Cyberknife Has anyone had this procedure?

Nana b · July 2014

Just wondering who has had cyberknife to the lungs and what the outcome was. Everything I read tells me it's better then traditional chemo, or standard radiation that usually kills the nearby healthy cells, because of the lungs moving as we breath. Cyberknife moves in tune with one's breathing. I've also read that it's not an intrusive procedure, but my ONC says it is intrusive and leaves lots of scarring. He recommends standard chemo and radiation.

Any insight? Thank you.

KTeacher · July 2014

Cyberknife

I am from the Head and Neck site. Cyberknife was easy, peasy after IMRT and chemo. I have gone the course 4 times since 2010 with H & N. 4th go around was Cyberknife (at Stanford). No burned skin, no mouth sores. The only side effect was 2 weeks of fatigue. I felt very comfortable with Dr. Loo and Dr. Chang and the staff. You are on the table 45 minutes but it is quieter than IMRT and you can hear the music that is playing.

Akroger · July 2014

My mom got the cyber knife for a brain tumor

Late last year my mom was getting really dizzy and falling a lot. She told her oncologist about this, and an MRI determined that she had a small brain tumor, which they eliminated that same day with the cyber knife. (I wasn't supposed to learn any of this, except that my cousin who had learned of it from my dad called me to check on how I was doing because of "my mom's surgery." Which was pretty traumatic and resulted in some very serious, quietly furious conversations.) It was pretty terrifying because of all the dire things I've read about prognosis following brain tumor diagnosis. However, regular MRI exams since December 2013 have continued to show no new signs of any cancer cells in the brain, and my mom almost completely recovered from her dizziness and falling issues. Interestingly, the month after the surgery was the happiest, healthiest month I've seen her have in years (including the pre-cancer diagnosis months) because she was taking some pretty significant levels of dexamethasone, which gave her back her appetite and zest for life (after the steroid prescription ran out and she returned to the weaker, more subdued state that has been typical of her chemo state, I actually begged her to ask to start the steroids again a few times, even though I've read that the positive effects don't last long term. It was just so amazing to see her so energetic and HAPPY again).

In short, my mom had a great response to the cyberknife, and while the location of her tumor was not in the lungs, I'm inclined to feel positively of its use in general. I know this isn't precisely what you were looking for, but I hope you'll find it helpful.

Nana b · July 2014

Akroger said:
My mom got the cyber knife for a brain tumor
Late last year my mom was getting really dizzy and falling a lot. She told her oncologist about this, and an MRI determined that she had a small brain tumor, which they eliminated that same day with the cyber knife. (I wasn't supposed to learn any of this, except that my cousin who had learned of it from my dad called me to check on how I was doing because of "my mom's surgery." Which was pretty traumatic and resulted in some very serious, quietly furious conversations.) It was pretty terrifying because of all the dire things I've read about prognosis following brain tumor diagnosis. However, regular MRI exams since December 2013 have continued to show no new signs of any cancer cells in the brain, and my mom almost completely recovered from her dizziness and falling issues. Interestingly, the month after the surgery was the happiest, healthiest month I've seen her have in years (including the pre-cancer diagnosis months) because she was taking some pretty significant levels of dexamethasone, which gave her back her appetite and zest for life (after the steroid prescription ran out and she returned to the weaker, more subdued state that has been typical of her chemo state, I actually begged her to ask to start the steroids again a few times, even though I've read that the positive effects don't last long term. It was just so amazing to see her so energetic and HAPPY again).

In short, my mom had a great response to the cyberknife, and while the location of her tumor was not in the lungs, I'm inclined to feel positively of its use in general. I know this isn't precisely what you were looking for, but I hope you'll find it helpful.

