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!

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!

Paul,
Oh I'll keep going back LOL I hope I have that response!!!' But yes, I will finish the 3 rounds they are thinking I will need and then if I get the reaction you saw and they're hoping for then they say it be chemoradiation after that. My RO said I will likely get the external beam and the seeds (brachytherapy). Any experience with that (seeds)?

I had a newer form of brachytherapy twice called HD-IORT, High Dose Intraoperative Radiation Therapy, which uses the same radiation accelerator as HDR Brachytherapy. Brachytherapy, internal radiation, is given in low dose rate, high dose rate, Pulse Rate, temporary and permanent seeds too, like with prostrate cancer.

IORT was somewhat similar, and is used during the tumor resection, and radiation applicators placed directly on the tumor and given in high dose, like 12Gy, which is actually equivalent to 3x that of external beam, followed by chemoradiation after healing.

I have some information on Brachytherapy that you may find of interest.

http://www.americanbrachytherapy.org/patients/index.cfm

I hope your surgery went well yesterday, and good luck with the chemo today!

Wow... I'm surprised they said the chemo would stop the growth. I am not sure that they can guarantee that, but I honestly hope they are right.

If there are patients here who've had rads and chemo and their cancer continues to grow then I am not sure how they can state for certain that the tumor will not continue to grow.

Best of luck (from the bottom of my heart)
You are at good hospitals so I have hope that they are right.

hugs. Let us know how it goes.

Hi Paul,
The surgeries ended up being quite a speed bump--I'm calling it that now---wasn't happy little more than 24 hours ago. Doctors admitted me Sunday, 6/21 because I have hyperthyroid (Graves Disease) and since the tumor is on my tongue the anesthiologist wanted to evaluate me first. Due to Graves and general stress around all of this my heart rate was ridiculously high-at one point 118 so Monday morning he wanted full endocrine consult. Endocrinologist said just give beta blocker and she'll be fine but by then (10 mins later) IR had already bumped me from schedule. Long story, short couldn't get me back on schedule Til 2:30 yesterday so I was in hospital an extra night and it meant I couldn't eat or drink after midnight Monday morning until 4:00 when IR said there was no way they could do it Monday and then again no food/drink as of midnight Tuesday until almost 9 last night when they discharged me.
Surgeries went well but the PED is quite sore. I'm still swallowing liquids and pur�ed foods well. Chemo starts today. I was able to get fluids and calories in but obviously not a full day's worth.

Hi Cheryl,
My precise question was would it continue to spread and their answer was no it shouldn't and if did we would have a bigger problem on hand. Perhaps due to the intensity of the TPF and the fact that it will treat my entire body rather than the targeted areas only that radiation treats. If the tumor responds to this then that's a good indication it will respond to radiation. Not all rumors respond to radiation--that I learned as well so the TPF gives my doctors some good info in that respect as well.

Two amazing hospitals so here I go!! Fingers crossed my tumor responds!! My friends and I have named this beast---I was calling it the nightmare or "flipping" nightmare in my mouth so they started calling FNIMM (pronounced Fennim lol). Gives me something to address and put on notice. Sometimes ya just gotta laugh in this fight or it a all becomes just too much.

Sorry for your compounded troubles. I was going to say that seemed kind of much with the two procedures in one day, and then IC the following day. I had the port put in the same day as I started IC, wasn't a problem, but didn't have a peg tube until two months later, which left me sore. Many HNC patients wind up having hyperthyroidism from radiation, I do. Which hospital are you gong too? Both?

Good luck today!

More power to you... a chemo combo is harder than the chemo given with rads... I'm sure you'll get through it okay... hopefully they have a quick plan in place post treatment so they can get you going right away.

Hugs. and best of luck to you.

Hi everyone....I am 3 days into induction chemo. So far only side effect is fatigue! They have had me hydration last two days which I read that some people said is essential---the center is open all weekend and available if I start feeling queasy and nauseous as well. Disconnect from pump on Monday! There is already some shrinkage of tumor noted and some improvement in speech as well. I'm trying to keep my hopes in check but I am hopeful and happy that I am having good luck side effect wise so far!
Cheryl...yes after week 1 of cycle 2 we will reassess and update scans to see what's going on and decide next steps. If there is not enough of a change then the recommendation will likely be surgery with original tumor margins (total glossectomy) but If it does react positively then after cycle 3 I will start chemo-radiation right away. Right now the plan would be to do high dose Cisplatin and external beam as well as seeds (brachytherapy) obviously ALL of this is up in the air until formal assessment is conducted and discussed!
I feel very good with my decision and my treatment team!

Paul, most HNC end up with hyperthyroidism??? I think most end up with hypothyroidism. The radiation usually burns out the thyroid---and that will likely end up what Happens to me and if for some reason it doesn't then once my treatment is over they will burn it out because it will deplete my white blood cells and be too hard on my heart.

Best thing you can do is focus on what is within your control.... your intake! Every single day strive for a minimum of 2500 calories and 48-64 oz of water. These are the bare minimums! If you can take more in, do it. By pushing yourself with your intake it will ultimately only help make this easier on you. Plus when getting chemo, you will want to flush that poison out of your system with extra water.

Hang in there, we are in your corner

You're right. Should have said hypothyroidism, and is what I have. Chemo side effects can take a few days, and some longer with 5-FU, but that's a good sign so far. Christine gave sound advise with adequate nutrition and hydration, and sure the center spoke about impeccable oral care, and prophylaxis to help with oral infections and mucocitus which can occur with chemo, besides with radiation. Good luck over the weekend.

MandaRe, you are going well so far. You have momentum.

I always get my hypos and hypers mixed up on the spur of the moment but yes, I had a blood test for low thyroid a few months ago and it turned out that my thyroid was okay but iron levels low. My fatigue was completely cured by iron tablets: a good outcome. Seems as if one thing doesn't cause fatigue another will.

I'm watching your posts with interests and cheering you on:)

To all those here in the US--I hope you all enjoy the 4th of July weekend with friends and family! :-)

Alpaca,
The last two days (Day 9 and 10) I feel almost like "me"!!! My energy is coming back and any pain from the mouth sores (which showed up late evening of Day 6) is merely discomfort here and there since the pain mgmt team got in immediately and helped me get it under control. So Cycle 1--day 4 -7 the fatigue increased each day but day 8 started turning around significantly.
Surgery cites are healing nicely--the pressure from the mushroom in my stomach (PEG tube) still bugs me here and there but that improves every day as well.
Today I woke up, stretched, looked out the window and noted what a pretty day it looked like it was going to be and only then remembered the cancer in my tongue. I wasn't expecting to have a morning like that for a very, very long time.
I'm taking each day as it comes, hoping appetite starts to come back before I begin Cycle 2 on July 15. I know Cycle 2 may be completely different from Cycle 1 and I'm just going to take each day as it comes.