Disheartened and need to vent

[Tisha]

For some reason I thought the statistice for hearing preservation with hypo-FSR (either CK or other) was higher than it was.  I was just told today by one of the leading CK Docs that it is 80%.   The problem is that I am half deaf on my other ear.  I really don't hear that well out of it, but my AN ear (almost perfect hearing right now) compensates for it when I use my hearing aid.  So, 1 in 5 people lose their hearing with treatment.  That would be devastating for me.  However, he told me that I could lose all my hearing anyway even if the tumor doesn't grown in the watch and wait mode...that is a risk also.    I know there is a risk to everything, but this percentage isn't very encouraging to me.

I read where Dr. Lederman had said that 400 rads given over 5 days has a 94% hearing preservation over 500 rad given over 4 days, which has a hearing preservation more in line with 80%.  Now, I don't know if this statistic is valid or not, peer-reviewed or not.  Plus, I don't know what size of tumors he was talking about.  He also said that there is a better chance of hearing preservation if there is 48 hours between treatments.  I'm not planning on talking to him, but I also need to talk to JHH, where I think they used the same machine as Dr. L.   

I think I need to ask more about the 20% that lost their hearing...size of tumors, etc.   Maybe there is no correlation between anything, but I guess it wouldn't hurt to ask.  I really don't want to watch and wait because the tumor is irritating my nerve and I have hearing distortion already when I'm off steroids.  I"ve been taking 1800 mg of ibuprofen a day, it helps, but it doesn't alleviate the symptoms.

I'm just a bit bummed since yesterday's phone call.  Thanks for listening.   

[ppearl214]

tisha,

I'm going to try my best at this... bear with me.

As you note, all treatment options (regardless if microsurgical or radio) have risks... hearing loss being one of them (for all AN treatments). This, unfortunately, is a reality of our AN journey. Now, we know, as it pertains to radio, that with fractionation, it helps to provide a higher success rate in hearing retention.  In my case, with 5 day/dose fractionated CK, my team save 100% of my serviceable hearing (I am at 92% in my AN ear). I know of those that had 1 day/dose (GK) that went into radio treatment with very low serviceable hearing in their AN ear and did lose the remaining. I know of those that had fractionated CK and still had hearing loss (not completed by diminished).

to try to help the cause here.... if you sit back...and look at what is going to give you the best odds in saving your hearing, if that is your ultimate goal in your AN treatment... then go with your gut as to what will best help achieve your goal.  For me.... hearing preservation was my ultimate goal.  So was stunting the dang brain booger. For me and me alone, like you, I researched out all the radio options and took into consideration what would give me the best success rate in stunting the growth as well as saving my hearing.. and for me, I made my choice.

You are doing fantastic research...so, for you, for your ultimate goals in your AN treatment... for your situation (ie: location, finances, etc)... you will choose what will work best for you.

Gawd, I hope that came out well.
Phyl

[Tisha]

Thank Phyl,

I've had 2 doctors now that said that in their opinion I shouldn't watch and wait because of the symptoms I'm having now (the heightened noise issues due to nerve irritation), and my age.   All the statistics for CK are really good (tumor control, facial, balance, even hearing preservation).  I will just be devastated if I'm in that 20% minority.  I know there's risk in everything.  The choice is just so dang hard to make.  Actually, my gut tells me to do the CK, but it's only been 3 weeks since I found out and I"m still a bit stunned.  I have 95% hearing in my AN ear right now.  I really really want to preserve that.  And I don't want to be sitting around picking my toenails just hoping nothing happens!  LOL!

Dr. Lederman said that in his studies he felt that a 48 hr. wait between his treatments gave a better chance of hearing preservation than everyday...gave the healthy tissue time to heal if needed.  I wonder why they don't do it with CK?  Did you happen to run across any thing about that in your research?   Also, why was yours 5 day and they now just do 3 day?

Thanks for the words of encouragement!  Tisha

[sgerrard]

Hi Tisha,

The reality is that 80% chance is considered good when it comes to preserving hearing. I don't think any procedure has documented a higher rate than that. The main thing is to focus on the 4 out of 5 that do preserve hearing, not the 1 out of 5 that don't.

That number is an overall average. Some doctors are now investigating whether it is higher in certain cases. They don't have solid answers yet, but the suspicion is that if you have a smaller tumor, the chances are better, and if you go into CK with a higher level of hearing, the chances are better. So if you get CK on a small AN with 100% hearing going in, your chances of preserving hearing may be better than 80%.

None of the treatments - surgery, radiation, watch and wait - offer 100% certainty of success, with respect to control of growth, no hearing loss, and no facial nerve loss. That is is the reality of having an AN that we all have to accept. All you can do is research your options, pick the one that seems right for you, and hope for the best.

Cheer up, at least you are in good company.

