Pat’s Place: Anger Rises Among Some Multiple Myeloma Patients As They Await A Cure
For some time, I have been reading about how close a number of multiple myeloma experts feel they are to turning multiple myeloma into a chronic disease.
This should be good news, right? Novel therapy agents are delaying disease progression for years in a large majority of patients. Median life expectancy has also jumped up, and these same experts expect that this number should continue to rise quickly.
But a number of multiple myeloma patients are saying “NOT SO FAST!”
One fellow patient hates when doctors speak proudly about multiple myeloma soon becoming a “chronic disease.” He feels (and I agree!) that myeloma is catastrophic, and the drugs used to combat it are highly toxic. “Where is the urgency?” he asks. “Shouldn’t there be a call to activism?”
A son, whose father passed-away last year after a 10-year fight against myeloma, also contacted me recently and asked, “Where is the cure?”
These frustrated and anxious people affected by myeloma have a point.
At the same time, I listened last week to an enthusiastic hematologist in Atlanta describe the positive progress that has been made over the last five or six years. A 23-year veteran of the myeloma wars, this physician was clearly pleased he could offer multiple myeloma patients effective treatment options. In previous years, he only had a few options that only worked for a few short months or maybe a year or two.
I can see both points of view. Yes, clearly improvements have been made, and lots of patients are living longer. But if it’s your mother, father, spouse, son, daughter, or friend who is dying, a few extra years just isn’t good enough.
The comments I shared above aren’t the first I have heard criticize the current approach by hematologists, oncologists, and researchers to “settle” for buying patients a few more months or years of life.
Which begs the question: Why is the emphasis on turning multiple myeloma into a chronic disease?
One answer is simple enough: Because they can!
Multiple myeloma tends to be responsive to a number of different types of treatment. But they rarely work forever.
No matter how many different combinations of drugs researchers try, and no matter how many new drugs they develop, none of them seem to work for long.
So common sense tells them: Theoretically, if they can develop enough new, different therapy options, then chances are a patient can use them one after another—or in combination—indefinitely.
But challenges to this approach include the wear and tear on one’s body from taking poisonous chemotherapy month after month, as well as the risk that one may develop a secondary cancer or serious complications as a result of never-ending treatment.
And let’s not forget about the cost. To remind you that multiple myeloma therapy isn’t cheap is an understatement.
Which leads us into considering another, more cynical, insidious explanation: The vast majority of research studies are funded by drug companies. If you were developing a business model for a pharmaceutical company, which would you prefer: Find a cure, or treat patients for decades?
I’m not implying there are master planners sitting in a secret room somewhere, plotting a way to make cancer patients rely on or become addicted to novel therapy agents. Corporations would never do that, would they? (Mmm… Why was that elderly cancer patient sitting, slumped over, smoking outside our cancer clinic this afternoon?)
No, I believe the vast majority of researchers, doctors, and even business executives have the patients’ best interests at heart. But you must admit that the system is set up to encourage the development of drugs that don’t cure cancer—but instead just help a little.
I believe the real reason this happens is it’s easier. It’s easier to develop a drug that is similar to another drug that works. Let’s face it. Truly unique ideas are rare—that’s what makes them unique.
So instead of a cure, we get lots of similar, copycat drugs. Plus, making a commitment to find a cure may take decades. It would be prohibitively expensive. I’m not sure stockholders would be that patient.
What do you think? What can we do?
Keep pushing for a cure, while we appreciate every extra day the new drugs buy us. (Pun intended!)
Feel good and keep smiling! Pat
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If myeloma therapy would be like having diabetis I would call it chronic. But chemotherapy or SCT is - as you mentioned it - is highly toxic and no fun at all. And many younger patients are passing away.
We are not right there! I have read articles from 2005, where scientists at an IMF round table talked about cure coming soon. They're of course no prophets. But my point is, that - if you are inside it - you know why most of us feel not happy with the status quo and all this talking how far we've come and what a good quality of life we have. I HAVE PAIN! I FEEL BAD! ...with all these side effects and hospital visits and the fear of relapse. Of course scientist did a great job. Definitely! But this couldn't be the goal. One point I want to mention is, that there are so many promising new agents on the market in phase I studies out there. Will they hit the market? With the new knowledge provided there should be the chance to start combination therapy as in HIV to overcome resistance. Remember, if you have HIV, you could live a nearly normal life. As a myeloma patients you have the new normal. I think, the way of the MMRF is the right one. They push and push and push. I stop and will open my online banking account to do a donation! Good text, Pat.
