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Has anyone had hearing loss after Azacitidine injections?
Blood Cancers & Disorders | Last Active: Nov 7 6:14pm | Replies (5)Comment receiving replies
After the hearing loss and the Vidaza injections stopped on day 3, we were sent to see a ENT. He had an exam, and hearing test. Test showed that he had total loss in one ear and partial loss/frequency difference in the other ear. Nobody knows why. He was put on a strong steroid for 8 days and then a taper down. His hearing did improved some, although not back to normal. I noticed, on his chart the final results we have been waiting on were posted, the cytogenetic and mutations. He has the TP53 mutation, multi hit, complex karyotype. From everything I have researched it is not good. He is scheduled to see the oncologist/hematologist on Monday at which time I expect him to give us this information. He was also scheduled to start injections again Monday but I have a feeling his treatment may be altered. Right now I am holding my breath, hoping for any good to come out of this, although not very hopeful. My husband is unaware of the results, since I decided not to share them with him and let the doctor give us the final results, just in case I am going to the worst case scenario out of fear. We live in one state due to my husband's work and were just two years short of his retirement, but plan to move back to our home state of NC at the end of February. I am not sure how all of this will alter our plans now. We are closer to MD Anderson now, but have no family support here and that is why he has chosen to move back to NC. Duke is probably where we will most likely seek treatment once we move back. I will post again after I find out what the doctor relays to us.
Replies to "@loribmt After the hearing loss and the Vidaza injections stopped on day 3, we were sent..."
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Hi @vlr4. You’re not alone with letting fear channel your thoughts to the worst case scenario. We humans just seem predisposed to go there for some reason. Been there myself.
It’s so hard not to look at test results when they’re first posted and then go investigating! I’m guilty too! But in cases like this, it’s important to let the doctor discuss the results before making assumptions of the worst case. Each person’s situation is unique to them, in spite of statistics.
From my own experience, AML can be caused by several random mutations, some being more challenging than others to wrestle into control. Statistically I shouldn’t even be here. My husband and I were just talking about that today. Seven years ago at this time I felt perfectly healthy, oblivious to the fact that leukemic cells were proliferating out of control and would have me near death less than months later. The dire statistics meant little as my treatments worked and I became a check in the + column.
So we’re going to be optimistic about your husband’s results and expect the doctor will have a plan of action in place to discuss with you on Monday. I know it will be a long weekend for you until then!
I’m glad that there’s been some reversal in the loss of his hearing. What a weird thing to happen. Hopefully he’ll experience continued improvement over the next few months.
For right now, being seen at MD Anderson is a great choice for your husband. It’s a top-tier cancer center with a deep bench of experienced hematologists. When things are under control it will be a better time to move back to your home state. Though I can understand how challenging this is without a support system of family nearby. Gosh, you have so much on your plate right now to handle. I’m here for you any time if you need to vent or ask questions. Sending positive thoughts your way…and please, exhale! Hugs.