Tumbleweed's 40-month followup MRI

[Tumbleweed]

Hi, everyone:

Just had my 40-month followup MRI and audiogram (I had CK at Stanford 40 months ago with Drs. Steven Chang and Iris Gibbs). I'm walking on air right now. My MRI results were awesome. My AN has shrunk an additional 39% over the last year. It now measures 12 x 9 x 8 mm. My AN is now 71% smaller in volume than it was at the time of treatment!!!!!  It's 79% smaller than it was at its peak 5 months after treatment (it had swelled in size initially in reaction to the radiation).

My other brain tumor, a small hypoglossal neuroma, hasn't been treated; I'm still watching and waiting on that one. My followup MRI showed it has not changed in size, so I can still forego treatment for now.

My audiogram showed that my hearing has finally stabilized; I haven't had any further hearing loss over the last year. Overall, I've lost 25 dB of hearing in my midrange frequencies (at 1 and 2 kHz) since getting CK but still have decent hearing on my AN side.

CyberKnife -- and Drs. Chang and Gibbs at Stanford -- have given me my life back. My balance has improved dramatically since treatment and my AN continues to shrink. I couldn't be happier!!!! 

Best wishes to all,
TW

[ombrerose4]

Congratulations on your excellent report! Life is good:)

[sunfish]

Glad to hear about your great results.  Read my post today - I'm doing pretty well myself, 20 months post-CK

[ppearl214]

TW

This 66 monther  sends you a MAJOR congrats on your update and continued wellness wishes right acha!

Congrats!
Phy

[Rivergirl]

Tumbleweed......that is an awesome report, love those positive reports.......just maybe you can forget about it for a while....

[mk]

Tumbleweed, what an excellent result. I am really happy for you.

Marianna

[Tumbleweed]

Thanks for your well wishes, everyone! Much appreciated! 

TW

[Jim Scott]

Tumbleweed ~

Please accept a few more good wishes for your excellent 40-month MRI report!  As another AN patient ('retro' surgery + FSR) who enjoyed a very good recovery, I can relate to your elation at the positive results of your CK treatment and your feeling of gratitude toward your doctors.   Thanks for the very positive post.  It's much appreciated.

Jim

[JLR]

Hi TW, That's super news! I had my MRI yesterday and will get the results next week when I meet with my CK MD. I am 11 months post CK. I'm not wonky, and my balance has improved and best of all my hearing is still really good. Now I just need some news about the AN shrinking. So happy for your great news!  Best Wishes, Joan

[Tumbleweed]

I think it's helpful to know that my AN initially swelled 33% in volume in the first five months following treatment. The fact that it subsequently shrank 79% from its peak size and is now just a fraction of its size when it was treated should give comfort to those who are currently suffering the ill effects of tumor swelling following radiation treatment(s). In other words, swelling is usually just a temporary setback and may, in fact, precede a net reduction in size.

That said, only about 1 in 4 CK patients see "gratifying shrinkage," as Dr. Chang put it. So I consider myself very lucky. I do wonder if my diet and exercise regimen contributed to my dramatic results, though. For example, I took systemic enzymes that digest fibrin (the stuff that holds tumors together) for three years following treatment. My thought was it would help break down all that dead tissue and shrink my AN. Dunno if that, or all the other things I did, helped, but it certainly didn't hurt!

Best wishes to all,
TW

[LisaM]

Great news for you Tumbleweed!  Wanna give us a list of those systemic enzymes???  I already know a bit about your supplements but maybe others could benefit from these systemic enzymes.  May the AN in your head continue to shrink!

[Tumbleweed]

Good idea, Lisa!

The systemic enzymes I took regularly included:
Flavenzym (available online at vitacost.com)
Bromelain (one of the key ingredients in Flavenzym and the one that is confirmed in scientific studies to shrink some tumors)

Flavenzym and bromelain are also anti-inflammatory. I also took some other anti-inflammatory supplements, including curcumin (which is turmeric extract). Other supplements I took included vitamins C and E and calcium/magnesium combo. And I ate a lot of salmon, which contains anti-inflammatory omega-3 fatty acids and high levels of the nerve nutrient pantothenic acid (vitamin B5).

Just as important, I think, is the fact that I avoided eating foods that cause inflammation: refined sugar, polyunsaturated vegetable oils (corn, sunflower, safflower, etc.) alcohol, coffee, etc. My diet was largely steamed leafy green vegetables, whole grains, salmon, legumes and fruits. And I did a lot of aerobic exercise (hiking).

One other person on this forum (I can't remember who) mentioned dramatic shrinkage of their AN following radiation treatment. Maybe I should start another thread, a survey, wherein people who have had their tumors shrink can detail what diet, supplements and other lifestyle details they pursued. There might be a common thread. I'll try to do this when I have more time.

Best wishes to all,
TW

[frenchjoey]

Really happy for you! What wonderful news!
Most encouraging for people like me who've just had treatment (GK) and are sitting biting their fingernails waiting for the swelling/side effects of the radiation. Thank you also for telling us about your diet. I'm not sure I'll take up hiking because I get very lazy when it comes to exercising  but I will definitely try to find the equivalent of anti inflammatory enzymes over here in France.
Best wishes! Keep us posted!
Joey

[leapyrtwins]

Damn, Tumbleweed, seems like just yesterday I met you right here on this Forum.

I can't believe it's been 40 months since your treatment; huge milestone.

Congratulations,

Jan

[mk]

Tumbleweed, I think it would be a great idea to start a thread discussing the lifestyle approaches that post-radiation patients have followed (similar to the thread going on the W&W category), and their outcomes. For sure it would be of great help to all those who are considering radiation, or had treatment recently.

Marianna