Pat’s Place: Things You Can Do To Take Control Of Your Multiple Myeloma Therapy
Last week I discussed the advantages and disadvantages of a growing number of multiple myeloma therapy options.
How could there be any disadvantages to more options? I mentioned how even oncologists and hematologists that specialize in treating multiple myeloma will only be guessing when deciding which drugs to use, when, and at what dose.
Then I suggested how with choice comes responsibility. Responsibility for the patient and caregiver to learn as much as they can about therapy options to understand when to start or switch to another therapy option and to understand individualized dosing and what works best for you or your loved one.
That’s a lot of responsibility — and a lot of homework! So let me give you a few examples of why this is all so important, using real world cases.
A patient’s caregiver recently shared with me that her husband was taking 25 mg of Revlimid (lenalidomide) daily. “Oh, you must mean 21 days each month,” I responded. “No,” she said. “He takes his Revlimid capsule every day.”
Now, I’m not a physician—although I do pretend to be one on occasion. But I have never heard of taking Revlimid daily at any dose. The standard of care calls for a minimum of seven days rest each treatment cycle.
My suggestion: “Ask your doctor why your husband is taking Revlimid every day, with no days off.”
After all, the physician may have a perfectly good reason. But I do know that her husband’s physician is a medical oncologist, not a myeloma specialist, so there are two likely reasons for this unusual dosing.
The most likely is that his doctor wanted to hit this patient’s myeloma HARD at first in order to get things under control. She then probably forgot to cut the dosing schedule back after a cycle or two.
The second, less flattering explanation is that his doctor simply isn’t aware of the recommended dosing schedule when using Revlimid. This can happen more easily than you think.
How? Medical oncologists treat patients with dozens of different types of cancer. It is difficult to keep up with all of the medical advances in treatment—especially in the ever changing world of multiple myeloma therapy.
Remember, multiple myeloma isn’t a common cancer. It’s possible this doctor only has one or two myeloma patients in her care at any given time.
It is common for oncologists to use the highest possible dose of a chemotherapy drug at the start of therapy. Then, depending on how many side effects a patient reports, dosing can be adjusted accordingly.
OK. So who is ultimately responsible for deciding when—and how much—a dose should be adjusted? It just might be you, the patient!
If you don’t share how you feel openly and honestly with your oncologist, he or she may assume everything is fine and won’t adjust the dose.
But often, multiple myeloma responds well to a much lower dose than the maximum dose. By not helping your doctor make adjustments along the way, you could well be exposing your body to much more toxic medication than is called for.
Or should I say “doses.” Because most often, anti-myeloma drugs are used in combination.
Still not convinced why you need to take responsibility for your own myeloma therapy? Here is another example of why knowledge is power—and can make a real difference in your quality of life.
Last month I spoke to a patient whose myeloma had been under control for almost two years.
“Are you taking any maintenance chemo?” I asked. “Yes,” he replied, “I’m taking Revlimid and dexamethasone (Decadron).” He continued: “And man, that ‘dex’ sure causes problems! I can’t sleep very well, and I think my wife is about to leave me sometimes after I snap at her for no reason…”
“Have you asked your doctor if you can drop the dex?” I asked. “You can do that?” he replied, looking astonished and hopeful. “You bet!” I said. “I dropped dex after one year of maintenance.“
In this case, the patient was only taking 10 mg of Revlimid, 21 days a month. But he was still taking 40 mg of dex each of the first three weeks. Once a patient obtains a complete response or very good partial response and their myeloma is stable, more and more doctors are starting to cut the dose of dex in half to 20 mg or eliminate it altogether.
This is an example of a quality of life issue, with very little medical risk.
The same rule of thumb applies to Velcade (bortezomib). The dose can be adjusted down. Or since an IV or injection is required, more often the frequency of dosing will be cut down from twice a week to once a week.
And don’t forget about the dex! It is often used with Velcade, too. And the same advice applies, just like with Revlimid: Once your myeloma is under control, you and your oncologist should discuss the pros and cons of either reducing the dose or eliminating it from your treatment schedule altogether.
So pay attention to when, how much, and why you receive each of your medications. It just may help you live a more normal life.
Feel good and keep smiling! Pat
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at.
Pat, Revlimid is given in two dosing regimens. 28 day cycle or 21 day cycle. Generally the 28 day cycle is lower dosing while the 21 day is higher mg dosing. It is trial an error to see which one works best for a patient and adjusted accordingly. Dave started out on the 28 day cycle and had no issues. The doctor still went ahead and adjusted it to the 21 day cycle which Dave appreciates, having the 7 days off of any of these drugs is like a vacation.
For those taking Dex and having trouble sleeping, many began to take it before bed. It means you sleep well, though you get up super early, have a full day, but are exhausted enough to have a good night sleep again and not the insomnia many find themselves experiencing when taking the Dex in the mornings.
