Cyber knife experiences

carrieh
carrieh Member Posts: 146 Member
in Colorectal Cancer #1

Hi Everyone,

I am stage 4 HNPCC, diagnosed 2012. I've been in the clear for 2 years, found out that cancers back on my lung (2nd time). May not be operable, as its pushing on my aorta. My doc thinks the cyber knife is the way to go...problem- traditional radiation therapy almost killed me. (I'm not trying to scare anyone/what happened to me is fairly rare...I just wanted to explain my fear/concern). I ended up losing half of my digestive system, 12 surgeries, months of feeding tubes and no food or water...in short, it was pretty traumatic...all due to radiation damage. I lived through hospice and recovered...it took a long time...but here I am. Doc "assures" me the CK is safer and effective, but I am terrified...i was hoping someone (or lots) would be so kind as to share an experience with CK? Good or bad? Side effects or problems? Any advice? Sigh.....

Thank You Brave Friends,

Carrie and Family

Comments

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #2
    I've never heard of that and

    I've never heard of that and I'll be interested to hear what people say about it. I hope there is something that can be done without too much trauma or reduced quality of life. An improvement in quality of life would be best, though! Good luck!

    Jan

  • caretothepeople
    caretothepeople Member Posts: 18
    edited July 2016 #3
    Second opinion?

    Given the complexity of your situation, it could be worth considering getting a second opinion on the cyber knife procedure or what to do next. It could help give you more info about cyber knife, but also it can be helpful to get another opinion on your case and discuss possible options available. You want to feel confident you're making an informed decision that's in line with your preferences.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited July 2016 #4
    Carrieh

    So good to see you back here. Its been a while since we last heard and now I can see why. Wow girl, you have been through the bushes and back a few times, haven't you. 

    I am so sorry that your fight continues this way. I cannot help you with any advice on Cyber Knife. I have heard of it, but not spoken to anyone who has experience with it. 

    I know you will keep on fighting, because its what we do. Know that I am thinking of you, and sending those good vibes, prayers even, that you continue healing form your past ordeal and that you get those little lung buggers out of your life forever. 

    SUE

  • carrieh
    carrieh Member Posts: 146 Member
    #5
    Change of Treatment

    Hi Guys,

    Thanks for the comments. I haven't been on in a while. Saw the surgeon yesterday. Pretty upset. Wants to do lobectomy on left upper lung...dangerous because of where tumor is. There's a 10 percent mortality rate and it's also possible he gets in there, after a huge open scar...and can't remove the lung due to scarring from previous surgeries. Kinda scared. Gonna go on vacation with the kids and think about what I wanna do. Thinking about trying to get in a clinical trial with immunotherapy...Jeez this is scary. I don't wanna make the wrong choice...Sighhhhh....Hi Sue! Nice to hear from you too...Wow...it's been awhile lol. Hope all is well.

    Carrie

  • Doji Girl
    Doji Girl Member Posts: 1
    #6
    CyberKnife Experience

    New here but saw the query on CK and wanted to help. I have NSCLC and had CyberKnife in January.  My most recent PET/CT (last Monday) showed "no metabolic activity" though the tumor is still evident. In other words, it is dead. The experience of CK was not at all unpleasant. I was first fitted with a very high tech looking vest which has censors built in that work with the machine and caused the machine to 'breathe' when you do so there is pinpoint accuracy.  You lie on a table listening to music (I brought my own as I did not like their selection) and for about 25 minutes the machine moves around you, zapping you from many different angles.  When I had it done, there were 3 technicians and a physicist in the control room as this was brand new (I think I was patient #2).  I had no side effects, no burning, whatever fatigue I had I will attribute to the chemo I was simultaneously undergoing.

    Most important, my radiation oncologist said to me that with CyberKnife, he is starting to treat Lung Cancer not as a terminal disease but as a chronic disease. I can live with that.

    Hope this helps.

    DG

  • John23
    John23 Member Posts: 2,122 Member
    #7
    carrieh said:

    Change of Treatment

    Hi Guys,

    Thanks for the comments. I haven't been on in a while. Saw the surgeon yesterday. Pretty upset. Wants to do lobectomy on left upper lung...dangerous because of where tumor is. There's a 10 percent mortality rate and it's also possible he gets in there, after a huge open scar...and can't remove the lung due to scarring from previous surgeries. Kinda scared. Gonna go on vacation with the kids and think about what I wanna do. Thinking about trying to get in a clinical trial with immunotherapy...Jeez this is scary. I don't wanna make the wrong choice...Sighhhhh....Hi Sue! Nice to hear from you too...Wow...it's been awhile lol. Hope all is well.

    Carrie

    Radio Frequency Ablation for Lung Cancer

    Radio Frequency Ablation for Lung Cancer

    You might want to read a bit regarding the treatments. Not as invasive, no radioactivity or chemicals.

    Radiofrequency Ablation (RFA) of Lung Tumors

    It certainly would be worthwhile to locate a surgeon that's familiar with this new procedure!

    Best hopes for you,

    John

     

  • biglaur
    biglaur Member Posts: 72 Member
    edited July 2016 #8
    I had it in 2009

    I had a brilliant doctor at Moore's cancer center UCSD...Dr. Arno Mundt.  I was facing surgery for liver and lung tumor removal and just didn't want to do it.  He assured me he could "kill" my tumors using CyberKnife radiation.  The pre treatment procedure is lengthy...psyicists, technicians, "tatoo artists", lots of mapping the tumors so the procedure is accurate and no "good tissue" gets zapped.  I had 5 sessions, 3 to my liver, 2 to my lung.  About 1/2 hour or so on a narrow table (like a ct scan) while the machine rotates around you.  I wore cool goggles to regulate my breathing (only got zapped as I exhaled).  I had NO side effects at all...took a 5 week break between chemo rounds 5 and 6 to do it (and enjoy my daughter's wedding) Only downside, after 30+ CT scans, 6 PET scans and the CK...my docs think I've had enough radiation...so now we rely on MRI's for followup scans.  I've had no treatment since August '09...all clear scans and blood work since then...not bad for Stage IV diagnosed Sept '06.

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