First time poster, joined today, like very much what I see in the board.

Male, 57, California, in good health, no other issues
DX: BOT SCC Stage 4a, HPV+, multiple nodes

Spring 2012 Felt tiny "gland" underneath chin, at back of throat. Thought it was simple sore throat. PCP took a look, prescribed antibiotic. Two weeks - no change, prescribed second round of antibiotic and directed to ENT if not gone. Did not go away and did not go to ENT. Zero pain or discomfort, only symptom is visible lump getting larger along side of neck. Surely must be some gland just building up some infection associated with regular sinus area congestion.

Nov. 30 - Dec. 3, 2012 Finally went to PCP after admitting lump in neck is not going to go away on its own. Immediately told it was cancer and referred to CT, labs and ENT. Went to get blood drawn and next day got CT of neck area and chest then saw ENT who did endoscopy and reviewed radiology report and declared hypopharyngeal cancer. Created a series of orders for more tests.

December 2012 ENT referred me to Head Neck Cancer Surgeon, trained at Sloane-Kettering. More tests PET-CT, MRI, In-office FNA results had lots of inflammation cells so a bit uncertain with remaining tissue cells. General operation to do a series of DX procedures and biopsy several areas. PET-CT shows inconclusive spots on lungs, one on right and on left. Could be inflammation, something else, or maybe cancer; so, staged M0.

Final DX of BOT SCC Stage 4a/b, multiple nodes. Suggests likely treatment is concurrent chemo and radiation, the standard protocol. Key takeaway from HNC surgeon is to choose the most aggressive option as I am young and fit and better to strive to kill all potential distant cancers now and and reduce chance of recurrence.

January 2013 Initial appointments with MO and RO. MO suggests, in addition to standard chemo-radiation regime, an induction chemo therapy be done since the PET-CT shows possible cancer and there may be microscopic cancers not yet detectable. The dreaded TPF with 5-FU is suggested.

Next day, initial consult with RO who feels induction chemotherapy is probably not needed as no definitive studies have shown induction improves overall survivability. However, he speaks with the MO and I hear him say he would go along either way.

My case goes to tumor board next week so I have some time to get informed on induction therapy as the standard chem-radio therapy seems pretty well established and agreed. What is the general experience here and are there any studies showing improved efficacy with induction chemo sequential with chemo-radiation?

Thanks in advance and look forward to being active here.

Don

I will post elsewhere going forward but would love some opinions

Hi Don - welcome and sorry you have to be here, but you've found a great place for information and support. You'll doubtless be hearing from those who've had induction therapy. Where (generally) in CA are you if I may ask?

Hang in there - we'll help get your through this!

Hi Don,

My husband had almost the same experience as you -- a recurrence of mouth sores and lump in the neck. He was given antibiotics, the sores went away but not the lump. The ENT's looked and took needle biopsies and the results were inconclusive. He then had a quadroscopy which confirmed the diagnosis of Stage IV BOT cancer. He has just completed 35 sessions of radiation and two of the three scheduled chemo (Cisplatin) because he developed deep vein thrombosis after the second round of chemo. He did not have induction chemo but as far as the RO could tell, the lymph nodes have responded to treatment. His reasoning is if the lymph nodes have responded, then the primary tumor should have,too. We are now in post Tx and waiting for the seven weekday Tx meeting. It has been an eventful roller coaster ride for us. I wish you a smoother journey than we have had. It is a tough road to take, but you will get through it. The members of this forum are amazing, come back often for support and information.

[quote]Where (generally) in CA are you if I may ask?[/quote]
San Francisco - East Bay (between Berkeley and Walnut Creek)

Thanks for the welcome. I look forward to being part of the community.

Don,

Did they biopsy your lungs? I had two spots show show on my lungs also (one on left, one on right). My ENT thought they showed cancer but the RO said they were the wrong shape. Did biopsy which showed inflamation.

I had TPF Induction Chemo..Taxotere, Cisplatin and 5-FU, aka as neoadjunct chemo, in 2009 that did not go well, so I was not able to complete the other two induction cycles, and the 7 weeks of chemoradiation that followed as planned. As a result, I had numerous recurrences, but the 5 days of induction chemo killed all the cancer, almost killed me too, but it doesn't last if used alone, and cancer usually returns in less than a year, and it did with me, not that this was the planned way to go, but was not medically stable for further treatment after the 5 days of Induction. My situation is probably unusual.