Thank you both. I'll take all

Thank you both. I'll take all feedback. Appreciate it.

biglaur · July 2014

I had cyberknife

when I had a reccurence in '08. Dx in '06, had colon resection...in '08 they discovered mets in liver and lung (I think they were there all the time but too small to see). I hated surgery so much I opted for cyberknife radiation. Between cycles 5 and 6 of chemo I took a 4 week break (mainly to recover a little for my daughter's wedding) My onc took that opportunity to have me undergo radition. NO side effects...I had 3 zaps to the liver, 2 zaps to the lung. The "mapping procedure" was very complicated and long (lots of time spent on an uncomortable table) while technicians created a program for the radiation machine to hit my mets and preserve surrounding tissue. 3 small tatoos...so when the actual procedure happened it only took 20 minutes or so to get me lined up properly in the huge radiation lab. I had to wear special goggles that allowed me to control my breathing (I watched my respirations on a screen) because they only zapas you exhale (as I remember) Each procedure had at least 5 zaps all around my body...took probably an hour start to finish. I had radiation every other day...so only took a week nd a half. Hardest part for me...I had frozen shoulder at the time and the contortions they had me hold while in the machine had me crying by the end. I was in a clinical trial at the same time and Pfizer was extremely worried that the radiation would skew my CT results...everyone freaked after my first CT post radiation because there was so much inflammation it looked like my tumors had grown 10 fold (even though my radio-oncologist had warned everyone) Took several months before things quieted down at each site...but that was 6 years ago...and ...knock on wood...still no regrowth...CEA still undetectable...still NED. You can shoot me a private message if you have any questions...I had all this done at UCSD Moores Cancer Center...Arno Munc is the rad-onc...a brilliant think outside the box kinda guy!

Laurie

Trubrit · July 2014

biglaur said:
I had cyberknife
when I had a reccurence in '08. Dx in '06, had colon resection...in '08 they discovered mets in liver and lung (I think they were there all the time but too small to see). I hated surgery so much I opted for cyberknife radiation. Between cycles 5 and 6 of chemo I took a 4 week break (mainly to recover a little for my daughter's wedding) My onc took that opportunity to have me undergo radition. NO side effects...I had 3 zaps to the liver, 2 zaps to the lung. The "mapping procedure" was very complicated and long (lots of time spent on an uncomortable table) while technicians created a program for the radiation machine to hit my mets and preserve surrounding tissue. 3 small tatoos...so when the actual procedure happened it only took 20 minutes or so to get me lined up properly in the huge radiation lab. I had to wear special goggles that allowed me to control my breathing (I watched my respirations on a screen) because they only zapas you exhale (as I remember) Each procedure had at least 5 zaps all around my body...took probably an hour start to finish. I had radiation every other day...so only took a week nd a half. Hardest part for me...I had frozen shoulder at the time and the contortions they had me hold while in the machine had me crying by the end. I was in a clinical trial at the same time and Pfizer was extremely worried that the radiation would skew my CT results...everyone freaked after my first CT post radiation because there was so much inflammation it looked like my tumors had grown 10 fold (even though my radio-oncologist had warned everyone) Took several months before things quieted down at each site...but that was 6 years ago...and ...knock on wood...still no regrowth...CEA still undetectable...still NED. You can shoot me a private message if you have any questions...I had all this done at UCSD Moores Cancer Center...Arno Munc is the rad-onc...a brilliant think outside the box kinda guy!

Laurie

Wonderful!

What a wonderful post. Your survival gives us all the hope we need. Thank you for posting.

Nana b · July 2014

Trubrit said:
Wonderful!
What a wonderful post. Your survival gives us all the hope we need. Thank you for posting.

Thank you. I watched a couple

Thank you. I watched a couple YouTube videos last night, they were also very informative. Thanks for sharing your experience with me. I will get that cyberknife!

PhillieG · July 2014

My Experience

I had cyberknife or a very similar sounding procedure done back in April 2013. It was targeted radiation for 3 short sessions during the course a week. I had been doing RFA's up until then with no problems at all. Went home the same day 6 times. This spot was too close to an artery so they didn't want to chance it. They tattooed me so they could line up the radiation to go to the exact spot each session. Things seemed to go well but about a month after the procedure I started to get a cough. It appeared that I had a slight infection. Over the summer the cough got worse and my breathing became strained. Just a short walk would leave me gasping for air.