Hi Pat!
Great and provocative blog. First off, you rock! Your writing is simple, accessible and raises great questions. Secondly, It is kind of a backwards system isn't it? There is incentive to not discover a cure because all the training, equipment and millions of dollars that have been invested into a particular product pipeline would end. Pharma's dream (it seems) is to make all diseases chronic (along with the demand for their drugs). I have not worked in pharma, but coming from a large academic center, I can say that the doctors there genuinely want to find a cure. But we literally are just scratching the surface of the genome, let alone the epi-genome. I have no doubt that a cure for cancer (and the key to longevity for that matter) lies in unlocking the genome but there are a mind boggling number of pathways and gene products involved in cancer. It will just take more time. And I agree, it will also take activism. Until enough people demand a cure, and enough dollars are invested in specifically finding a cure, we will have better maintenance medications.
Blogs like yours are a step in the right direction
All my best to you Pat!!
Kimberly Blozie
Hi Pat, great column. You know, I'm a supporter from germany. My opinion: There are some cancers that can be cured today. In this cancers it is not the top priority to understand the whole genome. More important is, that we know the mechanism, that is responsible for relapse. Bart Barlogie stated at an interview that they discoverd Thalidomide by chance not by geniality. Perhaps the blocking of one pathway will be the answer. We have to uncover the agent, that shoot relapse out of race. And one more thing: I remember Kenneth Anderson comparing myeloma with tuberculosis. I think, you can compare myeloma with HIV. Why not? Thomas
Nice article Pat
If I were the CEO of a drug company I would be the richest guy around if my company found the cure for multiple myeloma. I would have every incentive to find the cure.
And if I were a scientific investigative journalist, I would be extremely successful if I discovered the causes of multiple myleloma.
Maybe MM won't be treated as a chronic disease in my lifetime, but there is no better system on the planet for finding newer therapies that one day will allow us to treat MM as a chronic disease. And there is no better system for finding the causes of MM either.
As a humorous aside, Viagra used to be a drug only used to treat a heart condition. But the researchers took note when the patients didn't want to return the unused portion of their prescription.
Peter-
I agree. Even if docs learn to keep us alive for decades--until the drugs are made easier on our bodies and risks minimized (like secondary cancers, for example) I don't think myeloma can be compared to diabetes or HIV.
Kimberly, who commented after you, makes another good point. Researchers want to find a cure. But it isn't easy. Thanks both of you for reading and the kind words. Now let's see what we all can do about it! Pat
I think it is the "process" often used in disease modalities such as this. It is not unique to Myeloma. First get it under control, manage it, cure. Having said that, there seems to be more incentive for the former than the latter and I can only hope and pray that researchers are more interested in finding the cause and then treatment, than just managing the symptoms. Since they still say they don't know the cause I don't know how realistic it is for them to find a cure, as frustrating as that clearly is. Treating it as a chronic disease with continuing treatment is the new prevailing view and I too hate it, with a passion. The drugs are horribly toxic and it doesn't take a genius or an MD to know that it is not harmless.
But what would you do to drive 65mph? Let's think about it:
a.) Fundraising - Donate to MMRF or others
b.) Lobbyism - Talk to drug companies
c.) Public Relations - Put stories Inside Media
d.) Grassroots - Motivate famous/wealthy patients
e.) Clinic - Talk to experts, ask for milestones
f.) Trials - Motivate patients for clinical trials
More ideas?
Hello to our friends in Germany! Thomas, in most cases HIV can be controlled by relatively inexpensive drugs which cause limited side effects. With myeloma, the drugs are beyond expensive, and the side-effects can eventually be fatal. We certainly aren't there yet. Doesn't mean we can't hope for breakthrough you describe, or a more affordable long-term therapy which works better. Some day...
Pat
Stan-
Good point. One would think you are correct. But it seems to me the system is the real villian here. Clinical trials, the FDA, the cost. The fact drug companies only test their own products. How wrong is that? Some broke scientist is sitting at his or her desk, frustrated they can't get their idea into even pre-clinical trials. I'm not anti-drug company. But the system stinks! Pat
Lori-
I agree with everything you say. I started out acting as a mouthpiece for frustrated patients and family members who were contacting me. But the more I thought about it, the more I realized these good people have a point: Progress is great! But the concern is researchers and myeloma specialists may be using a frontage road. Traffic is moving along at 30 mph, when we could be going 65! Pat
One may as well accept the fact that we are not only the thumb of
big pharma but the FDA who protects big pharma. Why cure a
disease when you can have a long term customer. Also, who has
the deepest pockets big pharma and we have allowed this to
happen because we have been silent.
