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This is a journal of our personal experiences with AdCC and IMRT treatments. We hope it may give you some information, insight, and maybe some hope..... Janet and Fred.
IMRT allows very precise external beam radiotherapy treatments. Rather than having a single large radiation beam pass through the body, with IMRT the radiation is effectively broken up into thousands of tiny pencil-thin radiation beams. With millimeter accuracy, these beams enter the body from many angles and intersect on the cancer. This results in a high dosage to the tumor and a lower dose to the surrounding healthy tissues.
My wife Lee received a diagnosis of AdCC on 6/6/2003. She was aware of a lump in the floor of her mouth on the right side. A regular dentist visit was due in a few months so she waited until the appointment to ask her dentist about it. It had not been painful per se up to this point (for years she had complained to her PCP (primary care physician) about jaw pain, which would run up into the ear). He said he thought it could be a salivary gland stone. He had no experience with them and referred us to an oral/maxillofacial surgeon. He examined her and concurred with the stone diagnosis. He tried to manipulate it - to no avail. He then referred us to an ENT (ear, nose, and throat specialist), as he felt it would they would be better suited to deal with it.
Our ENT who has turned out to be a Godsend examined and didn’t concur. He tried conservative treatment first with a course of antibiotics. This resulted in no change. He then ordered a CAT scan with contrast. The scan was read as unremarkable by the radiology consult. The ENT disagreed believing it was a cyst or uncalcified stone. It was causing some discomfort especially with jaw pain and shooting pains up from the jaw and into the ear. We then decided to have surgery to remove the cyst. During the surgery he took a frozen section. This revealed the AdCC. At this point he halted the surgery. He was not prepared for the level of work needed to be done. The local hospital also was not well equipped for the level of care that would be needed.
We scheduled surgery at one of the major leading edge hospitals here in Pittsburgh where he is also a participating practitioner. An MRI was taken. A tumor board met and discussed the best method of treatment for this case. We met pre-op with a highly regarded Plastic surgeon and Radiation Oncologist there to discuss what was to be done. The surgery took place 6/23/03. The ENT performed the resection via the floor of the mouth and under the chin. He spent about 4 hours for his part. A tumor of about ¾ “ x 1 ¼ “ was removed along with sufficient margin and lymph nodes. All margins were negative as were the lymph nodes. The tumor was wrapped around a branch of the facial nerve that was also removed. The tumor did not have perineural invasion, and all nerve sections also came back negative.
He informed us of the procedure and that the Plastic surgeon was now doing his part. To repair the site he made what is called a tongue flap. This sounds gruesome but it was one of the better solutions (other possibilities were skin grafts from elsewhere which is much more involved). Two hours had passed when he informed us he was done and that it went well. She spent 5 days in ICU on a respirator due to much swelling and breathing considerations due to the swelling. Finally things improved and she spent 2 days in a regular room before being discharged.
Follow up with the ENT suggested radiation. He felt very strongly about it. We had to be confident that it was not an off the cuff suggestion. He advised us that some had refused it and had done ok, but that we would possibly always wonder if she should have; especially if there was a reoccurrence later on. We both felt for the peace of mind, it was worth it.
Three weeks had passed when we met with the Radiation Oncologist to plan and schedule the follow up radiation. He took more CAT scans and discussed treatments. Both the Radiation Oncologist and the ENT wanted to use the fairly new method called IMRT (Intensity Modulated Radiation Therapy). This has several advantages over the 3D “standard” treatment. It makes many pencil thin beams of varying intensities focused on the area they want to radiate. It has accuracy of millimeters (about 1/25th of an inch) so it is very precise. The advantage is it allows them to dose the areas they want to treat with a very strong dose of radiation, but do minimal damage to even very close surrounding areas. The multiple beams are relatively weak intensities by themselves, but when all focused on an area, they converge making a very high intensity spot. This allows a path of weak beams, which does minimal damage to the tissue it passes through.
They were very clear there are still some side effects, but they are much less than with the older methods. The only real disadvantage is the treatment session takes longer. Her possible side effects are as follows:
Planning for the IMRT takes them approximately 24 hours of work time, which translates into 1 to 2 weeks. Just prior to commencement of treatment they scheduled a simulation. This allows them to create a face-mask and do some set up preparation. The mask is made as a form fitting mesh that is heated and pulled over the face and allowed to set. The purpose is to ensure you are in the exact same position each day. This is a very precise treatment and over the duration they must ensure no change in positioning. It is a mesh so you can see thru it and breathe thru it. They later cut out the eyes and mouth for additional comfort.
Treatment consists of lying on a flat table. The mask is placed over the face and then is fastened down to the table. The knees are slightly bent and a small bolster cushion is placed under them for support. A harness platform is set against the bottom of the shoes. This has straps that go around each wrist. The purpose is by pulling downward it moves the shoulders down from their normal rest position. This is done to lower the shoulders and get them out of the way of the head of the radiation unit and the beams that will come out of it.
