24 Months Post - Symptoms return

[MinhVietNam]

Hi everybody, in 2009 I was diagnosed right AN and had CK in October 2009 in my country. I recovered one year later that and my right ear still good (I can only hear on right side). But recently (five or four months ago) sometime I lost hearing in right ear (fluctuating hearing loss) so I met my Doctor and take MRI, the MRI show nothing in my right ear (the tumor seems disappeared). But it become worse now. I can only hear people say but can’t understand. I visit ETN and they told me that my acoustic nerve is damaged by CK that cause hearing loss. Have anyone get this problem like me? I’m very upset now. (My English is not good, sorry if I get any mistake).

[MinhVietNam]

Nobody can help me?

[LisaM]

Hi there,

I've not had CK.  I'm waiting and watching.  However I have read that radiation can have a delayed reaction that can impact hearing.  You might want to take a look that this thread.  Tumbleweed had great success with his CK and he took a bunch of supplements to support his recovery.

http://www.anausa.org/smf/index.php?topic=16205.0

Hope this helps.

Best,
Lisa M

[MinhVietNam]

Thank LisaM. I have read this topic and many other topics there. I find some great information but I really can't find anybody like me. However I hope I will be as lucky as all you.

[LisaM]

Though I'm not expert and certainly not a doctor, I know that swelling is a big issue with CK and other radiation treatments.  I'm taking turmeric everyday which is a natural steroid of sorts.  Is you doctor giving you steroids?  If your hearing is going this is often what is prescribed  It's tricky to get the turmeric to absorb into the body.  Let me know if this is of interest and I'll PM you some more info.

Take Care.

[MinhVietNam]

Ọh, I know turmeric is a very good natural medicine but i don't know it is a natural steroid of sorts. My doctor giving me a short course of steroid (dexamethason) but I know it has many side effects if keep use in a long period. So can you tell me how to use turmeric daily?
Thank you.

[ppearl214]

Though I'm not expert and certainly not a doctor, I know that swelling is a big issue with CK and other radiation treatments.

Just an addendum to the comment Lisa has shared (thanks Lisa!) and no, I am no dr either but..... post-radiation edema/swelling can (not always, but can) occur and radiation teams monitor closely via patient-related (verbalized) post-treat symptom and MRI's to see if it is occurring.  If yes, usually/easily controlable with steroids (ie: Decadron, Prednisone, Medrol Dosepak, etc) to help keep it from occurring/enhancing.

Personally, I ran into enhanced symptoms post-CK between 3-9 mos possibly due to post-CK edema..... I reported this to my CK team (the key for all post-radiation patients... keeping their teams up to date and not brushing off anything that may be going on)... they put me on short term steroids and then, all was fine.

I can now report, pushing 6 yrs later, for me.... all is well. As we note here all the time, "individual results may vary."

Hope this helps.
Phyl

[LisaM]

First, take the steroids now.  They can hopefully get the inflammation down and restore your hearing.  Have you tried acupuncture?  I did a a 3 month treatment of acupuncture, 3 times a week with about 30 needles in me and with as much electricity as I could stand going into the needles.  You need to find a very talented acupuncturist.  I had two bouts of hearing loss last spring and my hearing came back and has been more stable since taking curcumin (concentrated turmeric) everyday.  It's worth trying acupuncture, it certainly can't hurt.

Here's some info about how to get curcumin/turmeric into your body for maximum absorption:

BTW... if you want to get really serious about taking curcumin and reservatrol check out the 2 links below:

http://www.pdazzler.com/archives/1005

http://www.youtube.com/watch?v=SeU--wadrMY

This is from a site for cancer patients.  It seems that both reservatrol and curcumin have a hard time getting absorbed into the system and binding the curcumin/reservatrol to lecithin apparently makes a huge difference.

Here is a link to the entire thread I originally posted in:

http://www.anausa.org/smf/index.php?topic=16106.msg979734509#msg979734509

Here is some more info about turmeric and treatment for cancer patients, again describing how it is best absorbed by the body so it can do its work:

http://margaret.healthblogs.org/tag/turmeric/

[MinhVietNam]

Thank ppearl214. I was treated with CK 25 months ago, in the period of first 4 months I also underwent some side effects of swelling but things gradually got better, my hearing returned. I thought CK worked right. But 4 months recently I loss hearing again, my MRI test last month show no sign of the tumor (I don’t know why because I know the AN tumor usually stable or slight reduce it’s size after treat with CK after 2 years ) and some doctors told me that my acoustic nerve is damaged by CK that cause hearing loss, may be I will be permanent deafness! . I am so worry and sad. I think you are right: "individual results may vary" and I will keep update my status..

[MinhVietNam]

LisaM, thanks you a lot. I am taking steroids now but it seems no effect. Acupuncture may be a good idea for me, I haven’t ever tried it and my wife also think me should try so I will find a good acupuncturist as soon as possible. I have read all the pages that you send to me, it’s petty hard for me to make Combination Liposomal now so at lest I will draught a cup of mixed powder turmeric with honey everyday. I believe it will help me.

[LisaM]

yes, try the acupuncture as soon as possible... Turmeric used in cooking is very different from curcumin.  Go to a health food store and get curcumin capsules.  You need to ingest curcumin with a fat (oil, butter, etc. ) and black pepper and it needs to be heated.  I eat mine in oatmeal every morning with an egg.  I know of a woman from this forum who lost her hearing prior to surgery for 3 months and then it returned just before her surgery.   Good luck to you.  I sincerely hope your hearing returns.

[PaulW]

How many fractions were you treated with?


"I was diagnosed with right AN 25 months ago (my tumor's volume is 757,38 mm3) and be treated with CK (1800/2307.89 cGy; Collimator 03 mm)"

[MinhVietNam]

I was treated with 4 fractions on 4 consecutive days. My doctor said he wanted 4 fractions instead 3 fractions to got better hearing preserve.

[ppearl214]

I was treated with 4 fractions on 4 consecutive days. My doctor said he wanted 4 fractions instead 3 fractions to got better hearing preserve.

Was told the same by my CK team. I had 5 fractions and had 96% speech recognition at time of treatment. Due to this being told to me... and performed as such, to this day (pushing 6 yrs later), I still have 96% speech recognition as of my last hearing test.  As we all know around here, "individual results may vary" but from talking to others, it has become a "standard" that fractionation of treatment for those that do have a high % of hearing levels is recommended in the hopes of saving serviceable hearing.

Phyl

[MinhVietNam]

Hi LisaM, ppearl214, PaulW ... everyone else. I am very glad now. My hearing has gradually came back to me for more than one week. Althought my balance still isn't good but my world is really brighter sice hearing inproved.
I still eat curcumin, pratice yoga and acupuncture. I also stop use Steroid for a week because I don't want abuse this drug. After 3 months lost hearing, now any kind of sound that I can hear all make me feel so happy.
Thank LisaM, ppearl214, PaulW all you helped me, hope that I will get more improvement. Good luck for all you.