Hello everyone unfortunately joining a great group of people fna done mar 11 12 negative cyst removed dec 04 pathology came back poss HPV cancer dec17 now waiting for rad jan 31 I guess I am on same bus as many of you doctors suggested no chemo because of HPV strain 16. Any suggestions thank you

Hello Doolittle, Sorry you have to join us.
While it is correct that HPV +ve SCC responds very well to Radiation, I personally would also opt to have the chemo with it. Chemo improves your chance of no reoccurrence by 10 - 20%.
This is an aggressive cancer and I would hit it with everything in the arsenal.
Have you had a second opinion from anywhere ?
Was your treatment plan devised /discussed by a tumour board?
I'm sure others will chime in shortly.
Best of luck,
Tammy

Sorry for your diagnosis, but welcome. Where is your primary, TNM grading..Tumor, Nodes, Metasteses. No chemo can be debatable, and many other factors are involved, but there is thought by some doctors of deescalation of HPV positive tumor in Head and Neck cancer treatment, and there are studies being done with that. HPV positive is shown to very responsive to radiation, with chemoradiation even better, and has better prognosis than HPV negative, but there is still no 100 percent cure rate, even with HPV. The majority of results with HPV positive treatments were done with the same treatments given for HPV negative tumors. It's unknown what the long term results are with lesser treatments. Other factors come into play such as Stage, tumor size, grade, local regional metasteses, distant metastases, overall health, underlying medical conditions, and a patients request having chemo or not. Maybe you have all that info, including results from any other scans like CT, MRI and or PET/CT. You basically have one shot at curing this, and should give it your best. Good luck with everything.

Welcome to OCF! Sorry you have joined this group but glad you have found it. You are among friends and will get lots of support and info here.

I would suggest you eat everything you want. Dont worry about weight gain, even have desserts. Your sense of taste and swallowing will be off for a while so eat everything now so you dont have regrets.

Get a full blood test including thyroid count.

Get your teeth checked out by a dentist familiar with treating oral cancer patients. Any lose or questionable teeth need to be pulled now. Have flouride trays made and get prescription floride gel ready for when you begin treatments.

Get yourself a network of helpers. The more the better. Anyone who offers their help, take their name and number and let them know when the time comes you will contact them.

Always take an extra set of ears with you to doctor appointments. Write everything down. Take a biz card from each doctor and staple them onto the back of a small notebook so they are all in one place. This will help a caregiver if they would need to call one in an emergency.

Im sure there are many other tips that other members will help you with. For now read and educate yourself. An informed patient is their own best advocate.

Best wishes!!!

Welcome to the bus nobody really wants to ride. But we are a close and friendly bunch. I'm new but from everything I read concurrent chemo and radiation provides better outcomes. The platinum based chemo improves the effectiveness of the radiation.

And I never read yet that having the cancer HPV+ was a reason to not include chemo with the radiation.

I would surely do more research, get better informed, and ask some probing questions to get better answers why your treatment is not CRT rather than RT.
Don

Here are a few aticles, the first three from frm same study, done with HPV treatment in H&N cancer with no chemotherapy. The last study, one which had no chemo, may not have been separated as HPV or non HPV, but most likley did contain HPV postive patients.

http://www.eurekalert.org/pub_releases/2012-05/esfr-htc050812.php

http://www.chemotherapyadvisor.com/...in-oropharyngeal-cancer/article/240731/#

http://www.dental-tribune.com/artic...ncer_treatment_without_chemotherapy.html

http://www.medicalnewstoday.com/articles/245400.php

http://www.ncbi.nlm.nih.gov/pubmed/22261362

Doolittle - I'll add my small welcome and full support. The posters above are some of the most knowledgeable folks here and have all given you great advice.

My thoughts are with you as you begin the journey. I know you'll get through it!

Ditto what everyone else said and welcome!!

Doolittle,

After just gone through treatment. Rad is by far the worst part. Chemo sucks but in comparison it is nothing. And if it get you 20% reduction in reoccurance, that's a no brainer. Go for weekly Cisplatin. Weekly is easier than the three big bag methode.

That's my take.