Induction chemo has been around for a while. after the success of Cisplatin, and used mainly in organ preservation for larynx, hypopharyngeal, BOT cancer. I believe it was initially used just with PF, then Taxotere was added, and found to make it work better, and now is used with other induction combinations, including Erbitux. It is controversial, being it has a high rate of toxicities, which may delay the real curative treatment, which is radiation and surgery, and the possibly of too much chemo hampers tumor kill, but otherwise it is very effective for tumor control, distant metastases, but overall survival is not improved, in some studies, mainly done in the 80's-90's, and no real head to head comparison were completed yet with this vs chemoradiation, and some doctors are waiting for this, but others are using it outside clinical trials for treatment being it is effective.

There is also renewed interest witn Induction chemo with rise in HPV in HNC, which shows better response to treatments, plus these patient are younger, have less comorbities, and are able to handle a more aggressive treatment regimine. Dr Posner, now at Mt. Sinai, did a study with HPV pos vs non HPV, with induction chemo, and showed an improved response rate, and OS with HPV postive vs negative.

The NCCN added Induction Treatment to their Head and Neck Cancer Treatment Protocol for advanced Oropharyngeal cancer, and a lengthy discussion about it can be read.

http://oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf

Welcome to OCF! Glad you have found this forum to help you with info and support.

Adding chemo to the radiation treatments will help the radiation be more effective. Sorry I dont know stats off the top of my head. Since your tumor is HPV+ thats good news. Its easier to treat and recurrence rates are lower. But since you are Stage IV, I would suggest doing the chemo. You want to hit it with everything you can to make sure you only go thru it once. Im not a doctor or medical professional but I have seen thousands of different OC patients in my 5 1/2 years on the forum. My advice would be, you may only get one shot at taking care of this so hit it hard.

Best wishes with everything!!!

[quote=Kelly211]Don,

Did they biopsy your lungs? I had two spots show show on my lungs also (one on left, one on right). My ENT thought they showed cancer but the RO said they were the wrong shape. Did biopsy which showed inflamation. [/quote]
No biopsy of lungs. The PET-CT seemed to show the inconclusive spots, same as you one in left and one in right. I never heard anybody describe shape or such, just that from the scans the spots could be inflammation or C or ?

Hi Kelly,
From what I was told it seems that if cancer has gone Metastatic to lungs, then there is no cure and treatment is limited to controlling growth of those lung cancers without the possibility of killing them. However, I am very new to all of this so I could be way off base.

A FNA biposy was done directly from the neck mass but since there was much inflammation cells and not so many tissue cells, they did not want to go off that along. So, I went under general where they took a few tissue samples directly from throat and pathology on those confirmed SCC HPV+ and were consistent with what the FNA indicated.

[quote=PaulB]
Induction chemo has been around for a while. after the success of Cisplatin, and used mainly in organ preservation for larynx, hypopharyngeal, BOT cancer. I believe it was initially used just with PF, then Taxotere was added, and found to make it work better, and now is used with other induction combinations, including Erbitux. It is controversial, being it has a high rate of toxicities, which may delay the real curative treatment, which is radiation and surgery, and the possibly of too much chemo hampers tumor kill, but otherwise it is very effective for tumor control, distant metastases, but overall survival is not improved, in some studies, mainly done in the 80's-90's, and no real head to head comparison were completed yet with this vs chemoradiation, and some doctors are waiting for this, but others are using it outside clinical trials for treatment being it is effective.

There is also renewed interest witn Induction chemo with rise in HPV in HNC, which shows better response to treatments, plus these patient are younger, have less comorbities, and are able to handle a more aggressive treatment regimine. Dr Posner, now at Mt. Sinai, did a study with HPV pos vs non HPV, with induction chemo, and showed an improved response rate, and OS with HPV postive vs negative.

The NCCN added Induction Treatment to their Head and Neck Cancer Treatment Protocol for advanced Oropharyngeal cancer, and a lengthy discussion about It can be read. I think the link is posted here someplace. [/quote]
Yes, this is where I stand, in between a MO who recommends the induction before the main treatment, and the RO who feels it is still unproven (lack of definitive studies) and has fairly high risks, as you have experienced personally.

