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Dear Friends,

I have been watching this site for a few weeks, although I didn't find it until months after I was diagnosed and treated. I was diagnosed in early January with Stage IV SCC of the base of the tongue, with extensive left side node involvement. I am being treated at the Kellogg Cancer Center, which is part of Northwestern University. I am also a medical health professional, a medical research administrator who works (ed?) for a large medical research and program development non profit affiliated with the public hospital system in Chicago. I have also been a member of an IRB, the hospital-based body that reviews human subject protocols for protection of the subject's rights for the past thirty years. Ironically, I have been the primary reviewer on several late stage head and neck protocols, some of which I think some of you must be on. My purpose on that committee is to review the protocols as a non-scientific member. Most importantly, answering the question as to whether or not the informed consent document is intelligible to patients.

My treatment is through a University of Chicago national protocol, nicknamed the Dignity Trial for locally advanced SCC of the oropharynx, Stage III-IV. (where do they come up with these stupid names? Dignity, blue gloves poking around your tongue constantly? I don't think so.) In this trial there are two arms: The study arm is a 3 week pre-treatment trial of chemo followed by five every other week cycles of chemo (5FU, hydroxyurea and taxotere)+ 20 bid radiation sessions. Then the patient is re-evaluated for surgery as necessary. The control arm does not include the induction chemo.

I volunteered for the trial for a number of reasons, most importantly I believe in the importance of research in order to advance treatment. When I first started doing this stuff thirty years ago most children with ALL died, most women with Stage I or II breast cancer died. Now, the reverse is true. There is real progress to be made, but I don't have to preach to this choir that it takes real people to participate.

So, when I enrolled, I was randomized to the control arm. Treatment began 2-12-07 and continued through 4-13-7. Judging from your posts, I was remarkably lucky with the effects of the treatment. I had no nausea, my hair did fall out completely. I did have and continue to have tremendous mouth sores, lost all ability to taste, lost my voice and suffered greatly from fatigue. Most importantly, in spite of the very early decision to use a PEG, I continue to lose weight. Is there anyone else in the group on this trial? What has your experience been?

The oncologist and RO have been remarkable and remarkably sensitive to try to control pain, nausea and anxiety aggressively. I resisted their efforts for about thirty seconds and then realized that, in this situation, there really is better living through chemistry. Their team also includes oncologic dentistry, nutrition, as well as physical and occupational therapies. These adjunctive services have been useful and supportive. So, for example, I was being taught massage for lymphadema almost before the staples were out.

After the chemoradiation was finished there was an eight week hiatus for the tissues to calm down before they could make whatever decisions were to be made about surgery. Finally, they did it in two stages: another biopsy of the tongue to determine if they needed to do a glossectory at some level or not. When that proved negative, they did a modified radical dissection of the nodes of the neck on the left side, sparing virtually all of the organs, except removing 42 lymph nodes, all of which proved to be negative.

So here I am sixteen weeks post treatment and 4 weeks post surgery with a remarkably good result and still feeling like a wreck. I can't eat anything, my mouth blooms new and very intense sores every day, I am still dragging around and all the medical news is great. The irony of the situation is intense. I am tired of complaining about it and all its very unpleasant effects--the dry mouth, the difficult swallowing, the pain, the lack of taste, etc. In the past couple of weeks I have developed a cervical effect which causes a mild electric shock sensation to radiate down my body when I move a certain way. When it is bad it affects my gait. The oncologist says it is a late radiation effect. Are there others? I know that radiation is powerful, but sixteen weeks later the stuff is still showing up. I am particularly bothered and upset by the lack of return of taste, since I am a passionate and gifted amateur cook. Through the whole time of treatment, I have continued to cook, using smell alone. This method works pretty well, but of course I cannot get the subtle adjustments of flavor at the end of a dish that make it all the most satisfying. I fear that I never will, especially since much of the most useful kinds of flavor enhancers (like lime, for instance) are also highly acidic. Even smelling lime essence is painful, since the oils are so volatile. Are there cooks out there who have recovered enough taste to make cooking fun again?

