Pat’s Place: A Patient’s Reflections On The Progress Of Multiple Myeloma Research
In this week’s column I would like to share some of my observations and thoughts about where I think the treatment of multiple myeloma is heading.
First, the good news: More drugs are being developed now for myeloma than for any other cancer. And, for the most part, they are working! These drugs—pomalidomide, carfilzomib, perifosine, Zolinza (vorinostat), etc.—most often work best when combined with other approved novel therapy agents thalidomide (Thalomid), Revlimid (lenalidomide), and/or Velcade (bortezomib).
Maintenance therapy after a stem cell transplant is proving to be helpful in delaying the return of the disease.
Fine tuning of therapies given to newly diagnosed patients prior to undergoing transplantation, called induction therapy, is helping extend the length of time that transplants work.
That is, if a patient decides to undergo a stem cell transplant at all! Novel therapy agents are working so well in some patients that they are able to postpone getting a transplant indefinitely.
Evidence is growing that bone strengthening agents, known as bisphosphonates, also help slow myeloma’s harmful effects. One of these drugs, Zometa (zoledronic acid), may also contain some additional anti-myeloma properties.
Clinical studies are more numerous and accessible than ever. Many patients now have access to promising, new anti-myeloma therapies, even before they are approved by the Food and Drug Administration.
Next, here is some good and bad news: Life expectancies are rising impressively for some multiple myeloma patients, but not for others.
Younger, healthier patients with slower moving myeloma and fewer genetic abnormalities are really doing well. But others are not so lucky. Those with chromosomal abnormalities (conditions that help predict a type of myeloma which is more difficult to treat), some elderly patients, those with drug-resistant disease, or patients with other serious health problems continue to struggle.
The end result: Overall median life expectancies of all multiple myeloma patients, taken together as a group, are not rising as fast as one would hope.
Now the bad news: I just don’t see a “wonder cure” waiting around the next corner. Our economic system rewards research that produces fast, positive results. Although multiple myeloma is proving to be responsive to several different types of drugs, working to find a cure is expensive and takes a long, long time. So instead, researchers are focusing on the small battles they think they can win such as modest improvements on the current treatments, instead of the tougher, far more illusive war to find a cure.
The bottom line: Considering the fact that we all deal with having incurable cancer every day, the future looks very bright!
These days, when a person is diagnosed with multiple myeloma, they are often told something like this:
“I’m sorry to report you have a type of bone marrow cancer called multiple myeloma. There is no cure—but there is hope. We have five or six different ways to treat your disease. Until recently, the average multiple myeloma patients would die in four or five years. Now, many are living twice that long—some even longer.”
I know a few multiple myeloma patients who take little solace in knowing researchers are making progress—the specter of having an incurable cancer overwhelms them. I understand.
But I take great hope and comfort from the ongoing progress that multiple myeloma researchers are making. If scientists can continue to make progress at the current rate, most of us won’t need a cure! Like prostate cancer or diabetes, myeloma patients may soon be more likely to die from other causes than their cancer. Considering the circumstances, it doesn’t get much better than that!
Feel good and keep smiling! Pat
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Thanks for your perspective regarding MM research, Pat. Informative and interesting, as always. While the road to a cure can't happen fast enough, I join you in being grateful for the advances that are being made. I'm holding out for the hang-gliding accident at 100 years old to take me to the great beyond! Sean
I too am grateful for all the novel research & drugs for MM. However, the diagnosis itself gives "the great beyond" a shape & form that makes a positive cheerful daily life difficult most of the time for me. I do try to find one thing funny every day to laugh about!
How absolutely odd that we all "know" we are going to croak one day, but a diagnosis keeps the grim reaper hanging around all too close. Sometimes I think all these researchers have the answer/cure, but would rather not give up their jobs to the pharm. companies who make billions. Celegne is currently fighting an unnamed drug company from making a generic Revlimid which would cut into its $2.7B revenue
Sean and Suzanne-
Thanks for reading and your support! I'm not a big conspiracy guy... Think it takes too much planning and I'm not sure a large group like Celgene execs are up to that! Someone finding a cure finds a way to make lots of money that way, too, don't you think--even if it means no more lengthy maintenance therapy treatments and the like. However, I do believe companies do things at a speed and in a way to promote their own self interest. Let me know what you think after you read my article- Pat
Pat,
Good article- another ray of hope! Your "positiveness"(is that a word?)is helping all of us who are on this journey. Keep up the insights
Hank
Pat,
An article to the point, as always!
Keep on with the good, informative articals.
-
Shay
Thank you Hank and Tina! So glad I can help. I'm excited about our future- Pat
Hi,
I get suspicious when people down play the fact that pharma is big money cut-throat business. It's not just doing a little for ones self interest.
I'm sorry, but they do everything in their power to keep the money rolling. If there was a cure, the amount of money and processes for that cure to make it to the consumer is immense. First they have the legal requirements, and then they have the big guns aimed at them from their big competitors.
When media and articles paint a picture of pharma as good caring guys, it's not too convincing. It's obvious even to the gullible.
Another such strat is for pharma to destroy any glimmer of hope that a cancer patient has for a cure. This would force the patient to settle for expensive drugs that offer half job treatment. They need people to think it is impossible to cure cancer, because without hope for a cure they eliminate the threat of a cure. How do I know this? I have first-hand experience with the politics and sales of such drugs. Sales & Marketing my friend...