The MO follows the rationale that it can kill off all smaller distant cancers thus reducing recurrence, shrinks the main cancer making the main chemo-radio treatment work better, and the fact I am fairly young at 57 and in great health with no other issues, more able to hanlde the TPF side effects.

The HNC surgeon says take the most aggressive approach as this offers the best outcome, so am leaning that way but certainly not looking forward to entering ring with TPF. I've not read a single post saying TPF is a cakewalk.

[quote=ChristineB] Adding chemo to the radiation treatments will help the radiation be more effective.

... But since you are Stage IV, I would suggest doing the chemo. You want to hit it with everything you can to make sure you only go thru it once.

... My advice would be, you may only get one shot at taking care of this so hit it hard.[/quote]
These are the exact sentiments of the HNC surgeon and MO. Thanks for the perspective who has been most likely directly involved than many hands on practitioners.

It's not easy, and one of the hardest treatments they say to do. I was fine until I arrived home on the 6th day, and then went straight to the ER by ambulance. I was 48, exercised my whole life, and didn't think anything could knock me down, not even cancer. I was wrong, and this treatment wasn't for me, and went into septic shock, lost 100 pounds, plus a host of other illnesses, which hospitalized me for 6 month, paralyzed from waist down for 10 requiring to go to a nursing home, and now blind in one eye. Actually, I did not even know what chemo I was getting lol, but I'm still here 3 years later, and who knows what would have happened otherwise, and was not debilited by any surgeiries, except for the neck dissections. In retropsect, I would not do it again, and have not fully recovered yet, and my local oncologists, not my treatment doctor who I never went back too, said it was too much chemo. I know others who went though this with no problems, minus a hospitization or two lol, so everyone is different. Good luck with your decision. It's still good if you have choices.

[quote=PaulB]It's not easy, and one of the hardest treatments they say to do. I was fine until I arrived home on the 6th day, and then went straight to the ER by ambulance. I was 48, exercised my whole life, and didn't think anything could knock me down, not even cancer. I was wrong, and this treatment wasn't for me, and went into septic shock, lost 100 pounds, plus a host of other illnesses, which hospitalized me for 6 month, paralyzed from waist down for 10 requiring to go to a nursing home, and now blind in one eye. Actually, I did not even know what chemo I was getting lol, but I'm still here 3 years later, and who knows what would have happened otherwise, and was not debilited by any surgeiries, except for the neck dissections. In retropsect, I would not do it again, and have not fully recovered yet, and my local oncologists, not my treatment doctor who I never went back too, said it was too much chemo. I know others who went though this with no problems, minus a hospitization or two lol, so everyone is different. Good luck with your decision. It's still good if you have choices. [/quote]WHAT THE HELL! This is so far beyond anything I have read so far as a reaction to TPF induction. Especially for an otherwise healthy person and then within six days of starting TPF you go down this horrible path makes me really have to rethink blindly going "all in" on adding TPF to the sequence ahead of standard chemo-radio treatment.

Have you come across any other instance where someone had a reaction that in any way comes close to your experience? I have read about others who had to cut back on dosage or even quit the TPF regime and the typical nausea/vomit stuff. I did read about someone who lost 50% hearing and I do not know if that was permanent or temporary.

God bless you are alive my friend.

Don

Don't mean to deter you or anything, just telling what was my experience. I haven't heard of similar, and neither have any of my doctors. My current MO said he never heard of someone having a reaction like I did to induction chemo his whole career. Like mentioned, my case is probably rare, and most do fine.

Also, 10 percent or less of oropharyngeal SCC patients present with distant Metastases at diagnosis, so hopefully that's in your favor.

[quote]Also, 10 percent or less of oropharyngeal SCC patients present with distant Metastases at diagnosis, so hopefully that's in your favor.[/quote]Thanks for the insights Paul. There are likely some cases where there is some distant metastases but not detectable as in the case of small cancers too small to be picked up on PET-CT. And in some of these cases, cancer recurs.

The pro induction wisdom goes, blast all comers with induction, kill all the small stuff, and reduce the incidence of recurrence and suffer through the side effects.

