is this another side effect?

janewalker · 08-28-2006, 06:03 AM

Have been on Herceptin now for five months of my one year. I don't really get any side effects at all apart from being incredibly tired - all the time!! But who is to say that isn't a side effect of the recent Taxotere. My problem is, pounding in my ears which I have asked anybody that will listen about. It is normally brushed aside by my oncologist and GP and Cardiologist. My cardiologist did an echogram becuase of this but could find nothing amiss. Just when I have decided to put up with it, I have suddenly realised that my hearing is going. I was getting so fed up with saying 'pardon' all the time, telling everybody to stop mumbling and it suddenly dawned on me that it is probably me.

Has anybody else suffered from this? I have done a few searches but come up with nothing. I am sort of hoping there is in a way!!

Kind Regards,
Jane (in France)

tousled1 · 08-28-2006, 06:34 AM

Jane,

I haven't heard of hearing loss as a side effect of Herceptin but I would not doubt that it could be. Oncologists seem to dismiss any questions about possible side effects of Herceptin. I wish the oncologists and the makers of Herceptin would read the posts on this board to gain insight into what side effects women really are experiencing. I know that Herceptin is a God send but it does not come without side effets.

CPA · 08-28-2006, 06:47 AM

Ma femme reçoit Herceptin chaque trois semaines...

Sorry, it has been since college that I spoke french. I am going to finish in english (not much better either)!

She has had troubles with balance since around the end of her chemo. All of her docs say it was an inner ear infection and that it would take a while to clear up. She is much better now than a few months ago, but still gets dizzy sometimes especially when looking up/down.

Anyway, I guess I am trying to say that you may want to check for inner ear infection if it has not already been done. She has also had recurrent sinus issues that we think may have played a role in causing the ear infection.

kristen · 08-28-2006, 08:31 AM

Jane, Were you by any chance on the TC-H combo? I have some hearing loss and it can be a side effect of Carboplatin. I went to an ENT and they did a hearing test on me and I have the hearing of a person 10 years my senior.

Don't know if anyone else on this combo had hearing loss or not, but I too, was tired of having people repeat things to me. I can't hear my cell phone ring in my purse, my daughter has to tell me it's ringing....
It's frustrating! If you were on Carbo you might want to go and get them checked by an ENT and see if there is an infection or if indeed you do have some hearing loss, I hope not. My best to you.

karenann · 08-28-2006, 10:35 AM

Jane,

I had a terrible problem with one ear the entire time I was on Herceptin. I suffered from dizzy spells, ocular migarines and what I would describe as, a swollen/clogged ear. Just recently (right before my last Herceptin infusion) I had to go to the ER because I had such bad vertigo and I couldn't get it to stop. It was a benign condition, but I do feel that the swelling of my ear, caused by the Herceptin has been the culprit of the above symptoms.

I feel very blessed to have been able to receive Herceptin and would do it again in a heart beat... even with all the side effect/symptoms I experienced.

Hope this helps. Hang in there!!

Karen

koolbreeze · 08-29-2006, 10:41 AM

Now that you mention it, I have been having periodic earaches and could not understand why my ear was hurting. I will now pay attention to when this happens and see if it can be related to the herceptin.

My onc always rejects any notion that herceptin causes any side effects other than the first infusion and the potential heart issues. They just really don't know enough about this drug yet to be certain of the effects. Different people react differently to the herceptin.

Take care and best wishes. Linda

janewalker · 08-29-2006, 04:04 PM

thanks to you all for replying - stuck on my own here out in france makes me very grateful for this forum. I feel very lucky to be having Herceptin at all as had I been in the UK still, I would have struggled to get it. I really just cannot get any information from anybody on side effects and what is normal and what isn't. When I mentioned to my oncologist (reluctantly) that I had lots of joint pains, her answer was, 'probably a little bit of Osteosporosis, don't worry', when I mentioned the pounding in my ears, she said, 'probably high blood pressure, don't worry'. And so it continues........... Thanks to you all again. Jane

Bev · 08-29-2006, 06:58 PM

I too had an ear block for a month or two to the point I couldn't hear. I normally have sinus and allergy issues. Throwing herceptin in just added. Still on Herceptin but my ears cleared on their own. Took Claritin. It's not all in your mind. BB

janet/FL · 08-30-2006, 05:15 AM

On Taxotere/Herceptin, i had buzzing in my ears that sounded like mosquitos when I laid down.
Janet

R.B. · 08-30-2006, 06:12 AM

Please see posts on omega three and six, POSSIBLE impact of Herceptin include intervention in processes by which the body makes long chain fats which would include DHA.

If the body is unable to make long chain fats the only way is to supplement with fish oil or equivalent.

Bone loss joint pains visual problems have all at some level shown positive response to omega threes long cahin fats.

It is complex and this is just a general obsevation. There is a search option on the purple bar above click and enter your chosen search term. omega three omega six DHA flax seed (or flaxseed) etc

There are no trials on this specific subject I have seen but at an anecdotal level there have been a number of posts on this site by people taking fish oil saying they were not experiencing problems.

If it does not help with Herceptin side effects it should help anyway with general health.

Fats have significant impact so please discuss dietary changes with your medical advisor. Unfortunately nobody I am aware of seems to have trialed herceptin in conjunction with fish oil to see if they have synergies.

RB

sadie · 08-30-2006, 09:29 AM

I've had tinnitus (ringing in the ears) for years; BUT when I started Herceptin/Taxol combo, it became worse and worse. It finally stabilized when I finished the Taxol and was getting Herceptin alone. I am now 4 months post-taxol treatment and it hasn't gotten any better.
Say what? lol

Helen · 08-31-2006, 10:55 AM

I was on Taxotere and Carboplatin combo with Herceptin back in July - Dec 2005 and I remember having ear aches. I kept on complaining to my onc that I may have an ear infection. Aches were gone after I finished my chemo.

Helen

janewalker · 08-31-2006, 02:48 PM

Just been to see my GP here in France re my ear problem and he was brilliant. He is sending me to a ENT specialist but did consult his records and it does state that Herceptin can cause deafness. The pounding in my ears, he said, could be caused by stress. He did call it something but he couldn't translate it into English for me. I feel a little happier thats it not all in my mind, but I suppose I should be worried about losing my hearing and is it permanent? Thats for another day!