Hi Peter-
Lobbying is great idea... Nice thing about government funds is they aren't just controlled by drug companies. Too bad that is getting cut. But everyone knows someone with cancer. Maybe activism can preserve at least most of the funding. The clinical trial thing is really important! I'm sure I will get involved after my SCT- Pat
Wow, what a conversation! We were recently at Dana-Farber and were told that they believe a cure is 5 – 10 years away. Whether or not this is true has yet to be seen, but I will hold on to the belief that MM will be cured soon because there is no benefit to me or EJ in believing otherwise.
Yes, pharmaceutical companies are business enterprises driven by profit, but they are not short sighted. Drugs come to market because they are proven effective for treatment of a disease or illness. But once they are on the market, the doors are open to find other uses for them. A quick search of clincialtrials.gov shows that Velcade and Revlimid are being studied for use in cancers as diverse as prostate cancer, melanoma and chronic kidney disease.
I am a DES daughter. Diethlystibestrol is a synthetic estrogen that was given to millions of pregnant women between 1940 – 1970 because the medical profession believed it would help prevent miscarriage and insure a healthy full term pregnancy. It was later shown to cause cancer and fertility problems in the daughters of women who took it. It was also, I believe, one of the first liability law suits ever brought against a drug company.
For those who are on Thalidomide I’m sure you are aware of the problems with birth defects associated with that drug. And who can forget Fen-Phen, which was taken off the market because it caused pulmonary hypertension, or Vioxx which was taken off the market because of its association with an increased risk of heart attack and stroke.
While the clinical trial process is far from perfect, it is the only one we have. I’ll take slow and steady progress over the horrors a drug like Thalidomide can cause.
I recently spoke to a 17-year MM survivor who credited his longevity to a clinical trial. However, the drug he was on was never brought to market because they could not get enough people to participate in the trial. I think our own lack of willingness to participate in clinical trials is a huge part of the reason a cure for MM is not farther along.
Lyn
Hi "Christa's Mom", that's interesting and promising. Did the experts at Dana Faber say, which milestones
are neesws for a cure in 5 years? Would Be great to hear more. I'm with you. Trials are important. But I understand too, that patients don't want to get a placebo against their myeloma like mice. To get more patients in phase III trials,
the approval-system has to be changed a bit! What do you think? Peter
Hi Peter-
My understanding is placebo type trials are not used in cancer patients. Instead, the new therapy is compared to an older, "standard of care." For example, half the patients in a study would take Rev/dex, while the other half take Rev/dex/vorinostat. That way even those who aren't getting the new drug still are treated. Sometimes, everyone in the trial gets the new medication--so I'm not sure why more patients don't participate. Lack of access and info from their docs, probably- Pat
Unfortunately, our time was limited at Dana-Farber and we did not have the opportunity to fully explore the 5 – 10 year statement.
I agree with Pat. Phase III trials don’t involve placebos. They are designed to test the effectiveness of a new treatment against an existing “best in class” treatment. Researchers want to improve upon what is already available, and by the time a treatment gets to Phase III, there is a belief that it is at least as good, if not better than the current accepted treatment. A trial may be a good option if the new drug/protocol is being tested against a drug/protocol your doctor is suggesting you try. At a minimum, you get the treatment your doctor would have put you on. The risk is that even though the Phase I and II trials have shown promise, the new drug/protocol in the end may not be as effective.
Lyn
Pat-, Lyn-, phase III- trial do often involve placebo. Have a look at clinicaltrials.gov
http://clinicaltrialsfeeds.org/clinical-trials/results/term=Drug%3A+Placebo,+Velcade+and+dexamethasone
If I'm wrong - great!!!
The trial is to see if adding siltuximab to velcade/dex is an improvement over velcade/dex. One arm of the study gets siltuximab/velcade/dex, the other gets a placebo/velcade/dex. Even if you are in the placebo/velcade/dex arm you are beting treated with a current, "best in class" treatment option.
Lyn
I think this has been and interesting discussion, and really shows the confusion that exists over clinical trials! When EJ was first diagnosed, I found many articles that suggested participation in clinical trials. I couldn't see the benefit because I also thought one arm of the trial was a placebo. Only when I realized that the second arm was against a current, approved protocol did I start to see the benefits.
