I had a routine PET/CT scan today and it was not great. Started with the scan and then went to see the MO. He said he was seeing some areas light up but he did not feel it was a recurrence. We looked at the scan together and he showed me what was going on.

I have had an ulcer that has been very slowly healing along the tonsilar pillar. It is almost gone except for a pocket that has formed about 1/8 in. in diameter in width and depth. He showed me where that area was lighting up and then worked though a few slices of scan to show how that was connected to the nearest lymph node (brighter on the scan) which is the one that was treated for cancer. The lymph node also was lit up. The MO felt it was a situation where the ulcer was inflamed and infected and that had worked its way to the lymph node. He said that the head of the team, the ENT/Surgeon, wanted to see me also.


The ENT was not so sure about this being infection and seemed genuinely concerned that this was a return of the cancer (although he did not say this outright). He did a fine needle biopsy right there to see what the lab would find. He was non-committal on the diagnosis and said he had no gut feeling about this one way or the other and he was just as anxious to see the results as I am. He put a rush on the biopsy order and we hope to get the results in 24-48 hours. So here we go with the waiting game.

Very strange situation for me as I am praying for an infection.

Kelly, I just want to let you know that I am thinking of you and hoping and praying that this is indeed just an infection.
Tammy

I hope for the best. Glad your doctors are on top of this, and did a FNAB to be sure. Although, waiting is the worst. Hang in there.

Waiting sometimes is the hardest part. Prayers for an infection.

Me too--- I have my fingers crossed you have an infection. I would say based on your history, it's a good chance it is. They cooked that area nicely so necrotic tissue is very possible, and healing etc.. is compromised, and frankly you had a similar occurrence recently where you had a non healing necrotic ulcer. Thankfully the first dr. showed you why and what he suspected. Hopefully the FNA gives you some good news - infections suck but the C word sucks more. If it was my vet you know - the results would have been back in an hour!! Full biopsy 24-48... bizarre but true! hugs dude.

Kelly

Man, that sucks. I am dreading my MRI and Petscan in mid April . You and I are in uncharted territory as far as radiation TX goes. They have no benchmark to compare us to. with everyone else getting half the doses we had.
The radiologist who did my last MRI told me that there was so much damage she really could not tell what was what anymore.
As I mentioned, she thought the cancer was back, but after the RO and tumor board went over it with her, said it was edema and swelling. and I do not even have as much radiation as you did.
The needle biopsy should be more accurate for you.
I'm praying for an infection also. That ulcer sounds painful.
I'm still on a baby fentanyl (12 mcg) patch due to constant pain. I had to cut down the nebulizer when I started coughing up really bloody sputum. Back to just ropey choking kind and back on baby steroids (predisone)

No matter how tough we are, we can not help but worry in situations like this. Hang in there. We are all rooting for you brother.
Charm

So sorry that you have to go through this anxiety again. Wierd how it just never gets any easier. Sending my prayers and good thoughts that you get an all clear.

Hugs
Donna

Geez, Kelly, I am sorry to be reading this. The scans are scary enough. I hope and pray it is an infection. Sending you all the best in hugs, prayers and positive vibes.

Anita

My prayers are with you Kelly for good results. Who ever imagined we'd be praying to have an infection. Geez, will it never end. Anyway, prayers headed your way from the biggest wimp on the Forum.

julieann

Hi Kelly,
So sorry to read this. Can't imagine how reeling this is right now! Will be praying for good news.
Kathy

Hi Kelly,

Remember, it's not cancer till it's confirmed. Your doc is just being thorough right now. This means you are in good hands, so just breathe..... You'll get to the bottom of this infection issue and resolve it! I have faith. Good luck!!! (luck always helps! :-))

Hi Kelly, sorry about what you are going through. You're in my prayers.

The Biopsy results came in and its positive for cancer.

I am concidering a trial involving a viral injection (herpes)that trains the imune system to kill the cancer. This one originates in Japan and is a Phase 1 trial so it is bleeding edge. Has anyone heard of this trial? Brian?

The alternative is one more round of cyberknife but with the necrosis I am already suffering from I do not know if it is worth it. I can also look at chemo.

I spoke with the doctor running the viral study and am waiting to get calls back from the RO and MO regarding the other treatment options.

I'll keep updating as info arrives.

I'm very sorry for the news, Kelly. Seek out all the options you can, 2nd, 3rd opinions. I heard of viral therapy, viruses being used a Trojan horse to get into the tumor cell, maybe with another antigen agent, and able to kill it, when other therapies may not. I hope you find something. Good luck with the doctors.

Kelly,
Very sorry to hear. God be with you.
Don

the problem with the trial is if it doesn't work then you're behind the eight all with other treatments.. What are the responses in the study? Sorry and crossing all digits chemo is the one thing that would concern me as historically its not curative. Hugs

Cheryl is right. I think phase one is to see the limiting dose toxicity of the drug. My doctor said they do not do phase one trials, maybe phase two.

The single dose toxicity side of the study is done. They are now moving to the three dose stage where they do a full dose, then another full dose 30 days later and then a half dose 15 days after that. They would scan at the end of the first 30 days to asses efficacy. If no or little change I can move on to radiation or chemo but will have lost time.

I would now be trying radiation number 4. I may be a candidate for one additional radiation treatment but I think it would only give me a bit more time. They have had some success even this far out but the doctor said it was very, very rare.

Chemo does not seem to have made any huge leaps of late. I would still be buying time but I also have to consider quality of life. The radiation comes with immediate and permanent QOL issues. Chemo comes with immediate QOL issues that could extend my final days but in misery.

At this point I have resigned myself to the idea that this is and end of life scenario. Radiation would make that time miserable. The right chemo (if effective) could give me some extra time with some quality of life but it would have to be with limited side effects. I would rather spend less quality time than more miserable time.

