Regarding IORT.

My understanding is that this is done in the operating room diractly to the exposed tumor. It is usualy done when they exise the tumor and radiated the tumor bed after removal of the tumor. They are starting to apply this to whole tumors without removing them surgicaly. I think this is what Paul had (?) My tumor wrapps around the corotid artery and I am very concerned that a direct hit of high radiation in one short burst may effect the artery wll adversly. Although I have said that this would be my prefered method to go out on. One minute your there...the next your not. Better then a long slow slog through pain and misary of a tumor groowing into all the nerve bundles at the base of my scull.

Kelly

My bad about the HPV. Nobody is more surprised than me about the sudden late effects of the radiation. I keep telling myself that is what it is. the new pills and TX regime are helping. But it's nothing compared to what you are going through now. This is just not fair.

You count on my full support whatever your decision here is.
I too detect the weariness in these posts and have felt the same way sometimes. Like the email I sent, in times like these, that old childhood prayer: [quote]Now I lay me down to sleep, I pray the Lord my soul to keep, And if I die before i wake, I pray the Lord my soul to take[/quote] suddenly seems less macabre and fatalistic and more like a good ending.
Although the one caregiver poster here whose husband did just die in his sleep expressed guilt and grief. All these things factor in facing this. Here is hoping for some major palliative without QOL that gives you years more.
The viral approach does sound intriguing and promising. I know you are a fighter and tough as hell, but this is beyond the pale. You are really showing Grace under Pressure.
Charm

Kelly,

SBRT is the process and Cyberknife vs Linac are the machines.
Linac requires much less time. It sounds like the vaccine treatment may be possible without being HPV- . I hope this is the case. I have a lot of pain and muscle fibrosis and atrophy and not much can be done according to the docs. I loaded up on methadone and it caused things to rapidly escalate to the point of having to choose death or pain. I guess pain was my choice although there are days I wonder if I made the right decision. Seems to get worse over time.

Ed

Some positive news

I received a call from the RO on Monday. He said that he has carefully mapped this recurrence and found it to be just outside the SBRT field we treated last time. The area that was treated is perfectly clear of cancer.

This is the risk we take with SBRT (Cyberknife). They use a very precise target area when reradiating patients who have already had IMRT treatments. The goal is to limit any extra radiation damage to healthy areas while it the same time killing the tumor. If the field is too tight, some cells may be missed and will continue to survive after treatment. This appears to be what happened to me.

The good news is that this is not a radiation resistant recurrence in the old tumor area. It is fresh cancer that was missed in the last treatment. Radiation seems to work in killing my cancer it�s just that my treatments keep missing a few cells at the margins or in the first case a lymph node.

So the RO feels confident that he can treat this new occurrence with another round of radiation. It is down at the bottom of the treatment area so the field will not intersect any soft tissue in my oral cavity which is great news as I could not stand more necrosis in the mouth. It is also far enough away from the carotid to limit damage there. Also, it is much smaller than the last treatment area (mm instead of cm).
I may suffer from some additional fibrosis in the neck muscles but I am prepared for that.
The tumor board meets on Monday night and my case will be discussed. The RO said this occurrence may just be far enough away from the carotid to allow for a surgical solution but wanted to get the surgeons take on it before going there. Of course I would prefer surgery but it�s a long shot given the amount of radiation damage in that area. Apparently, surgeons hate going into these �Woody Neck� areas where the tissue is like �concrete� (the words of the surgeon at Sloan Kettering). But the real determining factor will be distance from the carotid and margins.

So the positive take away here is that this is treatable with a hoped for curative outcome. I�ll post again after the tumor board gets back to me.

Kelly, that is wonderful news. Bet you were thrilled by the RO's phone call.
Now you have curative options. Yay.
Tammy

Kelly,
This sent chills through my body!!! Just when we think all hope is gone, a ray of light shines through! Thanks for sharing this great news!! Will be waiting for the continuation..
Kathy

Sounds like a plan. Glad to hear there is possible TX. What's a few more GYs among friends?
Charm

Sounds promising! Good luck with Tx.

I know your likely not looking forward to it (another round of treatment) but - thank god!!!

Tumor Board has decided to go with radiation, so no surgery. I'll be scheduling that this week and then off to Pittsburgh for one more round of god offal radiation. big worry is the skin over that spot as it has been exposed to every treatment and could end up burned beyond repair. We'll see.

In the mean time I will keep posting to let my family here know how I am doing.