Treatment Journal

[Bobette]

Ashman (Bill),

Great to hear from you!  I am glad that things are going better and that the steroids aren't giving you any problems.  I guess this is somewhat a walk in the dark, we never know how our bodies are going to react to the treatment.  It is good to hear that things are not too bad -- I definitely believe you on your way to recovery.

We have a busy month in June, so I opted to schedule my CK in July.  My symptoms seem to be changing lately, I had about a week of feeling really great, my hearing seemed to improve, my tinnitus quieted down a little bit and the pressure seemed to disappear.  Things have worsed a little this week, but it has been a stressful week.  Stress seems to really affect how I feel.  Dr. Soltys showed me my tumor on the computer and it is actually bigger than what UCSF had told me it was. 

My son is really glad that I am moving forward with the treatment and not staying in the watch and wait.  He is planning to move to Southern California at the end of summer and wants me to be on the way to recovery before he leaves.   

Looking forward to hearing about your continued recovery.  I would also love to hear about how your wife and children are doing with all of this. 

Bobette

[ash]

Hi Bobette and Suu,

Its been a while since I have signed on, I guess it's from being busy and the other is trying to forget. I have had my ups and downs but generally ok. My tinnitus is still louder than before and hearing not as good, a hearing test showed only a little hearing loss. Dr. Chang says that many people feel their hearing had gotten much worse but tests show only slight loss. The last 2 weeks I have experienced some wonkyness.  My MRI is in November and that is something that stays on your mind more and more the closer it gets. Thanks for your support Suu and Bobette I hope everything has gone well.

[ash]

My tinnitus and hearing has gotten worse. Also during a fast walk or run, each time I land on a foot the tinnitus gets louder for that split second. I contacted Stanford and they want another hearing test, just waiting for the appointment.  Thanks

[Suu]

Hi again
Are you getting a lot of support at home?  Do you have tinnitus in both ears?
I can almost 'hear' you through your journal and wish I could be right next to you as you head into your future.  Second best is good enough here though as we all close our cyber arms around our friends so keep on diarising so we can be here when you either need us or if you just want to say hello.

Bobette - We are here for you too on this wonky journey.  Your son sounds very caring and that must be his upbringing so congratulations on being a good mother. 

Suu xxoo

[ash]

Hi Suu
I think the tinnitus is only in my right ear. I had my six month MRI today and overnighted it to Stanford, I hope it shows necrosis. I have tried to forget about what may lie ahead if the treatment failed because of already being deaf in the opposite ear. But it is getting tough, I just hope I can sleep until I get the call. My older boy keeps me busy being his soccer coach and that helps to keep it off my mind. Thanks for your support, you have a great outlook on things. I'll post as soon as I get a call from Stanford.

[ash]

Six month MRI showed AN grew 1 cm which is normal. It also showed the center getting dark, hopefully is the beginning of necrosis. I will need MRIs every 6 months for 2 years and then yearly until needed.
Thanks for everyones support.

ASH

[ash]

Completed my 1 year MRI and still no growth! The center is now white and I was concerned that necrosis was reversing. Laurie at Stanford who has been great explained that this is a normal condition to turn white at the 1 year MRI. She also explained that some tumors do not turn black at the 6 month MRI and that is still ok. The main concern is no new growth, the black center at the 6 month MRI helps to confirm that the tumor looks to be dying. My next MRI will be in one year and I feel positive there will be no new growth even though the closer to one's MRI day it's natural to get stressed. I still have hearing issues, at times it feels as if I have water in my ear or stuck my finger in my ear when trying to hear. I had a hearing test and some things showed better and some worse. But it had been explained to me that the same person could give you a second test and have different results. As long that the tests are similar that's good. Laurie said there should not be much change but I think since I am deaf in my other ear I notice changes easier. I also think and my ENT agrees that it could be due to the allergy season. I'm very thankful of my outcome to date and the support I have received from here. I have even considered being placed on the list to be available to be contacted to offer my experience to help others as I was helped.  Thanks again and good luck to all.

[Jim Scott]

Bill ~

Congratulations on the 1-year MRI report!  No growth is fantastic.  It appears as if the tumor is definitely expiring.  Thanks for sharing this.

Jim