After rereading OP, I am not sure what he means by "no chemo". I can understand this if it means no induction chemo either sequential then CRT, slit, or post CRT. If he means no chemo as part of radiation, that does not sound right. The Lassen study at DAHANCA even uses a "Chemo" for the standard reason of making the rad work better.

[quote]Lassen and her colleagues investigated the outcomes of 181 patients on the Danish Head and Neck Cancer Group (DAHANCA) database who were treated between 1992 and 2005 for advanced oropharyngeal cancer�cancer that has spread from the primary site to lymph nodes and beyond. The patients received accelerated radiotherapy (six fractions of radiation over five days in order to reduce the overall length of treatment) together with Nimorazole, an agent that acts as a radiotherapy sensitiser, making cancer cells more receptive to the effects of radiation. No chemotherapy was given. Samples of tumour tissue were analysed to establish HPV status. [/quote]
Seems like this drug is used because of accellerated deliver of rads. who knows, getting way over my med tech knowledge. :-)
[quote]Abstract
BACKGROUND AND PURPOSE:
Causes of failure of radiotherapy in squamous cell carcinoma of the head and neck probably include repopulation and hypoxia. Very accelerated schedules such as continuous hyperfractionated accelerated radiation therapy (CHART) overcome the repopulation problem but allow limited time for reoxygenation, so a hypoxic-cell sensitizer may be especially beneficial. Nimorazole is the only such agent to have shown a significant effect in a randomized controlled trial in head and neck cancer. Accordingly we studied the combination of CHART and nimorazole.
[/quote]

Nimorazole is basically an antimicobial, to treat cettain infections, and is not a chemo, it was used as a radiosensitizer in the study.

Also, for small T1 or T2 tumors, surgery or radiation is often done alone, wether HPV postive or negative, and some doctors feel it's unnecessary to give chemo or even chemoradiation if surgery is done, and is often the preferred method.

There is a radomozed study with radiation with and without Cetuximad (Erbitux), which is a monoclonal antibody, in patients who had surgery for locallly advanced Head and Neck cancer. One of the secondary objectives, is to anyalze HPV in subset of oropharyngeal patients, and to perform exploratory anyalsis of the impact of HPV in DFS and OS.

A patient's condition, also factors in if chemo will be given with radiation, even with being HPV positive. I was never tested for HPV in 2009, and most likly it is being a non-smoker, casual drinker, at 48, and my oncologist would not give me chemo with radiation in 2010 after a recurrence,due to my body, not being able to handle it, saying it would kill me.

There is more talks about treatment de-esculation being HPV positive with less radiation, less chemo, being it is so responsive.

These are just some examples that chemo therapy is not always given with radiation, including with HPV positive patients. Future studies, and long term results will prove it's effacy.

Received same direction from UCSF's Helen Diller Cancer Center; I am 24 months out from Stage lV, HPV 16, chance of recurrence low single digit at this point. BTW Newbie, congrats; this is my first post :-) I will remember you always!!!!!

What do you mean expressly by "one shot to cure this"? Sorry to be naive Paul but this frightened me some; chemo was never an option offered and I didn't know to inquire/insist. Sounds dumb I know, but there you have it.

"You have one shot at curing this, and should give it your best" is a generalized statement, factual, and meant to alert, that after your initial treatment with surgery, chemo and radiation or whatever treatment combination you have, if there is a recurrence, it is more difficult to treat the 2nd time around for many reasons, and sometime it may not be treatable, but each cancer is different, so is the location, involvement, TNM staging, initial treatment, the patient, age, health, as well as the doctor's experience, and many other factors, that are taken into consideration, so it's not directed at any individual, and no one has a crystal ball, not even the doctors, but that everyone should consider all treatment options offered, and available to them, sometimes even at another institution, and to put your heart into it like your life depended in it! Most CCC consider the guidelines by the NCCN, have up-to-date treatments, top doctors, training, but everywhere else, I'm not too sure, and each patient is a co-contributor to his or her own health care, not just the doctors.

There are many here who have had more than one recurrences, and were treated successfully, including myself 5x. If I could go back, would I change some aspects, yes, but I did not have this or any other sight to go to to see what others have done, and suggest. I just post to try to help others with my experience or lack of experience, mistakes I made, and share information I gathered for the past three years, and I've been to hell and back.