So my questions for the group focus around several issues: one is about research, one is about post treatment recovery and the third is collective and individual activism.

Is anyone else on the Dignity Trial and if so, which arm and how has it gone? I have heard several of you make reference to an MD Anderson trial, can you tell me in detail what that is?
I was profoundly impressed by the recent discussion of HPV and the utility or lack thereof of Gardisil. Does anyone know who is doing genetic research? Has there been a patient survey on the site about familial history with oral cancer? What are the details about the 4,000+ members of the patient forum. From reading the posts many of the people who sign in the stage of diagnosis seems to be Stage IV for tongue and tonsil, most commonly. Is this true in fact? Based on my knowledge of cancer data in Illinois, this is remarkable. Even among very poor people who have chronically poor access to health care, the stage at presentation for breast and prostate cancer is Stage II-III. Of course this is bad enough, but nothing like the boat that we all seem to be floating in.

I have similar questions about the surgical intervention, mostly based on my experience with breast cancer treatment. We all watched while surgery became less and less invasive with little or no compromise in effect: from radical mastectomy to modified radical to lumpectomy. And of course from node dissection with its accompanying unpleansantness to sentinel node dissection. Is there a similar movement here. Now that I am left with a fool long scar and adhesions, I am wondering if anyone is looking at sentinel node dissection in Head and Neck?

And, secondly, of course like virtually everybody post treatment, I want to know about the return to whatever the definition what the "new normal" is. Although I realize that everyone's experiences are unique, there certainly must be patterns in our experiences that are generalizable. So, if great weightloss is one of your side effects, how long was it until you could suppport your weight with oral intake? And, most importantly, how long has it taken after chemo and radiation for the mouth sores to subside enough to make oral intake somewhat comfortable? What about the return of taste? After months of cooking by smell, I got really frustrated the other day, trying to make an Asian soup and realizing that it just wasn't right. The frustration wasn't about that soup in particular but about the prospect that the ability to do that kind of subtle work would just never come back. For me, that's really depressing. In today's Chicago Tribune there is an announcement that Chicago's (and the US) most famous and gifted young (33 yo)chef was just diagnosed with cancer of the tongue. I have eaten in that restaurant, which was an amazing experience. I can only imagine the hell that somebody like that must be going through.

To boil it all down, are there things that the 4000 members of this forum can do to help advance the science of the field? Specifically, is there a patient registry with formal collection of data and subsequent analysis? Is there informal tracking of who is on what trial and what the results are? I mean this from the patient side, not the scientific protocol driven side. Is there anything else that we can do to drive the stage of presentation backward? Am I right that the members of this group have a very high level of Stage IV presenters represented. Has anyone done a qualitative survey about what people were experiencing in the months prior to diagnosis? Has there been and NCI or NIDR consensus conference?

Much of my professional work has centered around AIDS and AIDS activism. These guys have taught everybody lessons, most importantly the importance of collective involvement of the patient community and political activism. Is there a DC office for OCF? Who is lobbying for trials for NCI and NIDR? What about liaison to ACF? Of course I apologize to everybody for being the newbie and asking questions which many of you have thought of long before I appeared on the scene. I am not interested in re-inventing wheels, but just in trying to figure out how my personal and professional experience might help in this new and frightening and hopeful area.

Other more practical questions: Has all the lore and advice given back and forth been collected into more detailed handbooks? Like all the stuff on bottled water and reuse of water bottles. All the recent postings in artificial saliva and the recipes for smoothies, high protein drinks etc.

Finally, is there something that I can do individually, besides give money, which I don't really have unfortunately, to advance the cause and the field? After thirty years in this field, I never knew a single person with an oral cancer. Now, of course, people are popping out of the woodwork. And most of the stories are among people like me who have never smoked, drink very little, have no history of HPV and are mystified about etiology.

