Pat's Place: How Much Does A Multiple Myeloma Patient Need To Know About Various Treatment Options?
The days of a cancer patient blindly following the doctor's orders and rarely getting a second opinion are over. For multiple myeloma, there aren't just one or two standard treatment options.
Instead, you and your doctor will often face a choice of three or more treatment plans. Some physicians prefer certain approaches, so it’s important when you are first diagnosed to get an opinion from several different treatment centers and to select the one whose approach you are comfortable with.
Sometimes your treatment choices are limited by other underlying health issues—or by the specific type of myeloma you have. But if you are part of the larger patient community without such limitations, developing a therapy plan can involve many different choices.
What type of initial, or induction therapy, should your doctor try first? If that works, should the plan be to immediately undergo a stem cell transplant, or should you wait until after first relapse? What then? Should your doctor put you on ongoing maintenance therapy or recommend your body rest and simply watch and wait for the myeloma to return?
This can all seem overwhelming at times. I understand. Been there, doing that!
Like anything new, it takes time to catch on. Here's the good news: Myeloma tends to move slowly, giving you plenty of time to learn about your options if you follow sites like The Myeloma Beacon.
Let me make a few suggestions based on my experiences so far. Read about multiple myeloma a half hour or so every day. Use a journal to take notes. Ask your oncology nurse or doctor questions when you don't understand something. Get your doctor to sit down with you and explain his or her treatment plan. Write it down. Then ask why?
This happened to me yesterday. My oncologist, Dr. Alsina, recommended I get a positron emission tomography (PET) scan to help understand why there are new holes—or lesions—in my hip. I asked her, “Why a PET scan?” After all, I had already undergone x-rays and magnetic resonance imaging of the area. A new hole or “hot spot” was clearly visible on those films. She responded, “Changes in bones are non-specific. PET scan will help determine if these are related to myeloma or not.”
Makes sense. Next, I followed-up with my oncology nurse, Ally. We worked together to schedule the PET scan, a new bone survey, and my lab work—which takes up to a week to get back—for the week prior to my regular quarterly visit with Dr. Alsina. That way she would have all of the information together to review prior to our appointment.
Since I have this new “hot spot” in my hip—and my monoclonal protein numbers, or M-spike, is rising—Dr. Alsina, Ally, and other members of my health care team will sit down with me to discuss a new treatment plan.
Like coaches preparing for a big game, we will lay out a strategy that may include radiation and a change in my chemotherapy regimen. Since this is my first relapse since I was diagnosed four years ago, we will also discuss whether I should undergo a stem cell transplant—also my first.
It’s a lot of work to keep up and learn about this stuff. But when the time comes for a coach to develop strategy for the big game, he or she had better be prepared!
There isn't any game bigger than this one—it’s my life! I’m not going to blindly turn my future over to my doctor. I’m going to be an active participant in my treatment plan. What will you do?
If it makes you feel any better, here's something else to think about. Your doctor not only needs to be an expert in your type of multiple myeloma, but other types of myeloma as well—and lymphoma, leukemia, amyloidosis, and other blood cancers. If they are a general, medical oncologist, your doctor also needs to understand solid tumor pathology and therapies. This means lung, kidney, liver, and breast cancer, to name a few.
You have it easy! You only need to learn about one type of cancer—yours. You only need to follow the progress of one patient—you.
How much does a multiple myeloma patient need to know about various treatment options? Enough to understand your options whenever you sit down with your health care team to make decisions that will affect your treatment and your life.
You can do this! Feel good and keep smiling! Pat
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Dear Pat;
As usual a well written, well thought out article. I agree it is essential that we patients be part of our treatment process. It is our life. Unfortunately, the problem is even more challenging than you outlined. Once the treatment has been agreed to by you and your oncologist the question of dosing must be resolved(i.e how much of the meds to take at what frequency). The doctor will probably prescribe the standard dose which may not be appropriate for you. This standard dose was generated by the drug vendors to maximize the destruction of your myeloma with acceptable toxicities. It is based on a "population" of patients in the clinic. However, we are an individuals and not a population. We need a dosing regimen taylored to our abilities to absorb,metabolize and eliminate drugs. If we don't get the dosing right, we may control the myeloma but the toxicities may be so severe our quality of life will suffer.
Little Rock put out a paper about the value of PET scans in early detection of Myeloma activity. So the PET scan will also help your doctor to discover if there is any more Myeloma infiltration that what you have already uncovered.
Good luck Pat.
Gary, dosing is so problematic, as you have alluded. Doctor's experience in dispensing with many patients is so helpful. What we found is we just have to pay attention and ask the doctor to adjust as we go. There is little for them to know, except their experience, on how my husband will respond. It is truly different for everyone and then generally they expect this or that. Our local doc for instance won't dispense Thalidomide. He had too many patients with huge PN issues. The problem with that is, Dave responded very well to the Thalidomide and had little PN issues, very manageable let's say. So this doc is limiting the options for his patients. All the spinoffs of Thalidomide are less toxic and in some cases, for some patients, less effective. Sigh... It's complicated.
