Pat’s Place: Multiple Myeloma Awareness Applies To Patients, Too
Last month I promised to share details of my new myeloma treatment plan. As I write this, I’m waiting to meet with a leading myeloma specialist at the University of Iowa for a second opinion.
I spent several days here undergoing extensive testing, including a bone marrow biopsy, PET scan, and MRI that looked at two thirds of my body and took an excruciatingly long 80 minutes; that’s a long time to hold still!
I’m anxious to go over the genetic data that was collected from my biopsy, along with any insights the specialist might have now that he has seen my updated scans and blood work. Then I’m going to hand deliver the films to my hometown specialist at Mayo Clinic, Jacksonville, so I can get his input.
I’m very sorry, but it’s going to be another month before I can let you know the decisions we’ve made and why.
In the meantime, I wanted to remind you that March has been designated Multiple Myeloma Awareness Month. Most everyone involved has embraced the designation: non-profits, drug companies, and support groups.
I was never a big fan of this campaign, but I’ve come around in recent years. My only criticism is that it will take more than a month every year to get our story out and understood. I’m sure the national attention the new HBO special, "Killing Cancer," has received will help; the first 10 minutes feature the Mayo Clinic’s promising new measles viral therapy. That’s well-deserved and priceless attention.
Yes, it’s important to try and educate the public about our bone marrow cancer. It’s even more important to help doctors and nurses who don’t specialize in oncology understand and watch for symptoms that could help them make an early and accurate diagnosis.
But there’s another group of people that we need to reach: myeloma patients, caregivers, and their families. I can’t think of another cancer where it’s as important – no, imperative – for a patient to be well versed about their disease and treatment options.
Farydak (panobinostat) was just approved by the U.S. Food and Drug Administration (FDA) last week. Combine FDA-approved myeloma therapies – and therapy combinations – with crossover drugs used to help treat other cancers, and your doctor is faced with dozens of possible treatment options.
And don’t forget about transplants. Should your doctor perform an autologous stem cell transplant right away or wait? How about a tandem auto? Or for younger, high-risk patients, maybe an allogeneic (donor) transplant might be the way to go.
But it isn’t that easy. What type of allo should your doctor try? Full-blown or mini allo? Or one using cord bood? Inpatient or outpatient?
Or what about trying one of the hundreds of clinical trials available at any given time?
Knowing the basics about the disease and treatment options, and some of the commonly used terms, can really help a patient and caregiver communicate clearly with their doctor, who is hopefully a myeloma specialist.
In the “old days,” doctors sometimes seemed to be talking down to their patients. Fortunately, that attitude is changing. I have found that understanding the basics about how myeloma therapies work – and which options might work best at any given time – helps me get more information from my doctors. They speak with me more candidly and in more detail. This can be a real advantage for all involved.
Working as a team is the way to go. You know the old saying, “Two heads are better than one.” Three or four heads are even better, as long as there’s a coach (you) running the show so things don’t get too garbled.
Clear communication is important for another reason: it’s up to patients to help educate their doctors and nurses about side effects they experience that directly impact their quality of life. Which drug is causing a harmful side effect isn’t always an easy thing to sort out in a world of combination therapies. Sometimes, something as simple as dosing in a different way – or at a different time – can make a big difference. As patients, it’s up to us to let our doctors know when something isn’t working well for us – or when it is.
So spread the word! During March (and every other month), continue to educate yourself about myeloma and myeloma therapies. Focus on putting together a top-notch medical team, facilitating communication between team members about side effects and how well things are working for you.
It’s a lot of work, but no one ever said living with cancer would be easy! The key word here is “living.” Let’s all work together to keep it that way.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi Pat. Just wanted to say thanks for taking the time to write these columns. As a newly diagnosed MM patient, it's all massively complicated, confusing and overwhelming. So hearing about 'the road ahead', and all you've been through, helps to give me perspective.
RT
Pat
I am eagerly looking forward to your discussion of your newly collected data. 80 minutes in an MRI tube! I am borderline claustrophobic, so I would have too be sedated to last that long.
Good communication with our Doctirs is paramount and I was able to achieve that here in Canada, at the London Regional Cancer Program. Everyone on the team, from Doctors to nurses, to the office staff who book appointments to the pharmacists dispensing meds are patient focused. For me this was great because as a retired chemical engineer, I wanted my preferences and choices respected and discussed in a constructive way. I turned down some drugs that the doctors thought I should take. they dealt with my refusals positively as they could see I had done my homework and had alternative choices that could give similar benefits.
Being an engineer also makes me data driven, so the staff give me copies of all my test data,mince they know I plot or graph everything, looking for trends or changes. Even my oncologist switched from looking at sheets with tables of numbers to looking at graphs of data. Is it going up, down, staying flat? Much easier way to look at data, then tables of numbers.
