A fellow multiple myeloma patient blogger and good friend, Nick van Dyk, shared his views about the recent secondary cancer scare for long term users of Revlimid today: 
Some thoughts on this Revlimid situation…perhaps a false alarm?

What our doctors read in medical journals and publications which summarize research results and new therapy trends greatly influences how they are likely to act.

Good evening from the Grand Ballroom at the Peabody Hotel in Orlando, Florida.  I’m covering the IMF’s ASH kick-off event, Key Myeloma Questions for 2010: Latest Developments int Diagnosis, Prognosis and Risk Assessment in Multiple Myeloma.

Fellow multiple myeloma patient and blogger Nick van Dyk, from California, gave me a great “shout out” on his most recent blog post.  Nick is undergoing a very aggressive form of anti-myeloma treatment known as Total Therapy.  He does a good job comparing and contrasting the different therapy paths we have each taken the past few years.  No one, including us, is sure if one path is any better or more effective than the other.  I often kid with Nick about how I guess we won’t know until one of us outlives the other! 

Yesterday I shared part of my conversation/interview with Dr. Ravi Vij, a multiple myeloma specialist with the University of Washington School of Medicine.  The conversation centered on the University of Arkansas Medical Center’s intense research into classifying and treating high risk myeloma.

I started an article about carfilzomib last Tuesday this way:  The Truth About The New Multiple Myeloma Novel Therapy Drug, Carfilzomib:
“Is Onyx Pharmaceuticals’ new, next generation proteasome inhibitor a new miracle drug—or just another “bit player” on the multiple myeloma scene? It depends who you ask.”

As part of the continuing series about inspirational multiple myeloma patients, I would like to introduce you to Nick van Dyk from Los Angeles. 

I just received an e-mail (Thank you, Ruth!) containing a link to an excellent and comprehensive article titled “Treatment of Myeloma: Cure vs Control,” by S. Vincent Rajkumar, MD, a multiple myeloma expert with Mayo Clinic in Rochester, Minnesota.  I have met Dr. Rajkumar and heard him speak on a number of occassions.  I was startled by how open Dr. Rajkumar was to aggressive myeloma therapy options–the previously discussed Total Therapy being a prime example.  In the article, Dr. Rajkumar gives a balanced assessment of the “cure vs control” debate.  His conclusion: 

I have been recieving e-mails about Saturday’s Total Therapy post. Actually, I am starting to hear about and learn about many different forms of alternative multiple myeloma treatments–some minor “tweaking” of conventional “standard of care” type therapies–some all out, radical, kamikazi style protocols. Most who correspond aren’t willing to go “on the record” and let me write about their experiences–probably because they are reluctant to be exposed to ridicule. That’s unfortunate! How are we to learn if we don’t explore all available options–no matter how radical?

An excellent resource for multiple myeloma patients and caregivers, The Myeloma Beacon, ran an interesting article this week about the much discussed and debated Total Therapy.  Go to Multiple Myeloma Total Therapy Regimen Claims 50 Percent Cure Rate and see what you think.  I have been critical of the University of Arkansas’s Myeloma Institute (I will use “Arkansas” for short–others use “Little Rock”) claims that Total Therapy can cure multiple myeloma when the vast majority of other myeloma treatment centers disagree.  But I am supportive of the great results Arkansas has achieved–and I fully support the importance for myeloma patients to have an ultra-aggressive option to use against their cancer–if they choose to go that route. I have been critical of Arkansas’ Dr. Barlogie’s and his past claims to be able to achieve such a high cure rate.  After reading this article, I may have reached a greater understanding about why there seems to be so much confusion over data.  Take a look at the following excerpt from the Myeloma Beacon’s article:

I asked reader and caregiver, Lori Puente, to write an article for our site, describing the care her husband, David, has received since November, 2008 at the University of Arkansas Myeloma Research Center.  Lori is a strong advocate for myeloma patients everywhere.  She feels that many patients are often not presented with a full range of unbiased treatment options after their diagnosis. Here is Part One of this multi-part series:

There is no right or wrong answer here, and there certainly isn’t anything wrong with attacking myeloma and being aggressive with one’s therapy. Likewise, making a decision to choose a less invasive, more conservative therapy approach is OK too. The important and exciting news is that myeloma patients have therapy choices!