As no definitive studies have confirmed this, I guess the medical professionals are still split on the efficacy. So, the decision is based some on less science than desirable. Oh well...

Thanks for the insights Paul

Don, Ive been on this forum for 5 1/2 years and seen 4000+ members join after I have. Paul is by far the worst case scenario of what can go wrong. I have never seen another member have this type of reaction. Not to discount that this can happen, of course it can but the odds are very slim. Please carefully weigh everything when making your treatment decisions. If you are having doubts about the treatment plan offered, go for a second opinion at another top cancer facility.

Hi, Don
if you google up something like 'tax 324 HPV positive' you will find a number of reports on this clinical trial, and speculation on the results; be sure to focus on the HPV+ results.

If you go with a standard CRT with cisplatin or carboplatin, you might enquire about an accelerated RT schedule. Again, much debate.


Whichever treatment you select, please do your very best (with nutrition and hydration) to stay on protocol. Once the RT starts, you want to do your level best to stay on schedule: it does make a difference.

I wish I had a time machine to lend you. If we could go ahead even a decade, we could have a better idea as to which therapy works the best.

Maria

Don,

As one who has suffered a recurrence I am a big advocate of hitting the cancer with everything you can the first time out. You do not want to fight this battle twice.

On the other hand I am also a big advocate of getting a second opinion (or even a third). Being located where you are is great in that you have a number of world class medical facilities available to you. I would recommend you get a second opinion from a CCC before making this decision.

Hi Don, I'm sorry you've got to go through all this, but go one step at a time and you'll manage fine. My brother had induction chemo, and coped very well. His most difficult time was towards the end (and just after) radiation treatment completed.
He was very conscientious about water and nutrition, drinking green tea, eating dark chocolate etc. I'm not saying some of these things helped clinically in any substantial way (apart from the water and calories which ARE CRITICAL), but at a time when he felt otherwise utterly powerless, it helped him emotionally to be following his health routines strictly.
Re the induction, who can say how you will manage it - I can only say we were surprised he coped as well as he did with it - he didn't feel a million bucks, but we were waiting for it to get very bad and it just didn't. I wish you the very best.

Hi Don. Welcome but sorry you have to be here. My husband was diagnosed 4 years ago next week with almost the same diagnosis. You can read my signature for the info. John had daily radiation and then Cisplatin every Friday for 7 weeks. John has some hearing loss from the Cisplatin but it didn't show up until his last treatment. These treatments are tough BUT you are tougher and will get through this. Continue to ask any and all questions. We like to help others.

Have any of your doctors suggested a PEG tube for nourishment and hydration? This is a sometimes "HOT" topic here but I see it as just another tool to get you through treatments. My husband insisted he wouldn't need one but thank God he got one. Even with the PEG he lost 30 lbs. Your body needs to be nourished and hydrated to get you through this. John started to use the PEG around week 3 and then had it removed around 6 weeks after treatments ended.

John made sure to swallow water every day since it is important as you can lose the ability if you don't continue to do so. Good luck as you start your journey. I know how totally overwhelming all this can be.

Don

We all have our own opinions on TX, usually based on what our doctors have told us. I doubt that any but a very small percentage of the OCF members have had induction chemo prior to TX and the few I've seen post have had a very hard time of it. My MO at the Georgetown CCC actively opposed any TX but concurrent radiation and chemotherapy. I asked this time again and he just said the studies are not there to show it's worth especially since there are reactions like Paul's.
Of course, he's now more cautious after being fooled by the initial glowing reports of Erbitux. He will not longer prescribe it for patients due to the high rate of recurrence he has seen at my CCC, such as I had.
I wanted to hit the cancer with the latest and greatest the first time around, so I actually asked for Erbitux. Bear in mind that the gold standard for treatment is IMRT and platinum chemo (cisplatin or carboplatin). Everything else, induction, other chemos, etc has not been proven to be better and they all have additional risks. Just my opinion, but why not get another doctor's opinion? DavidCPA, our super success story, went to 4 doctors before getting his successful TX of gold standard radiation and platinum.
My other advice is to get your blood work done and tested for your TSH (thryoid hormone) level NOW, before TX. It's amazing to me how many oncologists are simply clueless and ill informed about the need to have your TSH level the same after TX as it was before TX. Instead they unthinkingly accept the lab testing fiction that any TSH level between 0.4 and 4.0 (some even go as high as 5) is "normal" and okay. No scientific basis for that at all if you cross examine them. Even my CCC was very bad on this and I had to go see an endocrinologist who went to medical school in the 21st century. It's just checking off a box on the panel tests you are getting now. What is "normal" for one individual is not normal for another. So get your TSH number now.
Charm

WOW! What else can I say. Such positive, insightful, thoughtful, and empathetic responses.