Treatments commenced the day after the simulation. In this case they run about 20 minutes. Some days X-rays are taken to ensure proper position alignment. On days the X-rays are taken it adds 5 to 10 minutes to the treatment. The table is less than comfortable but tolerable. The mask is very snug and is fastened down to the table to prevent any movement of the head. Treatment starts. It is not painful. The head of the machine is about 18” away from the head at all times. The operator’s can both see and hear in the treatment room and can halt at any time should there be a need or problem. She is seen by her Radiation Oncologist, once a week.
The first week of treatment showed no severe side effects other than some tiredness following the treatment.
Some side effects are beginning to appear. The tiredness is growing, especially right after the treatments. Dry mouth has started and liquids must be handy throughout the day. She is also experiencing soreness in the throat. There is also a diminished appetite and distaste for some foods already. Meats have no appeal at all. Eggs seem to still hold appeal so egg and cheese omelets are eaten. She can tell that before long the easiest thing to have will be ensure plus or a similar nutritional supplement. A positive side effect, however, much of the swelling and hardness is rapidly going down. We were told that the radiation would cause some shrinkage of the tissue. This also causes some changes of the mouth/tongue area from the surgery.
I neglected to mention earlier that the Radiation Oncologist had recommended/prescribed fluoride trays. This is done since often the radiation causes the salivary glands to slow or nearly stop production of saliva. This dry mouth condition leaves a perfect environment for the bacteria to flourish which attacks the teeth and gums causing cavities and/or gum disease. The home treatment consists of plastic trays made up to be a perfect fit of the teeth. They are the exact same type of trays used for bleaching / whitening the teeth. They are clear plastic trays which fit snugly over the upper and lower teeth. Before placing them on the teeth one fills the insides with a fluoride treatment gel. This is the same gel used to give kids fluoride treatments. They are placed on for 30 minutes after a good brushing. This is very important to protect her teeth.
Cumulative discomforts are mounting. She has developed a sore raspy throat. In addition, her mouth is very dry. The fluoride itself seems to cause additional irritation to the tongue. She is also developing mouth ulcers (often known as canker sores). The Radiation Oncologist examined her elements of discomfort. He recommended Biotene products. They have a mouthwash, toothpaste, a chewing gum, and a gel. In addition, he supplied us with a pharmacy formulation known as MBX Suspension. This is a mix of equal parts of Mylanta II, Lidocaine Viscous, and Diphenhydramine Elixir. This mixture helps sooth the mouth and the lidocaine numbs the sores. Liquid diet supplements are becoming more appealing.
Lee’s appetite is not what it was prior to treatment. She has managed to maintain her weight. This is by eating even though she isn’t very hungry. They were pleased to see this and urged her to eat as much as she can while still able. During the IMRT treatment more alignment X-rays were taken.
Side effects and discomfort continue to surmount. She has developed several of the mouth ulcers some know as canker sores. She has continues to use the MBX numbing rinse before eating, drinking, etc. It provides some relief but not much. She is now taking a strong cough medicine for a dry hacking cough that has developed. This is in addition to a liquid narcotic pain medicine for general pain.
External signs have begun to appear. There is skin redness following the treatment. This partially subsides several hours after the treatment. She is applying a skin cream that contains an ingredient called ceresin, in addition to some other sunburn type ingredients. A small patch of hair is thinning but it is basically unnoticeable as it is covered by longer hair. There is tiredness and some nausea but most of these are somewhat minor discomforts. The cough and sore throat are the bad side effects. Her Radiation Oncologist had her take a four day weekend break over Labor Day. This did help some.
She is still diligently rinsing with a fluoride rinse as well as the biotene mouthwash. Although she has some dryness the IMRT has spared the salivary glands on the other side of her face so there is dryness but it is not extreme. She continues to drive herself to most of the treatments. If there is a bad night a relative is able to take her. We feel fortunate with the people involved in her treatment. There are two Technicians that provide the daily treatment. They are very attentive to her needs and care. This helps provide some comfort knowing there are the two attentive caring people just outside the treatment room. At the first sign of trouble or discomfort they halt the treatment and are in the room in a flash. Her Radiation Oncologist is also genuinely kind, caring and very much interested in her well-being as well as her physical care. He has been so kind as to make himself readily available to her but to myself as well. Any questions or concerns I am able to ask in the form of an email as I do not attend the daily treatments. He has done well to put our fears and concerns at ease. We both feel this would not be doable if not for someone such as him.