Pat, I so enjoy your informative articles. And this one is very timely. I was diagnosed on 11/3/10 and have been in remission for several months. My recent bone marrow biopsy and bloodwork couldnt have been better. And I have had virtually no side effects. I am blessed. A few months ago, I had my dex dropped from 40 mg, once a week to 20mg. What a difference! My husband and I have been talking about asking for my Revlimid dose to be lowered from its current 25 mg over 21 days for the reasons you have brought up: limit the toxic meds. We decided to approach my oncologist (who I love) on my one year anniversary. This article gives me more reason to do so. Thank you and wishing you continued beautiful days.
Hi Lori-
That's news to me! In all my years using and speaking with patients and docs about Revlimid, never heard of a 28 cycle. You can learn something new everyday! That must be what this gentleman meant by taking his Revlimid "daily." But still, 25 mg (and this isn't a very big guy) 28 days a month for close to a year. That's a lot of "poison!" Thanks for helping clarify my point.
Joanne, I'm so glad that you are doing well enough to hopefully get your dose/dosing frequency reduced--or drop the dex altogether!
Pat - Fantstic article and very timely! I just met with my doctor today to discuss maintenance drugs for post ASCT.
Pat: A word of caution. I am concerned that you are suggesting that patients determine their own dose. Despite the importance of getting it right this may be a little much to ask. I know I couldn't do it without some clinical evidence and I am working in the area. You also suggest that the dose changes will always be lower. Not necessarily so. It may be possible to simple change the frequency of dosing to say 2 or three times a day and and get more of the medicine to the target even though it is more of a hassle. All the studies that have been done on low dose dex, etc. have been for the "average" patient and we know that such a patient does not exist.
I'm glad, Tim! Good luck!
Lori, I have often kidded that "even baking soda works against our wimpy cancer... It's just that nothing can get it to stop for very long.
Good example of that.
Good point, Gary. A patient can't set their own dose. But they can discuss it with their docs to see if their logic makes sense as compared to what others are having good luck with. I LIKE THAT! A bit of dissent! I hope my readers don't hesitate to chime-in when they don't agree...
Pat, I am currently in a clinical trial in which I take Revlimid daily. The induction phase consisted of eight 21 day cycles of Revlimid, Velcade and Dexamethasone. The one-year maintenance phase started with three months of Revlimid at 10 mg/day in consecutive 28 day cycles. In accordance with the terms of the protocol, the dose was then increased to 15 mg in the fourth month. I have to deal with peripheral neuropathy, but it is manageable. My response to treatment is "near complete" and there continue to be improvements showing up in blood test results. Thank you for your column.
I wonder why they increase dose after 4 months? Usually it's the other way around. Glad someone is experimenting out there. Congrats it's working! Pat
Here's a new one for you. I met a patient tonight with aggressive MM, SCT didn't work, our doc was her doc and he put her on a drug for Kidney cancer and for over a year it lowered her bone marrow from 80% to 10%!! Imagine the creativity in that! It stopped working though and now she is trying "other concoctions".
Hi Lori
Just curious ...what do you mean when you say lowered her "bone marrow" from 80% to 20%? What diagnostic test was used to assess that?
Hi Gary,
Would you please share how you are defining the 'average" patient when referring to low dose dex being effective?
Thanks
Pat,
You are bringing awareness to dosing regimens that should be rightfully challenged! Thank you.
I too am unfamiliar with a cycle of Revlimid other than 21 days. I do believe the key is what you said ..an oncologist that is NOT a MM specialist.
MM patients are not predominate in an oncology practice! If that MD is not attending ASH, ASCO and IMW he or she may not be familiar with the most recent guidelines.
That is where, as you have very timely expressed, patient involvement is key!
I love how you bring up topics KEY to MM patients not just oncology patients, always very worthwhile an important.
Thanks for another great article.
BTW...have you explore how we can get oncology pharmacists on board as part of the cancer care team?
They are the experts when it comes to individualized dosing that is effective...just wondering.
Hi suzierose:
Great question.
All patients are not individualized but started with with an average doses. An attempt is made to normalize the doses to the weight or surface area of the patient but statistical data doses not support this approach....like the song from Fiddler on the Roof it is "traditional". The average dose is generally supplied by the pharma companies after large clinical trials including pharmaocokinetic studies, MTD and even efficacy. This average dose might be effective for the average patient who unfortunately does not exist. As these columns tell us and Pat's recent transplant, experience we are all different.
