I am scheduled to go see an ent through kaiser unfortunitly its going to be the same guy but i will make sure he check outs everything. today i was starting to get these red circular splotches where the swelling on the inside of cheek and some minor tenderness under the left side of my jaw and neck and slight soarness on the right rear behind the roof of my mouth almost in the throat area. My apointment for ent is april 2nd pray for me.

Patrick Emanuel

Brian,

I didn't take your comments as a personal attack, but thanks for clarifying that.

Now that I have your attention, though, I would appreciate knowing if you or one of your loved ones was in the position Heather is in, where would you go for a consult and/or treatment?

As a quick recap, on Aug 21st, she was diagnosed with stage 4 base of tongue SCC (I've quit kidding myself about the stage being a 3/4. It was 4.). On Sept 4th, she had very aggressive surgery - partial glossectomy, mandibulotomy, selective (modified radical) neck dissection. The surgery was supposedly successful with clean margins. 4 nodes were positive, although the largest was only 1.2 cm, so surgery was followed by 7 weeks of RAD, which started Oct 30th. The RAD was interrupted because of infection, so an extra 3 days was added.

After RAD, she had 1 good week, then started to go downhill and never really recovered. The docs suspect this second tumor was growing while she was undergoing the RAD. They don't know the size, but are pretty sure it is much larger than the first and is growing rapidly. The MRI of the brain is clear. The bone scan and CT scan of the abdomen, chest and lungs is OK. The head and neck area shows a large "lit up" area and they're not sure exactly what is tumor and what is from the RAD.
the tumor is in the oropharyngeal area. The surgeon suspects it is in or near the throat because she had a feeling her throat was constricting, plus she has 2 areas draining in her neck. She was on a heavy duty antibiotic for 10 days and it didn't clear it up, so they suspect it is at least partially drainage from some necrosis of the tumor. The one spot may be the tumor itself pushing out. He also suspects it may be moving near the base of her brain.

Her pain seems to be increasing daily. She has a trach tube in again to help her breathe. I'm hitting a brick wall when it comes to getting a clear opinion on any clinical trials. I have found some trials, but am lacking the expertise to evaluate them. The surgeon is pushing for chemo to start ASAP. He feels surgery is out of the question, but is willing to refer us to another surgeon. The chemo doc is trying to get her a consult set up at Johns Hopkins, but is willing to try to get her a consult at any hospital of our choosing. But she also feels some type of chemo needs to be started ASAP.

I agree treatment has to be started ASAP. The only question I would like answered first is whether or not there is a clinical trial that should be considered first. From what I've gathered, for some of the trials anyway, if she has chemo now, that will disqualify her for the trial. But I don't want to hold out a false hope that a trial might be the answer when I truly have no idea in the world which way to go.

If we get a consult at Hopkins soon, I should at least get the questions about the trials answered. But, as always, I value your opinion and expertise. You probably know as much about which direction to go as do the doctors.

I guess what I'm really asking is - do you know of any trials that are even worth considering at this point? Or would you agree that getting standard chemo started ASAP is the thing to do?

I know her chances are slim at best, but since this tumor is growing fast and chemo targets fast growing cells, it might give her a decent shot at remission. But which chemo combo holds the most promise? I know I'm asking a lot and I don't really expect a definitive answer. A little guidance would be greatly appreciated though.

If you'd rather, feel free to e-mail me instead of posting on the board.

Rainbows & hugs,
Rosie

There is a lot I don't know about your/her situation, and that may negate the value of what I say here. For instance I do not know what kind of team of doctors have been treating her and recommending to you what you should do. Knowing that they were not some small town doctors with limited resources or experience would make me feel better. (PLEASE if you are a small town doctor, do not email me regarding this comment; it is only reasonable to assume that major cancer center doctors have a greater exposure to things and greater resources at their disposal.) Next, regarding clinical trials. In my own opinion, I believe that they are a path of last resort. You don't even know at this stage if conventional chemotherapy will work or not. Opting out of a known technology, with known results, for an unproven technology or treatment doesn't make sense to me. Has someone lead you to believe that chemotherapy will not work for her? If so, what was their reason for believing that? I would want to see that she was in a major cancer center and have those doctors decide which chemo agent is the most appropriate given the tumors location and staging. I believe that getting her into a facility like Hopkins, MD Anderson, Mayo, or Kettering, if it is within your financial abilities to do so, outweighs any benefits of being treated in the comfort of a home environment that you/she is familiar with.

Given what little I know about the details, I am with the surgeon on this one. Starting a therapy now like chemo seems the prudent thing to do. It will not take long to determine if it is having an effect or not. If not, you can fall back to the next level of treatments, clinical trials. In the meantime I would want to be sure that you are getting professional opinions from more than one doctor, and hopefully from several of different disciplines. This is all so much easier when they are together at Hopkins or where ever. Your posts indicate that you do not have a belief that she will beat this, and I would like to know what has been said to you that makes you feel this way. It may provide some insight to me. As always, if there is something within my small realm of influence that I can do to help you, please do not hesitate to ask.

Patrick, Your doctor should be doing some basic testing to determine if you are fighting a significant infection. This would at minimum involve blood work. You should be able to ask him what he thinks this is, and why he thinks that. You should be able to leave his office with a complete understanding of what is going to be done to determine a definitive diagnosis, and what treatment is going to be instituted to get you healthy again. Do not be afraid to ask tons of questions; do not leave without answers that give you some peace of mind and a sense that something is going to be resolved. If he cannot tell you after some basic tests what it is that is wrong, he should refer you to someone else that will help him determine what is happening. Do not accept a wait and see attitude from him if things are getting worse. Let us know what happens.

