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My cancer is back - Cyber Knife is the new treatment

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

I am soooooooooooo happy for all those who recently posted their NED (clean scan or No Evidence of Disease). Can't get enough of those!

Unfortunately my scan in July showed an 8mm mass on my left lung. Treatment Background: I've had radiation last summer, 2 chemos and three surgeries (including removing 30% of my right lung in Dec. 2011). Now it's moved on to my left lung. Only 8mm but still a problem.

Going to try the Cyber Knife radiation in St. Paul, MN (4 hours away). It sounds great, with low side effects and 3-5 treatments every other day for 1-1.5 weeks. The staff has been very caring in setting up my consult (8/22). Don't ask me about my damn biopsy doc - he never returned my call and I had to dig to get the results. A**hole.

I'm glad I don't have to have surgery or chemo again and that Cyber Knife will be the way to go. Doc says if that doesn't work Erbitux will be my last hope. Tough to hear.

Just turned 40 with a husband, 11 year old boy and 2.5 year old girl. I was pretty bummed about this finding, but glad they found it and that maybe this new treatment will kill it for good.

Do you have any experience with Cyber Knife?

Best to You and keep those NED's coming!
Sonja

CivilMatt's picture
CivilMatt
Posts: 2918
Joined: May 2012

Hi Sonja,

I am sorry to hear your news, this crap nobody deserves. I have read good things about the Cyber Knife and hope you have the best of luck. They can really pinpoint the area they are after, so you should have excellent results. Give your wonderful family a hug and we will all pray for a good outcome.

There is plenty of NED’s to go around

Best,

Matt

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

Thanks so much for your kind words and hugs for my family! Today is our 15th wedding anniversary :-) I really appreciate your prayers!

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Sorry to hear it's back. No experience with cyber knife, but I was treated with Erbitux. Erbitux is no big deal: A little nausea,controlled with meds. Was able to eat throughout the treatment. Rick.

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

Love your Goldie by the way! Let's hope this Cyber Knife thing works out. But good to know about Erbitux - seems sort of light. Appreciate it!

katenorwood
Posts: 1821
Joined: May 2012

Sonja,
Hey girl, hang in there ! I haven't had experience yet with this procedure....but have heard wonderful things from other survivors that have under gone this. I am so sorry this has been such a long journey for you. Please keep us informed and as always Sonja, you will be in my thoughts and prayers. You are one tough cookie, and will come through this just fine ! Katie (what hospital as I'm in Mn. also !)

tommyodavey's picture
tommyodavey
Posts: 353
Joined: Nov 2011

Oh Sonia,

I'm sorry you got some bad news recently but I must commend you for having such a caring and positive attitude. Congratulating others for their NED status is remarkable.

With such a cool name like a Cyber Knife, it has to work good and it will on you. May this be the last of it for you forever. You've been through enough already.

BTW, love that hair!

Tom

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

I appreciate your caring words. As for the hair, it's growing out now, my wig barely fits.

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

I appreciate the private message you sent. I hope it all works out with your family, there's too many dealing with this!

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

bless you and your family. we're pulling for you. stay strong!

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

I appreciate the kind words! I need them!

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

I am so sorry, your scan came back with this result. Your attitude is superb, tho...Everything I've heard about the cyberknife is excellent...so "space age", considering the actual treatments aren't dragged out for months...and no chemo. Maybe this futuristic cyber knife is what you've been waiting for..they'll get this tumor and NED's for you, from now on!....

Hugs to you Sonja....you are an amazing girl....and someone I look up to.

p

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

Everyone says I have such a great attitude and that amazes me. I can't wait to be NED again. Hope you are doing well too!

Grandmax4's picture
Grandmax4
Posts: 583
Joined: Dec 2011

waiting to read your NED when this is over for you~~~just another little bump in the road, take care and hug & kiss those sweet faces every day!

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

Thoughts and prayers are heading to you Sonja, keep positive
and have faith in the man upstairs cause miracles can and do
happen everyday and you deserve one.

Stay strong girl.

God bless
Tonsil dad,

Dan.

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

I see you have at least 3 sweet faces to kiss from your picture and I love my mine too! Yet another bump in the road - kinda like all the potholes in MN after our horrendous winters. GRRRRRRR. Take care!

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Dang Sonja, you guys need and deserve a break....

I've heard good things concerning CyberKnife as well.

Feeling terrible about hearing that news from you.

Stay strong, believe and know that miracles are all around us.

Thoughts, prayers, miracles, hopes and dreams.
John

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

You are a rock star!

osmotar's picture
osmotar
Posts: 953
Joined: Jul 2011

Sorry to read about the recurrence...@#!%!^!$^ to that damn cancer.

Linda

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

I'm so sorry for this news! I hate cancer!!!! :(

My thoughts and prayers are with you!!

Charles

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

Totally agree @#!%!^!$^ to that damn cancer.

meaganb's picture
meaganb
Posts: 226
Joined: May 2012

Sonja, I don't know anything about cyber knife but just wanted to tell you that I will be praying for you. I got my diagnosis in March and went through radiation. I'm only 27 and have a 1 year old daughter. My greatest fear is not being able to watch her grow up. You have such an amazing attitude. Will be praying for peace and that the cyber knife gets that stupid cancer for good!!

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

Thanks Meagan. It breaks my heart that you are even younger with me, with even a younger child. I hope you survived radiation ok. I have that fear too about my little girl but I will pray for you too! Message me if you want. Best to you!

patricke's picture
patricke
Posts: 463
Joined: Aug 2006

Hey sonyk728, I am very sorry to hear about your news, but from what you say, the knife sounds promising. I have no experience with the knife, but I want you to know that my most positive thoughts and wishes are with you for a most successful outcome, and many NED reports for the future.