Steve

[ppearl214]

Thank Phyl,

I've had 2 doctors now that said that in their opinion I shouldn't watch and wait because of the symptoms I'm having now (the heightened noise issues due to nerve irritation), and my age.   All the statistics for CK are really good (tumor control, facial, balance, even hearing preservation).  I will just be devastated if I'm in that 20% minority.  I know there's risk in everything.  The choice is just so dang hard to make.  Actually, my gut tells me to do the CK, but it's only been 3 weeks since I found out and I"m still a bit stunned.  I have 95% hearing in my AN ear right now.  I really really want to preserve that.  And I don't want to be sitting around picking my toenails just hoping nothing happens!  LOL!

Dr. Lederman said that in his studies he felt that a 48 hr. wait between his treatments gave a better chance of hearing preservation than everyday...gave the healthy tissue time to heal if needed.  I wonder why they don't do it with CK?  Did you happen to run across any thing about that in your research?   Also, why was yours 5 day and they now just do 3 day?

Thanks for the words of encouragement!  Tisha

ok, deep breath time! we're here for you. I know all of this is overwhelming... heck, many of us endure the same anxiety in trying to figure what will work best for us.  Hang in there... as you can see, we are here for you.

Ok, first things first.  I had 5 day for the same reason you note.  BI chose to do 5 day on me (and colorlady as well) to help save the hearing... to give the surrounding structures a chance to heal in between treatments and have minimal hit of radiation.  Typical protocols for CK are noting anywhere from 21Gy (radiation) to 30 Gy, dispensed between 3-5 days. As Steve noted here, my AN was 1cm at time of treatment (deemed small)... and with my hearing levels still high, my radio-onc spread it out over 5 days to do all he could to save my hearing. In my case, it has worked. Prior to me, I had not heard of anyone that had 30Gy or 5 days.. and I challenged my radio-onc on it when I was in the planning meeting with him.  I heard him out and it made sense to me... and now, over 2-1/2 yrs later, for me... it paid off.

I have heard of some that had waiting periods inbetwen treatment but not many.  I know with extended FSR and Proton, you have the weekends (ex. if someone is having 25-30 days plan, there are weekends in there that they don't do treatment) but most other fractionated that I am aware do have it done in consecutive days.

As Steve noted, hang in there.. the company is good.. the drinks are watered down... but, the support during this time is awesome!

Phyl

[ppearl214]

tisha,

Just a thought... I don't want you to become overwhelmed with this all... maybe take a step back.... allow your mind to absorb everything. I don't want you disheartened or anything.... take a day or 2 to sit back and just let it all sink in... we'll still be here..... no worries!

Phyl

[fbarbera]

For what it is worth, when I was researching my options, I asked Dr. Chang what is the best indicator of whether you will be among the 75% who retain hearing after the procedure.  His answer:  your hearing level before treatment.  In other words, the better your hearing pre-CK, the more likely you are to retain useful hearing after CK.  I was at around 95% before the procedure and still am about 14 months afterwards.  Fingers crossed!

Unfortunately, there is no 100% solution out there yet.  But right now, FSR offers the best shot at hearing preservation and the odds are pretty good. 

   

[goinbatty]

Just chiming in on this one.  I've had so much going on lately, I haven't been on here in awhile.  Phyl, my treatment was the same as yours over 5 days.  I agreed to that for the same reason as it was supposed to have slightly better outcomes with hearing preservation.  I've been tested once since treatment, and it's still in normal range, just slightly lower.  I'm due to go back soon so we'll see.  So far so good. 
Tisha, hope all goes well for you.
Sandra

[Tisha]

Francesco,

That's great news!  I'm 96% on AN side with audiology tests.  I did pose that additional question to Dr. Chang but haven't heard back from him yet.  I'm off of my steroids and I'm back to the bad distorted hearing.  I really think that Dr. Chang and Dr. Medbury are correct that because I have symptome now, that watch and wait is not a good option.

At this point, I'm still waiting to hear from Johns Hopkins and I've posed the 5 vs. 3 treatments to Dr. Chang.  I'm fairly certain that I'll be having some sort of treatment within 2 months, probably sooner if Christmas wasn't just around the corner, but I don't want to wait too long while my hearing is still good.

This is a very frightening decision because it could all just come crumbling down.  There are no guarantees, I know. 

Tisha

[Tisha]

Sandra,

I see you have CK, also.  What did your Doc tell you about 5 vs. 3 treatments?  Also, did you have them on alternating days or consecutive days.  I'm thinking that 5 is the way to go.

Tisha

[goinbatty]

If I remember correctly, he said that with 5, hearing preservation was statistically slightly better with the thought being that it allowed the surrounding tissue time to recover.  I looked back at my audiograms.  At diagnosis, the AN was at 100%.  When rechecked around 3 months post treatment, it was 96%.  I feel like it may have decreased a little since then but not enough to cause any problems.  This may sound crazy but the way I've kept tabs on it, is by rubbing my fingers together right at my ear and comparing it to the other side doing the same thing.  Pretty high tech huh.... 
My treatment was over 5 consecutive days. 
Sandra