My Myelomaverse: Hold Up, Wait A Minute
I know it's been less than two months since I wrote another column with the word ‘wait’ in the title, but it seems to be a recurring theme for me.
I was officially diagnosed with smoldering myeloma 10 years ago this month, and I have been in watch-and-wait mode since then. My original hematologist offloaded most of her patients last fall, and I was assigned a new doctor.
Predictably, but nothing I had actually anticipated, the new doctor wanted to know what he was dealing with when I showed up at his office in early February, right as Covid-19 was taking off in Seattle. So of course he ordered the dreaded bone marrow biopsy, my second in 10 years. He assured me that I would be comfortable, with twilight anesthesia (I didn’t’ have anything but local anesthesia the first time around and, frankly, it wasn’t terrible).
I went in one morning, not too concerned about the procedure itself. After all, I was going to get the good stuff, fentanyl and midazolam (Versed). But I guess they saved those for someone else. They either underdosed me or didn’t wait long enough for the medication to take effect. Before long, the tech was inserting the needle. No problem. Then she told me to exhale, and when I did, Yowza! She aspirated my bone marrow not once, but three times. As you all know, creating negative pressure in a closed space, in this case the bone cavity, yields incredible, indescribable pain. I was screaming. Then came the twisting to get the core sample. I was in tears. I’m German and fairly stoic, but this was a bit much.
I figured that the odds that the results of my biopsy coming back still in the smoldering range were very low. So I wasn’t that shocked (upset, yes, but not shocked) when my doctor shared his screen during our videoconference and it showed 60 percent plasma cells. I knew that meant treatment would likely start.
Or would it?
That was back in March, and since then Covid-19 has disrupted a lot of our medical care schedules. But it has also presented an opportunity to step back, hit pause, read, learn, and think a lot.
Although my doctor initially said I would need to begin treatment, I questioned the rationale of it. After all, we were in the middle of a pandemic, and I felt quite well and hesitant to bring on treatment with everything related to that. I was happy to find that, although my new doctor is young, he was smart and humble enough to consult with his more seasoned colleagues.
After consulting with the weekly tumor board, he backed off of his plan. The rationale was that I don’t have any high-risk markers, and according to Revised International Staging System and the latest diagnositic criteria for multiple myeloma, I am barely in stage 1. Of course I know that this could change at any time. However, I have the benefit of having 10 years worth of lab tracking, with at least 30 sets of lab data points along with numerous scans. All of these show that my particular flavor of myeloma hasn’t moved very quickly. So, after a negative PET/CT scan, the verdict was to watch and wait some more.
"What exactly are you waiting for?" I asked my doctor.
For my hemoglobin to drop further, my LDH to take off, my light chain ratio to increase tenfold, and my PET/CT scan to show hot spots, he replied.
I realize that there could be other covert things happening in my body, but there’s no sign of that now, so I’m comfortable getting lab work done every two months and keep on keeping on.
So that’s the scoop. I’m holding up, waiting some more. Onward I go, hoping to buy a little more familiar time in my myelomaverse.
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 .
Else,
Good column. And, in my opinion, good decision to delay treatment.
I’ve had to make that decision, and learned that, for me, all that mattered is whether any damage was being done to my bones, kidneys, etc. Without these “symptoms” I could choose to wait awhile while I observed the myeloma blood markers slowly go up.
Good luck, and thanks for writing your column,
David
Dear Else,
That is good news for you about waiting on starting your treatment, although I think that involves some risk too, if the myeloma should take off on you suddenly. Good luck with it!
I could relate to your experience to the bone marrow biopsies with and without taking midazolam (Versed). My first biopsy, at the time of diagnosis, was done with local anaesthetic. Perhaps it was done without waiting long enough for the anaesthetic to take full effect, but I am not sure. I was in such pain that I swore loudly, and later felt really bad about that and apologized. The doctors and nurses are only trying to help, after all. Around the time of my stem cell transplant, I had 2 - 3 biopsies using midazolam and didn't feel anything. In fact, I dozed off. Now the protocol at our centre is to use just anaesthetic again. So the last time I had a bone marrow biopsy, earlier this year, I warned the nurses that I would try not to swear, etc. They just laughed at me and said they had seen a lot worse. It went off okay, although I have to admit I do not like getting bone marrow biopsies!
I am like you when I have a bone marrow sample taken. I only have a local. My doctor usually performs the sampling, and I feel little. Last year one of his techs did the sampling. It hurt very badly and my leg started jerking. When I saw the doctor at the next visit, I told him I did not want her to do the sampling on me ever again, just him. I am eight years out from my stem cell transplant and have a bone marrow sample taken yearly. So much fun.
I hope you stay in stage 1 and off treatment for as long as possible.
Hi David, thanks for reading. The further I go down this road, the more I am learning how, with myeloma in particular, one's individual treatment plan is governed primarily by science (which changes constantly), but also with a dose of 'art' on the side. I've been pleased to experience the 'art' of medicine with both of my providers at my cancer center. I would hope that this is a practice / cultural norm amongst myeloma specialists everywhere.
Hello again Nancy, I always appreciate your wise words. I don't think I'll ever get used to bone marrow biopsies, and I look forward to the day when science and technology have advanced and they are no longer required. And thank goodness for our nurses who take all our profanities in stride!
