Stomach Tube Placement

Today, Tuesday March 31st, Dr. Carter placed a feeding tube into mom’s stomach. The procedure took about 30-45 minutes and went as planned. She will need to keep the dressing on it until Thursday when she follows up with the doctor. This means no showering until Thursday which just thinking about it is making her crazy and she doesn’t get to see what the tube looks like until then also.

Dr. Carter said that she can eat as usual until the time comes that using the tube is necessary. At this time we call his office, he will prescribe the formula and schedule a home health nurse to come to her home to set everything up and show us how to use it. He said that he has had patients that have the tube placed and never use and other patients that once treatment gets going they are very grateful to have it, so I guess we will wait to see.

I have updated the calendar website so if you had problems in the past check it again because Rach has hopefully fixed it, but if not let me know.

Rachel has created a website that I can post mom's doctor schedule as an easy way to stay connected. Go to the following site, which I will update as often as I do my own personal calendar: http://sites.google.com/site/connectedwithcarol/

Please let me know if you have any problems and I will try to get someone to help me fix it.

Radiation Simulation

Today, Wednesday March 25th, mom went out to the Cancer Center for a simulation. It was a very quick and simple procedure. They found the headrest that was the most comfortable while still put her head at the correct angle, pulled her shoulders down using restraints, molded the mask (which I found fascinating), did a CT Scan and sent her on her way. The tour consisted of the dressing rooms and waiting rooms. This was not very exciting for Rachel and Leah who spent most of the time sitting in the waiting room, just to see two areas. We were all hoping to see the actual equipment, but it appears that only mom gets to see that. There is a DVD at mom's house for anyone to see which explains the treatment, equipment and facility.

Still waiting to schedule the PET Scan and Medical Oncology consultation.

Radiation Consult

Tuesday, March 24, 2009 Mom met with Dr Geiver, a Radiologist at the Tri-Cities Cancer Center. Below are the notes of the consult: First this type of cancer is not common - not unheard of, just not common.

After finding the mass, the first step was to see what type of mass we are dealing with. When Dr Swartz removed the tonsil and the mass, his goal was not to remove the cancer but the mass and find out what type of cancer. Now that they have identified the cancer as Squamous Cell Carcinoma and we know that not all the cancer was removed there are different ways to approach treatment.

The first step is to see where else the cancer is. A PET scan is used to identify cancer in the throat, neck, lungs and bones. After PET scan, they will be able to know fully how to proceed. Even if the PET scan does not find that the cancer is outside the throat region there are choices that need to be made.

1. Major operation to remove part of the jaw bone, neck and something else (sorry couldn’t keep up). This is a major and invasive operation and Dr Geiver did not recommend she go in this direction.
2. The second approach is 7-weeks of radiation Monday-Friday. There are many side effects from this (listed below). The objective of the radiation is to damage the DNA of the bad cells (cancer cells) so that they can not reproduce. In accomplishing this, other DNA cells are affected
3. The third approach is to have radiation and chemotherapy at the same time. The doctor suggested that Mom consult with an oncologist about this. There is a specific chemotherapy drug called Herbitux that has been found (in conjunction with radiation) to be effective to improve the result by 5-6% for Mom’s type of cancer. Short Term Side

Effects from the radiation:

1. Fatigue, she will feel run down and will need to rest more (the good news no nausea)
2. Sore throat and mouth. The doctor stated that if you think of the worse sore throat you’d ever had, this will be even worse. He said to consider the experience an “investment in misery” to get well.
3. Will loose all taste buds (temporarily) until approximately two to four weeks after treatment is finished. All food will taste like cardboard and tin foil
4. Dry mouth – the radiation will kill the glands that produce salvia
5. Sunburn like on the face and neck, which may blister
6. Hair loss in zoned patches on the back of the ear and head. It may come back in thin, different texture and/or color. Most likely her hair will come back thinner then now
7. Nutrition issues which are caused by all the mouth soreness and lack of taste. The options here are to make a diligent effort to eat even when it seems impossible or to have a stomach feeding tube inserted.
8. The gums will get very sore and receed. A few weeks into radiation she will stop using her dentures all together – just too painful. She will eventually, six months after the end of treatment need to be refitted for new dentures.

Long Term Side Effects from Radiation:

1. Neck will be thicker
2. Checks firmer
3. TMJ issues – jaw will be stiffer and may continue to be sore and not go away. She will need to work throughout radiation treatment to keep her jaw opening and closing as wide as possible
4. Internal sores that may not heal. Not as common but may result
5. Continued dry mouth. There are pills to help with this, but it will not return to normal.
6. May be some scaring in the in the lungs.
   

Options that required discussions (other then to do radiation)

1. If she wants to have the feeding tube or tough it out. The doctor’s recommendation is to have the feeding tube. There is less chance of being admitted in the emergency room for dehydration and nutrition issues. Monitoring her nutrition and weight as closely will not be necessary. However she will still need to actively swallow 2-3 times daily, which will be challenging.
2. If she wants to take the drug that helps maintain the salvia glands. However there are side effects from this drug. They include dizziness, allergies, and rashes. The drug takes 1.5 hours to administer (by shot) and will add an hour and a half to the daily regimen. It can be started and if the side effects become present, she can stop it. The drug is done by the oncologist that will do the chemotherapy so it could be one stop shopping for her.
   
   
   Mom asked if she will be able to continue to drive. The doctor said that she must monitor herself and know when she is not safe to drive. If her neck becomes too sore for her head to have full range of motion making it hard to look over her shoulder and if her fatigue is to a point that it will affect her reaction time.
   
   Over all her prognosis is very good and he feels that she can over come the cancer. It will be a very uncomfortable seven weeks and he reminded her that it will be an investment in misery.

Surgery to Remove the Mass

On Friday, March 13th Dr Schwartz performed surgery at Kadlec Medical Center and removed the left tonsil and the mass. The surgery took approximately 45-minutes and after an additional hour in recovery Mom was moved to the critical decision unit where she spent the night.

Following the surgery Dr Schwartz felt the mass would be cancer and thought it would be lymphoma. The mass was sent out to be biopsied and the results taking 3-4 days.

Mom did well overnight and was released from the hospital by noon. She was happily sleeping in her own bed. Mom did not like eating soft foods but she recovered very well just took a lot more naps then usual and to bed earlier at night.

Meeting with Dr Schwartz on Thursday, March 19th, he informed Mom that he was wrong and in fact she has squamous cell carcinoma. The mass was 4.5 cm and the margins were not clear. Meaning the surgery did not remove all the cancer. Mom was referred to the Tri-Cities Cancer Center for radiation.

Finding the Mass

Tuesday, February 10, 2009, Mom went in for her routine colonoscopy and endoscopy. Her endoscopy was first followed by the colonoscopy. During the colonoscopy, Dr Carter found that her stomach had blood in it. After draining the blood it returned. He admitted Mom in the hospital for observation and called Dr Schwartz (ear, nose and throat specialist) for a consult. They monitored her blood count and found that there was a mass on her left tonsil.

After being released the next day, Mom saw Dr Schwartz on February 13th. Dr Schwartz suspected cancer and recommended that the mass be removed. She was scheduled to the mass removed on February 27th however at the admitting appointment; the anesthesiologist wanted her to undergo a cardiology consult.

On Monday, March 2nd and Friday March 4th Mom did the resting and stress echocardiogram. On March 5th Mom underwent Dr Racsa cleared her for surgery. Dr Schwartz scheduled the tonsil and mass removal as the first surgery on Friday, March 13th.