Explaining MM to my friends is the most difficult. They say, 'you look so good'. They don't or can't comprehend the issues associated with this disease. How can it affect the bones, the kidneys, the liver ...? Why does your chemo not cause side effects like hair loss, loss of appetite, nausea? Why don't you shake hands, or go to large gatherings? So a month to highlight MM every year may eventually help the general understanding about our disease and its manifestations.
Looking forward to seeing your results. Can you graph them for me?
Love hearing from my readers; best part of my day! I have my results and – surprise – they are ambiguous; no clear way to go. Late stage myeloma isn't easy, no matter how much you know about it.
Even after 3 years it is overwhelming how many treatments & combinations there are, especially now after our daughters relapse. She has started a clinical trial of pomalydt, Dex & opromozib. The fatigue is overwhelming. She had a talk with the doctor about quality of life & now they are trying her taking the Pomalyst at night. If that doesn't work they will reduce the dosage. I am another set of ears for her & can ask questions she may not have thought of. We are even now looking into another trial that may have less side effects. Patients need to try & stay on top of things. Even though I may not understand everything I get the doctors to explain.
Dear Mr. Killingsworth,
Yours happens to be the first Myeloma Beacon column I read after my father's devastating diagnosis. Now he has had his induction therapy and the ASCT. We are keeping our fingers crossed for the final results, if I may call them that. But, through it all, I must acknowledge that it has been the Beacon, and to begin with your column that I read that time, that has been acting like an anchor to me, in a certain sense, in the rough seas. Cannot thank you enough!
Wish you a good, successful treatment regimen and all the health and wellbeing!
Upasana
India
Pat, I agree completely with you about keeping informed about treatments. I grew up when doctors did not talk to women because they were not interested in those things. Instead they talked to their husbands. Things have really changed a lot.
I know how little my doctors know about myeloma. Some of them look at me and say What is that? Is it skin cancer? Oh the confusion. My internist is very interested and I keep telling I am educating him. He likes to have copies of all my results, so I have my oncologists send them to him. He now has another patient who has had a stem cell transplant, so he is more up to date on what to look for with this patient.
Our city mayor at the council meeting this week issued a proclamation for MM awareness week and some information was given. I am trying to spread the word.
Hi Pat,
Amen! Another great column!
It seems to me that we are in a transition phase in the history of multiple myeloma treatment. Fifteen or 20 years ago, there were not many treatment options, and, unfortunately, it didn't much matter what treatment you got. The outcome was pretty grim regardless. Fifteen or 20 years into the future, I hope that there will be a cure, or a way to manage the disease long-term, or at least the regular use of genetics testing to provide data-based guidance in therapy choices.
But right now, we're in that middle area where there are lots of treatment options (fortunately!), but an incomplete understanding of which option is best for which person at which time.
So, while multiple myeloma treatment is in this transition period, there's a burden on us patients and caregivers to be educated, active participants in the decisions about our own care. As you've stated so well. Thanks!
Best wishes to you in whatever treatment path you and your team decide to pursue. You have many people rooting for you!
Mike
A kind shout-out from India? I'm so glad I can help! Listen, patient education is vitally important. So is getting to a specialist. But let me ask: do any of you know a more informed patient that me? It isn't helping! Trouble is, no data to support possible decisions. All trial and error. Which makes transplanting extra difficult at this stage; it isn't like trying a new drug for a month or two, then switching to another. Before, during and after--we're talking about five or six months. That's a lot of time for a self imposed hangover when I may only live another year or two anyway. And the odds it will work? No one knows! Remember the old computer saying, "Garbage in, garbage out?" That's what it feels like. Where are the late stage studies that help our docs decide which therapy to try next?
Hello Pat
It is great to see someone so upbeat in your situation. I find the more I think I know about MM and the ever expanding complexity of the research arena means it is hard work to decipher what I need to know to make the best decisions for my own situation. Although I have MM specialists involved for the drugs, the other disciplines involved in working with MM patients, such as orthopaedics / radiologists, renal, have their own perspectives. Dealing with my treatment here in the UK, clinicians have to follow a largely prescribed protocol due to the centrally funded health care system, where cost is a key element of what is available outside of a trial. In the US, there seem to be more options possible, if the insurance will pay.
It is not just lack of late stage studies that is problematic, but the way trials tend to be primarily for pharma to test out a potential MM product for regulatory approval. In trying to weigh up risks, I find that the research on MM undertaken lacks a clear pattern for easy analysis – e.g. robust, head-to-head assessment of the different drug combinations / treatments possible, dosages / regimens, outcomes, patient populations best served with their pre-treatment clinical picture.
It does seem moving from a 'good guess' to a more 'targeted approach' to MM is difficult for us and for our specialists. That is why there divergent views abound as to the treatment of MM.
