This is my first time posting after months lurking, so hello everyone! My husband David completed 7 weeks of Tomotherapy IMRT on 1/18 for advanced oral tongue cancer (SCC Stage III, T4N0M0). He had 5 weekly cisplatin treatments concurrently finished 12/24/12. NO surgery. HPV status unknown, he's 49 and stopped smoking at age 23, so 26 yrs nonsmoker.

Great news - PET scan yesterday and CT today are CLEAR! There's a long story about how he got to where he is today that I don't have time to share because we're getting ready to ride to the airport to head home. However, here's my question:

The onco and RO both think more chemotherapy would be a good idea to give David a better chance against recurrence. Right now he's only 6 wks post rads and his tongue, mouth and throat are red and there's still quite a bit of swelling, so the onco wants to wait a few more weeks until it subsides, the RO doesn't want him to wait too long, at most start in another 6wks. What kind, number of rounds and schedule TBD.

Has anyone ever heard of or underwent prophylactic chemo for head and neck cancer, after completing radiation or chemoradiation, particularly for tongue or BOT cancer? David got his treatment at CTCA in Zion, IL. We're from Virginia Beach, VA. We're willing to seek another opinion, as we came here for a second opnion.

I appreciate your feedback.

Melodie

Yes. I heard of doing it post treatment, and it's called adjunctive chemo therapy. For my last treatment, my RO asked me if my MO was going to give me more chemo/targeted therapy after treatment completion, which did not happen. My local oncologist is looking into Tarceva, as chemo prevention, but that is different.

There are no standardized treatment plans that doctors must follow, just guidelines, set forth by NCCN, and other clinical organizations, so each hospital, the doctor, and their experience may be different in their treatments, and so is each patient, and needs. A few here had adjunctive chemo therapy, but most usually not. The tumor size, T4, is large, and RO probably doesn't want to wait since radiation continues to work for an additional 6 weeks post treatment, so the chemo will still act as a radio sensitizer to make radiation work better. With that, also comes more toxicities, which is based on the type of chemo or targeted therapy, amount, rate of infusion, and duration, and that's the MO's area of concern.

I hope this helps, and good luck.

Thanks for responding PaulB, that certainly did help. The MO and RO were supposed to talk this afternoon after David saw them both, it's the end of the week so we'll find out early next week what the MO ultimately has planned.

All the best to you, your signature shows you're a real warrior!

You're welcome, anytime.

Welcome to OCF, Melodie! Glad you have finally made yourself known. Its always great to have another survivor and caregiver join our forum.

The treatment you have discussed is unusual. Most common is a patient being treated with radiation with or without chemo and hopefully thats the end of their treatments. Some patients will have surgery as well or some only have surgery.

Do you know why the doctor wants to continue with chemo treatments for your husband?

Hoping to prevent a recurrence. I'm just surprised this wasn't discussed earlier, and from all the research I've done and patient stories I've read this doesn't seem typical for oral/head and neck cancer. My husband's MO and RO treat a lot of head and neck cases, and it was the RO in particular who wants David to get more chemo.

Ive only seen this with one other patient and that was just within the past week or two.

For oral cancer, chemo alone is used only as a palliative measure. You will sometimes see chemo used alone when a patient has a recurrence. Is this some type of clinical trial?

Im sure the doctors have their reasons behind doing the chemo. If I were you I would question the doctors in depth about it.

Here is a link to the NCCN guidelines for head and neck cancers. Its what the treating physicians should be going by when treating a patient with h&n cancer.

NCCN H&N Guidelines

Best wishes!

Adjunctive chemotherapy is really not new, and there have been studies with it, as attached dated abstract shows, and an increase in diseasr free survival. I recently seen a few bloggers elsewhere, having adjuntive chemotherapy, so this form of treatment may have renewed interest, and maybe new treatment trend for advanced cancer in H&N to get any microscopic cancer? I had Induction Chemo, neoadjunct chemo therapy in 2009, but did not find many having it after in 2010, 2011, but resurfaced again, and now see quite a few now having it, and now is on the NCCN guidlines, while a few years ago, it was not, and was contoversial, probably still is.

http://www.ncbi.nlm.nih.gov/pubmed/10388043

The link that Paul put up really makes this pretty clear, the jury is out as to whether or not this has any real benefit, as the study of it was flawed in design.

As you can see from the recurrence forum, it does happen to some people. Why, no one knows for sure. Obviously it is some combination of their specific etiology and their genetic make up. But it is highly unpredictable who will walk this path and who will not. If the cause is indeed a function of their etiology and genes, then the chemo wash at the end, when there is no known disease remaining, does not make sense. I have heard that argument from several oncologists. If there is a risk, because of the advanced stage of the first cancer when found - that there might be some small undetectable by any technology scans that we have, micro metastasis, then you could make an argument for it.

Remember that there is a difference between local recurrences, and second primaries, which are known to occur elsewhere in the body as a result of the first. IMO if you have been declared free of disease after primary treatment (NED) then adding more to the mix is certainly counter intuitive. There isn't anything there to go kill.

The original idea was that in people that have recurrences, that there must be some residual, but undetectable diseased cells remaining, that after a couple years finally prosper and spread enough to be discovered. Actually this would not be technically a recurrence, just incomplete primary treatment. It used to be a problem several years ago when people had surgical only solutions for smaller tumor sites and did not have chemo radiation at the same time. Field carcinogenisis which takes place in many oral cancers, yields a primary timor that isn't always very focal. there are cells surrounding it that look normal (to the surgeon) and are outside what a normal surgical margin of X centimeters might be, but at the individual cell level have already developed aberrations in themselves to become low grade or even high grade dysplasia, the second of which is the stopping stone to full malignancy.

There historically has been a push to use this unproven idea in younger, stronger patients who could tolerate it better as well, "just in case".

Now with money so tight, and budgets at NCI and elsewhere being cut, a clinical trial which would find out definitively if this is something that works or not likely isn't going to be done in the near future unless some oncology chemo company wants to pay for it, for business reasons.

Bottom line, there is no good answer here. Flawed trials to argue for it, unknown real benefit from peer reviewed publication vs. anecdotal clinical experience and some hospitals and doctors advocating for it with in their opinion some measurable results. ( I don't know how you measure a non recurrence as existing because it just didn't happen biologically, or because you gave someone more chemo - either way it didn't happen). If a recurrence happened and you didn't do it, there would be a normal human desire to say we should have. But that is not a science based idea. You could do this, and if the cause is not residual micro disease, it would make no difference at all that you did. There recurrence might happen anyway from whatever genetic/immune system aberration allowed the first to happen.

Temper all this with the fact that while the least damaging of the treatments, chemo is not without life long morbidity issues. Peripheral neuropathy for one.

Hi there . First off is he's an oral tongue cancer patient it's highly unlikely he's HPV + - based on location. Secondly the standard treatment for oral tongue cancer is surgery first (remove as much as possible -or all of the tumor) and lymphnodes -then hit it with radiation and chemo. I'm not sure why they didn't do surgery.

My guess is because of the number of nodes involved and the fact that they didn't operate they are playing it safe since microscopic cancer doesn't highlight on scans, and once it's in the nodes it can travel to anywhere.

Cisplatin - the chemo they use during rads - works in conjunction with radiation. So it's likely a different chemo or combination of chemos they have in mind. Hopefully they'll do some kind of testing to determine which one his tissue responds to.

That said I have to agree with the sooner the better premise. congrats on the clear scan. And welcome.