I had a botched tongue scc excision in 12/08. Their was a positive margin that the original institution missed and gave me no help discovering. Since then 2 lymph nodes have become palpable and are PET positive, (I was PET negative in January)

I currently have a firm hospital date for 04/06/09 and plan with shands at UF to do a partial glossectomy/neck disection followed by 6 wks 2/ day rads, no chemo. They feel that the timing of the progression to the nodes shows this to be very aggressive.

Today the H/N team at University of Chicago recommended that I hold up on that and are willing to see me on Friday 04/03/09 about an experimental chemo/rad treatment. The protocol calls for 8 weeks of treatment at every other week,(16 weeks total). Its some sort of concurrent chemo/radiation where you spend the whole week in the hospital and then go home for a week. Part of their interest is that I have never smoked, do not drink and have no comorbidities.

The every other week thing flies in the face of any sort of conventional radiation where you don�t give the tumor cells a chance to repopulate.

DOES ANYBODY KNOW ANYTHING ABOUT THIS NEW TREATMENT???

Thanks,

Mike

Toung scc dx 12/08. botched surgery, positive margins undisclosed by treating institution, 2 nodes PET positive: looking at treatment alternatives

Brian or Gary or maybe Markus would be your best bet to respond to that as I've never heard it discussed. That said I know my RO at Moffitt has discussed alternative Tx's that may subject the patient to less toxic side effects where HPV is indicated. Since tobacco can most likely be excluded have you been tested for HPV?

David,
Yes. Like 25 different strains and they were all negative.

I think I have more info about what they are looking at me for: Paxitaxil: which is a sytemic chemotherapy agent that they use at somewhat lower doses than in standard chemotherapy along with a coctail of the newer radioenhansing drugs.

As before ANY info will be helpful as I have to decide on wether to hold up on the surg tomorrow at the latest.

Toung scc dx 12/08. botched surgery, positive margins undisclosed by treating institution, 2 nodes PET positive: looking at treatment alternatives

Really can't be of any further help. I'm sure you have done as much research as you could on your own and I wish I could take you further but I haven't heard of this specific approach but it may be an attempt to lessen the toxicity of the treatment to good cells while maintaining the kill rate to the cancer cells. Just my guess as that's everyone's goal so why would someone propose a new treatment unless it achieved that goal?

Bringing this up to the top.
I have no experience with the proposed plan. Have they told you what the advantage of this is over the regular approach? Following the surgery you will need some time to heal.... in which you can explore this in more detail.
I am curious how did they miss the positive margins?

Best
M

Never heard of this before either. Any chance of getting a second opinion and presenting this info after they give you their opinion?

I am sure that the reason none of us has heard of it is because it is experimental, based upon the original post. Not clear if this is in lieu of surgery, before surgery or after surgery, based on the discussion.

I am all for helping to advance science, but (for me only) I would be reticent to experiment with an untried treatment unless my other options were clearly unlikely to result in a cure or were so disabling as to make them intolerable. Based upon the limited amount I see here, I am not sure that I see those things present.

Also concerned that no chemo would be included in the non-experimental protocol. Chemo has become a fairly standard part of the regimen, and for many, is far more tolerated than the radiation.

Just my observations, and how I would approach things. Not a suggestion or endorsement. I chose the most aggressive treatment they could provide to maximize my chance at a cure. Do I have some issues now in terms of saliva, shoulder discomfort and related? Yep. Would I do it over again, given the same choices? Yep.

Best of luck, whatever you decide.

Chemeng,

I like you had a "misread" biopsy after my surgery. It only came to light when I went for a second opinion and they took a second look at the biopsy from the surgery, and sent an amended report that the �margins were involved with malignancy� � not the kind of news you want 6 months later. Perhaps we had the same incompetent pathologist!

I ended up consulting with 3 different facilities, multiple doctors, lots of tests (no cancer found), and then given the option of �watchful waiting� or radiation. I opted for the radiation for peace of mind and to hopefully kill any lingering cancerous cells.

I�ve had a lot of issues related to the radiation and often wondered if I should have went with the watchful waiting, but it is 3 years since I�ve finished the RT, and nearly 4 years since my initial diagnosis, and so far the cancer has not returned.

I wish you the best with your treatment. I think the worst part for me was the waiting, not knowing, and not doing anything.

Mike,

I am not sure if it is any different than yours, but my brother, 41 yo non-smoker or drinker, T3N0M0, underwent something similar to what you are describing at U of C. His was a PRIMARY treatment, and consisted of 10x weekly IMRT, M-F, plus 24hrx5 chemo of three or four different types. It was a brutal treatment, but avoided surgery for his BOT scc. It was not considered to be experimental, but a new "gold standard" of care. It was used on one of Chicagos famous chefs, Grant Achatz, to save his tongue. For that reason, there has been lots published about it.

That one never had it bad enough to lose anything from the post and stories I have read, but he was a bigtime chef.