Stage 4 cancer survivors live with the cancer as well as the possible fallout from lengthy cancer treatments and the long term side effects of these chemicals. The drugs that save us can also compromise our health.
An example is bone strengtheners. When I was diagnosed with countless bone metastases in late 2015, my oncologist prescribed me monthly Xgeva (denosumab). The treatment intervals eventually increased to six months and I have been taking Xgeva ever since. I haven’t had any additional fractures or metastases since that time.
I can walk, hike, and live my life without worrying about bones (for the most part). I am grateful knowing that in the past people with weak bones suffered significant damage that can now be prevented.
How do bone strengtheners work?
These drugs (Prolia, Xgeva, ibandronate, and Zometa) prevent the buildup of painful (sclerotic) (or extra bone) lesions that were the cause of my metastases, according to Breastcancer.org. The drugs also prevent the recoil – the lytic response – of bone tissue that makes the bone prone to fracture – think Swiss cheese. The drugs coat the bones and block the normal osteoclastic and osteoblastic (healing) action of the bone tissue. Everything is fine, right?
I discovered the dark side of these drugs when I had a toothache last summer. Rather than deciding that my horrible jaw and head pain was more like cancer, I decided it was a dental problem that could easily be fixed.
My dentist poked around and thought there might be an infection in the root. She drilled out the old filling and replaced it with a temporary filling containing antibiotics. The pain got better, but came back a few weeks later as bad as ever.
My regular cleaning was scheduled, so I explained the situation to my dentist. He (different city, different dentist) tapped on the tooth, which knocked me out of the chair. His next words were, “How about a root canal?”
Well, the tooth was the last in the back. I am 69 years old and have had stage 4 cancer for six years. It seemed silly to spend a lot of money on a tooth that no one sees and that I won’t even need in a few years.
Within days I decided not to have a root canal or a crown and asked to be referred to an oral surgeon. I asked the dentist about the risks of taking bisphosphonates (like Xgeva) for six years. He felt there was definitely a risk and said to discuss it with the oral surgeon.
I requested a pre-surgery consultation on the day of my appointment to have my tooth pulled. The price of $165 sounded good (I’m on Medicare). The surgeon mentioned a blood test that would indicate the likelihood of wound healing when I hesitated to go ahead with the operation.
I left his office with a prescription for a C-Telopeptide Beta-Cross-Linked Serum blood test, leaving behind a counter full of instruments of torture and a long waiver form saying I was aware he was likely that I would have postoperative problems because I took bisphosphonates.
What were the likely problems? The same cellular activity that makes bone reinforcements effective also leads to unintended consequences. Normally, the body is able to fill bone voids and heal bones by sending cells to regenerate tissues. Bone strengtheners block this activity. They cover the bones that anchor the teeth. The maxilla contains the upper teeth and the mandible contains the lower teeth. These drugs prevent the bones from resorbing and rebuilding after a tooth extraction.
I was wondering if it would be worth stopping Xgeva for a few more months. I had already stopped for six months. It wouldn’t help. Bone fortifiers last a long time in the body. Patients with bone metastases continue to take them for years.
The inability of the bone to heal makes extractions and dental implants downright dangerous for cancer patients. I had no idea, and others might find themselves in the same situation. Patients may not be aware of the risks until the dentist or oral surgeon gives them a release form to sign.
I can’t remember if my oncologist told me to get my teeth done before I started treatment, but if he did, that was years ago when everyone thought I would be dead in two years.
What’s the worst that can happen?
After a tooth extraction, the hole left in the bone and the tissue surrounding the socket heal and cover the opening, normally in six to eight weeks depending on the size of the tooth and the type/difficulty of the removal. extraction, according to Dental Partners of Boston. Patients taking bone reinforcements often find that neither the bone nor the tissue heals. The open wound becomes infected repeatedly.
Sometimes it reveals a condition known as osteonecrosis of the jaw (ONJ). The term actually means jaw bone death. As Breastcancer.org explains, with ONJ, shards of bone can break away from damaged jawbones and slowly work their way to the surface of the gumline. Patients often face recurring pain and infection until the bone shards eventually fall off. ONJ is unhappy.
I did some further research while waiting for the blood test results. The tests would indicate the levels of osteoblastic and osteoclastic cells needed for bone healing. A normal range for post-menopausal women is 104 to 1008, according to ARUP Laboratories. A result below 150 indicates a high risk of postoperative disorders. My number was 75. No extractions for me.
A root canal and crown, at $3,800, was my only option. I made an appointment with the endodontist. This process works because the tooth stays in place without bone involvement. It heals quickly because it does not invade any tissue apart from the tooth itself.
While in the root canal chair, I learned more. The chair assistant said her brother had the problem and had been hospitalized three times in the past year for infections where a tooth had been pulled out.
The endodontist stopped halfway to tell me the tooth was badly cracked and normally he wouldn’t even try to fix it. The crown might only work for two to five years. A serious case of putting lipstick on a pig.
The bone reinforcement situation motivated the dental treatment decision. It took a lot of time in the dental chair and a lot of spending money for a temporary fix. I’m still glad I did.
I found help for some of my living costs. This facilitated the reimbursement of dental expenses. I worked with the social worker at my local cancer center. She was able to find an unrestricted grant that helped cover rent and utilities for a month.
There is no way to predict when a tooth will go bad. It seems ridiculous for those of us living with stage 4 cancer to spend so much on tooth repair. That said, I use extraordinarily expensive treatments every day just to stay alive. Life is more enjoyable when I can live without constant pain, recurring infections, and dental issues that add to an already complicated life balance.
What advice do I have for other cancer patients who are taking bone reinforcements and are having toothache?
- Tell your dentist that you are taking bone builders or bisphosphonates
- Take a blood test before scheduling oral surgery
- Ask the social worker at your cancer center if financial assistance is available if you need it
Two months later, I can eat and drink without pain. I still have a good quality of life even six years after a stage 4 diagnosis. Protecting this quality makes life with cancer closer to life before cancer and for me it is worth it.
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