Yesterday I promised that “I will post a brief beginner’s primer tomorrow that should be quite helpful to newly diagnosed myeloma patients, their families and caregivers.” So here goes…
I started by updating the dedicated section I have on our site for newly diagnosed patients. You will find it at the top of the page in the black bar labeled, “NEWLY DIAGNOSED.” Here’s a shortcut:
There are pages and pages of information there I’m hoping can help.
For the rest of us, let’s run through the main novel therapy agents that are available to us at now. Celgene manufactures Thalidomide (Thalomid), lenalidomide (Revlimid) and now pomalidomide (POMALYST–I call it “POM” for short) are all IMiDs. These are all oral medications (capsules). And a representative from Celgene recently reminded me that there are still several new IMiD molecules being tested for release down the line.
Bortezomib (Velcade) and carfilzomib (Kyprolis) are both proteasome inhibitors and are administered by IV, except that Velcade can also be given sub-q in a shot. Both Millennium, makers of Velcade, and Onyx Pharmaceuticals, makers of Kyprolis, are working on oral proteasome inhibitors. Millennium is farther along with this than Onyx. Their MLN9708 (ixazomib) is working well so far in a number of clinical trials.
All of this is good news for myeloma patients–to a point. But no matter how many new IMiDs and proteasome inhibitors researchers develop, they aren’t going to cure myeloma patients. Additional “pathways” may be the key to unlocking the back door to a cure. And immunotherapy drugs might hold the key. Or maybe something else like the exciting new kinesin spindle protein inhibitor, ARRY-520, when used in combination one or more existing agents might be it. ARRY-520 uses one of the different pathways I mentioned above to inhibit growth of myeloma cells. Preliminary testing on heavily pretreated patients looks promising so far.
Interested in learning more about experimental therapies and which ones might help us most down the line? I wrote a book about it last summer:
In it, I write about up and coming myeloma research, explaining why it works and what’s taking so long! I then break-down the new, experimental drugs that I think will be around to help us over the next five years or six years.
In the book I write about how I’m optimistic that investigators will discover a “chronic cure,” using a combination of three or four different pathways that will allow patients diagnosed now to live decades. We are close to achieving that now for low-risk myeloma patients. Heck, specialists at UAMS are touting that they have already achieved this by using Total Therapy.
What is Total Therapy you ask? Total Therapy (TT) was developed in Arkansas at the Myeloma Institute, a part of the University of Arkansas Medical Center (UAMS). In a nutshell, docs there use tandem stem cell transplants, sandwiched between just about every combination of current myeloma therapy there is. Treatment is relentless and intense–and can four or five years. But their OS numbers are impressive, especially for low risk patients.
I’m no expert on Total Therapy, so I have invited someone that is–UAMS myeloma patient and blogger, Nick Van Dyk–to help educate us about how Total Therapy works, how it originated and what it’s like being a UAMS patient. I will run Nick’s contribution tomorrow.
In the meantime, I would like all of my newly diagnosed myeloma friends–along with their families and caregivers–to try and remember one important point:
For most of us, living with multiple myeloma is a marathon, not a sprint!
You will have time to learn and internalize all of this as time goes along. Why bother? With so many treatment options, your doctors will need your help deciding which therapy is best for you and when.
So study-up! And hold-on the that “marathon” part of the lesson. The sooner you accept your new normal, the sooner you can start living again!
Feel good and keep smiling! Pat