Friday, March 28, 2008

Explanation of Oral Cancer Treatments

There has been a lot of question as to what exactly the treatments will entail. Most of you want to know the specifics of the treatments involved. So I will tell you to the best of my own understanding.

First off the Chemotherapy drug being used is called Erbitux. This drug is used for not only head and neck cancers but for colorectal cancer as well. It blocks the HER 1 pathway which is the pathway in the nucleus of the cancer cell that allows it to reproduce. There is a receptor on the outside of the cell that sends a message t0 the inside of the nucleus to reproduce. Erbitux often misspelled as herbatux blocks that message hence the cell can not reproduce. This has come a long way from the old ways of fighting it with the DNA approach.

Along with erbitux they also give two premeds. Diphenhydramine ( benadryl) and Dexamethasone ( a Steroid). The Benadryl is given because in the midwest with a high pollen count they have has issues with mild to severe respiratory distress. This stops that from happening. The steroids help eleveate any anaphylactic reactions like hypersensitivity. Erbitux has proven very well in stopping the growth and reducing the tumor for sqamous cell carcinoma.

The common side effects of the erbitux are an acne-like rash, diarrhea and low levels of electrolytes (magnesium, calcium and potassium) have been reported. More commonly Magnesium. There is a host of other side effects but these are the most common. Ironically, it can cause hair to growth vs. hair loss. We shall see if it helps my male pattern baldness. ( THANKS to the gene I inherited! )

The drug has reported to have reduced squamous cells by one half or more by it self. VERY encouraging compared to others drugs used in the past. The treatment takes about 1.5 - 2 hours and is administered once a week through a port in my chest.

As you can see, the titanium port is embedded into my chest and a plastic catheter that travels up my neck and into the Jugular Vein. This way, there is less chance for infection and there is no popping of veins due to sticking you too often and a whole mess of other complications are removed as well.

The second treatment is radiation. It takes so many rads to kill a squamous cell. For squamous cell it is 6000 rads. It is one of the highest rads for any cancers. It is one of the hardest cancer cells to kill. Breast Cancer only requires 2400 rads to kill it. And the list can go on. First the make a mask, kind of a fish net material that is made for your head to hold it still and in the same position every time. It will take 1-1.5 weeks to map it all out on the computer. The mask insures the same positioning once the beams have been programed to each target area. The radiation is started off slowly, peaked and then brought back down again. The Peak is 6000 rads. This will cause basically a burn on the outside and inside. Looks like a a bad sunburn on the outside. This is why it can make it hard to swallow during radiation treatments. The radiation takes 8 weeks to complete.

I started the chemotherapy today. It will continue until the radiation treatments are complete. After that I will get another pet scan about 2 months later or so to see if all the cancer was killed off. Then I will have that done on an annual basis for 5 years.

Teeth Extraction for Radiation - Port placement

Tuesday was my surgery. In itself, all went very well. The Oral Surgeon pulled my teeth on both top and bottom and had to smooth out the jaw bone. The port placement went well and that surgeon was also happy. Tis always nice for the surgeons in a good mood. I coughed up some stuff from the lungs. Out of habit, I was pounding my chest to assist the upward travel of the subtance and I hit the newly installed port. YES SIR ! In the words of Janice from the TV show Friends,....."OH.....MY.....GOD!" That was the dumbest thing I could have done. They heard me howl down the hall. Nurses came running in. Fortunately I caused no damage. Just a two day reminder not to do that again.

This was only the second surgery in my life. Last time they gave me Valium to take off the edge because I was so nervous prior to surgery. This time they offered Versed which I refused. Versed only makes you forget after the fact. I read up on that one before hand. You can still be frightened you just won't remember it. Last time they gave Morphine for pain. GREAT STUFF! They were giving me pills for pain this time. It is amazing how different various hospitals operate. ( No pun intended.)After 2.5 hours on the table and 2 hours in recovery, I decided to go home.

Stumbling out from my wheel chair because of the effects of the anesthesia, into the car for the ride home, I Later find that my face was very swollen. Matter of fact, it felt like someone had stuffed a basketball into my head and left it there. It was Saturday before it felt or looked any better. All the teeth are gone, your face is twice the size, and the dentures feels like a mouth full of china. I can not decide which was worse, having a tonsil removed or this. I think this one took me a bit more by surprise. Most everyone has had a tooth pulled. The next day you are feeling fine, eating normal in one week or less. NOT this time buddy! Is like pulling your teeth and then knocking your head with a baseball bat and leaving your sorry self for dead. Five days later, I still have echomosis on my face and neck. But I am better! The basketball has been replace with what feels like gauze packings around upper and lower jaw lines and under the eyes and in the neck. I should be good in a couple more weeks. Until then, ice bags and darvocet are my best friends.

