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