I hope you and your doctors come up with something that gives you the quality of life you deserve. It is not going to be an easy one.
Hello, Pat!
Thanks so much for the column (I've been thinking about you) and for keeping folks informed of what's going on for you. All the best as you and your Mayo team think about your future treatment. Second opinions are definitely part of the options available to us patients.
I just finished reading "The Emperor of All Maladies: the Biography of Cancer". Thanks for reminding me of the PBS documentary by Ken Burns. Airs the last of March. Cancer is a formidable opponent, but so are those working / experiencing this disease.
Take good care.
Sylvia
Glad you are getting all of this data to consider. Hope you will share this at our support group meeting. Your insight is so important to those new to this disease. You have the knowledge and the ability to share it. Look forward to seeing you next week.
Very wise, Edna! I agree with you. And thanks, Sylvia and Dianna. We all need to stick together, share, and learn as much as we can ...
Pat, I agree with you completely about no data to support decisions. It seems the standard of induction, SCT and maintenance is the protocol, but when those fail, it is "Well, let's try this" followed by another "Let's try this" when things fail. I am trying to stay informed, but, as I said, the info is overwhelming. I find it hard to find data, especially with trials, so how is someone to know what to choose.
Pat,
I look at the stats: Mean time to disease progression, % of patients making it to that time, % of patients dropping out due to side effects, what side effects. Since most drug trials use MM veterans to test on, the data is perfect for us veterans.
Being a stats guy, I try to look at the % of patients who drop out due to side effect symptoms and what those side effects were. Put those numbers in a graph for the potential treatments you could be looking at, and pick the one with the best results.
For example, Drug A: 39% make it to mean time to disease progression, 18 months MTTDP, 5% drop out rate due to side effects.
Drug B: 55% make it to MTTDP, 11.7 months MTTDP, 12% drop out due to side effects.
Etc.
Look at the graph and pick the best for ourself.
Exactly, TJ13. We're the lab rats! Eric, good tip graphing results. Yes, we can extrapolate PFS for individual trials. Your premise is good, but big difference from trial to trial; how many previous therapies did patients fail? How well does a drug work if you've become refractory to a drug in the same class? Complicated stuff. No reason your technique can't work with a few more variables. But isn't that the doctors job? To prescribe most likely therapy to work for us? Think they're charting a graph on our behalf? Don't think so!
The problem is the heterogeneous nature of the disease. That is why there is no true standard protocol that works for everyone, especially after first relapse. Some patients that are refractory to Velcade will not respond with the use of Kyprolis, some however will. The same is true with Revlimid and Pomalyst. The guessing game is caused by the nature of the disease itself. Even with so called standard-risk patients, the effectiveness of a given treatment as well as side effects experienced will vary.
I have to agree with Ron. From putting my ears in the wind, I hear others also react very different on the same regimens. I wish you, Pat, and your oncologist a lot of wisdom and also a very lucky gamble in the upcoming decisions to make. May the good spirits be on your side. Thank you for sharing such a difficult and complicated crossroad, Pat.
Pat, I have been treated at the University of Iowa since July 2013, when I was first diagnosed. I underwent a double SCT, and am starting the second year of maintenance drugs. I go thru MRI and bone marrow biopsy every 3 months and labs every 2 weeks. So far, still in remission, but my fatigue and neuropathy and muscle pain some days is bad (from the drugs).
It was a difficult decision to do this treatment and I got 3 different opinions before I started and did not know what to do. I had no symptoms and no obvious disease except elevated proteins and 50% plasma cells in bone marrow. I am considered at more risk due to p 13 deletion, so I chose the transplants. But many of the readers express my same feelings, the treatment seems to be changing, but different at each facility! And there is so many test results to consider! And I'm a health care provider!
I hope you find the best treatment for you with good results!! I would say to any one with this disease to see a doctor who is a specialist in treating MM, as the local oncologists just don't always know the latest treatments and they treat many different cancers.
Of course Ron is right. We understand the problem. But percentages would be nice. Something to go on. We do have some of that when a trial reports how many patients respond to a drug after becoming refractory to another. Still a long way from a road map. Guess what people hear is true: by the time a patient relapses more than once, treatment becomes more art than science.
Hi Pat.
I have been taking Revlimid for a couple of years and so far in remission. My problem is I cannot find detail of disease, what to expect. Transportation is scare, so have tried to rely on computer, but not having much luck. Am so glad I found this spot.
Sincerely,
katie
I also wondered if the folks with more complications from the disease are excluded from trials which would explain the limited choices of evidence based treatment options. When someone has kidney damage from the disease and/or progressing lesions, anemia, etc, what trials are open to these people? Dare I say none? It's great that there are new drugs being developed and newly diagnosed patients have more options, but what's being done to study those patients whose disease is progressing?
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