Lyn
Peter-
Good news! We are both right! Yes, placebos are used regularly. But only in addition to a "standard of care" therapy. Note Christa's Mom's comment. Go back to the link you forwarded and you will see what I mean. For example, the second study features ponobinostat, a promising new novel therapy agent, with Velcade and dex. The placebo replaces the panobinostat, leaving one half of the patients using only Velcade and dex--still a standard treatment which often works well.
BUT I'M SO GLAD YOU BROUGHT THIS UP! IT MAY VERY WELL BE THIS TYPE OF MISUNDERSTANDING WHICH SLOWS PARTICIPATION DOWN IN A LOT OF CLINICAL STUDIES.
There are other reasons, too. But this is a big one. Thanks for helping bring that to light! Pat
Yes it has, Lyn. Thank you! Pat
As you said MM is a catastrophic. It is unrealistic to believe that a treatment agent can be found to completely rid our bodies of MM. There appears to be growing evidence that cancerous stem cells every bit as wondrous as our hematopoetic stem cells are probably tucked away in our marrow ready to be differentiated into cancerous plasma cells. We could marshal our activism attention to promote epidemiology studies directed to reducing the incidence of MM decreases for future generation. However,this does little to help us here and now. Rather than getting angry, what we can do is become active in improving our quality of life in dealing with the current crop of toxic treatment agents. This goal seems to have been lost in the rush to find the "cure" or eliminate the cancer. At least for us golden oldies who comprise the majority of MM patients improving the quality of life by minimizing treatment toxicities may be our definition of a cure.
Here, here! Very well said! Pat
Ok..If someone could help. When I was 16, my grandmother of 65 yrs of age passed away from multiple myeloma. I am 54 now, on March 2 my mother died of Multiple myeloma at the age of 77..When I was 16 our family was told this was not hereditary not this not that, well it appears to be! I am afraid..seeing them both pass of this horrid disease has just devastated me. Is this out of the norm? Is this the norm? Have I passed this on to my children? Can someone help?
Adrienne-
Myeloma docs still insist myeloma is not passed down from one family member to another. An expert would first ask if your family was exposed to any common carcinogens when they were children.
You have a right to be concerned. These same experts might argue this is "just a coincidence." Whether to believe them or not is up to you.
I'm certainly not an expert. Try calling the IMF Patient Hotline at 800-452-2873 and ask one of the myeloma counselors about it. I wouldn't be "staying up at night" and worrying about it. Note your mom and grandmother both died when they were older than you. But concern and research sounds more than reasonable. Good luck- Pat
I know how Adrienne feels. My mother and my father both died from Multiple Myeloma.
The odd thing is they married during WWII, were raised in different states, and only lived together for a few months. After the war they divorced and lived in states thousands of miles apart. Neither were ever involved in farming or occupations that would have exposed them to pesticides.
When they died over a decade ago, I was told that MM was purely enviornmental....now I am finding multiple studies in the US and Europe that do show some familial connection. You can google MM in families and most of the research articles appear.
I guess those of us with this strong family connection will just have to wait it out and see what studies are done in the future.
Common sense tells me there is a connection. I'm just not sure research studies support the genetic link theory. But it must be true: Men get myeloma more often than women. Blacks more often than whites. Isn't that genetic? Bottom line: The cause doesn't matter. It's what you do with your time before and after you are diagnosed- Pat
Pat:
Your columns have been great Pat. Thanks for writing them.
I've fallen on either side of the 'chronic' conversation. Sometimes it gives me a lift, other times it's 'are they kidding?' There's always three sides to every coin. When the myeloma docs in the know start talking 'chronic' then I chalk it up to their optimism in the face of a complicated scientific problem. I look at those that deny the hope of moving the disease to chronic as the pragmatic realists, the other side of the coin. As long as so many are putting so much of their lives into finding a way out, I'll take it either way and try to hang on until the next break through, maybe get a few more years of wondering who's right.
Regarding whether myeloma can be passed to your children, I had the conversation with each of my three sons and their wives. I tried to focus on them understanding what first symptoms to be aware of and the importance of early detection rathere than percentages and probabilities. One conversation was absolutely great, one was 'fine' and the other was a little difficult. Three sides to every coin.
Keep on writin'
Best,
Michael Lapides
You are quite welcome! Lots to ponder...
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