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.