Letters From Cancerland: Through Rose-Colored Glasses
In The Wonderful Wizard of Oz, the first of the Oz series, any traveler to the Emerald City must put on a pair of green spectacles, which are then locked in place. These are required to shade one’s eyes from the brilliant green glow.
In Cancerland, the color of the glasses is rose.
After a holiday from treatment of almost two months – longer than my myeloma specialist wanted, but shorter than Tim, my primary oncologist, wanted – I resumed treatment in mid July.
My new treatment regimen is Darzalex (daratumumab). The prescribed course is an infusion once a week for eight weeks, then once every other week for 16 weeks, then once a month thereafter. Out of the gate, I am taking it straight, with dexamethasone (Decadron) and Benadryl (diphenhydramine), also by infusion, as the pre-meds.
Knowing nothing about Darzalex, I prepped for the start of treatment by reading fellow Myeloma Beacon columnist Maureen Nuckols’s columns. Thank goodness for Maureen sharing her observations! I carried her reflections, along with the caveats that the initial session can be “rugged,” to my initial session.
Rugged? Did you say rugged?
I knew and had been counseled by nurses and oncologists that the initial treatment might produce a bevy of side reactions. That's why it is given very slowly in the first session. What none of us (least of all me, because I tend not to react to drugs) expected was for my body to react very strongly to the Darzalex.
Nausea? I threw up so hard and so fast that I broke veins in the left side of my face, although I did not know that for another day. As a result of the massive hematoma, I walked around for two weeks looking like someone coldcocked me.
Rash? The skin around my eyes swelled and turned bright red.
Respiratory? My nasal passage totally shut down, and my throat started to close too.
My reactions were so extreme that Tim came hurrying in to consult with the nurses, talk with me and my husband, Warren, and shut down treatment until they could get me stable. I had to come back the next day to finish the initial treatment.
The second “first day,” and the treatments since then, have all gone off without a hitch.
Before starting Week 2, I had a brief appointment with Tim at his insistence. He stopped in the doorway of the examining room, staring at the still prominent bruise on my face. I explained what he was looking at, he asked a few questions, then dropped onto a stool and buried his face in his hands for a few seconds. When he looked up, he was a little moist around the eyes. In the almost 13 years we have been together, I have seen that reaction only one other time, when it became apparent that my stem cell transplants had failed within a few months.
Tim then scanned that morning’s lab results and lit up. After cautioning me that what he was about to say had no statistical significance, he noted that my hemoglobin was 11.2.
11.2? 11.2? That’s the best reading, finally breaking out of the low and mid 10s, that I have had in years.
“Looking at this through rose-colored glasses, I’d say this is encouraging,” he announced.
I twitted him. Rose-colored glasses?
“As oncologists, we have to view our patients through rose-colored glasses,” Tim explained. “Otherwise, you’d be one miserable, cynical, burnt-out oncologist.”
I’ve thought about that comment a lot since then. In Emerald City, they wear green glasses because the glare is so bright. In Cancerland, they wear rose-colored ones to amplify the smallest of victories. Tim had his on when he saw the hemoglobin turn up for the first time in too long to remember. The amazing nurses in Infusion wear them when they walk by and smile when they see I am not reacting to the Darzalex.
On a regular basis, our providers sit across from us, see the glimmers, and hand the spectacles over to us. “Here. Look here. See that?”
It is the faint shimmer of hope.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
April,
I started Darzalex a couple of weeks before you with the same protocol as you, Darzalex with no other drug other than steroids. Fortunately my first infusion was so different. I had no problems with the infusion and have slept through most of them because of the Benadryl dose. And, it appears to be working! Yay for us and those who also are responding well to it.
I like the image of the rose colored glasses. My oncologist must be wearing them, too. Even when he gives me not so good news he does it with such caring and concern.
Continue to respond well to this latest treatment,
Nancy in Phila
I have been on Darzalex since May of 2016. Quality of life is good and cancer numbers are stable.
I wondered what all the extra medical supplies were on the table next to my bed in the Infusion Department at the cancer center last May as I began a new cocktail, and sort of recalled my oncologist (who I have been with for nine years since my diagnosis) said "some people have a reaction to the Darzalex," so he was happy that I chose to have my first dose at the cancer center (seven hours from my home base and eight hours from the "local" oncologist). My husband "heard it differently," that my oncologist wanted me to have the first one there (but as always I felt it was my choice!).
In any event, about one hour into the infusion, the "extra medical supplies" were used; oxygen, inhaler, etc. Pretty darn scary, as most of the nine years has gone easily. Revlimid with dex on demand (never did use it for the four plus years on the clinical trial, which was extended as it worked so well). Harvest of stem cells but never used, partly as I am aging, am 76 now, and partly as I could get no documentation that the stem cell transplant would give me the quality of life I enjoyed (travel, seeing eleven grandchildren and very active in community). Then another clinical which did not work very well, and various other therapy cocktails. Then was put on Darzalex in May 2017, dex (oh no!), and Pomalyst, and seem to to be doing well, as M-spike at the lowest ever, and only have to go to the cancer center every three months! After once a week for two months, am well into every other week for the infusion.