Thanks Brian. I wanted to strongly suggest that Heather go along with the recommendation that she start chemo ASAP. I was hoping that was what you would say. I was the one who first brought up the subject of clinical trials and now regret that I even mentioned it.
The reason I started looking in that direction is because the surgeon first said her chances are less than 10%, then amended that to "actually even less than that". He then mentioned that hospice care may be a consideration for the near future. He was looking at a time frame of less than a year. To give him some credit, the next day he did say that since this was a fast growing tumor, that chemo might have a fair chance of halting it. But he definitely does not have the positive attitude that he had when we started this odyssey in August.

A couple of the OCF members have e-mailed me privately and have given me an extra helping of support and of hope. Thanks Dinah, Donna & Eileen. We should hear something today about when we can get a consultation at Johns Hopkins.

Financially, we are not well-to-do, but we have excellent credit. I've always thought it ridiculous that credit card companies keep increasing our credit limit , because there's no way we would ever put $25,000 on a credit card, but for this, we certainly will if necessary. After this is all over, I will just have to go get a job again so we can pay it back! :p

Thanks again everyone for all the info and support.
Rainbows & hugs,
Rosie

Rosie, I know exactly what you are going through I had Danny in at the Mayo clinic they did another Biopsy at the end of Feb. and told us that it needed surgery but was not so sure that he could make it through it with the amount of weight loss and the way he continues to be losing and it would be such a radical surgery and the Mayo doctors said that Chemo would do no good because it will not shrink or halt the tumor. It never really went away it just shrank in size and continued on growing down in the base of his tongue. We talked to the ONO and she agreed that we should not have the surgery and just live one day at a time and come to grips with this because she gives Danny about 8 months as a educated guess to survive. He opted not to take his whole Jaw off or the third or more of the tongue out because its so radical that they do not think it will help. I will pray for your daughter she is young and Danny is 55 years old so she probally has a better chance. Bobbie 232

Dear Rosie,
Wanted to discuss a couple of things re Heather and trials.
I have just completed 7 weeks rad to tonsillar stage 4 SCC with lymph mets to left and right neck. Prognosis was v poor and unlike Heather they(Vancouver oncologists)ruled out surgery as would have been too drastic a cure????
I was put on a trial which had it's origins in France and another from Italy, which recommended double chemo - Carboplatin and 5 FU's together - which was supposed to be most effective but also most severe treatment. The chemo was to be given 3 times - weeks 1, 4 and 7.
The results of older trials have shown that most patients cannot tolerate these high doses so they have reduced them to 2 sessions only,within the 7 weeks (which is what i received) they say any more could produce permanent side effects which out-weigh benefits.They explained that the chemo itself didn't treat the cancer but made the radiatiom more effective. Right from day 1 my lumps went down and are all but gone - to the point where there was not enough of a lump to biopsy on the left side.It's impossible to say whether still cancerous or not but am hoping the tiny bit left is just scar tissue. My radiotherapist is still worried that cancers in the young tend to be more aggressive.The chemo made the lymph node soft and although the side-effects are grim they are nothing to be afraid of - if the tumour can recede that quickly...... it's got to be worth a try and soon.
Like Heather I am a young woman with no risk factors but that's another topic! I am just mad that it took them 6 months to finally treat me and feel sure that my staging would have been different with a whole different experience, we must push for timely diagnosis.
I want to wish you all the best with your decision-making . Rest assured we are all rooting for you and Heather, whatever you decide on. I am worried about relapse too but will hang on in there and keep fingers crossed!
Bye for now, best wishes,
Frances.

Frances,

Thanks for the info. I have added it to my list of things to discuss with the onc. Sure hope your cancer is totally gone. I wish you the best.

Bobbie,

I am so sorry to hear about Danny. I surely hope they are wrong. Heather's surgeon also said he wouldn't recommend operating. It would just be "heroic surgery", probably wouldn't work anyway and she would be terribly disfigured. I can't help but think about people like gnelson and Packer66, though. I know they are still having reconstructive surgeries and it has been terribly hard on them, but they are still alive and supposedly cancer-free. I think if chemo doesn't work, it might be worth a shot, with a different, more confident surgeon, though. Of course, it is ultimately Heather's decision.

Evereyone,

As far as clinical trials, I have changed my mind again. I just re-read an article I found in a magazine from last year. It states that about 75% of children with cancer in the US are in clinical trials and only about 5% of adults are. And the survival rate of the children has increased progressively with the increased number enrolled in trials. Sounds to me like it is worth considering.

We do have a consultation at Johns Hopkins on April 3rd. We also have an appt with the local onc on Monday because Heather's swelling has increased just over the last 24 hrs. It had been her cheek and jawline that was swollen. Now the swelling has expanded to include her eye and lip. If the onc thinks it is critical, we will start standard chemo Mon. Otherwise, we will go to Hopkins on Thurs and see what they recommend.

To all who have e-mailed me privately, Thank you! You are all so wonderful and caring. And Eileen, you and Brian may disagree frequently, and I do respect Brian, but I think you are an angel!

Wish us luck!
Rainbows & hugs,
Rosie

Rosie, glad to feel that your strong will to fight the battle with Heather has returned.For your information, I am also in a clinical trial. I was chosen because of my advanced stage. The tumors in my tonsil and left neck were very very large.Judging from my education background(that I could discipline myself during treatment), my strong will to win and most important, my relatively young age ( compared with Heather, I am very old), the team of doctors decided to put me in the trial.Once you are in a trial, you are more closely watched by the doctors and receive more frequent check-ups.Of course in Heather's case, timing is of paramount importance. Hope that the doctors will choose the best treatment for her ASAP. Take care,

Karen stage 4 tonsil cancer diagnosed in 9/01.