Here is the third and final installment of Nick van Dyk’s multiple myeloma story. He makes a number of important points which are relevant for any myeloma patient:

Before I continue Nick’s story, I wanted to share a wonderful experience I had yesterday with you. Before we moved to Florida, while I was writing my first book, I started corresponding with a gentleman named Jack Pacowta. Jack had started a multiple myeloma support group in Jacksonville, Florida. Jack was frank, open and honest about his condition. Even then, he wasn’t doing well. But very sick or not, he always had time for me, my book and other fellow myeloma patients. His wife, Anne, has continued to lead the group, even after her husband’s death last year. So, despite the four hour drive each way, yesterday I headed northeast from my new Florida home to attend and speak at the November Jacksonville support group meeting. Was it ever worth the trip! Anne is caring, accomplished and charming! The group members were so well informed, I think they helped me more than I helped them! (But that is how this type of thing is supposed to work, right?) I met several regular blog readers–which was fun. About 20 persons attended the meeting. And a number of them even purchased copies of my book, Living with Multiple Myeloma, which was both humbling and gratifying. We specifically discussed Nick’s story and his enthusiasm and hope for a cure using Total Therapy. Several group members expressed their concerns: Since Nick will have used most, if not all novel therapy drugs before, during and after his tandem transplants, what will he do if, god forbid, his myeloma ever returns? Nick, all were supportive, and hopefully optimistic Total Therapy will work for you. And if it doesn’t? I suggested that’s OK–you can then use one of the newly developed anti-myeloma drugs, now in the pipeline and available soon! Here is Part Two of Nick’s story:

To review, Total Therapy is an aggressive approach to treating multiple myeloma. The key components are hitting the myeloma hard right away, before it has a chance to adapt, then slamming the myeloma twice by administering tandem stem cell transplants. The patient then undergoes up to three years of maintenance therapy after the second transplant, using a combination of different chemotherapy drugs.
I only know one patient who has ever undergone such therapy. My new friend, Nick van Dyke, from California, is nearly finished with the program. Nick is doing great! He is very enthusiastic about the potential of Total Therapy which, along with donor stem cell transplants, are seen as the only current therapy regimens which have any real hope of curing multiple myeloma. Does it work? Know one knows for sure. Is it worth the risk? Only the patient undergoing the procedure can tell you that. All I can add is that, knowing what I know now, I would not participate. The program goes against my current strategy which is – to do whatever it takes, with the least amount of risk – to stay alive until a verifiable cure is found. For me, even a single stem cell transplant is a high risk procedure I am trying to avoid, let alone two! So good luck to Nick and other Total Therapy patients. I have chosen to watch, wait, stick and move. By using novel therapy agents like Revlimid, Velcade and the many soon to follow alternatives, I still hope to never need a stem cell transplant. But if I do, I will be ready! And if I need a second, I will proceed without hesitation. I’m just not going to jump in and electively try two transplants without concrete proof, universally recognized by oncologists and hematologists, which specialize in treating multiple myeloma.
Feel good and keep smiling! Pat