The Port is doing ok. Because I am so skinny, you can see it and the tube going through my chest, up the neck and finally disapearing into the vein. It still kind of hurts too. Not sure if that is because of hitting the thing or because there is no fat for it to cushion itslef with. Either case, I do not like it! It gets removed in about 10 weeks or so. I can not wait!

Friday, March 14, 2008

The Next Step

Medically speaking my next step is going to be on Tuesday, 3-18-2008. It is this day that I will have surgery to have all my teeth extracted and a port placement. Ahhh, Why you ask? I shall briefly explain.

Radiation can cause your teeth to go bad. If that happens, it can cause a multitude of problems. Infection and death of the jaw bone being the biggest concern. Should this happen, surgery is required and this in turn can cause a difference in life quality. That is summing up a lengthy explanation, But I try not to bore anyone. In a nutshell, I am preventing a host of potential problems. Hence increasing my percentage of survival.

The port, it is just so they can inject my body full of those lovely fluids that not only help cure the cancer, but also create the side effects which we all have grown to accept yet hate simultaneously. Though the drug they intend to use, Herbatux, is not supposed to produce all those effects, the proof is in the puddin. Either way, the pain which I have endured for 2 months now has allowed me to gratefully accept what ever is to come in the upcoming months. ( Go figure!)

When I first started this blog it's intention was to keep my family and friends informed on my condition, cut down on the phone bill and save me from embarrassment should I be having a " Bad Day". What I did not anticipate was how many other people would be reading this blog and how it impacted their life as well.

After reflecting back on all the comments I have received, it has grown to be so much more than that. I have received many emails where people have expressed their concerns, similarities and let us not forget the endless supply and appreciated, well-wishers.

The well-wishers play a vital role. They are the people who do not, nor pretend to understand, yet their heart goes out to you. They are not sure what they can do, yet still offer assistance should you decide you need it. It is this that constitutes the feeling that they do care. Believe me, it is nice to be reassured of what we already know.

Our Com Padres of cancer, are the ones that are the most meaningful. Not to down play the importance of others, they are the ones to whom we can relate and find true solice and comfort in. It is these people who play the ever important role in our healing process. Whether you have or survived oral cancer, prostrate cancer, lung cancer or breast cancer, it has the same emotional toll. There have been five major Com Padres that have helped me along the way. One being my Uncle Dave. He is the one who was able to teach me how to come to grips with my cancer. The Second was my Mom. Her recent bout with breast cancer has allowed the both of us to rely on one another as a sounding board. The third was a friend named Jeanne, brilliant author of The Assertive Patient . She runs a blog as well and has emailed me frequently and really has helped more than she realizes. The forth is Dr. Creighan and all the friends at OCF. It was his e-mail that showed me the importance of my experiences and my desire to help others.

It is these reasons that I have developed the strong desire to take this blog a step further. It is my goal to be able to travel and share my experiences. Whether to a University, Church or a support group, I want to be able to aid those who are in need. To be able to urge others, that in many cases, a simple screening can either prevent or cure a cancer before it becomes too advanced.

OH, Number Five? Naw, ....I did not forget. I saved the best for last.
Number 5 would be the Good Lord above. With out his strength and guidence I would not be able to survive as well as I have thus far!

Wednesday, March 12, 2008

Deciding on your Treament Plan

You must realize that you do have a decision. There is more than one way that you can treat oral cancer. In some cases, the choices may not all be there. I am sure that in extreme cases there may be only one choice. It is up to each individual to explore any options and make an educated decision. One thing I have learned, is each Doctor is bias towards his or her own field. I talked to four different ENTs and 4 different Oncologists. They all sided with their respective field as to what the proper treatment should be.

You must interview each doctor closely. Each time I met with a new Doctor, my minimum time was 1 hour. A lot of them lasted up to two hours. I dissected everything the told me and asked all kinds of questions. What I did not think of, the person who was with me did. It is this kind of information you need to acquire not only to make a rational decision, it is also needed to make a decision you can be comfortable with.

In my case, I chose to opt for Chemotherapy and Radiation treatment without surgery. The reason for this was based on two simple reasons. The first was, both surgeons and oncologist agree that radiation and chemo could take care of the cancer. The conflict was their percentages on success. The second was the quality of life. Both did agree and this would be affected by surgery. The difference here was how they viewed that quality.