Solid foods are basically not on the short list of things she is able to eat. Soft foods such as macaroni and cheese have been attempted but do not taste appealing. Most things now fit into one of two categories: Those that really don’t have much taste. Those that taste foul. Knowing the consequences of to much weight loss ensure plus, smoothies, ice cream, or milk shakes are eaten rather there is appetite or not. Less than ten pounds have been lost thus far. At this point there are nine treatments to go.
The final two weeks were not easy on either of us, of course especially Lee. The mouth was very dry and solid food was basically not an option. Ensure type shakes and such had to suffice. She found the ensure plus contains more calories and protein and such but also contains iron. This tasted awful. We found that carnation instant breakfast mixed with half and half went down ok. We also found some drinkable yogurts that would go down.
The sores in the mouth were fairly heavy at this point. The yogurt helped some. Most pharmacies carry tablets called lactinex. They are over the counter but they are kept in the refrigerator at the pharmacy so you have to ask. These are chewable tablets that contain the bacteria that is found in yogurt as well as additional beneficial ones not usually in yogurts. They help the sores. This combined with the biotene mouthwash and biotene toothpaste helped also. Unfortunately the fluoride treatments preserve the teeth but they too are hard on the mouth lining and irritate and exacerbate the sores.
Discomfort, pain and especially during eating and drinking were taking its toll. The heavy duty pain med Roxicet liquid was utilized constantly as well as a narcotic cough syrup. This then led us to the final week.
After the Monday treatment (so 4 left) Lee endured about all she could. We went in Tuesday to discuss with the Doctor Tuesday about stopping treatments. He explained to us that as of Monday she had the minimum absorbed dose they would consider effective. He also felt very strongly that he wanted her to finish the last four treatments. As he explained it the last several days are where all the cumulative effects take place. His assessment of how effective the radiation would be hinges on this point. He asked what it would take to get her to finish. The pain and sleep issues were the major factor. So with this he prescribed tablet form morphine. He advised her she could take up to three if necessary. This allowed her to tough out the remaining 4 treatments.
Friday brought an end to this stage!
Weeks passed and the side effects began to subside. Eventually it was time to go back to eating solid food. We have heard many mention the taste of red meat was bad to them. This was not the case for us. Foods need to be soft and easy to chew. As it turned out the food of most appeal and ease was McDonalds. Many double cheeseburgers, milkshakes, and a few French fries were consumed. Eventually the chewing and ability to eat has improved.
It has been about five months since the radiation. This is the point where the benefits of the IMRT become apparent. It is supposed to cause less damage to the surrounding tissue and organs. This appears to be the case. The dry mouth continues to improve. The teeth are all in good shape. Taste was slow to return. It still continues to improve but is probably at 80% of normal. All three doctors (ENT surgeon, Plastic surgeon, & the Radiation Oncologist) seem to agree that taste, speech, and saliva will return to normal or nearly.
Since the treatments ended Lee has had two CT scans and one MRI. All scans have been intensely scrutinized. They all show clear now. We know that this can change in the future but we are living in today. We also know putting time behind us may allow better future treatments if it ever does show up again.
My final thoughts: IMRT is perhaps harder during treatments. This was explained to us that the benefits are not in the short term, but in the long term outlook. IMRT allows them to apply more radiation to an area while doing less damage to non treatment areas. They have also shown me the 3D mapping and the areas they treated with the beams. They were able to intensely radiate the original tumor site, the surrounding margins, and up the nerve it was wrapped around while sparing the remaining salivary glands and such.
November 5, 2005: We knew it was a possibility but held hope and prayer; but unfortunately lung mets have shown up. They are barely detectable right now. We are waiting until there is another scan or two to gauge the growth rate. Recent scans CT, MRI & PET detected the lung mets. We visited a highly regarded Medical Oncologist in the area and she has referred Lee to Dr. Arlene Forastiere at Johns Hopkins.
June 4, 2006: A scan following the first detection scan in 6 months has shown some (slow) growth as well as a few more additional lung mets. Lee is waiting for a clinical trial to start with the new drug Nexavar at John's Hopkins, with Dr. Forastiere. So far the original region is clear on all scans. Nexavar is showing hope for many types of cancers to slow, stop or shrink them. In the mean time we are doing as many things as we can to be as healthy as possible as well as some recommendations from a herbalist for some things that detox and helps the body attack abnormal cells.
January 3, 2007: Lee tried taking Nexavar for like 6 weeks but had to stop due to severe side effects. We have been trying several natural and holistic things. Her last scan, a few months ago, showed stable disease and it couldn't have been from the Nexavar, alone. So, either holistic treatments are helping, or the AdCC just went dormant, or a little of both. One thing she is doing is taking Paw-Paw and all cell detox. The paw paw has show scientific data that suggests it can act as some of the new classes of antiangiogenesis drugs work.
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Sharon Lane
Last modified: January 4, 2007
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