As I have posted before, my daughter had an emergency tracheotomy in July for a plasmacytoma. That was followed by 2 doses of high dose DCEP (dexamethasone, cyclophosphamide, etoposide, and cisplatin), which she just finished 2 weeks ago.
She has lost her hearing. If we talk loudly and face her, she can read our lips. Her hearing has been tested by the ENT doc that did the tracheotomy. He is saying maybe tubes in her ears will help. Right now, she is in the hospital from side effects of the chemo and they can find nothing physically wrong with her ears.
My question is how common it is for high-dose chemo to cause hearing loss, and what can be done to resolve the problem?
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Re: Loss of hearing during DCEP treatment
Hi Terrij,
Sorry to hear about this. Your daughter has been through so much.
I am wondering if the EP in the DCEP cocktail is the culprit?
http://www.ncbi.nlm.nih.gov/pubmed/3152939
Sorry to hear about this. Your daughter has been through so much.
I am wondering if the EP in the DCEP cocktail is the culprit?
http://www.ncbi.nlm.nih.gov/pubmed/3152939
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Loss of hearing during DCEP treatment
Terrij,
I started losing a lot of my hearing in my right ear 4 years ago in the latter phases of my induction therapy with Velcade and dexamethasone. I just lived with it for a while and, when it seemed to be getting worse, I finally went to an ENT and was tested.
I was given a hearing test, which confirmed it appeared to be only the right ear, and it also confirmed the frequency range that was lost and that it was only my right ear that was affected. This indicated that it did not appear to be age- or environmental- related hearing loss, and it was thought it might be related to the drug treatments I had been on. But that is not absolutely certain.
They did some kind of test to confirm that the mechanical structure of my ear was intact and that it appears the loss is a result of some kind of damage to the auditory nerve between the ear and the brain. I have been given two a MRIs to look at the ear structure and for a possible rare optic nerve tumor, but nothing abnormal has been found.
I still get occasional hearing tests to track any progression. There has been no improvement over the last four years. It appears there is nothing that can be done to correct it, but I have not sought a second opinion.
Eric
I started losing a lot of my hearing in my right ear 4 years ago in the latter phases of my induction therapy with Velcade and dexamethasone. I just lived with it for a while and, when it seemed to be getting worse, I finally went to an ENT and was tested.
I was given a hearing test, which confirmed it appeared to be only the right ear, and it also confirmed the frequency range that was lost and that it was only my right ear that was affected. This indicated that it did not appear to be age- or environmental- related hearing loss, and it was thought it might be related to the drug treatments I had been on. But that is not absolutely certain.
They did some kind of test to confirm that the mechanical structure of my ear was intact and that it appears the loss is a result of some kind of damage to the auditory nerve between the ear and the brain. I have been given two a MRIs to look at the ear structure and for a possible rare optic nerve tumor, but nothing abnormal has been found.
I still get occasional hearing tests to track any progression. There has been no improvement over the last four years. It appears there is nothing that can be done to correct it, but I have not sought a second opinion.
Eric
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Loss of hearing during DCEP treatment
Since my stem cell transplant in 2013, I have experienced intermittent hearing loss, mostly associated with another infection (pneumonia this winter, a cold last fall, flu last year). It has been in both ears, can last for more than a month, and can be severe – up to a 90 dB loss.
I went to the ENT and it seems that my Eustachian tubes have been compromised by the chemo so they are now easily blocked, but I did not have any nerve damage. He prescribed a steroid nasal spray that works quite well, although it takes some time.
Good luck!
Ginny
I went to the ENT and it seems that my Eustachian tubes have been compromised by the chemo so they are now easily blocked, but I did not have any nerve damage. He prescribed a steroid nasal spray that works quite well, although it takes some time.
Good luck!
Ginny
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Ginny - Name: Ginny
- Who do you know with myeloma?: self and four friends
- When were you/they diagnosed?: October, 2012
- Age at diagnosis: 62
Re: Loss of hearing during DCEP treatment
I experienced what seemed to be fairly significant hearing loss during my autologous stem cell transplant. A few months after transplant, I noticed that my hearing had improved slightly but not completely. From what I've read, hearing loss can be a form of neuropathy. I've wondered if the lack of complete improvement is due to the maintenance drugs I'm taking (Velcade and Revlimid).
I did not have any auditory testing done, so this is subjective and based on the fact that I now have more trouble hearing conversations, movies, etc. than I did prior to transplant. My family and I have all noticed the difference. However, my other side effects are minimal so I feel very fortunate!
I did not have any auditory testing done, so this is subjective and based on the fact that I now have more trouble hearing conversations, movies, etc. than I did prior to transplant. My family and I have all noticed the difference. However, my other side effects are minimal so I feel very fortunate!
Re: Loss of hearing during DCEP treatment
Ginny, How did your doctor determine that your Eustachian tubes have been compromised specifically by the chemo? How did he determine that there was no nerve damage? Is there a test for this, especially the nerve damage? I ask because although we are well aware that dexamethasone and probably other myeloma meds can affect hearing, my ENTs have never done anything special to determine that the loss I have experienced this last year is specifically related to my treatments. They make an assumption, I think, that the drugs as well as my 70 years are the cause, and that under the circumstances not much can be done.
Last edited by mrozdav on Thu Sep 03, 2015 1:28 pm, edited 1 time in total.
Re: Loss of hearing during DCEP treatment
Thank you for your responses. There is so much going on right now as my daughter continues to be in the hospital. They have decided to put tubes in her ears but the oncologist needs to fight for the ENT doc to do it while she is inpatient. Apparently they only do it outpatient. I'm not sure if this is because of insurance.
She can not leave the hospital now as she has fluid in her lungs which they say is from myeloma, so they plan on draining and doing radiation. Although the DCEP shrunk the plasmacytoma, they want her to keep the tracheotomy for now.
I think the clinical trial for T-cell therapy will no longer be available with the condition she is in, but the doctor says he is not ready to give up the fight. Of course that decision is up to Sara because quality of life has seriously deteriorated.
She can not leave the hospital now as she has fluid in her lungs which they say is from myeloma, so they plan on draining and doing radiation. Although the DCEP shrunk the plasmacytoma, they want her to keep the tracheotomy for now.
I think the clinical trial for T-cell therapy will no longer be available with the condition she is in, but the doctor says he is not ready to give up the fight. Of course that decision is up to Sara because quality of life has seriously deteriorated.
Re: Loss of hearing during DCEP treatment
Hello Terri:
I have been following your posts, and I am sorry to hear of all your daughter's difficulties. You are in our prayers. I hope the treatments start working better. JPC
I have been following your posts, and I am sorry to hear of all your daughter's difficulties. You are in our prayers. I hope the treatments start working better. JPC
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JPC - Name: JPC
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