My Aunt commented this in an earlier post, "Isn't it amazing in this day and age, how much is still left to each individual to determine what is the best course of treatment." She concludes her comments by saying, " the patent's responsibility to be sure all is done in his or her own best interest."

I could not have said it better myself!

I have read of a new early screening test which is cool. No needles, no brush till you bleed or anything of the sort. 100% non invasive. Is it called Vizilite.

The ViziLite Plus exam can help your dentist or hygienist identify abnormal tissue, that might develop into oral cancer. An annual ViziLite Plus exam, in combination with a regular visual examination, provides a comprehensive oral screening procedure for patients at increased risk for oral cancer.

The ViziLite Plus exam is painless and fast, and could help save your life. ViziLite Plus is performed immediately following a regular visual examination
First, you will be instructed to rinse with a cleansing solution
Next, the overhead lighting will be dimmed.
Then, your dental professional will examine your mouth using ViziLite Plus, a specially designed light technology.

They just need to provide more documentation to be approved by the ADA. Makes me wonder why they have not do so after a year has gone by. ?????

Thursday, March 6, 2008

Find Your Health and Happiness despite Cancer

Are you NUTS? Though I have been accused of that before, the answer is a simple no. Being brought up in the church as a child my Mom used to say, everything has a reason for happening. Even if we can not see the good, the Lord has a plan which we just can not understand as yet. When I was 15 years old I had the dumbest parents on the face of the earth. They knew nothing about what I was going through nor could they have any realization of how any of their life lessons could help me in my life's processes. And now that I am 47 years old, my opinion of my parents is a tad bit different. They are simply Geniuses.

Now that I have oral cancer and I can talk freely about it, I understand what they meant about seeing the good within what appears to be bad. Times during a cancer diagnosis can be termed as hellish. But they can also bring about more good than bad. It was during these times I was able to reflect on what most of us all take for granted. Yes, that phrase sounds like something my dumb parents of yesteryear would have said. But words could never be closer to the truth!

You realize the closeness of family, who your friends are and you certainly appreciate what life has to offer as a whole. If asked, "Are you healthy?", during a time when you have the flu, most responses are, "Yes, except feeling bad from the flu." When asked the same question after a cancer diagnosis, I say, "Yes, except for feeling bad because of the cancer. Many are shocked with that. I had one say...but..are you ok? ( What they are asking you is, are you going to die?)
I say, Sure, I am fine. (I am telling them, No need to give up on me for I have not given up on myself!)

Bottom line is, you will go when the Good Lord calls you. Period, End of Story!
When I climbed out of that poor, poor me stage and looked at all that I had, I never felt better nor happier than I did at that moment. I Find myself very happy and healthy dispite any cancer or other health issues that might arise.

Proud member of Jeanne Sather's Cancer Bloggers Join Forces.

Please read other bloggers on our health and happiness.

Health and Happiness
Happy Days
Health and Happiness by Jill
The Jar of Rocks
Can you have cancer and be happy? You betcha!
This one's for Jeanne.
Health and Happiness by Gudrun
Head and Neck Cancer Blog

Oncologist Revals Another Side to Oral Cancer Treatment

I had not talked to the radiation or chemotherapy Doctor when I had decided to do the robotic surgery as previously described in my earlier posts. I only had the information the original ENT Surgeon had given me. That information was not complete nor totally correct.

He told me that I did have a choice of either radiation and chemotherapy at high doses, or, if that did not work, then I would need surgery and then more radiation and chemotherapy at much lower doses. Incorrect statement. He also told me that If I elected to do the Radiation and Chemotherapy first, the chances were about 50-50 of needing surgery afterwards. Also not correct. The quality of life was not explained well after surgery either. Fact is, it poor. Why? Because of the resection of the back of the tongue. In my case the lesion is on the left side at the base of the tongue. Way back where you can not see. On the lower end of the downward side, close to the voice box. They would re sect that and surrounding tissue for the margin. Margin meaning, removing extra tissue around the cancer spot to insure all of it had been removed.