Okay, one more thing on a much more mundane and personal level. Does anyone know where to buy Sage very soft toothbrushes? I checked all the obvious sources and the only thing that I can find is through the office of the oncological dentist. Unless I missed it, they aren't even for sale on the Sage website.

And one final comment about this very remarkable website and patient forum. I have looked at many of them, mostly in other disease states, admittedly. This is the best one I have ever seen, truly. However,for a lay oriented site, this group uses with a great deal of arcane medical terminology to the point that understanding some of the postings requires reference work. When you write an informed consent for an IRB, you are required to write to a sixth grade reading level and to translate all medical terms into ordinary English. It is clear that there are many readers of the site who are not familiar with the jargon. Is there a glossary of terms?

Thanks so much for all of the advice and support that I have been a silent recipient of all these weeks. I hope I haven't weighed in like gangbusters, but now I am finally feeling energetic enough and optimistic enough to see my way clear to some kind of future. For me it was a long and cold winter with the a much brighter summer warming me up. I will do whatever I can to help. Please let me know.

Best wishes,

Bonnie Glen

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Hi Bonnie !

I'll tackle one of these questions for you. The cooking and taste. (I'm from SE Louisiana and love to cook AND eat!)

I was a good 20 weeks out from my last IMRT treatment before my taste really started to somewhat stabilize. Now at 7 months, I still have times where the taste buds just plain give up for several hours at a time.

I can use Limes and other citrus as flavoring, but don't ask me to drink a glass of grape or orange juice, it's just nasty to me still. I miss my Tabasco. Used to use it like ketchup, not just for the fire but for the taste. Not able to do that at present, however my tolerance for peppery substances is SLOWLY coming back.

Hang in there, it does get better. Back to pre-treatment normal, I hope so.

Kevin


9 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
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Kevin, This is so encouraging I had a sip of really good wine the other day. The best I can say is that it didn't make me want to rinse my mouth out immediately, but all of the subtlety was completely gone. I am encouraged by what you say about peppery stuff too, since of course one of my favorite things is Asian fusian.

Thanks again for your encouragement,

Bonnie Glen

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Hi Bonnie,
I was put on Zinc Sulphate 'for healing' along with a lot of vitamins after radiation. I just read in CURE magazine that Zinc Sulphate is supposed to help improve taste returning. You might check with your doctor and see if it OK to take it. My taste did return for msot stuff in about 4-6 months but it took several years before I could handle vinegar and red wine although citris did not bother me after about 6 months. Spicy hot I can't take at all, not even one little green pepper on a hoagie. Keep trying, it improves gradually over time and everyones experience is different. Try the zinc and see if it helps.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Hi Bonnie Glen,

I am rushing out and only have time to respond to one of your smaller questions. I've been looking for alternate toothbrushes for my husband, as it is painful for him to brush. I had not heard of Sage until I scanned your message. I found this link for Sage brushes on Nextag, are any of these brushes what you are using or looking for...would recommend these to someone who's mouth is too sore to brush?

http://www.nextag.com/Sage--2700074/brand-html

I look forward to going back and re-reading your post later when I have time to digest it better.

All the best,


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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Eileen, This is just so completely helpful. I will e-mail the doc today. I can live with no spicy hot if I could just get the ability to taste subtle things consistently. This disease is definitely the gift that keeps giving.

Best wishes,

Bonnie

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Dear Margaret, I was given the brush by the oncological dental folks at my cancer center and I used it until the bristles started falling out and choking me. I looked all over trying to find them and finally went back and begged two more. I recommend them totally. I tried using a baby brush but it is too little. Commercial brushes labeled soft feel like scrubbers--impossibly harsh. After I got through the whole radiaition thing the hygienist complimented my tooth hygiene, all of which I attribute to this wonderful soft brush. These are the tricks of this trade, I guess.

Hope this helps and hope your husband is doing well. Thanks for the website, I will check it out.

