Usually the primary for this cancer is your surgeon. But if the MO is telling you he thinks you will get a response or hoping for one that is good - I suppose. I would however ask him what the next steps are. I'm saying this because I'm wondering what they are hoping for and what the expectation is based on. It's all about the questions you ask.

SO... I'm going to throw a few out there for you.

How often has this treatment worked against NON-HPV related oral tongue cancer?

How often do you use this form of treatment for this particular cancer? (I'm saying this because it's usually used for HPV+ cancers as it's virus related and responds very well to chemo and rads - But rarely for oral tongue NON HPV cancer - because it has a different cause/etiology)

So if I do this treatment and say we get a shrinkage of 20% say... then what is the next step?
(I'm assuming the response would be rads and chemo combo)

If this is his response, ask him how many patients with oral tongue cancer are cured by rads and chemo alone. and how many he has treated with this form of treatment only?

There is a distinction between non HPV related and HPV related cancers and their responses to certain treatments.

I know you're trying to avoid surgery - but most CCCs have a cancer board. ALL three work together to create a treatment plan that best serves the patient. They do this based on years of experience. Ask a surgeon... usually he'll want to cut... an MO they will want to give you chemo, and a rads guy he'll want to fry you. They need to work together to offer you the best possible outcome. That's a balanced option.

So after all of that ask them based on the stats for your type of cancer and size / stage of your tumor what is the realistic expectation that you will get to avoid surgery.

Also with at tumor that size it's very likely in your nodes - if not visible on a scan - then microscopically.

Based on what you've said on the forum. Stage 4a - (read up on it and educate yourself thoroughly on what it actually means if you haven't already.) this is not a tumor to be messed with. I had stage 2 and was terrified based on what I had read.

I wish you all the luck.

hugs.

Just to add, Induction chemo, IC, had been around for 40 years, and was originally used as organ preservation for Larynx cancers, possibly with just PF originally, and Taxotere was added, hence TPF, which was found to be safer, more effective than PF, from a Veterans Administration trial, with chemoradiation to follow. This was then used in pharynx cancers such as the oropharyngeal in BOT, Tonsil, with good results since the alternative was major surgery. From that, led to show good results with HPV oropharyngeal cancer also, which started to be shown as an increase cause of these type cancers, but HPV probably would have responded well to any type chemoradiation. As mentioned, IC is controversial, but several top CCC use it, but had no overall survival benefits shown through several studies, but local regional control, distant metastases were.

Here is a good article on IC, but may have have to sign in. There are many more trials, namely Decide, Paradigm, as well as articles, abstracts, many which I have since I have a personal interest in TPF IC.

http://jco.ascopubs.org/content/32/25/2685

Cheryl's response is a good one. You have a large tumour involving 90% of your entire tongue You have already identified that you have LVI and PNI. This is an aggressive cancer. What are they telling you that the Induction chemo will do for this tumour?. Will you avoid surgery? What about a neck dissection? Current research shows improved outcomes for oral cancer patients who undergo a neck dissection. I think you need to weigh up the benefits/risks here. I would only be happy to proceed with the induction chemo if that was the recommendation of a whole tumour board.
I am positive that the only reason Kris is still alive is that we moved very quickly on his surgery. He had a stage 4a, very large, Base of Tongue tumour that involved 50% of his tongue. His was HPV positive, but was not cured with earlier radiation and chemo. He had no LVI or PNI.
Please move quickly, make sure your case is discussed and treatment recommended by a whole tumour board. Not just an MO , not just a radiation doc and not just a surgeon.
We are not medical Drs . This is just my opinion. But I do have personal experience and have spent some years on this and similar forums. I know that you are in an awful space just now. It is certainly very understandable that you want to avoid this extreme surgery . Please make sure that you make a well informed decision. This is your life.
Tammy