What the tongue does and how important all that surrounding tissue is to things we all take for granted, is crucial. There are 6 cranial nerves and 25 facial and oral muscles that work together to able you to swallow. Opening your jaws also has many oral muscles and tissue to consider for it to open and close. More goes into it that you realize. It is very complex and intense. ( Surprising Huh?) Even having my tonsil removed and that surrounding tissue removed, has affected the way I open my jaw (it will not open 100 % all the way) and caused what is called nasal regurgitation. ( Sometimes when I swallow, a little bit tries to go up through my nose or nasal area. As that tissue heals, I may regain what has been lost, but I will have to see. But when resecting the back part of the tongue, it will not grow back. They would have to reconstruct that with skin from my wrist, shoulder or where ever. Yes the graft would take, but....would not be able to fully replace what God gave me. Hence, it is a life of soft foods, sauces and gravies. That is the case no matter which kind of surgery I would have. ( The original free flap or the TORS.) The robotic or TORS was just less invasive to accomplish the same thing.

Why I did not talk to the Cancer Docs right away? Well....I took the ENT's word for it all. After all, he IS the professional! Big mistake. Now, I talked finally to the Cancer Doctors and here is what they said. The Radiation Doctor said, that it takes a 7.5 week treatment plan of radiation mixed with Chemotherapy. The Chemo Doctor said they use a newer drug for the squamous cell now. It is called Herbatux. It does not cause nausea or vomiting nor hair loss. It has a lot less side affects and it actually blocks the pathways that the cancer cell uses to grow. It alone can reduce cancer tumors by half or more.

So, the radiation takes about 6000 rads to kill the cancer cell. If I have surgery first, it will take 7-8000 rads to kill the same microscopic cell. I forget the exact reason why, but it did all make sense. After this is all done, I will have the same quality of life. Of the 50 patients he has treated in the last year, only 3-5 of them needed surgery afterwards and for different reasons. That is a low percentage compared to 50-50. The Radiation will be every day, five days a week for about 7 weeks. Chemo...not sure how often, but that will be started next week even before the radiation starts. The worst I will feel is how I felt after my tonsil surgery. I can handle that. He uses very localized beams to do this. The one saliva gland will not be affected, and the other will, but he will use a lower dose beam on that one and give me a drug to stimulate it to produce saliva. He said that it is a 50-50- shot of being normal again. BUT it can and has fully recovered with other patients. ( That used to be another risk. Dry mouth.) I can also get me a plate to wear at night to assist the one good saliva gland to keep from getting dry mouth as well.

Patients have been treated both ways. Surgery first then radiation and then radiation first with no surgery. No matter which way you go, the end result is the same in his experience. One way is not better than the other except for two things. One quality of life is better with no surgery. IF and I say IF surgery is needed afterwards for some reason, then surgery is a bit harder because of the radiation treatments received. ( bleeding is worse and extra.) One thing I can do to reduce the need for surgery afterwards is to have my teeth removed before radiation starts. IF my teeth need pulled after radiation, I stand the chance of the bone dieing, therefore needing a bone resection and that is hard both on the surgeon and me. So I eliminate that risk factor by having all my teeth removed first.

I asked him why the ENT did not tell me all this. He knows this Doctor and he is the best when it comes to Microvasular Free Flap surgery. But, he does not know all of the fact with all of the patients. He only knows what oncology sends him. He also, is of coarse, bias towards his field, as is anyone. I added the comment, "And wants his dollar too." Well, I got a big giggle from the radiation Doctor from that comment. He then said in a jovial way, well....I am getting your money no matter how you go, so that is not a concern. He said my job is to inform you as best I can so you can make an educated decision. I asked him, if you were me....he spoke right up and said, I would decline the surgery! Both radiation and chemo has come a long way in the past 5 years. He said, now 5-10 years ago, I would have had a different answer. Bias towards his field? Perhaps, but I have wieghed my options, which is what we all must do.

So I start Chemo next week and see an oral surgeon today!

Saturday, March 1, 2008

Who I turned to and What I fear

Who do you turn to after being diagnosed and what do you fear the most? Perhaps better questions are, what all do you fear and who is there to turn to? This is a biggie, is it not? Well, in my case the answer is surprisingly simple. I feared everything and had no idea as to whom to turn to at all! After you come to terms with the awful facts of your cancer, it all sinks in, you really do not know the answer to much of anything. But I can share what I found out. The answers surprised me, matter of fact I was astounded! The really cool thing is, you do not really have to search for them, they will reveal themselves to you when you are ready to do so.