Best wishes,

Bonnie

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Hi Margaret,

I'm a CRA with a midwest CRO - so very familiar with what you do.

I'm not sure of the trial you are referring to a MD Anderson - but I know I posted and a couple others posted about a prevention trial that used erlotinib. It's probably not the same as what you were looking for though as it was mostly to prevent a cancer from coming back or for those at high risk of development. I had stage II and surgery only. I cannot comment on the taste issues you are seaking answers to.

I hope you find all the answers you need here. People are generally very friendly and helpful.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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You can also by an ultra soft toothbrush on the Laclede Biotene web site. They are REALLY soft. You can see it here http://www.oralcancerfoundation.org/products/patients_products.htm and there is also a link to them.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Hi Bonnie,
I'm sorry to hear about your continuing "issues." Hopefully many will get better with time.
My dad is currently being treated at the U of C. (And he is also in the medical field.) His primary site was the left tonsil. He's participating in the "EPIC" trial: 8 weeks of induction chemo (Erbitux, carboplatin, & taxol), followed by weekly ciplatin & Erbitux concurrent with M-F radiation. Today was his fifth induction chemo treatment.
I too have eaten at Alinea (amazing!) and can't imagine what he's going through. He had a great quote though. "I'm not dwelling on the possibility that I'll never be able to taste again," Achatz said. "Beethoven composed one of his greatest symphonies when he was deaf."


Stephanie -
Father (60yr., nonsmoker, social drinker) dx 6/18/07 w/ Stage4a SCC tonsil. Mets to 3 LN. Induct. chemo (taxol,carboplatin,erbitux) 6/28-8/14; Concurrent Chemo(cisplatin&erbitux) w/ IMRT x 44 8/20-10/2. Surgery to come.
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On this page there is halfway down a link to the best NCI medical dictionary that will help you sort through terminology. http://www.oralcancerfoundation.org/resources/index.htm

For all the abbreviations that everyone uses here, would someone please post the link to the thread where we discussed this and made a list? Once it's up again I'll send it to Chester and get it up on the permanent archived threads links.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Bonnie,

Quite an impressive post, certaintly one of the longest I have read.

I'll start by suggesting you update your signature to include your Dx and Tx, etc so posters don't have to wonder.

You covered many many topics and asked many questions so I'll do my part in posting.

Re HPV, did you get tested? I assume you would test positive and I'm surprised that the findings of Johns Hopkins weren't considered in your trial.

Re HPV, Dr Maura Gillison of JH and Dr Anna Giuliano (Ph.D) of Moffitt are 2 standouts in the HPV field. I'm sure that there are others.

Re Advanced Staging, many of us never noticed anything until we had nodal involvement and even then there was no associated pain. I have found this to be particularly true with HPV+ patients.

Re questionares, surveys, since I found this site none has been attempted and in fact they have been discouraged, rightly so, since we are untrained in that field.

Re activism, Other than Brian, there are a few, myself included, that try to spread the Oral Cancer message. My soapbox is HPV and I have been the subject of newspaper articles; have been on TV and radio programs; testified before the Florida House and I will talk to anyone, anywhere.

Re Taste issues, I have found that each of us can have different degrees of taste and recovery issues since all of us are different to begin with; ther are at least 2 distinct causes of SCC and our Txs vary considerably. That combination leads to difficulty in fitting us all into one recovery mold. Therefore I can only answer about me...I first noticed a taste improvement during my 4th month post Tx and another slight improvement at the end of my 5th month. Since then improvements have been slow but steady and nearing my 11th month post Tx, I feel that my taste is about 90% or better of normal. My wife is a restaurant owner and World award Cookbook author so I share your disappointment since I can no longer (yet) appreciate the subtleties of her cooking.