The viral trial is the hail marry play. Plus I can add to the scientific understanding of this line of treatment long after I�m gone. Also, I have an option of last chance chemo or radiation if it fails.

Right now those are the three that are in front of me. I have some time to look around but can say that I have been to a number of CCC�s already. I would only be seeking more hail marry type solutions from trials that might take me. A very small pool of possible choices.

Only you know what is best for you, Kelly. You certainly researched all options, and are on top of your current treatment plan, and plan B scenarios. I know options are limited, with the amount of radiation you had, 3 times. Hopefully whatever therapy you have, stabilizes it. The only other suggestion I can offer is IORT, Intraoperative radiation therapy, following dissection, which I had, with a single high dose of radiation delivered by radiation probes, directly, precisly on the tumor site, cormformed to the tumor, and other vital areas protected by lead shield, and often done in irradiated areas in the mouth, oropharynx, neck, but don't know if this is possible, which is performed at a few places. I wish I could offer more help.

I am so sorry to hear your news, Kelly, but let me say one thing: If all of the doctors I have seen knew 1/4 of the things you know and researched, I would respect them and be confident of their opinions/solutions. That is not the experience I have had and I would definitely "get out of Dodge" if I had a recurrence. I know this doesn't help your situation, but you are one heck of a guy, and I pray that YOU make the right decisions and you survive. I will keep watching for your updates, and am making notes, just in case.

julieann

Oh, Kelly, I am so saddened to read this. You have done yourself proud with your considerations regarding treatment. You are certainly well-informed. I admire your composure and directness. It has to be difficult facing the uncertainty. I appreciate your insight and thank you for including us in your situation. I wish you the very best whichever way you decide to pursue. We both came onto this site at about the same time so I feel connected to you. I have been following your posts since the beginning. Whatever you decide wil be the right way for you.

Anita

Kelly, I am very sorry to read about your recurrence! Im just shocked and words escape me right now as Im sure they do for you too. Im always in your corner. Best wishes with all the tough decisions you are facing!!!

(((HUGS))) to you my friend.

I hate this Kelly. I'm so sorry. I know that you know we are all here for you. We are a family and when one of us hurts, we all feel it. My heart goes out to you my friend.
Kathy

Time is important - I'm ever the optimist and still hoping for a cure for you. I too have heard about the IORT Paul mentioned. Surgery is not a possibility? Just throwing it out there. If not I'd do the trial as it sounds like that's what you're leaning towards. Regardless of what you choose prayers and blessing are coming your way. Hugs!

Kelly,

I am so sorry to see your latest news. I have read a lot about vaccine therapies in general with some research by the Japanese going back to the 60's using the actual rumors (tumor infiltrated lymphocytes) that was furthered by the University of Texas. There are also some other therapies/trials using chemo directly into the tumors but I have not looked for any current studies. Around here they also use SBRT that is real-time 3D modeling of the tumor and treating only the tumor area. If you want a second opinion in Dallas I would be glad to give you a place to stay and transportation provided for you. Praying for any type of peace and comfort for you and wisdom and guidance for everyone to find the best possible course of action for you.

Ed

There is another specialized radiation, called Intrabeam, similar to IORT, and more targeted like SBRT, that Ed mentioned. This is used for breast cancer in TARGiT therapy, but heard of a H&N cancer patient seeing about it, possibly in Ind, but may have just been the lymph node.

Kelly

Oh no. When it looked like they would not give me any more radiation, Brian had found this one trial. It turns out my CCC at Georgetown was involved in it. I went with the third round of radiation and cyberknife and boy you are right about the price you pay for that. It's worse than anything I suffered through before. Here's the link

http://bethesdatrials.cancer.gov/cl...C_0116&utm_campaign=email_newsletter

Keep us posted
Charm

M'dear Kelly. I was reading some of the replies and just knew I did not want to read your most recent news. I hear the "treatment fatigue" in your writing and who wouldn't feel that after everything you have been through. As you make this decision, I pray for wisdom for you and then for complete peace for you once you have made this decision.

You are in my thoughts and prayers.

Hugs

Donna

Charm,

That study requires HPV positive diagnosis. I did not have HPV.

I have been following your posts and was suprised at the level of pain and side effects you are experiencing this time around. I am currently on a constant regime of pain meds due to the combined effects of the ulcer neer the tonsil, severe fibrosis and nerve damage in the jaw.

Adding to that (even if its curative) may just make life intolerable. If I thought it would deminish over time I would be very open to a new round of radfiation but I fear I might go over a tipping point into a living hell of permanent pain and necrosis.

I talked with the doctor doing the viral study on Friday and hope to hear from the RO and MO early next week. I am also reading up on all the suggestions I am getting here. I am trying to narrow them down but that is hard as each shows some promise.

I'll keep you posted.

Uptown,

Charm and I both were treated with SBRT this last time around. We just call it by its genaric name of cyberknife.

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.

Maybe they can eventually do a skin graft to replace the burnt area.....or get one of those iron on denim patches!! (just kidding!)

Thrilled to hear the good news - you are very inspiring for us all.

Hugs
Donna

Donna,

I was thinking the same thing. We just have to wait and see. Thanks for the suggestion.

Bravo! Congrats on the good news!!

Safe journey, Kelly Good luck with the radiation. I liked your "offal" quip on the radiation. I once ordered sweetbreads in Europe only to find they were neither sweet nor bread but offal flavored. Good to see you still have a great sense of humor
We all hope and wish the best for you.
Charm

Great news on your treatment plan, Kelly.

Kelly, glad to hear you have a good plan in place! Good luck with everything!!!