Letters From Cancerland: No Bones About It
After reviewing how long I have had multiple myeloma, my myeloma specialist this July asked me if I had ever had a bone scan done. When I said no, he suggested I get one to establish a baseline. After so much treatment, what were my bones doing?
As we discussed the impact of my myeloma treatments, especially steroids, on the bones, he said to talk to my dentist if it turns out that I have bone density issues. I would need a clean dental bill of health before starting any bone strengthening treatment.
Due to a medical fluke (getting the contrast from another medical test to move through and out of my colon) and a long-planned trip to the Pacific Northwest to be with family, it was September before I could get the bone density scan done.
The result?
Osteoporosis in my spine; osteopenia in my femur.
My myeloma specialist weighed in by email: start treatment when I got my dental clearance. He expressed no preference on what type of treatment I pursued for the osteoporosis.
I followed up with my personal physician, who said I should get a full dental exam. She went on to discuss the treatment options for osteoporosis: oral medications, or infused medications. Per her experience, the oral medications were great for the compact (“hard”) bones, like the femur, but less than great for the cancellous (“spongy”) bones. Her preference was for me to take an oral medication because she was concerned about my body’s reactions to the infused medications. “If you’re taking a pill, we can stop it immediately. If it’s an infusion, it’s in you for a long time.”
I have used the same dentist for the last 20 years. As I have shared in a previous column, I had the world’s worst dentist for the first 18 years of my life. Even before the myeloma was diagnosed, the state of my mouth was mediocre even with constant dental attention and a dental hygiene routine I have now followed for almost 40 years. Add the myeloma treatment to the picture, and the results are not pretty.
At my dental exam, my dentist ordered a panoramic x-ray as well as some specific shots of my molars (my remaining molars, I should say). After a few minutes, he came into the exam room and pointed to the images on the computer screen.
“See that, April? That’s an infection at the root of that tooth.” He paused, then finished his thought. “That guy’s going to have to go.”
We talked about the issue of osteoporosis. My dentist said that dentists were not as worried about bone strengthening treatment as they used to be, but it was still something to watch. “We now have better ways to deal with the negative side effects,” he said, before adding he definitely wanted me to take an oral rather than an infused medication.
My dentist sent me to an oral surgeon, the same one who had done an extraction on me eight years ago. He looked at the panoramic film and agreed: it had to come out.
“But I need to extract this tooth when your immune system is at its peak, which I would think is as far away from your next myeloma treatment infusion as possible. Let’s set this for a date farther out. If your oncologist says otherwise, we’ll move it up.”
And the oral surgeon, like my dentist, expressed a strong preference for treating the osteoporosis with an oral medication.
The physician assistant at my next oncology appointment agreed to the suggestion of scheduling the extraction just before my next myeloma treatment infusion. So the date held and the tooth came out.
Did I happen to mention that my personal physician, the woman who made the initial tentative diagnosis of multiple myeloma 14 years ago, retired at the end of September? When I met my new physician in late October, just prior to the tooth extraction, we discussed the osteoporosis and treatment options. She too preferred the oral medication, even before I told her what the dental community said. She prescribed alendronate (Fosamax), 70 mg once a week, after I got the go ahead from my dentist.
The next time I saw my oncologist, he had been out of the office for the two previous appointments and did not know the whole story. As soon as I said “osteoporosis,” he said “let’s schedule you for an infusion of Zometa [zoledronic acid].”
No, two doctors, one dentist, and one oral surgeon, said oral. My oncologist rolled his eyes, but did not fight it.
I recently saw my dentist post extraction, and he examined my gum. “It looks good, April. But don’t start the medication yet. Give it another week.”
I already have the new medication sitting on my counter. The instructions are daunting. Take it with lots of water. No food for 30 minutes afterwards. Do not lie down afterwards for at least 30 minutes.
And those are just the highlights.
The instructions clearly lean toward taking it first thing in the morning. My morning schedule is crazy enough without throwing in a finicky pill schedule that I know will lead to an occasional week when I take my dose at some odd hour of the day. Given my unusual work schedule, I anticipate gulping a pill, with the requisite eight to ten ounces (240-300 ml) of water, before a mediation, or postponing lunch after a mediation until I can make it work. Of course, with the recently diagnosed Type 2 diabetes, the benefits of keeping to a fairly regular food schedule is important, so I have to figure that piece out too. Fortunately, at no time during my work day do I have reason to lie down, so that should not be an issue.
I guess I’ll have to gnaw on this for a while.
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 .
Ugh, it's always something, isn't it. Just glad you are being taken care of. You have such a beautiful smile, too. Take care!
Dear April,
Your column struck a chord with me since it was with osteoporosis that I was originally diagnosed, before it became a myeloma diagnosis. I remember my family physician ordering a DEXA scan as part of a routine annual check up in 2008. I still have the report that reported a T-Score of -3.7. My doctor, after discussing this finding, put me on Fosamax in early 2009, with the same weekly instructions that you have, it seems. (I don't know what the dosage was.)
It was about six months after that, when I had compression fractures of L1, L2 and L3, that the extreme pain and sudden problems related to that, that I got the myeloma diagnosis. My oncologist immediately started me on infusions of Aredia (pamidronate). I often wondered whether the earlier treatments with Fosamax saved me from worse bone damage!
Later again, when I was considering what maintenance treatment to take for breast cancer, the topic of bisphosphonates came up again. I had six dental crowns put on to get my teeth in good condition. My doctor (a new one, since my original doctor also moved out of family practise) ordered another bone densitometry scan. This time, nine years later, my lowest T-score was -1.4, and I was considered to be in a normal range for a control population. So I think that the bisphosphonate treatments helped, and I did not go back onto further bisphosphonate treatment then, in 2017.
Hope that helps, and good luck with everything!
April, I'm so sorry to hear about the osteoporosis and osteopenia. Bone issues are problematic at anytime in life; but when you're already dealing with myeloma and diabetes, it makes things especially worrisome.
I find it comforting when all my husband's specialists agree; when they don't agree, or when we're presented with "options" to choose from, it gets significantly more complicated. The good news is, you had a majority of educated opinions in agreement that you should take the oral medications, with only one dissenting opinion. Those sound like good odds to me. Plus, I like the idea of being able to make a change to another treatment fairly quickly without having the drugs remain in my system. I hope that the oral drugs are working for you! Best of luck!
Wow, April! As if dealing with multiple myeloma is not enough, you have to deal with osteoporosis. I really appreciated your discussion of the treatment for osteoporosis. I did not realize that infusions served one purpose and oral medication another in the treatment of osteoporosis. I found it interesting that your medical team recommended one treatment and the oncologist another. It illustrates the complexities of providing sound medical advice and treatment for people with diseases such as multiple myeloma and diabetes. I wish you the very best with all your conditions and pray you find the optimal treatment for all.