Re weightloss/gain, I was and still am an exercise nut. Before Tx I rode my bike 100 miles a week and was a former high impact aerobics instructor. I always maintained my weight and was within 5 pounds of my college weight but I never did have a problem if I wanted (or not) to gain weight until Tx began. I did not have a Peg and I lost 30% of my total body weight. Three to four weeks post Tx I started consuming 3000+ calories a week eating every possible bad food I could find. It wasn't until my 8th month post Tx that I started to gain weight and that's when I switched my eating habits back to pre Tx mentality. Starting in my 9th month, I began to ride my bike again and am now back to 70 - 80 miles a week and I actually feel better, not stronger, than I used to.

Re this valuable site, you're 100% correct.

Hope this helps.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Brian - is this the of abbreviations you wanted?

http://web.utk.edu/~aalix/abbreviations.html


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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Bonnie,

Welcome, I'm sure others will come along and answer most of your questions. I wanted to pass on what that happened with me.

I'm now 9mos post TX and most of my taste is back. I recently began eating salsa and Mexican food again with out too much pain. My taste isn't as it was but I'd say it's about 80 to 90% back.

Biotene products work well for my dry mouth and provide you with enzyme replacement to help with dental hygiene. The mouthwash doesn't burn at all. The gel is thick but it lasts a good while. It does take some getting used to though.

I weighed myself today and its official I now weigh more than when I started TX. My wife has been on a mission to help me gain my weight back and she has succeeded.

My energy level isn't the same. I don't think it's going to get much better. I think what holds me back is my mental state. I don't know if I'll ever shake these cancer blues.

Sometimes I feel mentally slower than I used to be and I forget things. I've heard it referred to as chemo brain. Kind of like PTSD, I think. Who knows?

Again Welcome
Tim


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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Hi Margaret,

I know that Amy M. already briefly answered your question about the MD Anderson trial you have read about here, but since I am sitting here at MDA waiting (and waiting and waiting) and am in Month 3 of the trial, thought I'd give more details.

The trial is commmonly known as the "EPOC" trial. It is looking at whether erlotinib, AKA Tarceva, can prevent oral cancer in people at high risk of getting this or a recurrence. It is a fairly unique trial in that to be eligible, your tumor or suspect tissue is examed at the chromosome level to see if you have specific markers that indicate a "loss of heterozygosity" indicating that you are at high risk of recurrence. (around 65%) The link to the trail detail is here
http://clinicaltrials.gov/ct/show/NCT00402779;
jsessionid=2D530CC77B917071F1004E0C4A8BF51A?order=1 (Cut and paste this link into your browser)

I am also an RN so was very interested to read your post about your experiences,although I feel very fortunate that I did not have to have either chemo or rad so can't really answer your specific questions but know others have.

As far what we can do individually, I know that I make a point to educate people wherever I go about oral cancer, if they are willing to listen. Just last week I was in my dentist's office and spoke to not only my dentist at length but also both of the dental techs. While people like Brian Hill are working very hard on National Awareness and Advocacy issues, I guess I'm just trying to at least do this from my little corner of the world, which I think many others are also doing.

Best of luck to you, Margaret, and glad that you are posting now.


Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
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Leslie - that was the one. I have mailed it to Chester so that it will stay on the archived threads permanent list. Thank you.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Re: your cervical issue. My husband is a year and a half out of his last radiation treatment and just this week he had a steroid injection for severe neck pain due to a bulging disc and bone deterioration to the spine, most likely from the radiation. The injection gave him immediate relief from pain and they will start up his physical therapy again. He was getting swallow therapy and stretching for a few months at the beginning, but that was cancelled since the doc thought it wasn't doing much good. They should have never stopped the PT. He still can't swallow and will have the PEG forever, but the neck stretching and massage would have helped him.


Caregiver to husband David, non smoker. Dx 1/06 SCC Base of Tongue Stage IV, neck nodes involved. Surgery/Chemo/Rad. Treatment finished 5/06. Waiting. Recurrence in lung, Aug07. 6 months Cisplatin/Erbitux. Spots shrinking after 3 Cisplatin tx.
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