Hi Cheryl,
Thank you for your post and question suggestions. Yes I've read extensively---couldn't stop! But I have also leaned on doctors and listened to them (and have taken my husband along for every appointment).
I too thought HPV was an issue for oral tongue---the doctors at Memorial Sloan Kettering and NYU have all told me HPV (+ or -) is more of an indicator for cancers in the throat and not in the tongue so my HPV- really does not enter in on this.
The tumor boards for both hospitals both returned with recommendations for induction chemo as a first step here. I understand it is not standard of care. These rumors typically respond well to chemo. And the response to chemo is highly indicative to how it will respond to rads. If the TPF is successful and the tumor shrinks and softens then that is indicative that it would respond well to radiation and therfore after induction chemo I would move on to chemo-radiation.
If the chemo is not successful and we merely see stability (it will not continue to grow) then I would have to proceed with surgery.

I go in Monday for the med port and feeding tube and start TPF on Tuesday.

Hi Tammy,

Yes I am making a very informed decision. The tumor will not grow once I start chemo so I am not losing time in that respect. As I explained to Cheryl, the tumor boards from both Memorial Sloan Kettering and NYU both recommended TPF so I am confident I am in good hands.
I start Tuesday...med port and feeding tube on Monday, chemo Tuesday.

Thank you for the article link Paul!!!! I know you had a terrible experience with TPF so I thank you for also being able to speak to the research out there as well as your personal experience! I start Tuesday. We told our kids last night (the absolute worst part of all of this) so I'm ready to fight. I know I have a challenging road ahead but I am very hopeful.

You're very welcome! That's the one thing, chemo can be started immediately, as opposed to surgery sometimes, as I had to wait a month or two for several depending on hospital, doctor, procedure. Don't worry, I speak terrible about most things lol, but I'm more of a rarity as far as my cancer experiences. Sorry about the kids, but you will do fine, and are far ahead than I was. I didn't even know what an oncologist or ENT was when I started.

When I did IC at Mt, Sinai in 2009 you were in the hospital. Now I believe you get a fanny pack for the 5-FU for 4 days. I assume you're going to East 34th Street?

Anyway, good luck, and if you have any questions just ask, and of course your doctors also.

Here is a link to OCF's listing of treatment complications, which you may want to look at. I'm sure a number of staff from the treatment center will speak with you also, and go over what is likely or unlikely to occur, and some have chemo orientation before starting,

http://www.oralcancerfoundation.org/complications/

The tumor will not grow once I start chemo so I am not losing time in that respect.
Glad thing are moving quickly for you and getting recommendations from the best cancer facilities.

IC with TPF does work as I have stated earlier. My final scan stated near or complete resolution of tumors. I saw immediate reduction of the tumor.

While on chemo the tumor's growth can slow, stop, or shrink. Nobody should have told you it would stop growing. The hope is it shrinks or at least stops growing.

If the tumor does not respond by the second cycle they will likely be discussing plan b for you.

Just wanted to make sure you are aware of all possibilities.

Good luck
Don

I didn't see your other responses before, but glad you're getting a peg tube and port. I have them too, and both come in handy. You'll get instructions about mainaining swallowing function with food/liquids for as long as possible, and even dry swallowing if it becomes too difficult.

Although it's no indication of anyone else's treatment response, but from just 5 days of TPF IC, no radiation, it killed all my cancer in the tonsil, and 2 lymph nodes, plus other areas of cancer suspicion, to the point of being unpalatable and undetectable by PET/CT scan 8 months later. Before I left the hospital, they had advised to make sure I come back in 21 days for further treatment since many think they don't have to from the good response. I wish the same for you.

Hi Don,
Yes I know Plan B is still on the table and all depends on the response we see. It has to be robust response or surgery will be the rec. the doctors at both MSK and NYU all said this should not continue to grow with the amount of chemo being thrown at it and if in fact did grow while in chemo then i have an even bigger problem on my hands. I asked that question several times as did my husband.
Right now I'm going to try and focus on what I can control---which is staying strong, nourished, hydrated and rested as I can; get over my disappointment with the PEG because I KNOW I need it and will be stronger with it; and stay in a positive frame of mind to help me fight like hell!