Anyway, if chemo was not offered to you, your doctors probably felt it was not necessary, and treatable with Surgery and Radiation alone, which is the only thing that cures HNSCC. I see you went to UCSF, which has one of the best ENT programs in the country, and can be assured you received the best care. You are two years out of treatment, and most recurrences occur within the first year.

In hope this answers your question, be well.

paul said it all very well. i'd like add just about everyone who knows cancers has clearly stated to me, "be aggressive".
Meaning the goal is to kill it first time around with as many options that can help, even if the entire treatment regime makes you wish you were dead.

Treating recurrences are often complicated by prior treatment so options are more limited than treating a "virgin" cancer patient.

Hi! I also had the same as you, my oncologist said my tumor was extremely small and no spread so the risks of chemo outweighed the benefits. But in saying that I'm sitting here waiting on biopsy results of some abnormal thickening on my tongue but could also be due to the radiation.... So time will tell! Good luck on your journey, I'm only new here myself but have found it to be such a great site with extremely helpful people all on this roller coaster.

Oh and i checked out those links and they are a great resource thanks Paul!

While Paul did dial back his "one shot to cure this" story,and he made very good points and gave excellent advice on treatment, it does not change the fact that it's just an "old oncologist's tale". It's often repeated because it used to be true, but it's not true anymore. Literally, it is not true but a falsehood in the 21st Century. It's not "generally" true or any other kind of true for oral cancer.
Yes, it's good to be aggressive. Yes it is better to do more rather than less in order to not have a recurrence. But not because recurrences are fatal. But I do not see how it helps to repeat scary stories that are not true. There are plenty of reasons to do whatever it takes, but false fears should not be one of them IMO.
I've seen too many posters here all worried because their out of date radiologists have told them they could never have any more radiation or chemo after the first time.
Charm

Realistically speaking... does anyone out there want to face this again? Taking a minimalists approach to treatment has backfired on far too many people to blow it off. Sometimes it's not even the patient's fault. A dr. makes that decision for them. For example with Chemo no being offered in conjunction with rads. I get that it sucks, it's horrible and makes the treatment even more unbearable. BUT aside from chemo being systemic, and having the power to kill a stray ca cell that may have traveled outside the radiation area, it also sensitizes the tumor and any other cells inside the radiation area. While a dr. may consider that they are giving you a break by not throwing chemo into the fray. Personally I would prefer to have the treatment and suffer a little more (or a lot depending on the individual) than have a recurrence at a later date and time.

Also it is very true that post treatment - if you have a recurrence it is harder to treat - (though I do agree totally with Charm's point that in this day and age that it is not necessarily deadly - though it can be) this is often because your choices may be fewer, and the treatment more damaging.

ie: a second round of rads that takes your ability to swallow. A spread that requires salvage surgery that may take your tongue, larynx, voice box, jaw etc.... not deadly but definitely something that affects quality of life.
Mind you three time recurrences survivors do happen - even five time - Paul, Christine, Kelly, and Charm are all prime examples of this. But not everyone gets that opportunity. I think the numbers of multiple recurrence survivors are much fewer that those that didn't beat it second or third time round.

So IMHO it is necessary to do what you can to get it first time out. (this includes educating yourself so you can ask the drs. WHY? or WHY not?)

And for some drs. knowing you want it treated aggressively makes a difference. for example. I asked my rads dr. during the first week of rads how my post of head ct looked. He said it was a baseline scan so it didn't matter. Now that question forced him to look at it - he sent a student out who must have noticed something because the next day he called me back to tell me he was rewriting my program to include the left side because a small 3mm node had highlighted on the opposite side from my surgery and original tumor, and while it could be something unimportant (inflammation etc...) he knew I wanted this treated aggressively so he was going to include that side of my neck as well.

Most people who were here a while ago will remember Eliza. She had a tumor on her cheek removed - and 18 nodes in her neck - all were negative (the standard is usually above 30). Was sent home as per her dr. and told she needed no follow up treatment.
A while later she felt a node pop up in her neck.. went back. They removed another 20 nodes - all of them tested positive for cancer.
From that point on they operated, radiated, and gave her chemo, they got rid of the cancer in her head and neck but by that time it had spread to her ribs, and vertebrae.

If from the outset she'd received chemo, and rads - (which would have been to her neck and mouth) I truly believe she would still be with us.