Now to your question. It is my understanding that clinicians discovered that low dose dex was superior to high dose dex not by studying a single patient but in a clinic trial with several hundred patients. They then selected a new average based on these patients. It was wonderful finding but is it the best. There is still no average patient. Why not low-low dex? Why not three times a day dex (low doses of course). Surely we can convince patients and caregivers that they can follow a
sightly more complex regimen to achieve better results and quality of life. This is a terrible disease we need to respect it. We have to get away from this one size fits all mentality. Until we can convince the medical community to look at ADME (Adsorption, distribution,metabolism on elimination) we will never individualize the dose.
If I have been unclear please let me know. It is early in the morning and I have not had my daily dex breakfast.
Pat:
I am the original curmudgeon. However, I try to provide such criticism only when it is constructive and based on my experience.
Good luck.
Gary,
Thanks got it! I feel ya! I want individualized dosing as well for these toxic regimens.
I want them to have oncology pharmacist on the team who get to do the PK sampling and determine like you said what works for you the individual vs. the 'average' patient.
'Average" patient dosing is great when the side effects are not as life threatening and altering as these agents we take are.
MM patients need to band together through the Myleoma Support Foundation and demand individual dosing with oncology pharmacists.
That is the quickest fastest route!
You bet! Right back at you- Pat
Pat- I agree with what I see as the basic view of your article; that is to question your doctor, minimize when possible the amount of drugs we must take and improve our quality of life. However, I think you can't emphasis enough that you are not a doctor and there are limitations to your knowledge and experience.
In the past my doctor, a myeloma specialist, has had me on Revlimid (10mg) daily & continuously. I know of at least one other person on the same dosing schedule with a different doctor also a myeloma specialist. From my experience with myeloma there is very little in the way of "standard of care". Due to the individualized, constantly changing nature of the disease and the limitations of the treatment regimes, each doctor tries to do their best to come up with a winning solution. Ask a question of five myeloma specialists on a panel and you often get five different answers. Unfortunately this is the current state of the art in this scientific field.
Suzierose, A bone marrow biopsy is used to see what percentage of plasma cells are in the bone marrow, i.e., myeloma infiltration. Places like UAMS utilize this diagnostic much to the consternation of other oncologists outside of the research setting, because they are sometimes painful and leave holes in you bones that then need to heal up. Also, there is some scuttlebutt that you can drill into one area and get little MM in the marrow, but a hot spot somewhere else in the body would show a different result.
So in her case, she was at 80% MM in her marrow and the drug regimen eliminated it down to 10%. Which is considered a desirable result. UAMS/Huntsman has found that PET Scan, MRI's, 24 hour urine/blood, and bone marrow help them to feel confident that your MM isn't lurking about somewhere. For instance on our (6 mos) check up just this week, the MRI shows all clear. The PET picked up an old lesion on his spine that is stable, has shrunk, but is still there - point being, the MRI didn't pick that up. So they go after you from every which way because folks show signs of progression in different ways. I hope that helps.
Thanks Lori!
I agree... Thanks so much for you input, Lori!
On the topic of dosing...I was on revlimid for a year of maintenance chemo. My doctor started me out on 10 mg/day, but my neutrophils and WBC fell below normal ranges, and then he would give me an extra week off the drug for my blood levels to recover. They always did blood testing before renewing the next month's medications. Eventually after a few months, he lowered the dose to 5 mg, the lowest available, because of the lowered immunity I was encountering in my blood levels. It was not a treatment regime, that is, attacking an active form of MM, so he could tinker around with the dose to make it more tolerable for my system. Revlimid was not available for stem cell induction therapy when I was diagnosed..I am not sure if it is now or not. I know it is used as treatment for relapsed forms, or for people who are not going to have an SCT, and I think that they are on higher doses of the drug. So in my case, the doctor, the lab, and the pharmacy were all involved in keeping me better!
This site is God sent.
My husband was disnosged with MM in April 2011. In May he started his chemo treatment with Velcade and a bone strenghtner. Treatment has been going well and pre-testing has begun for his stem cell transplant.I should say that my husband has a few other issues with his health, diabetes and hypertension. It now seems that the Velcade had a negative effect on his heart funtion from 60% to 26%, chemo has been discontinued. According to the Dr. this is a rare side effect of Velcade.As mention chemo is stopped until all Dr's can review my husband's case. My concern is now what do we do to correct his heat condition and how to move forward with chemo. Also, he's in terrible pain from the MM and using oxi for relief.
We will be consulting with a heart specialist, hopefully to reverse the effects from the Velcade. As a caregiver, I don't feel that I have enough info. to make sound decisions that are best suited for my husband.
Hi Nancy-
Insurance tends to allow liberal application of how and when to use Revlimid these days. I just got my insurance letter, approving it yesterday--one week after it was delivered to my door!
Barbara-
Sorry to hear about your husband's side-effects. Try to get him back on some sort of anti-myeloma therapy soon. We don't want his myeloma to regain momentum. Best of luck! Pat
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