs so that you can make informed choices that balance your treatment with a good quality of life. This is not a responsibility that can be relinquished to your doctor or caregiver: it needs to come from you based on the input of your doctors, caregivers and others you meet along the way. And, these decisions are tough, particularly because there is no single right answer. There is no established, widely applied standard of care for Multiple Myeloma, very little conclusive data, and much disagreement among great doctors on the efficacy of various treatment options. Your course of treatment will depend on how the disease presents, the health of your kidneys, the degree of bone involvement, your age and overall physical and mental health, your tolerance for treatment, and, most importantly, your own philosophy on how to battle this disease while continuing to lead a meaningful life.

The advice you get will be based on the training, experience, predisposition and agenda of your treating oncologist. Some doctors will advocate a very aggressive approach to treatment: for example, Dr. Bart Balogie (left) and his team at the Myeloma Institute for Research and Therapy (MIRT), which just received a $19.5m grant from the National Cancer Institute, is treating eligible patients with their Total Therapy III protocol- V-DTPACE (velcade, dexamethasone, thalidomide, cisplatin, doxorubicin, cyclophosphamide, and etoposide) for induction therapy, followed by two (tandem) high dose melphalan stem cell transplants, followed by two more rounds of V-DTPACE as consolidation therapy, followed by one year of VDT (velcade, dexamethasone, thalidomide) maintenance and one year of DT (thalidomide, dexamethasone) maintenance. Whatever you think about this approach (and there is lots of debate), it is difficult to argue with MIRT’s results: 70% achieve complete remission (CR) and, of those, 90% remain in CR after 4 years. But, for these results, be prepared to turn your care completely over to the MIRT team: they only accept patients who have never been treated before; all the prognostic tests, treatment and follow-up tests have to conducted at the MIRT clinic in Little Rock, Arkansas; and, there is NO diverging from their protocol.

Other oncologists will advocate a more “therapeutic” approach that they believe is as effective, less toxic, and less physically and emotionally taxing. These doctors will question the need for tandem stem cell transplants, arguing, correctly, that there is no data that supports the proposition that a second transplant extends the duration of remission or long term survival. Some will even question the need for a single transplant, arguing that chemotherapy can lead to long term remission without the risks involved in autologous stem cell transplants. Some doctors will suggest induction therapy that includes a combination of one or two agents rather than the more aggressive cocktails advocated by MIRT (V-DTPACE) and other institutions because they believe that they can achieve similar remissions with less toxicity. Some doctors will question the need for any consolidation therapy post-transplant or the need for any maintenance therapy after remission is achieved. They will advise a more measured approach- initial chemotherapy and supportive therapy, a single stem cell transplant for eligible (young and otherwise healthy) patients, regular monitoring, and treatment when the disease relapses.

If you do your job as a Myeloma patient and seek out all the expert advice you can from Myeloma specialists and other patients, you are likely to get a full range of advice- from highly aggressive treatments such as MIRT’s to much less aggressive treatments that may or may not include stem cell transplants. Your job is to seek and absorb all the information and advice you can, weigh all of it as objectively as possible in light of your own circumstances and goals, and commit to a path that balances treatment with quality of life. And, you must do this without falling for the various strong personalities you meet along the way- there are some very passionate doctors and patients that believe in their chosen modalities. Your job is to develop your own path.

I am not going to advocate one path over the other, but I strongly suggest a measured and thoughtful approach to understanding the disease and making choices that seek to balance your treatment with being able to continue with your life. So, here are some general guidelines that I picked up along the way:

1. Stop reading the survival statistics online. Every case is different. And, there are new drugs and therapies that can provide long term remissions and effectively treat relapsing disease.
2. Read everything you can (other than the survival statistics). There is a lot of good information available online. I provide a list of great resources at the bottom of this post.
3. Pick an oncologist/ hematologist that is a Multiple Myeloma specialist and is involved with research. Having an oncologist/ hematologist that does not live and breathe Myeloma is irresponsible. If your first oncologist is not a Myeloma specialist, he should refer you to one; if he doesn’t, he is irresponsible.
4. After you have picked your treating oncologist/ hematologist who specializes in Myeloma, find another one and get a second opinion on treatment. If both doctors say the same thing, find a third doctor and get a third opinion.
5. Ask questions of your doctor, his or her fellows, interns, and nurses. They are all really busy and often need to move on to the next patient, but do not be afraid to schedule more time, even over the phone, to better understand their perspective on the disease. Push for information.
6. Ask your doctor for the name and phone number of someone that he or she is treating (or has treated) that is similar to you (age, progression of disease, treatment path). Most good doctors have a list of patients willing to share their experiences with others. Get them on the phone and you’ll not only receive more valuable information about the disease, but you’ll also get some insight on the doctor.
7. Seek input from people who have gone through Multiple Myeloma. You’ll be surprised how they come out of the woodwork once your network knows you have Myeloma. Go to local support group meetings- many are organized at your local cancer center or through the Leukemia and Lymphoma Society. The perspective of patients that have been through treatment can be extremely valuable, particularly if they share your view on life.
8. Your insurance company may have a nurse that specializes in Myeloma. They can’t tell you what to do, but they can explain the options, answer questions and direct you to specialists in your area. If your insurance provides this resource, use it.
9. If you are younger than 70 and are in generally good health, choose a course of treatment that protects your bone marrow so that you can pursue a stem cell transplant if you need one. Some agents (melphalan, thalidomide, lenalidomide) can damage the bone marrow and impair the stem cell collection process.
10. Ask your doctors about newer agents, in particular, velcade, thalidomide and lenalidomide; and, be wary of doctors that rely solely on older standards, like melphalan and prednisone, and are not familiar with newer agents.
11. Ask your doctors about new chemotherapy drugs in the pipeline. If they are not aware of at least one or two new drugs that are in phase 2 trials (like carfilzomib), you should be concerned.
12. Ask your doctors about their view on stem cell transplants and whether they can refer you to a transplant doctor that specializes in Myeloma. A good Myeloma specialist will not completely shut that door and should be able to refer you to a transplant specialist.
13. If your doctor suggests an allogeneic transplant, like my first oncologist did, run the other way. Almost no doctors or institutions advocate allogeneic transplants for Multiple Myeloma patients because of the danger of host vs. graft disease, the efficacy of autologous stem cell transplants, and the pipeline of new agents.
14. When you begin induction (inital) chemotherapy, pay close attention to side effects. If certain drugs produce intolerable side-effects, take note and ask your doctor about making adjustments in the dose.
15. Do not minimize the impact of side effects on your quality of life. The end does not always justify the means! The doctors are not the ones suffering from peripheral myopathy (velcade) or deep vein thrombosis (thalidomide, lenalidomide) or the various terrible side effects of dexamethasone (which I found intolerable).
16. If you are lucky enough to have a caregiver that has been with you through the process, put a lot of weight on his or her perspective, particularly later in your treatment. They are typically more objective and probably have a good sense of the right course of treatment.
17. Have a life: you do not need to be defined by your cancer. You can live a full life and treat your cancer at the same time. In order to do this, you need to balance your treatment with the life you want to lead.
18. Think positive. We are unlucky to have Myeloma, but lucky to have it at a time of great progress and hope for the treatment of the disease.

I was compelled to write this post because I attended a seminar called “Living with Myeloma,” put on by the Leukemia and Lymphoma Society at the Palo Alto Medical Foundation clinic in Mountain View, CA, and I was so surprised by the questions and comments at the end of the session. So many people- young and old and at different stages in treating the disease- with little or no knowledge about their own disease or treatment options. It is incumbent on us, as patients, to know enough to make good choices- no excuses. It is too easy to be overwhelmed and relinquish control to a caregiver or doctor. The stakes are high; we all need to pull ourself up out of our disease and take control.