Nothing is ever 100%. even getting the full gamut of treatment doesn't guarantee no recurrence. Just as some people here have been very fortunate to walk away with a surgery and no rads and chemo. (I think this very much has to do with the initial aggressiveness of the cancer and how long it has been there)

But I do firmly believe that going at this disease with both barrels the first time out definitely saves lives.

Play nice gentlemen

I was diagnosed as stage I to the soft palet. I was told I would only need radiation. At the time I felt I had doged a bullet by not having to go through chemo. Skip forward two years and I present with a tumor in a lymph node in the neck. I am pretty sure a single errant cell had gotten away and lodged here as nodes ore not primary tumor sites. I also feel I may have avoided all the reccurance nightmares if I had insisted on chemo from the start.

Of course I am jaded and my advise should be taken with a grain of salt.

[quote]Realistically speaking... does anyone out there want to face this again? Taking a minimalists approach to treatment has backfired on far too many people to blow it off. Sometimes it's not even the patient's fault. A dr. makes that decision for them. For example with Chemo no being offered in conjunction with rads.[/quote]
Decisions are not totally left into the hands of your doctors. You have a say, at a minimum you can influence the decision.

Because, once I found out I have cancer, I have been most active in seeking information, diagnostic protocols, treatment options, and inventorying the numerous side effects, all variables of YOUR formula for YOUR plan.

Both the MO and Surgeon were fully on-board with treating aggressively in my case. However, due to Mx based on undetermined spots on my lungs, the tumor board had to concur to go at it all guns blazing. I started making calls about how to attend the tumor board meeting. Mind you I did not even know such a thing existed and then later find out rarely do patients attend. After being told by one tumor board registrar patients are not allowed, I went another route and got a "sure you can attend" answer.

Although attending the meeting felt a bit overwhelming, knowing 16+ doctors are making decisions that affect your life, I and my wife sat in and listened to the discussion, much of which flew over our heads.

However I could clearly see their heartfelt concern as me as a person not some name on a page and several times, prompted by a comment, they looked my way. The fact that I am very healthy and young gave them much more confidence that I can endure the extra treatments and it was reasonable to concur with the recommended treatment plan presented by my MO.

I have no facts to state that my presence at the tumor board helped lobby the more aggressive plan but I have to believe based on what I say and heard it certainly did not hurt. And the kind smiles as I departed will never leave my mind.

Don

[quote=Kelly211]I was diagnosed as stage I to the soft palet. I was told I would only need radiation. At the time I felt I had doged a bullet by not having to go through chemo. Skip forward two years and I present with a tumor in a lymph node in the neck. I am pretty sure a single errant cell had gotten away and lodged here as nodes ore not primary tumor sites. I also feel I may have avoided all the reccurance nightmares if I had insisted on chemo from the start.

Of course I am jaded and my advise should be taken with a grain of salt. [/quote]
So sorry to hear about the recurrence Kelly.

But that is exactly one of the reasons my MO pushed not only for concurrent chemo during radiation but also including a full series of induction chemo up front. Based on my case, he feels that there can be loose cancers running around undetected much less the spots on the lungs so he wants to do as much as he can to kill any of the buggers hiding out now.

Wish you well
Don

I have no problem with people deciding they want to have the most aggressive TX possible. I do have a problem, which I expressed quite clearly and forcibly, with stating that there is new patients have "only one shot at curing " oral cancer. I can not stop people from conflating the two. Conflation is one of the most prominent logical fallacies and this board is no exception.
I like Cheryl, I like Paul, I like DonFoo. They are all fine people. But there is enough pressure on newbies without stating that unless they get the cancer the very first time, then they have no other shot at curing it. Unless of course you subscribe to the Humpty Dumpty school of thought:
[quote]When I use a word," Humpty Dumpty said, in a rather scornful tone, "it means just what I choose it to mean - neither more nor less."The question is," said Alice, "whether you can make words mean so many different things."
[/quote]
In my not so humble opinion, sometimes people do too much. They has been lots of speculation already that HPV patients may need LESS radiation or LESS chemo to achieve the same results. .
It's fine to disagree on tactics. But its scary enough for newbies to usually get greeted by people with recurrences, let alone to start implying that there is only one shot at curing it and if you do not get it right the first time, then you have no other shot. Under that theory, I would have been dead 4 years ago. You need only look at the changes in treating breast cancer and cardiac problems to see how super aggressive TX may not be necessary or advisable.
while I understand why proponents of do whatever and as much as you can would want to state that there is only one shot, I will continue to object when that happens. As long time readers know, IMO it's more important to play FAIR and TRUTHFULLY then NICE.
Charm