PATRICK

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

So many people have said they don't have experience with Cyber Knife but they have reached out with good thoughts anyway. I really appreciate it!

Crazymom's picture
Crazymom
Posts: 295
Joined: Nov 2011

prayers your way. You have to keep fighting for those kids. Just curious, where was your original tumor and what was the stage?

Ann

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

So sorry to hear that you didn't get the results you were hoping for. You've got a good attitude and plenty of reasons to keep fighting. Lots of prayers coming your way.

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Hurt my heart to read your post ....we all know your worries, frustration, and we care.

Whispered a prayer the cyber knife would work for you. You do have a great attitude in your post.

My prayer is for healing, strength and faith as you travel this next leg of your journey.

Tim

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

Primary was floor of mouth, Stage 4 (it was actually on the inside of my right jaw but that's how they classified it). For all the disgusting details check out my profile or message me.

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Hi sweetie,

I don't know anything about Cyberknife, but I do know from reading all your posts that you are one strong gal and can beat the crap out of this effin cancer this time for sure.

Keep up the great attitude -- it will serve you well on your journey.
Sending prayers and cyber hugs your way.

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

Love your doggy in your profile picture! I appreciate your encouragement!

D Lewis's picture
D Lewis
Posts: 1528
Joined: Jan 2010

Fight on, Sonja. You are one tough cookie, and now you're going to be armed with a cyber knife. You WILL beat this thing.

Deb

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

I really appreciate your encouragement!

NeoTheron91
Posts: 77
Joined: Sep 2011

I am sure you'll be alright .....

your mind is strong.

cheers,
Neo

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

I appreciate the short but sweet message!

ditto1
Posts: 630
Joined: Mar 2012

all the trashing of this crap called cancer, thanks for letting me Shout that one out, we fight and fight, our bodies are beat to heck all with the goal to be NED and get on with life and know sometimes we will loose a battle or two but win the WAR. I to know nothing about the Cyber Knife, but I know if its backed by all the prayers that are coming your way from the dittos and the H & N family it will kick the 8mm tumor to Cyber Space.... Forgive me for coming accross angry but I just hate this cancer stuff. It has taken its toll personally, with my families, and people we have learned to care for on this site. But again the prayers with the procedure will win this WAR and you will watch your family grow.

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

Ummm... you are not coming across as angry at all! You are too sweet and put it into nice words what a bunch of BS this is. I tried posting last week to the board about my frustration with my biopsy doc not calling me back with my results after 5 business days and I deleted it because it was such a NASTY rant. I too have lost too many to cancer. No one deserves this sh*t. Still not understanding how they put a man on moon (now Mars?!) and can't figure out the crap down here. All my best to you!

arndog64's picture
arndog64
Posts: 536
Joined: Mar 2011

I am so sorry to hear this.. I sure hope the cyber knife does the trick. Now go kick some serious cancer azzzzzz....

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

Hope you are doing well!

Noellesmom
Posts: 1297
Joined: Aug 2010

Don't have any first hand knowledge of the cyberknife but read great things about it. I think not many facilities that use it because it is so "cutting edge" (sorry, could not resist that one although I'm sure I should have).

Please know you are in my thoughts and prayers, sonyk.

Keep us posted and let us know about the cyberknife. You are our 'first' on this one!

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

appreciate the encouraging message!

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm so sorry you are having to deal with this again! I don't know much about the cyber knife but it sounds like your dr is very informed and ready to take on this beast once and for all! You are so young and seem so sweet and otherwise healthy, I know you've got this thing. Know I'm praying for you and your pretty pink hair :-)
Billie

KareGiver
Posts: 290
Joined: Apr 2011

Hang tough girl...never give up hope!

Sam999
Posts: 305
Joined: Mar 2012

Hi sonja,

So sorry to hear about this. My thoughts and prayers with your. You will beat this!

Sam

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

I appreciate your encouragement!

backachedp
Posts: 124
Joined: Oct 2009

Hi I see you are from MN where will you be having your Cyber treatment done? My Husband had Stage 4 Tonsil tongue Cancer and was treated at U of Mn Masonic Cancer Center. They are wonderful there...with the exception of the Dental office at the U which is actually a Dental School they really messed up his teeth and mouth...I am sorry you are so young and having to go thru this and having a small child I cannot imagine how hard that must be. Keep being strong and positive...that is 1/2 the battle so they told my Husband...and he has been NED since May 23 2010 he was diagnosed Sept 29 2009....he still is very thin but he can't eat much at all Dr just gave hima new rx to help him with the swallowing and mucus...he just started it today..I wish you much luck with your upcomming Surgery and recovery...I see there are 3 people from MN here...please keep us posted on how it goes and where you are having the Surgery done. I think I saw it is a 2 hour drive we were lucky as the U of MN is 20 minutes away on a good traffic day...you will be in our prayers.

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

Having CyberKnife in St. Paul @ St. Joe's. I'm near Moorhead, MN so it's a 3.5 hour drive. To my knowledge CyberKnife is only done at St. Joe's in St. Paul and in Duluth but now you say U of MN and someone said Abbot NW. Doesn't matter I guess. If I had to travel to Zimbabwe I guess I would. Wishing your husband the best!

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Like some others, I've heard impressive things about Cyber Knife procedures. Hope yours is no exception to the rule.

sonyk728's picture
sonyk728
Posts: 103
Joined: Jun 2011

I appreciate your support!

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