Pat’s Place: We Need To Help Speed Up The Learning Curve For Newly Diagnosed Myeloma Patients
By the time I learned I had multiple myeloma, I was really sick. Bedridden from a fractured vertebra and high on narcotics, everything seemed surreal—like I was in a fog.
Sure, I searched around a bit online for information. But there weren’t as many good sources of info four years ago as there are now.
But even with newer sources of information, there are a number of barriers that slow patients from getting up-to-speed and learning as much as they can about multiple myeloma as soon as they can.
This is unfortunate. The first few months after diagnosis can be critical to a multiple myeloma patient’s future.
As more treatment options emerge, oncologists have an ever-widening array of therapy options to choose from.
This makes it even more imperative that a newly diagnosed patient seek counsel from at least one experienced myeloma specialist.
But even this may not be enough. Like many areas in medicine, multiple myeloma specialists don’t always agree on the best way to treat someone.
I’m constantly amazed at how many different treatment approaches there are, not only in the United States, but internationally as well.
The most important decision has to do with when to start treatment. Sometimes the decision is clear-cut. If a patient’s kidneys are failing or bones are crumbling, immediate action is required.
But often this isn’t the case. A patient’s protein counts may be rising, but without any measurable effect on their bones or kidneys. What then?
At that point, watching and waiting can turn into a nerve-racking game of chicken. Often the patient and/or physician want to jump in and begin treatment immediately.
NOT SO FAST! Unlike a lot of other cancers, it doesn’t necessarily help to start treating multiple myeloma early.
Once diagnosed, the patient should be carefully watched for symptoms. But does fatigue alone necessitate treatment? How about one or two bone lesions?
I try and visualize multiple myeloma therapy as a way to stretch time. Once the myeloma therapy “timer” starts, there is a finite amount of time that existing therapies will work.
Delay starting the timer and, theoretically, a person can live longer.
OK. Let’s jump ahead and assume a patient has reached the point where treatment is necessary. Now what?
How does a patient and their oncologist decide on where and how to begin treatment?
The “where” should be easy, right? Isn’t your oncologist going to treat you?
Maybe yes, maybe no. There are several different philosophies emerging for treating newly diagnosed, low-risk patients.
The standard of care is induction therapy, often followed by a stem cell transplant. But the University of Arkansas for Medical Sciences myeloma group advocates a much more aggressive approach called Total Therapy.
Total Therapy includes tandem transplants (two transplants spaced around four months apart), sandwiched by an aggressive induction and maintenance therapy approach.
This combination of tandem transplants and aggressive chemotherapy is achieving some exciting, long-term remission rates.
Conversely, some patients are choosing to forgo a stem cell transplant altogether, instead using a combination of new, novel agents to hopefully coax the myeloma into submission.
An oncologist is left to choose from lots of different approaches and different choices, involving when to start therapy and what drugs to use. Do you really think it is a good idea to leave such decisions up to your well-meaning, yet often inexperienced local, medical oncologist?
NO WAY! A second opinion prior to any major therapy decision is always a good idea—but especially for a newly diagnosed patient.
These are decisions best made by a team composed of a well-informed patient and caregiver, a local medical oncologist, and a myeloma specialist from a cancer center that specializes in treating multiple myeloma.
In a perfect world, an additional opinion from another specialist who approaches treatment from a different angle is an even better idea.
I understand this is difficult. So much to learn in so little time—and before everyone has a chance to get their sea legs under them.
But think about what’s at stake.
It may take a few extra weeks to start getting a handle on all of this. But fortunately, a majority of patients can afford to wait a bit while they decide what treatment regimen works best for them.
Taking a step back to learn about your cancer—and to find one or more specialists to aid in the decision-making process—is time well spent, in my opinion.
This is your life. Taking responsibility for the direction of your own care as early as possible could actually help you live longer.