AND....with all that said Welcome Doolittle!!! I head up North to BC a lot and I know you'll get great care. You too can beat this thing! - K

Hey,

I like Charm too. :-) And do VERY MUCH appreciate having a more balanced and more faceted opinions and experiences offered here. Having exposure to more options can only be helpful, if nothing more, educational. Ultimately, it is the patient and those trusted to make the critical analysis and decisions.

Of course, if you of all ppl,as well as PaulB, Christine and others who experienced recurrence had been offered more aggressive options and felt strongly of improved CR, and knew all the issues associated with recurrence would have at least given it serious consideration, if not, proceed that way.

As to any peer review published findings on HPV+ OC response vs non-HPV+ strains, there are none yet. There must be some trials but at this point any results would be classified as anecdotal. So the question becomes how much is one willing to gamble their live with something that is not stamped standard of care.

When I asked my surgeon about trials, his quip was they primarily are done to seek the balance of best outcomes with the least side effects. I like you, have a strong hunch that down the road definitive studies will find that HPV+ strains of OC can be treated with less but equally or even better outcomes.

However, until this is proven, I guess I am playing it safe and have rationalized the potential of increased short and long tern side effects more than offset all the issues related to recurrences.

That said, each person needs to make as informed decision for themselves and the more lively yet respectful opinions get posted the better.

Don

Donfoo

Hey, No argument from me on what you posted. Better safe than sorry is a valid approach that does not need made up justifications. I've said my piece on the "one shot to be cured" canard. Do I wish it had been "only one shot to avoid a recurrence" Obviously. Who cares? Again, obviously me..
I loved your direct question to those of us with a recurrence. Good style. My reply
Long Answer" Knowing what I know now, I would have still not done induction therapy, nor anything aggressive but instead done the gold standard. IMRT and platinum chemo. Instead I choose what was considered the miracle drug: Erbitux which did nothing for me.
(some indications it does not play well with HPV+, including my RO refusing to prescribe it anymore for BOT patients based on recurrences in myself and other patients. No conclusive studies nor peer reviewed ones so just my opinion at this point)
Short answer: I would have played it even safer, using only what fully vetted clinical trials showed worked - the proven Gold standard of IMRT & platinum chemo.
Caveat: While I was in great shape, I was 60 when diagnosed.
Not as strong as when I was 50, let alone magnificent at 40.
If I had been as young as many of the new OCF posters, my choices may well have been different.
Charm

Charm,

You are blowing this phrase out of proportion, even after I was kind enough to explain the often quoted phrase in a subsequent post, and you keep quoting me out of context also. What I said as a sign off to a paragraph answering the poster's question about chemo was, "You basically have one shot at curing this, and should give it your best." BASICALLY, meaning for the most part, in essence, fundamentally, and did not say, as you menton, "Unless they get the cancer the very first time, then they have no other shot at curing this" and "Only one shot at curing this" amongst others. Do I believe, and I know first hand with 5 different treatments, that recurrences may be treatable, but there are other factors involved, and sometimes they may not be able, can be more difficult to treat the 2nd time, and patients may have lesser options, loss of QOL, etc., but this was not the answer to the question, just a salutation to the poster, but an important one, and I should not have to write a book to explain every single word, which would need to be written by a doctor, which I'm not, and that does not seem to satisfy you.

From your responses, you are implying that recurrences are always curable, and are underplaying the importance of the initial treatment to "newbies" with you being the prime example, which is a falsehood, and scary for one to believe.

Don't get me started with your PET scan scary stories, aka PSSS lol.

