My Myelomaverse: Feeling Dazed And Confused
Seven months ago, after having smoldering myeloma for 10 years, I crossed over into the ‘active’ disease category. Thankfully, there was no dramatic myeloma defining event, just a painful bone marrow biopsy that showed 60 percent plasma cells. How long I have been at 60 percent, I have no idea, which makes the decision to proceed with treatment a difficult one for me.
Back in March, when Covid-19 was starting to grip my region, my doctor agreed that it would be prudent to hold off on treatment, as Seattle was in the midst of trying to prevent a surge of the virus. I happily complied and have been hanging out ever since. My numbers have not been changing at all, so I thought that I could stay in this sort of suspended animation for quite some time.
But not so. I most recently ‘saw’ my doctor via a videoconference call. He was masked and in an exam room; I was tucked in a corner of my bathroom, for privacy (plus the light and wifi are good in there). During that call, he said that they have managed to prevent the surge and they understand more about treating the virus. He added he has had one patient with smoldering myeloma catch Covid-19 and not require any treatment. So, according to him, Covid-19 is under control, and he advised I begin treatment.
I came away from that appointment bewildered. It’s all good and well that the medical community feels like they have a handle on Covid-19; I’m grateful for that. But for me, the patient, it’s still a very clear and present danger.
I have not been into a store since early March. My only in-person appointments have been with the physical therapist, the lab, a PET scan, and a quick check at the dentist. My friends don’t come into my house. My husband-and-wife housekeeping team, which used to come every two weeks to do the big stuff, moved away in April after everyone dismissed them. I haven’t had any of my usual supportive care such as massage and acupuncture. I don’t have safe access to a pool or the gym. I don’t share a household with my partner, so I haven’t been within six feet of him either. It’s just me and my teenage son, who only sees his friends for masked and socially distant outings outdoors, which are far and few between.
Beginning treatment is a launch headlong into a scary unknown. While I’m not a control freak, I am someone who likes to have some semblance of control of the things that I can. I always imagined that when I would need to begin treatment, I would continue to incorporate integrative therapies to maximize my wellness and well-being as my body reacts to the myeloma medications and my spirit is dampened by stress, pain, and uncertainty. This pandemic takes those things off the table, and I’m left with a very limited arsenal of things I can do to help myself have an optimal response to treatment.
Now this may sound like I’m whining, but I don’t agree. I have seen studies showing that cancer patients who have good social support, use integrative therapies, and have positive attitudes have better outcomes during treatment. The constitution of my attitude would be a lot stronger and more positive if I wasn’t stuck in my home feeling guilty for putting my teenager through the terror of his only living parent having an incurable cancer, and him having to give up his activities to shield me from Covid-19. I would feel more in charge if I wasn’t in such a confined situation, wary of venturing out for wellness care, separated from my loved ones.
My stress level would be lower if the world wasn’t collectively grieving, if our country wasn’t in the midst of a contentious election, and if the 13th anniversary of my husband’s passing wasn’t looming. This, to me, does not seem like a good time to begin treatment.
But what are my options?
I could refuse to start treatment, which makes me a liability and also puts me in danger of bad things happening (think compression fractures and kidney disease). Do I get a second bone marrow biopsy? If I do, what happens if it comes back with less than 60 percent plasma cells? Do I get a second opinion? Do I just bravely begin treatment, and hope for the best (after all, most people are masked right now so maybe it’s not such a bad time to begin treatment after all?).
I don’t think any amount of meditation, yoga, or even prayer will help me figure this out. I guess for now I have to be ok with feeling dazed and confused.
May we all go from strength to strength.
Else Sokol is a multiple myeloma patient and columnist here at The Myeloma Beacon. Her column is published once a month.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Hi Else,
You bring up some excellent points in this column. I was also diagnosed with 60% plasma cells on my first bone marrow biopsy in 2018, but I went for a second opinion and another bone marrow biopsy and was 30% plasma cells one month later with no treatment. I ended up doing a phase 2 trial and did very well, but that’s another story.
Take good care.
You might want to consider getting a second opinion. Videoconference calls and phone consultations are all well and good, but perhaps a face-to-face meeting with your doctor needs to be planned before you make any decision.
I have been in treatment for multiple myeloma since 2012 at a major cancer center not far from where I live. The Covid-19 situation and accompanying isolation certainly complicates your situation, but I felt much like you when I was contemplating whether or not to do a stem cell transplant. I decided not to do the transplant, and my disease has been controlled with medication.
As we see here at the Beacon, new drugs are being approved all the time.
I am not a particularly superstitious person but, 2020 seems to be a year we would all like to see the end of and not an auspicious moment to embark on new endeavors.