Feel good and keep smiling! Pat
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I agree on the second opinion. My husband's local oncologist not only told us where to go for an oncologist who specializes in Multiple Myeloma, but consulted, when diagnosis was made, other oncologists, to ensure that the course of treatment mapped out for him was the "way to go." A good oncologist will do this. A good doctor will not try to be the "expert" in all things. My husband had aggressive chemo and then tandem stem cell transplants, 6 months apart. Revlamid was perscribed as maintenence after the second transplant. Now, 4 years after starting the Revlamid, my husband is off the meds, and has been stable since the 2nd transplant. THank Goodness for good doctors and for specilaists! Love your column, makes for a good read and lets us know that what we are feeling is normal and we are not alone! Thank you for writing it!
Pat: This is one of your best ever. I have been struggling to explain to my wife/caregiver why I have not yet started treatment despite the fatigue from my worsening anemia. Interesting UAMS buys into this "wait and see" philosophy despite their aggressive image. As long as there is no renal/bone involvement I will stay the course with things I can live with: a lot more sleep and a lot less energy to work in the yard. Thanks.
Michelle-
Thanks for reading! Glad you were encouraged to get a second opinion-Pat
Good, Gary! You are just buying precious time until the meter starts to run and you begin treatment- Pat
Pat, You are right on with this approach. It should be required reading for all new patients. I wish we could just will it so. Regards/Gary
Pat, thanks for this. I have been thinking a lot on how the Internet and Social Media can help here. In my opinion, a well-managed Social Media platform could be invaluable for patients who need to learn more about their disease and treatment options. What is your view/experience?
All the best, Stephanie
Stephanie, you say that a "well-managed Social Media platform could be invaluable for patients who need to learn more about their disease and treatment options." Maybe I'm confused about what you mean, but didn't you just describe this website?
Stephanie and Terry-
My concern is: Since the majority of newly diagnosed patients are already approaching 70 years old--and a lot of them men--I don't think they are "surfing the web" regularly, if at all. There's that hurdle, plus this denial thing. It can take years for a patient to come to grips with all of this--if ever. I'm afraid facebook and twitter aren't the answer here...
Well said Pat you helped me make sense of a very confusing period in my life. I was diagnosed back in January with smoldering Myeloma. So far no treatment though my blood test are changing for the worse every appointment at the cancer center. I have a 60 to 70% plasma cells count in my marrow and the FISH results came back and that puts me in a high risk group. I am so far pleased to say as of today no kidney problems or major bone problems. Like the Gary Blau said above I am putting up with the fatigue,sleeping 10 hours a day and minor aches and pain. I was struggling with the when are they going to do something I am tired of being tired...... But reading this article helped me to understand and to enjoy the time I have as long as I can before that day when the oncologist says it is time....
Thank You
Richard
Sorry you have to go through this, Richard. All I can say is every day buys you more time until the two new, highly effective new drugs pomalidomide and carfilzomib become available. That will give you lots of options when you and your doctor decide it is time for you to start treatment. Have you had a second opinion yet, or are you already receiving care at a major cancer center which specializes in myeloma? Best of luck- Pat
Thanks for the kind words Pat ... Fortunately I live in Tampa Florida so I am currently receiving care at Moffit Cancer center same as you from reading you posts. I will continue to monitor your post and let you know form time to time how I am doing ... Again thanks for your tremendous words of wisdom and support... Best of Luck to you as well ....
You bet, Richard! Thanks for keeping me/us updated- Pat
My husband just got diagnosed w/mm and its already in his bones so dr and 2nd opinion dr both recommend starting treatment after he has another bone density test, MRI of head/neck, pets can and echocardiogram. He does feel some pressure In his chest especially after exercise. He also gets tired for the anemia but not horrible- still has energy. Not sure where you are located but dr specialist recommended in Chicago is dr. Seema Singhal. Anyone on this site aware of her? Haven't met her I person yet though have talked and she seems very knowledgable and compassionate. Recommended treatment includes 1x/week chemo njection plus zometa infusion 1x/month to keep bones from deteriorating plus 1x/week taking 10 steroid pills. We are naturally afraid though also hopeful since we understand patients can live a long time w/this disease. Hope to get even more hope here!
