Follow-up on Cyberknife

Marty36
Marty36 Member Posts: 84
in Head and Neck Cancer #1
I wanted to do a quick post about my experience--so far--with Cyberknife since it appears that not a lot of people have had experience with it and there's a surprising lack of information online about HNC and Cyberknife.

To step back, I have HPV+ tongue cancer. I've had three tongue surgeries since May to remove very small tumors and cancerous areas. Also had a neck dissection. Underwent 42 radiation/2 cisplatin this summer focused on the neck with good results. My third tongue surgery was December and Cyberknife was recommended given my age/good health/minimal side effects of prior treatment as a preventive measure. The tumor board and docs decided on Cyberknife since the area being radiated was so close to radiation I had only five months earlier.

Cyberkinife is basically high-dose radiation that is highly focused to avoid healthy tissue. Mine was 5 treatments, which is about as long as any Cyberkinfe treatments are. Unlike the IMRT, which moved around in a set arc, Cyberknife uses a robot arm that allows the radiation to move back and forth, close and far, even spin around. It's oddly fascinating to watch because it was very different from IMRT and it was interesting to figure out if there was a pattern. The treatment was 45 minutes each time, with a mask like traditional radiation. In addition, I did three round of Carboplatin in two weeks (1 before, 1 during, and 1 after).

I'm now four days out. My doctors predicted the worst side effects would show up in 3-5 days after treatment ended with all the usual side effects from radiation. For now, I don't have any serious pain. Mouth tenderness mostly. My throat is swollen which makes swallowing difficult, but I'm still able to have smoothies, soup, soft food. Everything feels a little swolllen (throat, tongue, neck) but nothing awful. Still have taste (which they predict would go away for awhile). Struggling with dry mouth and thick mucus, the usual. Also, the worst fatigue I've had since I started any treatment and for the first time I lost my voice, although it has come back.. I'm using Neutrasal as a mouth rinse.

Because the radiaiton is intense, but short, the usual pattern for side effects is supposed to be intense by short. The docs predict that the worst of the side effects will be over in two/three weeks. I worked basically full-time until two days after it was over, when I worked pt/ and then took a day off. Not sure whether I will work this week because of the fatigue and wanting to avoid talking too much. I'm taking the end of the following week as vacation because I'm going to visit family.

Hope this helps anyone who is considering Cyberkinfe and I will let you know what else happens.

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Thank you for this update
    This is fascinating stuff. I've had some discussions with another poster who is in a position to talk about this intervention. Hopefully your expience and that of others will persuade us to consider this alternative, if we meet the selection criteria. To be honest, this was mentioned to me when I recurred last fall. I was in a little different situation though, in that my prior radiation was 11 years ago, so I actually opted for IMRT, my thought being I wanted the extended treatment fields, if possible. But again, my radiation was a long time ago.

    I'm hoping you just hit a home run, Marty. I'm now 9 days out from the completion of my IMRT, more symptomatic now than I was a week ago. Lots of swelling, can barely talk (my wife doesn't seem to mind that!). Quite sore, and on clear liquids. It will be intersting to see how symptomatic you get, before side-effects subside. And of course, it will be great to hear of your negative follow up.

    Pat
  • kimmygarland
    kimmygarland Member Posts: 312
    #3
    longtermsurvivor said:

    Thank you for this update
    This is fascinating stuff. I've had some discussions with another poster who is in a position to talk about this intervention. Hopefully your expience and that of others will persuade us to consider this alternative, if we meet the selection criteria. To be honest, this was mentioned to me when I recurred last fall. I was in a little different situation though, in that my prior radiation was 11 years ago, so I actually opted for IMRT, my thought being I wanted the extended treatment fields, if possible. But again, my radiation was a long time ago.

    I'm hoping you just hit a home run, Marty. I'm now 9 days out from the completion of my IMRT, more symptomatic now than I was a week ago. Lots of swelling, can barely talk (my wife doesn't seem to mind that!). Quite sore, and on clear liquids. It will be intersting to see how symptomatic you get, before side-effects subside. And of course, it will be great to hear of your negative follow up.

    Pat

    Very Interesting
    Very interesting. This was considered for my husband, who is in his third round with the beast. They decided on surgery, but the high-dose, 5 treatment radiation was discussed. Thank you so much for sharing and I hope your side effects don't get worse. CANCER SUCKS and I hope this takes care of it once and for all for you!

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