Hi everyone...Just introduced myself in the Introduce Yourself forum
Did anyone here (or is currently) undergoing induction chemo? I was just recently diagnosed with Stage 4a SCC of the oral tongue. The tumor involves 90% of my tongue and today my doctor recommended (and stated is standard of care) total removal of my tongue. When I asked if we could shrink it first to try and salvage my tongue he said he would be willing to do induction chemo. I am 40, very active, never smoked, HPV- and to boot I am a teacher so losing my tongue means losing my career---and something I am truly passionate about.
Would love to hear about experiences and thoughts.
(all this happened in a matter of 2 months---went to doctor who gave me antibiotics, dentist treated for traumatic ulcers til finally on June 1st ended up oral surgeon who said biopsy right away).

I had TPF Induction Chemo in 2009, which is high doses of Taxotere, Cisplatin and 5-FU, and is usually given in 2 or 3 five day continuous doses spaced three weeks apart from each other, then after that were supposed to do 7 weeks chemoradiation. I had my one and only week IC administered in the hospital as was the protocol then. I do not have any kind words to say about this controversial treatment since it nearly killed me, stopped any further curative treatment, hospitalized me for 6 months, which basically resulted in causing 6 more recurrences through the next several years, and permanent side effects including paralysis, neuropathy, blindness, chronic kidney disease.....

It had a domino of side effects starting with Septic shock, Sepsis, organ shut down, cachexia.. lost over 110lbs in weeks, Steven Johnson Syndrome like burns in the mouth, face, hands, disseminated or invasive candidiasis throughout the body, some which have a 40-60% death rate, and many more having gone from hell and back.

The one positive thing is it works, but as said, it's controversial since it has high toxicities, which can result in not completing the full IC or stopping or delaying further curative treatment such as surgery, chemoradiation, and worse, as was my case, but others may not have had the same result or had different chemo's and dosages. They seem to be using Erbitux, others chemo's as well, maybe replacing some chemo's from the original TPF or PF regimen.

It killed all my cancer, tonsil and two ipsilateral lymph nodes, but it doesn't last, and will most likely return within 8 months, as I later learned, although my tonsil cancer never came back, even though I wasn't able to do my first radiation until 14 months later for a lymph node recurrence, and by then I needed a radical neck dissection, RND, where cancer was found in my neck muscle too, which wasn't my last.

Not trying to scare anyone, but saying like it was for me, actually I down played it. I initially shrugged IC off when I heard it's difficult treatment, I didn't even know what chemo I was getting I was so arrogant, and thought I could beat anything lol. I was knocked out for the 10 count in the first round! It's for you to decide. I wouldn't do the same chemo, probably can't anyway, but I did do others again, twice, with Taxotere & Eribitux, then Carboplatin, even combined with radiation, none which resulted in the same debilitating effects, but were being used as a radio sensitizer to help radiation work better, not to shrink or eliminate the tumor like TPF IC does. Even if so, I would still be afraid of any microscopic cancer lingering that was not being eradicated by surgery, and if that's limited, by radiation, another consideration.

Also, recent news shows that elective neck dissections with oral cancer has better overall survival, if you want to talk to your doctor about that too, read OCF article.

Although surgery is usually the standard for oral cancer, there is a top chef in Chicago, if not the country, Grant Achatz of Alinea, who had tongue cancer and only did chemoradiation, I believe. You can look up his story.

I see you're from NYC. Me too. I was treated in a number of hospitals, maybe some of the same.

Good luck with everything. DonFoo had TPF IC, and probably has a different response than mine, but we both had tonsil cancer, which is treated somewhat differently than oral/tongue cancer.

Hi,

I had TPF too. It is rough, no way around that. Paul had a very difficult but unusually tough experience. The vast majority get beat up but make it through ok. If they feel the treatment can reduce the tumors, you really should give it serious consideration, especially if it may save your tongue.

Hi Paul and Don,
Thank you for your replies. The doctor I saw today said there is no way of knowing if it will reduce the tumors or not. I know this is not curative and additional treatment will be needed and am prepared that surgery, radiation and chemo are all still likely. I am just hoping to not lose my tongue and therefore think I have to try this first. Once it's gone, it's gone and frankly right now I can't even wrap my head around that possibility at all. I also still have the second opinion at MSKCC tomorrow...hopeful for options.

Having options are good, including other opinions. There are few top places in NYC for Head and Neck Cancer, if you need further consultation, Beth Israel, NYU, Mt. Sinai, Columbian Presbyterian, Lenox Hill.

Good luck.

Wow, MandaRe, you have some tough choices to make. I hope that MSKCC will make things clearer for you.

I've had cancer of the oral tongue and reconstructive surgery to replace half of it with a flap from my inner wrist. I went back to teaching after that surgery.Four years later when I had a new primary on the buccal mucosa, I knew that my teaching days were over, even though my speech remains good. It's just more of an effort to talk and at 68 I was only ever going to do relieving or supply teaching anyway. I was thinking of doing some online tutoring which is a real option these days.

My daughter-in-law has just completed a course of inductive chemo for breast cancer. It has shrunk the tumour considerably so that surgery will be much smaller than otherwise. However, when I researched inductive chemo, I found that the stats do not support it as a first choice of action. But then each individual is different and for you it might be the best choice.

All the best
Maureen

My husband presented with a large lymph node/low mass base of tongue tumor.At the time, Dana-Farber Cancer Institute, placed him in borderline category for induction chemo. Local MO recommended induction, as he was very healthy. He decided on induction.

It is very difficult tx. He got through it and managed to stay out of the hospital with very close monitoring by team and me. I would make sure you are someplace that will stay in touch with you, administer fluids & medication as needed, even over holidays/weekends. I believe it increased his post-tx side effects. I often wonder if his post-tx recovery would have been easier without it. I tend to ruminate; he does not. There is no way to know. He is content that he took aggressive action the first time and has NED seven yrs latter.

Hon... please read my response in the introduction forum.

Met with team at Sloan today (yesterday's meeting was with surgeon at NYU). The MO is confident induction chemo is a good treatment plan for me---the tumor is extremely aggressive. The team says if it responds to chemo and shrinks that's a good indication that it will respond to radiation. I am meeting with the ENT from NYU again tomorrow but this time with the MO and RO.

Well, I'm glad to hear of a positive 2nd opinion, and are moving forward. I go to NYU also, was there on Monday, and are in good hands If you go there for treatment. I know who the RO is, and he is tops too. Gee, I see you added PNI, LVI to your signature. I had that too, several times, and it can be treated.

Good luck tomorrow, and thanks for keeping us updated!