My limited experience compared to folks like you all strongly suggest TPF side effects are generally manageable, maybe even less problematic than the standard CRT with platinum. If the frequency of nasty, long term, side effects was even reasonably probably it seems to me the medical community, being that it is on balance, very conservative, would have warning flags about it and the regime would not even have FDA certification.

Even though today I lean toward doing TPF induction sequence then CRT, the topic of second opinions often arises. This may sound elementary, just what is the definition of second opinion?

I guess I feel I have "second" opinions at hand. I am VERY VERY lucky to have a HNC surgeon who received a fellowship at MSKCC in head neck cancer not all that long ago, so that alone offers me extreme comfort. His parting words at the initial consult was be aggressive! The MO seems quite competent and after thoughtful and careful study of my case, suggests the induction due to the length of time the cancer has been there, migrated to lymph nodeS, the spots in the lungs on the PET-CT, and the potential for loose but undetected cancers. The RO is the one who presented the alternate position - induction studies are not complete and side effects can impact the main CRT series, so his position is to be more conservative and pass on induction.

My very long time primary, who I do not see now (insurance related), called me last night to check on me, and her words echo many - get aggressive and go after all the cancer the first time leaving the lowest potential for recurrence. I'm sounding like a broken record.

All my doctors are actually associated with different hospitals (insurance) and doctor groups; collectively comprising an enormous library of experiences that checks the "second opinion" box for me.

Finally, my case goes to a tumor board next week so there are other numerous professionals that will weigh in. Never been to a cancer tumor board before, thank God.

Living in a metro area of 6 million plus people offers many excellent choices and very good quality choices including world class centers of excellence. The centers I go to are large, well equipped, handle high volumes of cases, and staffed with many professional with vast and differing backgrounds and experiences. This seems like another inherent source of "second opinions.

Obviously, my confidence level is pretty solid with the resources currently available to me

Am I missing something?

The only other option might be to seek out opinions from the other two local main research CC nearby: Stanford Cancer Institute and UCSF Cancer Center. I do not think those are options (insurance); although, I have not explicitly inquired as yet and hear the clock ticking louder each day to get some treatment going and arranging these alternate reviews is going to take time, even if they can be contracted.


Thanks
Don

Don,

This is such a tough time for you and your family, I am sure. I know, emotionally it was the hardest for me..that time between diagnosis and treatment when you are making life and death decisions between a miriad of options and approaches. I feel your pain, believe me.

I guess the question you have to ask yourself is, "Have I done all I can to answer the what ifs to the extent that I can." If you are comfortable with the answer, then make your decision and go with it.

Bill had a similar tumor and dx but with no nodal involvement. We were not offered induction chemo..just a very aggressive radiation schedule (hyperfractionated...2x day) and a weekly chemo (see siggie.) This was by a comprehensive cancer center - Moffitt in Tampa Florida.

I note that you mention a tooth needing to be pulled yet in your signature. I think you are already aware that that needs to happen before your treatment starts..right?

Sorry we are all giving you different approaches, I know it would be easier if there was one simple answer. Good luck with all of this. You will feel better (at least mentally) once you make that decision and get going with treatment.

Deb

Here is a list of the country's top cancer centers. This should help you if you choose to look into a second opinion. A second opinion means going to a completely separate hospital, one that is not affiliated with the one you currently have gotten your opinion and treatment plan from.

NCI Cancer Centers

I know it may not be convenient but some patients will travel to get the very best medical care from the country's top doctors and cancer centers. There are even airlines which will give discounted or free flights. Several major cancer centers have special facilities nearby for patients to stay for free or very low cost (like $5 or $10 a day). So dont rule out places like MD Anderson (TX), Sloan Kettering (NY) or Johns Hopkins (MD) just because of distance. Think of it this way, you may have only one shot at getting rid of the cancer so you would want to pick the most experienced team who can provide you with the best medical care.