Dear Else,
I am a five year survivor. I was diagnosed and treated in 2015. The initial treatment was Revlimid, Velcade, and dexamethasone for 4 months, then a rest followed by a stem cell treatment. I was 59 at diagnosis with a full time career. I was able to continue my work schedule all through treatment up to the stem cell transplant.
In my opinion, you are 100 percent right about the support and self care that will help you through the treatment journey. To me, your bewilderment which you express so well may be from a lack of information. Do you know what your treatment would be? How long it would last? What can you expect in terms of side effects? How quickly is your myeloma worsening? What does your son think of all this?
To me, being treated and getting the multiple myeloma under control is vital. You are the only living parent of your son. He needs you alive and healthy, right? He will most likely need to be part of your journey over the next year.
Good luck, and as a friend said to me, "You got this."
Hi Else,
I went through the same thing last year. I went from smoldering myeloma to active in about 5 years and finished treatment and two stem cel transplants in February 2020.
Cheers,
Rahul
Hi Elise,
I feel your frustration so clearly! These are terrifying times for all of us with compromised immune systems. Beginning a new treatment is scary regardless of whether we are enduring a pandemic or not. I suffered my first relapse in July, which surprised me. I thought that after my transplant in 2016 that I’d be in remission for a long time instead of just 4 1/2 years! I discovered that 4-5 years is pretty much an average length of time; guess I was just being hopeful!
Anyway, like you, I haven’t been in a store since the end of February, but my husband makes early morning runs to the grocery store for us. I do worry about him getting Covid-19, but he assures me he is very careful. He wipes everything down before I can even touch it!
Well, I needed to start a new treatment plan, which would require me to go to the clinic and have weekly infusions as well as take a pill each day. I was fearful of going to the clinic. I didn’t/don’t want to be anywhere where there are lots of people. However, we suck it up, put our masks on, and armed with our sanitizing wipes, we venture into the clinic. We have found that everyone at the clinic is wearing masks and being ultra careful, too.
It’s been five weeks, and thus far, I have felt safe in my little cubicle while I have my drug drip. Am I still nervous about this? You bet! However, I feel that the precautions we are taking combined with the ones the clinic has In place for patients is the best we can do in this situation.
I hope you can come to terms with what you need to do to fight your disease and find a way to accomplish that without compromising your health any further. Your are right in knowing that you need to pamper that heart-mind-body connection. I have no doubt that you will, too. Hang in there. You can do this!
Patty
Dear Else,
So sorry that you have to make these decisions during the toughest times imaginable. They are not easy decisions during the best of times.
Has your oncologist given you any indication if you are high risk? My husband is considered high risk so he has been through all the treatments: induction therapy, radiation, an autologous stem cell transplant, and maintenance therapy. We had to skip his six month checkup in April due to Covid-19, and we are getting ready for the long trip to the cancer center next week. For him, it will have been a year since he has seen his oncologist and had the myeloma-specific tests. As you can imagine, we are quite anxious about this visit.
We will be taking every precaution we can during this trek to the cancer center. From our limited experience and knowledge, we feel that this is a cancer that can go out of control very quickly. At this point, we feel the risk is worth knowing my husband’s current condition.
Good luck with your decisions, and I pray all goes well with you. (P.S. - You can also do the bone marrow biopsy under sedation.)
Hi Else,
You're not alone. We're all in this together. I had to make the decision to venture out more, and so far, so good. I live alone, so making decisions is pretty hard. Just have to keep on moving as best we can.
Dear Else,
I don't have any advice for you, since every patient is different, and I also live in a different country. But I could think of a few questions you might ask of the doctors.
First, if your treatment plan includes a transplant, would you be in the hospital over the time of the transplant? This might be better for your care than being treated as an outpatient.
I agree with your worry that if you delay treatment you would be at greater risk for kidney disease or lytic lesions leading to fractures.
I was treated with my stem cell transplant during the SARS H1N1 epidemic in 2010. The whole hospital was on high alert for infections. SARS turned out to be not as bad as it could have been, but warnings to prepare for any such future epidemic were largely ignored, unfortunately, and look at where we are now! So have you asked the doctors about what precautions are being taken at your hospital?
I think it is good to have a positive attitude, and it sounds like you do, in the sense of analyzing your situation. I hope that you can return to a more normal lifestyle soon.
Best wishes,
Nancy
Gretchen – Such varying bone marrow biopsies must have been a conundrum. Interesting!
Diane S – I now have a second opinion scheduled. I'll discuss the outcome with my local doctor and then figure out how to proceed. I'm so happy to hear that you skipped the transplant and your myeloma is controlled with medication 8 years later. Cheers to that!