You should be hopeful! Therapy isn't fun but for most of us it works. Majority of patients tolerate treatment side effects well enough to live relatively normal lives. And life expectancies are more than double what they were five years ago when I was diagnosed. So it isn't good news that your husband has multiple myeloma. But with any luck at all, things should settle down and you can both get your lives back soon. Good luck!
Take heart folks. I was diagnosed w/ mm October, 2008, and did not start treatment until March or April 2009. My plasma cells clocked in at about 43%. My IG3 (M-spike) was a little over 7K when I started my chemo. Within a year that protein number was 1620, and then I had a knee replacement which has gone well except for an infection unrelated to the surgery. Chemo was suspended for awhile. Now my protein level has risen to a little less than 5k, but seems to be receding gradually (unfortunately, very gradually). I was on thalidomide/prednisone and the side effects (PN) were terrible. In fact, I still have tingly feet and hands. I started revlimid and the side effects got worse and then switched to melphalan. In order to get a faster protein response I have switched back to 5mg/day (5 days) revlimid/day for a 21 day cycle on a 28 day cycle with 40mg/day dexamethason. My primary care physician recommended my oncologist ("For your cancer there is no other physician I would recommend. If I had what you have there is no other I would go to.) I have full confidence in his recommendation. In fact, my PC doc says I would die of something else besides MM. It may be under a bus or running into a wall; he didn't get specific. MM they say is incurable but treatable. However, I told my oncologist I will make him famous--I will be the first MM patient on record to be cured and he will go down a hero. By the way, I am 80, and in need of a shoulder replacement. I exercise three days a week and feel great with no kidney problems. Like I say folks, take heart and trust in the Lord. You'll be OK!
Michael M
Dear Pat and others,
After following through the exchanges of other cases, I am deciding to share my case with you all. While passing the milestone of 58 years old a few months ago, my IgG in June 2012 reached 69.3 g/l, though the overall conditions remains asymptomatic since being diagnosed as SMM or MM in March 2012. I have sought a number of second opinions and there are two schools of thoughts, i.e., most senior specialists in MM concluded that I must begin immediate treatment because of voluminous IgG, my doctors and few younger specialists were of opinion that by latest definition of CRAB and other normal blood factors, I am still SMM and should continue with tight monitoring control. One specialist recommends me for a clinical trials. Physically I dont see any change and feel normal but psychologically I am confused with the clinical/medical directions. Pls help say or share yr words of wisdom on my case. Many thanks to all. Best.
Boon in Switzerland
Hello Boon,
Whether or not high-risk smoldering myeloma should be actively treated is a subject of much research right now. Up until a year or two ago, most myeloma specialists would have advised against active treatment of any form of smoldering myeloma.
However, there are new research results indicating that active treatment of high-risk smoldering myeloma may both delay progression to symptomatic myeloma as well as provide an overall survival benefit.
So you are getting different recommendations because medical opinion on this subject is very much in a state of flux.
You can familiarize yourself more with the available data and other issues related to smoldering myeloma by going to this list of all the Beacon's news articles that have discussed smoldering myeloma. You also may find this interview with Dr. Ola Landgren, an NIH myeloma specialist who has done a lot of research on smoldering myeloma, particularly helpful and educational.
Once you are more familiar with the current research, you should be in a better position to discuss your situation with your doctors and come to a decision about what to do.
Good luck!
You may want to consider a low-toxicity, short-term approach with the goal of knocking your disease way back without (hopefully) altering its fundamental non-aggressive attributes and stable course. For example revlimid plus weekly,low-dose dex may be an option. Look for a recent review by Rajkumar on this site.
You will feel better in ways you don't appreciate now, likely improve functioning of your immune system, and, as result, likely put yourself in a much better position to benefit from vaccines and other prophylactic therapies on the horizon to keep your disease from advancing.
Just my opinion -- of course...but don't fear short-term, low-toxicity approaches ..but stay away from aggressive treatments....
