Thank you, thank you, Jerry for sitting through an overwhelming amount of information and just having you there made it less stressful. We were wiped out by the time we got home and I am sure you felt the same.

After two scopes of my tumor on the back of tongue -the first no anesthetic and the second might as well have been without. The bulb blew as I was being scoped and that was that however it was the second look by the radiologist.
I learned more of the same during my appointments with surgical team and radiology team but different information than my first consultation on Monday at the Regional Oncology and Hematology Center. My treatment will surely include radiation and chemo but I will undergo a second thorough examination under general anesthesia on Monday, 2/7 by Dr. Ridge. He wants to get a better look and the location makes it impossible to see the details and location of the tumor without this exam. I did well with the initial biopsy so I am expecting I will be fine with this one and the info. will be used to map the tumor and help in designing my treatment.
A feeding tube was discussed at both visits. At the first it was to be put in prior to any other treatments however the doctors at Fox Chase said to preserve the swallowing reflex it would be best to wait and the tube could go in later. To my friends on the forum what is your experience with the feeding tube and this opinion?
At this point it is a more generalized recommendation for treatment-7 weeks of radiation and 3 weeks of chemo. Although testing is being done to determine if this tumor is an HPV tumor if so there is a clinical trial which would possibly extend treatment and increase the number of chemo treatments. Only if it is HPV would this change and it would be totally voluntary...any opinions on this?
I felt true concern and total confidence by the doctors and their teams in treating my cancer via my consultations. I hope to hear from some of you. Thanks for listening.

Can you please describe in more detail this trial extending Tx ONLY if HPV+? That makes no sense whatsoever.

Well, I don't really know all the specifics as of yet. I have not met with Dr. Burtness and she is the one who will share more indepth information in regards to the clinical trial. But the way it was described to me is the treatment would start with chemotherapy for five weeks and the tumor significantly reduced would then be followed by radiation for five weeks and the tumor would need to be totally gone otherwise if not you would then follow with the seven weeks of radiation bringing the total time for treatment to about 12 weeks vs. the seven weeks of radiation with the three chemo treatments to be administered in combination with the radiation.
I will have a better picture of this after next Tuesday.Thanks for asking.

Please before you commit to any such Tx do consult with a CCC. I realize you can't give me all the particulars and those could certainly make a difference in my comments but what you describe so far just sounds sooo contrary to what I would have expected from a HPV+ SCC trial. Remember a Dx of HPV+ has shown that the (current) Tx of say 35 daily rads totaling +/- 70 gys plus chemo since normally there is nodal involvement shows a better response to that Tx than a HPV- cancer and ever since that study RO's have thought about the possibility of a study that would include LESS radiation not MORE radiation with the idea being that perhaps less radiation and therefore less collateral damage will achieve the same goal of killing the cancer. No such study to my knowledge has been started yet.

David, I am also aware of work being done to get a study on reduced rads through for HPV+ patients, but have not seen an approved study yet, though there may be multiple people applying for different ideas, and the people that we know commonly may not be part of something recently approved. It could be that these are more sessions with less rads per session.

Back in the day when I went through fractionation had just become the rage in treatment. Less radiation per visit more visits equaled better out comes. Today fractionation has become the standard. Also in some centers the idea of pre rad chemo like described here, to reduce some bulk (which then reduces the number of rads exposed later) is the protocol. Long term quality of life issues from chemo are significantly less than from radiation. So given the good institution that she is at, perhaps we should wait until she lays out the entire plan which hasn't happened yet to determine if lower radiation is actually part of her plan. Sounds lie at the 5 week mark (no where near 70 grays) they will deciding to go on or not. If they go on she would be getting the same grays as everyone else.

So it sounds normal, just that they are going to reevaluate things 2/3rds the way through and potentially quit early if the lower dose/duration has done the job.

[quote]A feeding tube was discussed at both visits. At the first it was to be put in prior to any other treatments however the doctors at Fox Chase said to preserve the swallowing reflex it would be best to wait and the tube could go in later.[/quote]

That's exactly the advice that my doctors gave me at my CCC. It worked out very well with me getting thru the entire radiation and chemo without a feeding tube, although I did have to switch to liquid (Ensure Plus) at the very end. Out of all the issues I've seen discussed at OCF, the decision to get a PEG or not triggers the most emotional responses. IMO you should go with your doctors' recommendation.
Bear in mind that just like diet/nutrition discussions, the majority of posters here truly (albeit incorrectly) believe they are posting scientific fact when all they are doing (myself included) is sharing personal anecdotal experience. Radiologists fall into two camps: those who favor getting a PEG tube before you even need it because it guarantees nutrition when swallowing does become difficult, and those like your doctors and mine who feel the risk to swallowing is simply too much plus they are not as dismissive of the hassles and complications inherent in a PEG. Unfortunately nobody has any valid studies to resolve this issue.
Most of us did follow our doctor's recommendations and it's not surprising we feel that our personal decisions were the right ones. Foregoing a PEG does not make a patient "tougher" just like getting one does not make a patient "smarter" although you would not glean that from the PEG wars.
Best wishes
Charm

Brian,

That's why I preferenced my comments with "I realize you can't give me all the particulars and those could certainly make a difference in my comments but....." I'm sure there must be more to this trial than she has told us.

Yes, Brian you have broken it down nicely. Yes, there is more. I have yet to meet with DR.Barbara Burtness who is the head doctor on this one. I imagine at that meeting on Tuesday afternoon at Fox Chase I will have more concrete information if I am eligible. I appreciate the thoughtful comments.

Charm...a diplomat? I am enlightened by your response.
I agree it is nothing to do with tougher but I do want to maintain as much as I can of the swallowing reflex and although I do not know what I am saying concerning "pain" or lack of that ability to do so I do want to make my recovery as successful as it can be. I think that is what I keyed in on, preserving the ability to swallow. Of course, I need to bulk up now because I do have real concerns about about maintaining my weight.
A question, what are the liquid supplements used that are good choices for nutrients during treatment. Jerry mentioned a Carnation brand?

That's Carnation Instant Breakfast VHC (stands for Very High Calories) which has 560 calories in the same 8 oz can as others but they have far less calories. Consuming the VHC means less cans, less time and therefore less pain each "meal" to get the same calories. You don't need a prescrip but you either order from the pharm dept of say Walgreens or CVS types or over the internet. I used to get mine from Walgreens, cheaper than the web and it was in the store a day or 2 after I called them.