I totally enjoyed the rose-colored glasses article and hope I have them on as well when I meet others with cancer. Love and happy wishes to all.
Francie Hill
Clinton, Iowa
Dear April,
You really got me beat on the "rugged" reaction to the first dose. I can take anything – fever, chills, bleeding – but yuck, vomiting. I am so glad that your next dose was ok and that Darzalex seems to be working. In my protocol, I also had Velcade for the 15 weeks, and I think that may have caused the additional side effects I experienced (nausea, bloating, and neuropathy). Now I am on a monthly infusion of just Darzalex. I am still in remission, just finished another triathlon, and am grateful to be alive and wearing rose colored glasses.
You really captured your reaction with powerful prose. Keep on writing because we love it.
Maureen
Wishing you nothing but the best with the Darzalex. So very sorry about your violent reactions to it at first, but let's hope it gets easier from here on out, and the numbers get better!
Dear April – Your descriptions are so powerful and I felt that I was almost with you and your team. I do hope that the Darzalex continues to work and that you can look forward to some rose tinted times ahead.
Please tell me that things are getting better!!! This reminds me when I was started on Revlimid and the cocktail that went with it. I gave up within a week and said I don't want this. My wonderful husband just held me. My precious nephew, the rest of my family, and friends have encircled me with so much love and support that I couldn't give up and I'm humbled by their love. My GP, new to us at the time, was there step for step as were all of the help that she made sure was available.
All of that to say, dear April, is we are all standing with you. We will support whatever decision you make for yourself but please do try to get through this first month of horror so that you can see the uplands and those pink roses!
This is as usual a very informative column, April! I really hope that the reactions from Darzalex have lessened a lot, and that your hemoglobin levels stay improved too. Maybe the monoclonal antibodies will prove to be a game changer for many patients, I sure hope so! I think you can wear pink, magenta, fuchsia, strawberry, or any other shade of rose-colored glasses that you like - you have really earned the right to think positively! Best wishes!
I saw my oncologist's rose-colored glasses slip only once. My husband had an MRI in the course of diagnosing DVT (blood clots) and PEs (blood clots moved to the lungs) that also showed irregularities in the lymph nodes in the middle of his chest "consistent with lymphoma". My husband was referred to my oncologist, and I accompanied him on that appointment. The doctor looked from the chart to the two of us and said, "That's not fair, is it?" He continued with the exam, his voice at a slightly higher pitch, rose-colored glasses firmly back in place. (A subsequent biopsy showed sarcoidosis, not cancer.)
I started on Darzalex last week with Revlimid and dex. I had reactions twice and finished in 25.5 hours at a maximum of 50 ml/hour. This week, as last, I'll be in a hospital. All concerned hope that by next week I'll be able to get the whole dose within the office hours of my regional cancer center, which requires a rate closer to 200 ml/hour.
One and all: I read everyone's experiences, both good and bad, and am glad we are all still here to tell the tale. Thank you for the observations, the comparisons, and the words of encouragement.
For everyone's edification: I just today finished my 5th week of Darzalex. Except for that first awful induction, I have experienced no reactions--none whatsoever--in any of the following treatments. The oncology nurse I work most closely with is thrilled, commenting today that "we were so worried that you were going to continue to have problems," given my spectacular first experience.
My time in the chair, for those of us (me!) watching the clock, is pre-meds over 30 minutes (more or less), an hour wait, then infusions at 100 ml/hour for 1 hour, 150 ml/hour for 1 hour, then 200/hr until done. Today I started about 7:30 a.m. and was out of the chair a little before 12:30.
My hemoglobin has held above 11. And while I am reluctant to get too excited yet, the truth is I am feeling better (overall quality of life) the last 5 weeks than the last 5+ years. That has been a stunning change and one I am not ready to take for granted yet. I see my oncologist Tim next week, and can only imagine the grin that will take over his face.
Started Darzalex yesterday and first infusion went smoothly. No issues at all except it is so slow. It took about 7.5 hours.
Next doses are supposed to be in the 4-5 hours. Took Benadryl, dex infusion first, then Darzalex.
Eric
L'Shana Tova, April! This means Happy New Year in Hebrew. Jews are celebrating Rosh Hashanah today and tomorrow. Happy New Year to everyone, and may you all be inscribed in the book of life, as we Jews say!
I am so thrilled to read your column, April! You are an inspiration to all of us! It must be fantastic to feel well for the first time in so many years. I am hopeful that it will continue.
Love your columns!
Ellen Goldstein – L'Shana Tova right back at you. I'm Jewish too. I raced home from 3 states away yesterday to be here when the sun set and the new year began.
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