Rebecca B – Thanks for the encouragement, and I am in awe of those of you who have continued working through treatment. The statement from your comment that stands out the most to me is: "How quickly is your myeloma worsening?" That (determining the tempo of progression) is the million dollar question that I have repeatedly asked and no one can answer. It's my understanding that there currently is no way to accurately predict rate of progression, and experts are trying to figure that one out. When they do, it'll be a boon to patients everywhere.
Rahul – It's always helpful to know that people have gone through the same thing and can talk about it. I hope your remission lasts a good long time!
Patty Muckala – Thank you for sharing your experience of venturing out. I have been at my local cancer center for one infusion (Zometa) and once I got through the checkpoints and the crowded corridors I felt safe in my room as well. I appreciate your words of encouragement. Yes we can!
Patty Nolan Bodin – Thankfully I am not high risk. I appreciate your good wishes and prayers, and I'm glad your husband is going back in for a checkup. A very wise (now retired) therapist of mine who had been through breast cancer used to say this when I was nervous about testing: "It's just information." Keeping that perspective helps me with pre-testing anxiety. I hope your husband's tests results are favorable. Blessings to you!
Hi Marilyn – Thank goodness for community! And yes, we all have to keep moving, literally and figuratively!
Hello Nancy – Thanks for sharing your thoughts. If I have a transplant, I'd be living in apartment-style housing (shared kitchen) near the cancer center, or doing a short-term apartment rental (which feels safer). The thought of sharing common areas right now gives me the heebie-jeebies. The hospital is taking great precautions, but that doesn't eliminate the risk of an asymptomatic staff person. I guess it's best to take it one step at a time and hope for the best.
Hi, Else, thank you for sharing this. I've been somewhat similarly quarantined since February 29 (my diagnosis was in November, 2018). A couple of thoughts: There is such a thing as nonsecretory multiple myeloma, where it shows only in the bone marrow biopsy but not in blood markers. Have they excluded that in your case? And, it could depend on what the treatment would be. At this still hopefully fairly early point, the treatment might not affect your life that much and save you from more later. When people use the word "chemo" to describe treatment for multiple myeloma, it sounds scary, but most myeloma therapies tend to be targeted, and some can have few, if any, side effects. Just thoughts.
Hi Jean, thanks for sharing your thoughts. I am not non-secretory, and I'm advised to begin treatment with Revlimid, Velcade, and dexamethasone. Even though I've heard from many people that this treatment isn't that disruptive, I'm still hesitant. I've never really been a patient, and this is taking some getting used to. Take good care!
Hi Else. You may want to consider getting a second opinion. I was diagnosed with smoldering myeloma in 2009 and didn't start treatment until 2019, even though a bone marrow biopsy showed over 60% plasma cells several years before then. Another specialist might tell you that immediate treatment isn't necessary, or they may reinforce what your current physician is saying. This is such a complicated disease and sometimes there is no "right" answer.
Hello Else,
I have been in treatment since April of 2015 following a failed transplant in late 2014. You said "I've never really been a patient," which gives me reason to believe you're having difficulty with accepting the fact that you now have active disease. Up until the time of my diagnosis, I was ridiculously healthy, and I had major issues with accepting the fact that I had cancer. After many months of frustration I came to grips with what was happening and was able to move forward.
There have been tremendous strides in myeloma treatment recently and more is to come. For the first time, I’m starting to hear the word "cure" now and then, so there is good reason for hope. You will need to keep yourself healthy enough and alive to take advantage of these new and developing treatments. If your PET/CT revealed any bone involvement, your decision to avoid treatment seems to me an invitation for myeloma complications such as fractures and kidney impairment. Treatment centers are taking every precaution to keep patients safe from contracting Covid-19. To me, the risk you take by not treating your myeloma is far greater than the slim risk of getting COVID. Remember, greater than 90% of people infected with Covid-19 survive, but 100% of people with myeloma will succumb to the disease or its complications. Pretty grim, I know, but those are the facts.
I wish you the very best.
Hi Jason, thanks for your comment. You hit the nail on the head with your statement "This is such a complicated disease and sometimes there is no 'right' answer." I am in the process of getting other opinions and finding that no one can determine my tempo of progression. So my response to that is to gather as many data points as I can and proceed from there. It's a little crazy making!
Hello Dan, thank you for your thoughtful comments and well-wishes. Yes indeed, I'm having trouble coming to grips with my diagnosis despite having a ten year run-up, but my main frustration lies in the fact that no one can determine if I have more time on the pre-treatment side of things. To me, more time equals more advances toward a cure. My PET/CT was negative and my kidneys are happy, so I'm sticking with the status quo for now, with careful surveillance. Covid-19 or not, I'll comply with treatment deployment when my body indicates it's time. Take good care!
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