Don,

I was offered, and accepted the same aggressive and structure sparing treatment you are getting, but in 2009, in lieu of major surgery, which was 3 cycles of TPF Induction Chemo, followed by 7 weeks chemoradiation, which was probably when one of the clinical trials was being done or soon after for Oropharyngeal cancer. There is more research being done now with recurrences even in spite of the best care, which may be that certain cells are programmed to metastasize regionally, and some distant, in some patients, and theory about H&N cancer stem cells, or cancer like stem cells that are resistant to CRT, plus others. I hope they come up with something or the right combination soon, but will mostly likely take time.

Paul

Like in Casablanca, I'm sure that regular OCF readers are shocked, shocked, shocked that any of my posts are deemed an over reaction. I can't help but admire your clever PSSS acronym. This reply of yours makes clear and explicit the context and implications of your "salutation", which does satisfy me (unlike the equally clever "?").
Your new cyber look is interesting: I've worried about scaring new comers with the laundry list of TX and recurrences, but I had not considered just deleting my signature line entirely as you have done (unless this is temporary while a revised one is under construction. Plus as a Beatles fan, I like your "nowhere man" edit on your profile. Seems I'm not the only contrarian on OCF (as the importance of a signature line is often touted here)
Seriously, thank you for taking the time to spell it out for me in your post plus having the patience to deal reasonably with my own rhetorical excesses.
Charm
.

Hey Doolittle

Okay, 4 pages into your intial thread, I want to apologize to you directly for "hijacking" your thread.
I hope your radiation on Jan 31 goes well. Please let us know how you are doing. Just open a new thread on your radiation and I promise I will only post relevant things to your particular issue.
On the plus side, you have seen the full debate on how aggressive TX should be. In rereading all the posts, the consensus is that we would do chemo as well as the radiation as our choice, which is what you asked about in your one and only post so far. The radiation only approach did not seem to garner any votes, but then I did "misread" some comments.
Charm

I responded with more than just a ?, but decided to delete it due to being inappropriate, but couldn't take the post out completely, and backspaced on edit. I guess I was hijacking the thread also, and apologize also. I put my signature back too, which hopefully the only thing to add is NED lol.

Wow, this was an Epic thread. This should mke the OCF Hall of Fame.

Paul

And here I thought that your solitary "?" was a brilliant yet infuriating blowoff in the nature of a demurrer (a legal term for when a defendant responds: "So what?" to the pleading). I loved to file them back in the day. How perfect I thought; I need to remember that for future use.
For what it's worth, once I finally got my fentanyl and hydrocodone dosages correct (too little, too much this week) I attempted to massively edit my two posts, but the 6 hour window for editing was gone. Glad we resolved this.
Plus I see your location and signature are now back to normal. It's sort of weird how all our prior posts change so as to have current signature even when appended to a post years ago before I had even one recurrence. Little did I know then just how long and hard this journey was going to be. You are good company to make it with. I hope you can add NED soon to that signature line.
Charm

Thanks Charm and for explaining the ? If ever presented before a judge, I will use that instead of pleading the 5th lol.

man. this place is getting all slobbery with all them hugs and kisses. xoxox

I have deleted the ? post. It served no purpose on the forum. Paul, next time if you run into difficulties, please PM me. I could have deleted the post back when it first happened.

PLEASE....lets allow our new member Doolittle to have his thread. I notice he has not posted again. How about instead of hijacking the people who are having a discussion take it off the forum and discuss it thru PMs. Spats give newer members the wrong impression about the forum and are not helpful to anyone.

Thanks!

Holy should check site more frequently lol am still working so have been off for a couple days thanks for all the responses have read and reread, my pet scan came back small activity in bot no activity elsewhere I meet with docs before rads and will discuss forum suggestions thank you. As I am in good health (besides the big c) I am sure I could handle both barrels, my rad doc (top doc in clinic they say) and the medical oncologist which he called the chemo doc both recommended no chemo things may have changed since pet scan though as they may do a biop of tonsil, not sure if they seen something there or want to rule out for rads in that location. I will try and pay attention more now that I am taking a holiday I prefer cooking the outside instead of the inside on holidays btw...no prob on the hijack always interesting reading..ken

Thanks for your understanding Ken!!!! I was concerned you had been scared away. This board has some very passionate members who all have the patients best interests in mind. We have walked this road and know all the bumps. Its hard to watch others go down the same path without offering our help. Everyone is an individual and will respond a little differently to everything, treatments, medications etc.

Wishing you all the best with everything!!!