Hi Joyce, thank you for your words of hope. And by golly, what a tough person you must be to undergo bone marrow biopsy torture on a yearly basis. I'm happy that you have a doctor who knows how to perform yours with minimal discomfort. Take care!
Regarding biopsies, in the UK it's my experience that they do not use any anasthetics at all for a bone marrow biopsy. The first one I had done was apalling, and I complained to the consultant when I next saw him. You can't avoid these over the years, and I am well down the track since a stem cell transplant in 2012. My consultant told me that the pain was probably due to the rate of draw and slower would probably be better.
They are bearable on a slow rate of draw. Whoever is taking it now gets a lecture on this before I get on the table, whether they like it or not. Why practitioners are not told this in the first place I find inexplicable.
Good Luck
Ray
Else, I have had three bone barrow biopsies since 2007, and I remember screaming the first two times, more so the second time. I told the doctor the next time I had to have a biopsy, they were either giving me something or I was coming in roaring drunk. The next time I got the fentanyl lollipop, which was absolutely wonderful. I didn't even know the vacuuming was happening! Of course, you have to make sure someone is with you to drive you home, but it was well worth it. I have heard of people who don't think anything of having a bone marrow biopsy, but some of us experience excruciating pain, and I'm one of them. It sounds like you are, too, so I highly recommend the right dosage or at least some dosage of a narcotic to lessen the pain. I wish you well in your journey and appreciate your contributions here.
Ray – Thanks for the tip. I might just borrow a page from your playbook and lecture the technician next time. Wishing you all the best!
Susan – Thanks for sharing your experiences. I've heard that the lollipop is an option in my clinic. Maybe I'll try that next. Thanks for the well-wishes and stay safe!
Else,
Thank you for sharing that good information, and it was so helpful to me living here in Canada. Sometimes treatment is done a little differently here. Especially all the information on bone marrow biopsies helped me, as I am due to have one soon. I am very much dreading this, as I too only had a local, and not a good experience at all. So I am going to ask about this fentanyl lollipop.
I am on that same theme of watchful waiting as you, only a little difference, as it is with each of us on this journey with myeloma. I had a stem cell transplant 8 years ago in 2012. Thankfully, I have been in complete remission for 7 1/2 years. I have not been on any treatment post transplant (no Revlimid) because I had a pulmonary embolism during the transplant. During this time, I have been seen every three months with my oncologist for blood work, skeletal survey (yearly), and consult at the cancer center. There has been no sign of the myeloma returning and perfect blood counts. All was well for 7 1/2 years, I felt good and have been very active with cycling and tennis. Very blessed and grateful, but like us all on this journey, I knew that it would return, and that I would be on treatment again.
Now I relapsed last year, but they call this a biochemical relapse. I am slow moving and not high risk. No lesions. I too asked my doctor “What are we waiting for?" I got the same answers as you. However, this was before Covid-19, and he did say when my M-protein reached 10 g/l (1.0 g/dL), and of course the free light chains, etc. were unstable, I would be starting Darzalex, Revlimid, and dex. My M-protein is at 9 g/l (0.9 g/dL), and my lambda is rising. Ratio is still ok.
I get tested every 6 weeks now. Now with Covid-19, it’s still watchful waiting, and not starting treatment when my M-protein reaches 10. It’s hard to get our heads around that fine line of starting treatment too early and not starting too late. We have to have trust our specialists, but also need to be on the team to advocate for ourselves.
Sorry to be so long winded. I now know that I want to fight for some sort of anesthesia, and the lollipop sounds good. I am waiting for the call.
I wish you well in your waiting, Else. Stay safe, and thank you again; this column has given me hope and courage.
Diana
Hi Diana, thanks for sharing your story. Reading about your 7 1/2 years of remission (way to go!) gives me great hope. Wishing you a comfortable bone marrow biopsy with favorable results. Fight for the lolli!
Yowza!
I’m just so impressed with your courage and find you extremely inspirational.
Stay brave and strong Else. You put what we are going through in such real perspective.
Thank you
Wolly
Craig, you crack me up!
Wolly, thank you for reading and I appreciate your kind words. I feel lucky that there is so much support and camaraderie in the myeloma community. We are much stronger together.
Else,
Thank you for your column. I also have had smoldering multiple myeloma for a little over 10 years now, with numbers creeping up as time passes. But I have also had two doctors say I needed immediate treatment. A third, who diagnosed it, said I had 4, maybe 5 years (to what I am not sure; to live? to progression? it wasn't made clear), then when I did not comment, said, ok, maybe 5, maybe 10 but what could I expect, I was almost 60. (No return appointment made.) I sought a fourth opinion and have stayed with that myeloma specialist. So here I am now with the change in the numbers that indicate the need for treatment while everything else has (up to about a week ago) been stable. Fortunately I have the type of doctor you described as my caregiver: the excellent scientist who reads not just the journals but also the patient.
A side note: I had a bone marrow biopsy last Friday. They used a drill. It was my first experience with that, and the squirrel in my brain immediately started running around when I saw it. As we got into it, so to speak, and the sound of the drill started my still out of control brain and reminded me to grab the drill from the cottage so I could put up the towels rack in the bathroom. And I started to chuckle, which was a first for me during a bone marrow biopsy, and I have had I think five.
Thank you for your column and to all in these columns who are wrestling with this difficult disease and take time to reach out to others with kindness and support.
Thanks for your column and hope that things go better for you if / when you start treatment.
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