Great point, Gary! Readers take note... I agree dosing tends to be too high--maybe frequency, too! Pat
Thankyou Pat for your well written, honest and open article. I too have MM. Diagnosed Mar ’09, induction via Cyclophos- Dex and Thalid prior to ASCT with Melphalan Aug ’09- VGPR and stable since thankfully. I am obviously aware, in part, of the journey ahead I face so am grateful for informative, full and frank articles form fellow travellers like yourself. I look forward to reading of your deliberations moving forward and would like to take this opportunity to wish you every success. Thankyou again, good luck and God bless.
I'm glad you are doing so well, Jeffrey! Thanks for reading and I'm glad if I can help others like you- Pat
thank you Pat for all your help your directions are so helpful and gives me hope that I can come to understand this disease a little bit better. I wish I could afford a coordinator my husband is a huge support but even he gets frustrated with the system. I have a two wonderful dr. but I am finding out once you are in remission your GP plays a bigger role I've always like him but he is not on top of things for whatever reasons. I had a 24 catch last week ordered by him tests came back normal until I question it and the nurse said the protein was high no follow up indicated so back to my onogologist that gives me my aredia His office wants GP to follow up. I called him. has left town for several days no back up except emergency room l then call urologist he said I needed a kidney specialist meanwhile the dr. that gives me the aredia finally decided to give me the a blood that I needed so to make sure kidney was functioning It turned out it was but it was a real eye opener. I now have a kidney specialist and am in the process of finding a proactive GP It made for a very stressful day.thank God you are such help to the mm community keep up the good work mary louise Sorry if i dumb but there are no mm patients in my area
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With no CRAB & no underlying other medical issues or bone problems, my myeloma specialist put me on Rev/dex (typical dosing, 25mg/40mg) to cut down on the slowly rising M spike, a year after a transplant. Median response time (according to Celgene, maker of Revlimid) is 1.2 months. After 3 months I had no response & was taken off. A few days later I got a massive blood clot in my left leg from which I am recovering, though the PT hasn't normalized & my reds are down. Who knows what caused it...Rev/dex or the myeloma. All I know is, it was frightening having been exercising in my pool aerobics class the day before the ER. My treatment plan for now is in limbo. I feel myeloma remains mysterious & I can only read so much about options. My young dr. is on top of things & I trust him since I bring up info & he is aware of what I am saying. So I take each day with its mysteries & don't know where I am going. Suzanne
Hi Suzanne,
After my 3rd cycle of Rev/dx, my numbers plateaued for the next 2 months. After the 4th month, we almost decided to go to SCT with higher-than-desired M Spike. Luckily my last numbers took a major dive, so we are continuing with Rev/Dx. This was after I had completed a 6th cycle--about 5 months.
Hey Mary Louise-
You can't be "dumb"... You are smart enough to read The Myeloma Beacon! Seriously, your knowledge will grow with time and experience. Fortunately, sounds like things are going OK. Sorry your team isn't working together better. Stay on them! Good luck and glad we can help- Pat
Suzanne-
Me, too! I had clots after a few months on Revlimid and dex...
PE (clots in my lungs) put me in the hospital for five days. I have been on warfarin ever since. Sorry your myeloma is coming back... Time to try Velcade? Pat
Lori/Pat:
Individualizing the dose for each patient is the key. For example, the toxic dose for thalidomide may be so low for some patients that it is ineffective in dealing with the MM while for others the standard dose is fine (Dave's experience). The challenge is to know where to start the dosing. Pat you suggest starting with a low dose and gradually increasing it. A better way is to know how you will respond "before" you start your treatment. My colleagues and I at Purdue believe it can be done. We have just published a retrospective study on gabapentin, used to treat PN in MM patients. The Hutchison Cancer Center in Seattle recently published a paper where individualizing the dosing for cyclophosphamide gave the same efficacy but minimized toxicities.
We have been trying to get a prospective clinical trial going using thalidomide, dexamethasone and bortezomib to demonstrate our approach for MM patients to the medical community but we can't find the funding. I think being a MM patient myself deludes the funding organizations into disbelieving my objectivity.
My advice, is to keep asking your oncologist(s) if they are familiar with the individualizing the dosing concept promoted by some of the Cancer Care Engineering folks at Purdue. We solicit their support (and yours) in this important endeavor
Wow! Thanks, Gary! Pat
Pat: Great article!! My husband was diagnosed in October, 2010 with Stage III, aggressive, MM. His oncologist put him on Velcade/Dex and the dosage has always been based on his weight, at the beginning of each cycle.
His M-Spike has now plateaued at 0.3 and Chemo has been stopped, so that he can get ready for a SCT, in March.
Best of luck to you!
Sarah
Best of luck to your husband, Sarah! Pat
Dear Pat,
Your last words put a smile on my face and will be my mantra for today, "You can do this! . . ." Pat
Thanks for all the positive energy you send to lift our spirits. Linda
So glad it helped! Pat
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