The CT scans showed some permanent damage done to my upper right lung. Some sort of fibrosis or basically permanent damage to my lung. In Dec I had another lung tumor pop up so we went back to the RFA. Things seemed to go OK but when I left that day I found I couldn't walk far at all without being totally winded. The next day I could hardly breathe. I wound up having to go back in for observation. Long story slightly shorter, I went on some supplemental oxygen and then was able to start some respiratory rehab in Feb 2014 for 6 weeks (3 x a week). Things improved slightly but I still needed the oxygen if I was doing any sort of leg/walking exercises. I could do arm weights with no problem.

So now I have another small tumor or two and have started Xeloda. I've been on that for 2+ months and it's effective, the spots are shrinking and my CEA is on it's way back down. I still need the oxygen when I go walking to any place other than to the store or farting around the house. When I'm hanging out I feel fine, no breathing problems at all.

I'm certainly not trying to frighten you Nana but like anything, there are risks. I was told about them and that they were slim and felt it was the way to go. Apparently it wasn't but I had few options that I was comfortable with.

I know I've been absent from the boards for a while. After being on here since forever I just needed a break. I'm still very busy fighting the political situation/land grab up by me. It keeps me busy and in the fighting mode.

Hope all goes well. I certainly didn't get to be where I am by not making educated chances and a lot of luck!

-phil

Nana b · July 2014

PhillieG said:
My Experience
I had cyberknife or a very similar sounding procedure done back in April 2013. It was targeted radiation for 3 short sessions during the course a week. I had been doing RFA's up until then with no problems at all. Went home the same day 6 times. This spot was too close to an artery so they didn't want to chance it. They tattooed me so they could line up the radiation to go to the exact spot each session. Things seemed to go well but about a month after the procedure I started to get a cough. It appeared that I had a slight infection. Over the summer the cough got worse and my breathing became strained. Just a short walk would leave me gasping for air.

The CT scans showed some permanent damage done to my upper right lung. Some sort of fibrosis or basically permanent damage to my lung. In Dec I had another lung tumor pop up so we went back to the RFA. Things seemed to go OK but when I left that day I found I couldn't walk far at all without being totally winded. The next day I could hardly breathe. I wound up having to go back in for observation. Long story slightly shorter, I went on some supplemental oxygen and then was able to start some respiratory rehab in Feb 2014 for 6 weeks (3 x a week). Things improved slightly but I still needed the oxygen if I was doing any sort of leg/walking exercises. I could do arm weights with no problem.

So now I have another small tumor or two and have started Xeloda. I've been on that for 2+ months and it's effective, the spots are shrinking and my CEA is on it's way back down. I still need the oxygen when I go walking to any place other than to the store or farting around the house. When I'm hanging out I feel fine, no breathing problems at all.

I'm certainly not trying to frighten you Nana but like anything, there are risks. I was told about them and that they were slim and felt it was the way to go. Apparently it wasn't but I had few options that I was comfortable with.

I know I've been absent from the boards for a while. After being on here since forever I just needed a break. I'm still very busy fighting the political situation/land grab up by me. It keeps me busy and in the fighting mode.

Hope all goes well. I certainly didn't get to be where I am by not making educated chances and a lot of luck!

-phil

Thank you Phil, appreciate

Thank you Phil, appreciate your response. I have an appointment in Stanford on Friday to discusss. It sounded better than conventional chemo that attacks all cells. Stanford thought a break from chemo is needed, but my ONC wants me to start FOLFOX, which was my first cocktail. XELODA, FOLFRI and irinotecan didn't work for me. What to do, what to do... I will know more on Friday I hope.

Cyberknife Has anyone had this procedure?

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