I'm not sure the advice "stay away from aggressive treatments" is necessarily valid when it comes to smoldering myeloma ... particularly high-risk smoldering myeloma.
From what I've read, the current thinking is that MGUS, smoldering myeloma, and symtomatic myeloma are really just different forms of the same disease. That is, patients with MGUS and smoldering myeloma just have very early stages of the disease. In these patients, the disease hasn't become as pervasive and virulent as it is in patients with symptomatic patients.
That's why some myeloma specialists think that aggressively treating at least some forms of smoldering myeloma aggressively may actually make a lot of sense. If the disease is not yet very advanced, it may be an ideal time to stop it in its tracks. Completely. As in: the disease won't come back.
As I understand it, this is more or less the reason why the NIH study looking at Kyprolis, Revlimid, and dexamethasone as a treatment for high-risk smoldering myeloma is being done. Take a (relatively) aggressive treatment that has shown deep responses in many symptomatic myeloma patients, and see if it can actually wipe out the disease in a group of smoldering myeloma patients who, otherwise, would probably progress to symptomatic myeloma without any treatment or with just "low-toxicity" approaches.
Dear all,
A big thank to Myeloma Beacon Staff, anonymous and Cheryl for yr inputs which have broadened my knowledge and understanding as well lessened my confusion. I am required to undergo another comprehensive blood tests next week and will then meet with my attending doctors. The text on interview with Dr.Olga as well as other relevant articles deepen my understanding on the way forward how best to control the good guy inhabiting in my bone marrow.
I have no intention to turn the focus of this forum into an individual case, though, may I take this opportunity to pose one last issue for yr kind advice? My IgG in the past 4 months is in the range of 60-69 g/l and I went through the skeleton xray, 24 hr urine control, etc. My doctor said it was a slow progression but the other specialist said vice versa. Another senior specialist suggested that I undergo the PET/CT to definitely determine the lesion of bones. While my doctor tended to consider that such PET/CT may not really require at this stage.
Pls feel free to offer yr say. Many thanks to all again. BOON
Like so many other tough decisions myeloma patients and caregivers need to make (If and when to transplant, whether to use maintenance and if and when it might be OK to take a drug holiday - and for how long) deciding whether to treat smoldering myeloma sits near the top of the list. Maybe someone could pass along results which show a survival benefit that the Beacon staff mentioned earlier. That must be some long study... Ten years or more until identifying some type of survival benefit? At some point, I guess you need to "go with your gut." Best of luck! Pat
I am not sure that the NIH study is looking at Kyprolis, Revlimid, and dexamethasone as a treatment for high-risk smoldering myeloma. Aren't they instead monitoring such patients, and if they progress to symptomatic disease, THEN giving them the treatment? I might be wrong -- but that was my understanding.
Bear in mind that a patient can smolder for 3, 5, 10 years or longer. That said, there is one large study looking at weekly dex plus revlimid in such patients....
Hi Dan - This is the study I was referring to in my comment,
http://clinicaltrials.gov/ct2/show/NCT01572480
As I mentioned, it is looking at treating high-risk smoldering myeloma patients with Kyprolis, Revlimid, and dexamethasone.
Hi Pat - The research showing a survival benefit for active treatment (with Revlimid and dexamethasone) of high-risk smoldering myeloma was presented at ASH this past December. Here is a summary of the results.
http://www.myelomabeacon.com/news/2012/01/09/revlimid-lenalidomide-dexamethasone-combination-delays-disease-progression-in-patients-with-smoldering-multiple-myeloma-ash-2011/
How right you are -- that is a big deal...and thanks for correcting me.
I am patient that acquired a bleeding condition from my mgus. I always wondered if treatments would benefit me. My bleeding disorder might get resolved if I no longer have the mgus. It has never made sense that my low m-spike can cause me to get such a rare bad bleeding disorder. Has anyone of you with myeloma and bleeding have had there bleeding issues resolve after myeloma treatments?
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