Author Topic: Stanford-bound this weekend  (Read 9453 times)

Jim Scott

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Re: Stanford-bound this weekend
« Reply #15 on: October 13, 2012, 03:16:11 pm »
Novagirl ~

Congratulations on joining the Toastie-Postie club! 

Post-radiation swelling is routine but usually subsides relatively quickly with minimal negative effects, as I'm sure yours will.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

skipg

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Re: Stanford-bound this weekend
« Reply #16 on: October 14, 2012, 04:32:24 am »
Novagirl,
Congratulations on your final treatment.

Those supplement recommendations are what I take. Krill Oil, D3 and Vitamin C. I hope it is helping. I also stay away from red meat as much as possible, but nothing is better than a juicy burger on the grill. I have been substituting portabella mushroom caps for these. I love fruits and vegetables, if only my willpower would cooperate.
Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

millie

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Re: Stanford-bound this weekend
« Reply #17 on: October 14, 2012, 02:16:15 pm »
Good going, Novagirl!  Thanks so much for posting your journey-it is very helful to folks like us awaiting treatment too.
I agree that Stanford is very special.  I was watch and wait from Feb of this year, and in early August  watch and wait, they responded to the MRI's  I sent them within the week . The doctor who phoned listened to my symptoms and
suggested a course of treatment I later decided upon and which is coming up this week.  It's just made me feel better about my decision.

cindyjarrett

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Re: Stanford-bound this weekend
« Reply #18 on: October 14, 2012, 03:29:42 pm »
Novagirl,

Just wondering how much vitamin e, C and fish oil did your doctor recommend?

Thanks, Cindy
Diagnosed 8/9/12 with an on left side
19 mm x 17 mm x 13 mm
tinnitus with high pitch hearing loss
Will have gammaknife at UVA with Dr. Sheehan on 10/12/12
Trusting in God

novagirl

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Re: Stanford-bound this weekend
« Reply #19 on: October 15, 2012, 08:00:15 am »
Hi Cindy - we did not discuss any specific dosage, so I am just taking the recommended dosage that's indicated on the bottles.

Millie - I am glad my posts were helpful and all the best on your treatment.
Right AN 10 x 10 x 7 mm - dx 7/28/09; w&w for three years
CK at Stanford October 2012 - Dr. Chang and Dr. Soltys
Oct'12: 15 x 14 x 10 mm
Oct'14: 12 x 6 x 5 mm

MDemisay

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Re: Stanford-bound this weekend
« Reply #20 on: October 15, 2012, 08:56:01 am »
Novagirl,

Congratulations on completing your CK treatment! A hearty welcome into the land of Toastie-Posties!

( I don't know about you, but it makes me feel a bit like a breakfast cereal!)

As you wait for symptoms to develop from necrosis as those just out of radiation do (myself included), please know that my prayers are still with you and that you are through with flying colors and that you should celebrate good fortune!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Bobette

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Re: Stanford-bound this weekend
« Reply #21 on: October 16, 2012, 08:38:51 am »
Novagirl,

Congratulations on being a postie-toasty!  I look forward to seeing your continued posts and will celebrate with you in six months when you have your MRI.

I know the Lord is with you through this journey.  You are in my prayers.

Bobette

It is what it is

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Re: Stanford-bound this weekend
« Reply #22 on: October 17, 2012, 08:10:11 am »
Congratulations postie!!!!!  It's great you are happy with your treatment of choice.  :)
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

ash

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Re: Stanford-bound this weekend
« Reply #23 on: November 28, 2012, 07:07:07 pm »
Hi Novagirl,

I'm from Jersey and went to Stanford in May, my wife and I treated it like a vacation. It was beautiful out there. I just had my 6 month MRI and the AN showed it swelled 1 cm which is normal. It also showed that the center looked to be getting dark which hopefully is the beginning of necrosis. Bobette's MRI is in January and I guess yours will be in April. Stanford is the best there is so I feel the both of you will turn out great. Good Luck and I will be thinking of both of you.

ASH
Born deaf in left ear, Diagnosed AN in right ear 2/1/ 2010 4 x 3 x 2mm; 8/1/2010 4 x 3 x 4mm; 9/1/2011 6 x 4 x 4 mm; 3/1/2012 8 x 4 x 4mm; Recommendations: U of Penn-GK; Stanford-CK; NY-CK; Cooper-Novalis; Pittsburgh-GK; HEI- still waiting ; Treatment: Stanford-CK 5/10/2012 (Dr. Chang, Dr. Soltys)