Anonymous asked in HealthDiseases & ConditionsCancer · 9 years ago

My mom was diagnosed with Acute Lymphoblastic Leukemia, but her jaw hurts like crazy? Why?

About 2-3 Months ago, she was beginning to feel that uneasy feeling in her jaw and bottom teeth. She went to see a dentist, but he found nothing. He told her it could be from something else, maybe something neurological. She left it at that...two days later, we rushed her to the hospital from the pain. We thought it was Strep, but they diagnosed her with Pharyngitis (which is nearly the same, just a strong sore throat) that night. (But that turned out to be false.) They gave her all kinds of medicine for pain, but nothing worked. They finally gave her some Steroids, and it worked....for a little while.

The next day she was fine, walking around and talking normal, but the following day, it was back to square one. Major pain again, she compared the pain to it feeling like her mouth and jaw was on fire. It was so strong, that her jaw was beginning to numb. I brought her to her doctor that she usually visits, and they checked her out. They were thinking Strep too. They ran some test and drew blood from her but it would take about a day for the results to come back. So they gave some injection for the pain and some subscriptions but they completely failed. Didn't work at all to ease the pain. So they sent us home but were to come back the next day for the results of the blood test. That never happened.

For the second time we rushed her to the hospital, this time they kept her over-night. They were checking everything, running MRI test to X-rays and then after about a full 8 hours into the next day. One doctor said "This looks like a type of Leukemia." But they needed to check the Bone Marrow so they did the Biopsy. They had to do it to give them the answers they needed, they claim. So as we moved from room to room, and a team of Cancer doctors came to us and told us it was Leukemia. They wanted to start Chemo as soon as possible, but they had to make sure which type it was.

They figured out which one it was and called it Acute Lymphoblastic Leukemia (ALL) and started Chemo in a few days. She stayed in the hospital for about 3 weeks. Some of the roughest weeks of our entire lives, but she pulled through. She was very weak once she got out and came home, but there was no sign of the jaw pain anymore. Although, her jaw was still numb at the bottom, the doctors gave no reasoning behind it.

Few weeks passed, and she was back in the hospital for her 2nd cycle of Chemotherapy. Everything was going ok, and her the Cancer was not showing up as much anymore, but a week after her second cycle, she began to feel tired and had a small headache. She thought it was nothing, that maybe she had been trying to do too much, so just rested. But it got worse. The pain in her jaw was returning, and it was still numb. Two days later, we're back in the ER.

They began running test on her, they thought some cancer could have gone to her brain. But everything came back negative. She was ok in all areas but still had this major pain in her jaw. Finally, the doctors were trying to find what was the cause of this. At first, they said it was an ear infection, then thought TMJ....and after that they said it was an infection in the bone. Or thought it could be one of those problems. They gave her anti-biotics and sent her home but the pain continues right now. And she can't handle it anymore.

I looked up some things and maybe it could be ONJ - Osteoncrosis of the Jaw, but I'm no doctor, and I can't run any test on her. So maybe someone out there has seen this somewhere before and could help us on what to do. How to reduce the pain. Help in general.

Thank You for reading.

2 Answers

  • 9 years ago
    Favorite Answer

    Bone pain can happen before a leukemia diagnosis. I would think they would've thought of this already, though, so maybe they feel the type of pain didn't equate with bone pain.

    Once chemo has begun, jaw pain is actually a not uncommon side effect of vincristine, which is used in acute lymphoblastic leukemia treatment (ALL.) So is nerve pain. Have they tried any medications that help with nerve pain, like Neurontin or Lyrica?

    If they've done MRIs, they probably would have noticed if it was osteonecrosis. It's something to keep in mind, though, as ALL treatment involves heavy doses of steroids in the first month. High doses of steroids (especially Decadron, but also Prednisone) can cause osteonecrosis. It sounds like she had steroids before diagnosis, as well, so it's a valid concern. But again, an MRI would likely show this.

    I do hope you get some answers soon. That's got to be miserable for your mother, and hard for you to see.

    Source(s): Work in pediatric oncology with many patients who have ALL.
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  • Anonymous
    4 years ago

    Hi, You really need to talk to the doctors who have been treating her. There is a lot of information on the internet but trying to understand what it means is difficult. Each case can be different. One table shows a 40 to 60% survival rate for bone marrow transplant patients after 6 years. The graph is flat at that point , so it suggests that if you make it 6 years you may live a long time after that. They dont tend to talk about cures with cancer . They talk about remissions , relapses and survival rates. From the stuff on the internet it seems a particular type of bone marrow transplant has the best recovery rates. The doctor can give you a better understanding of the illness, and any restrictions there might be for the future. Good luck whatever you decide. Dont be ashamed if you decide that you cant marry the girl. It is very hard to deal with that sort of problem at a fairly young age . Do try though to be there for her as a friend .

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