However, I’d like to say to all that there is hope for such a cure, because you’ll always get people like myself come out and break the science. Sooner or later someone has enough and does something about it.
And the big question is, is this post too much of a threat to be approved?
Lets hope not.
Why would I try and censor this post? You take a reasonable position. I'm a bit more hopeful and optimistic about human nature. But money can currupt, and a corporation's responsibility is ultimately to their shareholders. Many of us agree with at least some of what you say. Keep asking questions and thanks for reading! Pat
Dear Pat,
great article - and with a hopeful ending; the cup is half full of water :-).
Stay tuned and thank you for your work!!!
Martin
I'm wondering why scientists are not deepening the topic of myeloma re-lapse more.
We always read about drugs, genetics, progresses - but not much about the reason, why myeloma comes back and back again? When we do "stem cell transplants", what is left and why?
It goes away a short time - superdupa. But WHY it comes back again? We had more than 20 years of research - but no answer on this central point. Niente. Nothing.
In my opinion, this key question should be stressed much more. It should be positioned in the center of the research and drug development activities. And it should be a key feature on myeloma events. Even in the youngest papers of ASCO and ASH a.s.o I can't see any answers. Not even in the forefront. Do you?
Claudia-
Great point! I have received several similar questions/comments lately. Walter writes:
"Are cancer stem cells an established fact,and if so aren't we just treating their progeny and not the core source of the Myeloma cells?"
A fellow myeloma patient/activist, Susumu from Japan responded:
"Not much discussed cancer stem cells of MM these days but I guess it can be a well established hypo. (Some may disagree.)
MM drugs are killing myeloma cells but can not touch on precursors (or cancer stem cells) of myeloma cells. This is the reason why ASCT fails almost without exception after certain period of time.
Think of CML. They have a very effective drug called Gleevec, but they need to use it indefinitely (for life). If they stop to use it, they will have CML relapsed. The reason is that Gleevec kills leukemia cells which manifest Philadelphia chromosome (a chromosomal abnormality) but Gleevec can not kill the precursor. Gleevec is a very expensive drug like Velcade and Revlimid, and it would cost you a fortune if you need to use it for life unless covered by insurance for life.
The only feasible solution is allo transplant, which can eliminate cancer stem cells from the bone marrow and replace it by the new immune system donated by a healthy (cancer free) person.
BTW in certain cancers, cancer stem cells are established such as melanoma (if my memory is correct)."
Denise followed-up with an answer:
"From what I understand, scientists are working on (and some MM money is funding) trying to identify and find target therapies for the MM stem cell. If I am not mistaken, they are also trying to identify things on MM cells that are similar to what is found in or on lymphoma cells so that a monoclonal antibody might be developed that would attack those cells and cure MM in much the way that certain lymphomas can be cured. Hopefully, someone will find the key in either of these 2 approaches so that a less risky alternative than allogeneic transplant can be used to cure MM patients."
Claudia, I agree there isn't enough being done to find a cure. The general and genetic research arm is working on this (MMRF, Bank on a Cure, etc.) But funding is much lower than drug studies. That's what you read about, since money makes news. For example, there are more stories written about the business side of a myeloma drug--by Reuters, Bloomberg, Wall Street Journal and pharma specific publications--than about general research which doesn't effect near term stock prices. Thanks for reading! Glad to help- Pat
Pat. I know two scientist working on the topic of this undercover myeloma cells. Perhaps the beacon could do an interview, to bring more beef to the thing. There are Dr. Reece from Prince Margeret Hospital, Toronto/Canada and Dr. Mascha Binder, from UKE Hamburg Eppendorf/Germany doing just now research. Perhaps they could exlplain us the answer to our questions better. And you as author and the beacon are a real platform to ask such things for us. Could you, Pat? Claudi
Hi Claudia-
Great suggestion! I have forwarded it to my editor and will keep you updated- Pat
Hi Pat and Claudi, I've the same topic. More interviews with experts as Dr. Binder and Dr. Reece -(More names: Rajkumar, Einsele, Barlogie, Goldschmidt, Bensinger a.s.o.) should be a must have for a patient/medical publication like the beacon. Even a weekly interview could be possible in such an active research field as multiple myeloma. Please speak for us with the experts and bring a actual dialogue in the web. Thanks so much, André
Andre'-
Great suggestion! I know The Beacon's managing editor, Boris, is looking into that. Thanks for reading! Pat
Thank your your article: from what I have seen and listen there would be no cure till we have a monoclonal antibody for MM, A very senior doctor with more than 40 years experience told me that. When I consult the clinical trials only in phase I there some monoclonal antibodies on the way. So I agree with you about the parcial and short steps the pharma companies are taking. Anyway to press or push throught this way?.
Thank you.
Hello Rita-
It is hard to know why things aren't progressing more quickly. There is more progress being made against myeloma than any other cancer, so it is hard to complain too much. FDA gets blamed a lot. Drug companies push hard for profits, of course. Greater awareness helps get our oncologists asking and expecting more from pharma. Guess we need to focus on positive at this point, right? Doesn't mean it isn't frustrating. Thanks for reading- Pat