Being A New Patient In The Time Of COVID-19
May 6, 2021
During numerous virtual support group meetings, it has become obvious to me that newly diagnosed myeloma patients face many challenges during this pandemic. Firstly, the diagnosis may have been delayed because of reduced access for testing and follow-up. Then the whole process of learning about the disease, with so many crazy new words, presents a serious challenge. And on top of that, there is no opportunity to meet and discuss concerns with other patients “live” and in person.
It is clear to me how important this direct support is for making the IMF’s cornerstone belief, “knowledge is power,” into a personal reality.
New Session for the Newly Diagnosed
With this in mind, the IMF held its first exclusive “Virtual Session for the Newly Diagnosed” on April 30. Topics covered included:
- Myeloma is treatable
- Baseline testing required
- Key terminology
- Assessing response
- What to expect with treatment
- Role of triple therapy
- Pros and cons of ASCT
- Role of maintenance
- Importance of caregivers
Robin Tuohy, Vice President of Support Groups for the IMF, demonstrated how patients can find what they need on the IMF website. This wonderful part of the session was extremely well received. So much information and knowledge are readily available if you just know where and how to find it.
Myeloma Is Treatable
Once the bone marrow report and/or biopsy confirm the diagnosis of myeloma, the first questions patients usually have are: “Can you treat it?” “Can you cure it?”
Can you treat it?
The excellent news is that in 2021 more than 90% of patients respond to FDA-approved therapies available in the U.S. The current standard of care is the VRd combination (Velcade + Revlimid + dexamethasone) as a first therapy. Because of promising early data, there is an option to enhance this with an additional agent, such as daratumumab (Darzalex or Darzalex Faspro, the subcutaneous version). This quadruplet (Dara VRd) has produced both higher and deeper responses, plus long first remissions.
Instead of VRd, other triplets can be used, such as VTd (with thalidomide); VCd (with Cytoxan: CyBorD); and doublets such as Rd or Vd, which can be used for older and/or frail patients. In addition, Kyprolis or Ninlaro can be used instead of Velcade. Dara Rd (the so-called “Maia” regimen, named for the clinical trial) is also an excellent new triplet to use instead of VRd, especially for older patients in order to avoid neuropathy.
For a majority of patients, the first remission (a sustained response) lasts an average of four years or more. During that time most patients can return to full activities. In 2021, the expected survival now exceeds 7 years. Newer treatment combinations are pushing that number to greater than 10 years, especially for younger patients without high-risk disease features.
Can you cure it?
- Even starting early—as we are doing in high-risk smoldering multiple myeloma (HR SMM)—and using the maximum best therapies, we still cannot guarantee permanent remission or cure.
- However, many patients remain in remission without detectable myeloma (minimal residual disease undetected) at five years or longer.
- Some patients already live beyond 15 to 20 years with currently available therapies, even with small amounts of residual myeloma.
- With the introduction of game-changer immune therapies such as CAR T-cellular treatments Abecma (anti-BCMA CAR T), which was recently approved by FDA as relapse therapy, the outlook for the future is truly bright. With this and other new therapies, we can already achieve multiple remissions and extend survival by many years. A cure is definitely within reach.
Other Common Questions & Answers
What causes myeloma?
Often the cause is not immediately obvious. However, for some patients, toxic exposure to a known cancer-causing chemical is more likely than not the culprit. For example, benzene exposure has been strongly linked to the development of myeloma. A recent case from the U.K. linked myeloma to helicopter exhaust fume exposure. A colleague of Prince William (second in line to be King of England after Prince Charles) during his stint in the RAF was exposed to exhaust fumes and developed myeloma. The former airman reached a settlement with U.K. Ministry of Defense.
How do I track my response to the disease?
The myeloma protein (usually IgG or IgA) in the blood and/or light chains (kappa or lambda) in the urine are used to track the impact of treatment. Light chain levels can also be tracked in the blood using the Freelite test. A 50% reduction is considered a partial response (PR), with deeper responses being VGPR (very good partial response), CR (complete response) or sCR (stringent complete response).
Using minimal residual disease (MRD) testing, deep response can be confirmed in the bone marrow at “zero myeloma cells out of a million (10 to minus 6)” cells counted.
Will I definitely need a stem cell transplant (ASCT)?
In 2021, this is a decision to discuss carefully with your doctor. If a deep response has already been achieved, it may be that ASCT can be deferred until later. However, ASCT is an excellent way to achieve the very deepest responses possible. Typically, with or without ASCT, maintenance with Revlimid +/- Velcade or a proteasome inhibitor (such as Velcade, Ninlaro or Kyprolis) or more recently, Daratumumab, is generally recommended.
Knowledge is power
It takes time to become familiar with myeloma terminology. It was wonderful that Robin Tuohy was able to lead participants in the “Virtual Session for the Newly Diagnosed” through the myeloma.org site so that they can access the maximum information about testing, treatments and side effects.
Supportive care was also discussed because, as we know, caregivers need care, too!
New Virtual Group for Young Patients
The IMF is very pleased to announce that a new virtual support group has been started to help young patients with myeloma, especially those with small children. The goals of this group are:
- To connect and encourage other multiple myeloma patients and caregivers who have young children by providing hope, compassion, and empathy.
- To create positive connections and support in a safe and uplifting environment.
- To empower those with multiple myeloma through key insights and the understanding of educational resources.
- To encourage others to be courageous and strong through shared personal experiences.
Specialized care is definitely required when living with myeloma and we look forward to this new group providing much needed support and guidance.
New COVID-19 Guidance
Despite the new CDC guidance allowing some to forego masks when outdoors, wearing masks is still important for myeloma patients, even after full vaccination. There are two main reasons for this recommendation:
- Unfortunately, myeloma patients do not achieve full protection with vaccination because of their compromised immune system and the impact of ongoing treatments.
- The continued emergence of new more infectious variants of the COVID-19 virus puts patients at risk of a new infection. Even though the body will be better able to handle any such infection after vaccination, it is definitely preferable to avoid infection.
An additional personal suggestion is to still avoid in-person patient group meetings and stick with Zoom. It is so difficult to be sure all precautions, like excellent ventilation and spacing, etc., provide the ideal protection. However, it is really important to maintain in-person visits to the doctor as much as possible so that you get required testing and treatments to get or keep myeloma in remission. Virtual visits in between are helpful but should not replace visits to the clinic or hospital, which are now set up in a very safe fashion in the U.S.
Getting Through This Together
Slowly but surely, we are getting through this together and I am very hopeful that by the Fourth of July we can all start to celebrate safely with family and friends — something we have all been missing so much.