Don,

See my Signature Line. BTW I'm still posting...lol

Thanks David,

Exactly. That is one reason there is no determination on the efficacy of induction sequential to CRT. Many do fine without it, the question remains how many more can benefit from doing induction.

So glad to hear you are enjoying life, I am sure every day you feel is a gift.

Don

Christine,

Thanks for the link. I am fortunate that three of the main centers are within 70 miles so all easy drives. The issue I need to look into is how to request and obtain approval for second opinions outside my insurance system. Guess that will be on the list for tomorrow.

Thanks
Don

[quote]I note that you mention a tooth needing to be pulled yet in your signature. I think you are already aware that that needs to happen before your treatment starts..right?[/quote]Yes, I had one pulled and it is fully healed. The dentist wanted to pull a second one at the same time and I was just freaking out about getting any pulled. So I made a second appointment to get the first one pulled. I just decided to get the second one pulled this week as it seems the path with the lowest potential for affecting the main treatment regimes.

I have at least a week of slack so I need to get on it soon but who wants to get teeth yanked. oh well, I am sure this is just the beginning of making unpleasant decisions.

And you are correct, that each person needs to feel they are making as informed a decision based on their own health diagnosis and factors, and the time and resources available to them to conduct their own research and due diligence.

I'm close - for me the only really open issue is that I need to satisfy myself that the induction side effects are worth the known and potential benefits.

The balance on the scale seems pretty clear - kill more cancer and make CRT less invasive vs longer treatment plan and side effects from induction and potential impact to the main CRT plan.

Thanks again
Don

Check into the Fluoride trays. Most of us used them throughout Tx. I used them every night for almost 5 years POST Tx.

Hi Don,
The one thing I didn't mention in the PM is that Kevin did, indeed, lose some of his hearing. Just wanted you to know.
He also lost 56 pounds, so the PEG isn't a bad idea. Although he didn't choose to use it for much more than medicines. He drank Ensure when the eggs wouldn't go down anymore!
Kathy

Hi Don,

I was recently diagnosed with tongue cancer and I live near you in the Bay Area. I live in Dublin, CA and am seeing an ENT surgeon at Kaiser in Walnut Creek. He is supposed to be one of the best. I just wanted to check in with you and see where you are going to since we both live in the East Bay. I haven't had my surgery yet but I'm optimistic it will be just that without follow up radiation or chemo.

Hi Gina,

I have been reading your story. Sounds like your surgery is coming soon and the plan is that surgery is the main course of treatment and no chemo or radiation. That makes life much easier for you.

I'm in Lamorinda area, about 6 miles west of WC Kaiser. My son goes there, I picked up a prescription there last night, but I get most treatment and care via John Muir.

We are fortunate to live in such a large metro area as there are so many good choices close by. Some folks here are a long way from specialty care and may have to travel to another state and stay for periods of time.

Be well and stay positive!
Don

Hello OCF,

I started a blog site early on to have a record for myself of the details of my war with cancer. It seems coherent enough now so I invite you folks to join the site and read my detail postings.

The site is totally private, nobody sees anything unless you register and it is a read only site so nobody can post for anyone else to see. If you want to view my blog, please send me a PM and I will give you the info how to check it out. Feel free to send me suggestions there or here.



Thanks
Don

My boyfriend did injunctive chemo. He is 50 and very healthy. He was stage 4 but, it was only in one lymph and very defined. Was growing fast but, not spreading. We had planned originally on surgery but, after going around and researching everything, even a crazy asian/holistic medicine guy in Honolulu and meeting for pre-op with the surgeon, we determined that surgery didn't change his survival or treatment plan and would only postpone that actual treatment that much longer. Afer the 3 treatments of chemo, 1 week on 2 weeks off, he has a clean PET scan. Just starting radiation now to get all the micro cells and get it out! He tolerated the chemo pretty well I'd say. He had a few bad days after treatment was done but, was riding his bike 6 miles a day and playing tennis by the time treatment came around again. Everyone is different that's what I keep finding out. Ask every question you can think of. There are no dumb questions! Its your body and your life, do what feels right to you even when it's scary as hell!

Take care!