The hardest thing for me was telling my family and those close to me. Oral Cancer only has a 50 % survival rate within the first five years of diagnosis. Not to good, is it? Totally and completely Freaked me out! But you muster up what you must, tell your family and friends what is going on and what the latest news is. It is said that you find out who your true friends are when the chips are down. Little did I know just how many I had. My family was all supportive of coarse which was to be expected. What I never considered is how much it affected them. They stood by my wishes and allowed me the time to digest.

This is when I found just how lucky I was to have the children I do. Raising children can at times be a thankless job. Little do you know just how much they listen. They of coarse were devastated with the news, yet wanted to stay strong for the old man. I could see that it bothered them a lot. Yet they did their best not to let on to that fact. They would do anything to make it all better and just go away. I find myself being strong for them, attempting teach them one more lesson, the lesson of overcoming life's hardships with grace and dignity.

The one person who I have been with for the past 5 years, I am not sure she knew what to say or do. Though being through similar circumstance 13 years ago, it was not until about 2 weeks later, she said one thing that really meant a lot to me. "I wish you did not have to go through any of this." She told me of how she felt when the Doctors gave her a very unfavorable prognosis. She has been very supportive and does whatever she can. Little did she know, it was her story that was laying the ground work for my soon to be recovery.

My co-workers were and are Awesome. Each of them sincerely ask how I am and how treatments are going. The management has been so understanding and unbelievably condoning with my work schedule. They were at one point what one would come to expect. They soon shined above and beyond that. It was more than just a co-worker who had been afflicted with a disease, it was as if it were a member of family. I am very thankful for all they have done.

After feeling like there was no end to this horror, being afraid of what may come, feeling alone and in complete despair, there was that one conversation that made it all come together. It was not the preacher, not the many Doctors I have talked to nor many of friends. It was one family member who had been through a different yet devastating cancer 18 years ago. It was 18 years ago he was told he had only 6 months to live at best. He made the decision then, that he was not going to allow this to beat him. After sharing things with me that he has never shared with anyone before, he taught me that the Docs do about 10 percent of the work. The other 90 percent is in our mind. You can either will yourself to die, or will yourself to LIVE! He was no doubt, living proof of just that. It was now I realized and reflected back on what ground work had been laid previously and was inspired to do the same.

Around the world people have prayed for me and thought of me. Individuals, Churches, Prayer Teams of those I know not. I appreciated this to no end. I can not express those who have shown kindness, had me and my family in their thoughts and truly expressed their generosity. In every situation there is one or two things or persons who finally, is able to show you a reality that seems plausible. Offering a ray of hope out of a tunnel of despair. It was these people that put me on the track to true recovery.

So who do you turn to? Where is the support system you yearn for? Look around you. They are all right there. They are just waiting for you to be willing to accept their help. It is the realization of the support I have in my entire family, my co-workers and friends from around the world, I have no doubt I shall fully recover and become a survivor of oral cancer rather a victim of despair.

Pandoscopy Proceedure

How ever you spell it Pan endoscopy or Pandoscopy, this is another procedure which is a fact finding mission.
Pan endoscopy (including laryngoscopy, esophagoscopy, and possible bronchoscopy): The Doctor will thoroughly examine the larynx, hypo pharynx, esophagus, and the trachea and bronchi (breathing tubes of the lungs). This examination, called a pan endoscopy, it is done in the operating room while you are under general anesthesia (asleep). The surgeon will look at the area through a scope to determine the size of the tumor and how much it has spread to surrounding areas. A biopsy (removal of a tissue sample for examination under a microscope) is performed with a special instrument operated through the scope. Fiber optic scopes are also used to check the esophagus and, possibly, the trachea and bronchi.

This is a more costly procedure but is more in depth in the determination of the size of the cancer. It also will determine my candidacy for the TORS. Most insurances will not pay for it because of the less expensive procedure that they say is good enough. Can you imagine that?
I have a problem with this. Who are the insurance companies to say what is good enough for our health! This proves that our best interest nor our health is an issue. It is all about how we can save a buck rather than increase the chance for survival. But that is a whole other article!

My current condition is less than I would have thought two weeks ago. My throat is very sore. This is in part from the tonsil and surrounding tissue being removed. The scab has fallen off and now the new tissue is sore. The one Lymph Node is very swollen and I know I need treatment as soon as possible.

I am optimistic yet remain concerned. I know that getting this done right away is imperative yet the free flap surgery concerns me a tad bit more. Dr. O' Malley and his team are very good at what they do. I still wonder if there is yet another form of treatment.

My next appointment will be this next week March 4, 2008 with the oncologist. We are to discuss what I can expect concerning a possible treatment plan and how that will affect me.