I want to take a time-out today and stop and remember the patients that aren’t doing so well – that aren’t responding to Revlimid, or Velcade, or who suffer a re-lapse after only a few short moths or years after undergoing a painful and risky stem cell transplant.
Patients like Rebbecca from a suburb of Tampa, Florida. Rebbecca has already lost kidney function and is undergoing renal failure from the effects of multiple myeloma. She has very little bone involvement and her bone marrow numbers are good. Unfortunately, since her kidneys are already damaged, her doctors don’t feel they can use Revlimid or Velcade, so she is forced to endure a chemotherapy treatment of Cytoxan, will probably loose her beautiful long hair, just in time for her transplant. (Where she probably would have lost the hair anyway) Yuk! Then there is my friend Karl, who is allergic to Revlimid and Velcade. And what about Ardy, a delightful, thoughtful young woman who, while undergoing her initial chemotherapy prior to transplant, suffered a reaction with an anti-fungal medication she was taking and is now legally blind. Survivors like Nick and I should stop and remember that all myeloma patients don’t respond as successfully as we have to therapy. That some are already sick or have other pre-existing conditions which take away the hope of using optimum therapy options. We should remember the average myeloma patient is still 68 years old when they are diagnosed and, what works for someone under fifty in relatively good health, may not work for a 74 year old with high blood pressure, arthritis ;peripheral neuropathy or drug allergies. Still, our philosophical debate is too important not to explore. I have written in the past about the added complication newly diagnosed myeloma patients are forced to endure. Options. Therapy options. Lots of them. You have just been told you have cancer. You aren’t thinking straight. You don’t understand the ramifications of your diagnosis. You don’t have enough information to make an informed decision. All you want is for you doctor to tell you what to do and get started. But this is the wrong way to proceed after a diagnosis of multiple myeloma. That is why our debate is so important. Because the initial therapy choices a patient makes today can effect their quality of life and life expectancy later. Complicating all of this: NO ONE KNOWS WHAT THERAPY WORKS BEST! KNOW ONE KNOWS WHEN THE BEST TIME IS TO USE VELCADE OR REVLIMID OR GET A STEM CELL TRANSPLANT. The docs are all just guessing! Nick’s physicians are guessing. My Mayo team is guessing. A patient’s oncologist somewhere in central Indiana is just guessing. They read something. They try something. Then they try again. A patient moves, dies, changes docs. Did the therapy work? Why? For how long? WE DON’T HAVE ENOUGH INFORMATION! IT IS SO FRUSTRATING!
So feel good, keep smiling and take time to remember the patients who aren’t going to make it. Feel good, keep smiling and hold on to the hope that your oncologist will guess right and you will live to fight another day! Pat

I want to preface my comments by admitting I don’t know enough about the program to give more than my initial reactions to the program. I also want to take this opportunity to thank Nick van Dyk for his willingness to take the time to give us an outline of the therapy plan – his therapy plan – which is working, by the way. We realized early-on we were on opposite sides of this multiple myeloma therapy debate. Yet, unlike most of our politicians these days, we have been able to concentrate on our similarities, not just look at the differences. We e-mail back and forth several times daily. He is a help and inspiration to my writing, and I will be including an added chapter about him and Total Therapy when I revise my book, Living with Multiple Myeloma, early next year.

Nick has generously agreed to help educate us about Total Therapy. This is a new concept for me, but I know some of you are familiar with this treatment philosophy. Nick wrote this yesterday:

I recieved the following e-mail from a cyber friend of mine, Nick Van Dyk, who is a 41 year old myeloma patient that has choosen a very aggressive therapy approach in an attempt to actually cure his multiple myeloma. Nick works with doctors in Little Rock, Arkansas. If you follow my blog you may have noticed I am very interested in the growing divergence of therapy philosophies between the Arkansas group and Mayo Clinic. The Arkansas group tends to be more aggressive, often using tandem stem cell transplants and lots of post-transplant maintenance therapy. Mayo seems to be more flexible in it’s treatment options, most often using a single transplant with little or no maintenance therapy afterwords. There is so much to cover here I won’t go into the details now. Instead, I would like you to read Nick’s e-mail and I will go into more detail and get you more contact information as the days go on. I e-mailed Nick yesterday to see if he would be interested in joining a group of us at our Patient Summit this November in Boston, sponsored by Millennium. I felt it would be a benefit to the group to have someone there who is using what Nick calls “Total Therapy.” Here is a copy of my e-mail and then his response: