SPOHNC Baltimore

John Gill – Waynesboro, PA

 I am a five year survivor of squamous cell cancer of the tonsil. My wife and I have four grown children. Thankfully our eldest son, a pharmaceutical rep. at the time, recognized that the severe persistent sore throat that I was taking an antibiotic for was much more serious. He arranged for an ENT doctor he knew to examine me., I was diagnosed with cancer at the age of 55.

I was referred to Johns Hopkins where I was treated for seven weeks of daily chemo/radiation. I came to have great confidence in the Hopkins Doctors, Nurses and Therapists responsible for my treatment. Together they made a difficult situation so much easier to handle.

During and after treatment I had difficulties with swallowing, dry mouth and fatigue. After having throat surgery, I can now eat most foods, but dry mouth continues to be a problem.

I urge you to get active in this or another cancer support group whether you are a patient , survivor or caregiver. We all can benefit from getting to know others who have faced cancer in their lives. Please email me (gill@msmary.edu) if I can do anything to help you get through this time.

Eric Rodgers     Merritt Island, FL

June 19, 2008

 

 On November 5th, 2007 I was diagnosed with Stage IV squamous cell carcinoma of the left tonsil with metastasis to one my lymph nodes in the left side of my neck. I was 44 years old at the time. I had surgery to remove both tonsils on November 17th 2007. Chemotherapy began on January 7th, 2008. My first dose of chemo was Erbitux®. I was given this drug because I volunteered for a clinical trial. I began radiation treatment the following week. I received 34 doses of radiation over a period of 6 weeks. During this time I continued to receive weekly doses of Erbitux® until the acne rash got so bad that I had to skip a couple of doses. I went back on the Erbitux® my last two weeks of treatment. I also received a dose of Cisplatin® during week 2 & week 4. Radiation & chemo were completed on February 15th, 2008. I responded well enough to the radiation and chemo that I was fortunate enough not to require a neck dissection. In my experience, the radiation had far more impact on the way I felt during and after treatment than did the chemotherapy. Cut, poison, & burn…the burn aspect seemed to be the worst.

I did not have a PEG tube but, I managed to lose only 30 pounds over the course of my treatment. I went from 205 lbs. down to 175 lbs. My weight is now back up to 195 lbs. I needed to lose the extra 10 lbs. anyway.

One thing I learned from my cancer experience is that no two patients are exactly the same. Don’t expect the doctors to sit you down and try to explain all the possible side effects you may or may not experience. You probably wouldn’t be prepared to deal with everything that is being said and, probably wouldn’t know what questions to ask. That is the reason I am writing this…to try and help others prepare for what they are about to go through. Although, and now the legal disclaimer, I am merely relating my experience to you. I am not a doctor and I am not suggesting any treatment for you. Anything you try to mitigate the effects of surgery, chemotherapy and radiation should be discussed with your doctor beforehand.

Before I continue, I would like to thank my Doctors. First, my General Practioner, Dr. Balnath Bhandary of Gaithersburg, Maryland. Second, my Otolaryngologist, Dr. Christopher Sinha of Gaithersburg, Maryland. Third, my team at the St. Agnes Cancer Treatment Center of Baltimore, Maryland; my Oncologist, Dr. Paul Gormley, my Radiation Oncologist, Dr. Richard Hudes, and the rest of the staff at St. Agnes.

Here are some of the experiences I had, and some others that I am aware of:

  • Xerostomia (Dry Mouth) – This occurs because your salivary glands take a beating during the radiation treatment. This is one of the more common side effects of radiation and one of the most uncomfortable. It can more than likely wind up being a lifetime issue to contend with. It can also lead to dental problems if you’re not careful. Make sure you discuss your radiation treatment with a dental hygienist or dentist. In order to deal with dry mouth and its associated issues, I use Biotene® toothpaste and prescription fluoride toothpaste as well. I have gotten into the habit of flossing daily…this is a must! I have a water bottle with me at all times. Trident® with xylitol chewing gum and sugar free Halls® cough drops work very well to help keep my mouth moist. Products with xylitol are supposed to be very beneficial in terms of preventing tooth decay. I also keep a spray bottle filled with Biotene® mouthwash by my nightstand to use in the middle of the night. A room humidifier is very helpful when trying to sleep. I tried taking the Salagen® prescription medicine to stimulate salivary flow but, it did not work for me as it does not work in probably half of the people that take it. However, for those that it has helped, I understand that it takes about 12 weeks before you get some relief. The good news for me is that I am getting back some moisture in my mouth after 4 months post radiation.
  • Osteonecrosis or Osteoradionecrosis – This is frightening but, extremely rare. It is not something I had to deal with and you most likely won’t either. But, it’s basically the death of your jawbone. Again, good oral hygiene is a must.
  • Thrush (Oral Candidiasis) – This is not something I had to deal with but, it is not uncommon. This is also something that I’ve been told that good oral hygiene can help prevent. Brush your tongue as well as your teeth. I spent the money on the latest and greatest Sonicare® toothbrush. It is my understanding that thrush stems from a low white blood cell count due to radiation. There is medication that can treat thrush.
  • Burned Skin – My neck was pretty fried from the radiation. I was using a couple of prescription ointments but, it seemed that my neck would just not heal. Then, one day, I read another patients testimonial. He used a product called LiquiShield® on his neck. I couldn’t find this stuff but, after a little research, I found that it is essentially the same as Band-Aid® liquid bandage. I applied the liquid Band-Aid® to my neck and within days my neck began to heal. What a relief it was…nothing short of a miracle at the time. I must stress that this should not be applied until AFTER you have completed your radiation treatment.
  • Inability To Eat – It was very difficult to eat anything once I was into my treatment and for sometime after my treatment. Thank God for my wife who made sure I kept my nutrition up. She would cook small amounts of chicken, fish or pork and mix them up in a blender with lots of various vegetables and rice. She would blend this with some water to form a soup. She would then heat it on the stove until warm. I lived on this, and nutrition drinks for many weeks until I was gradually able to start eating more solid foods. It is very important to keep your nutrition up…this is a must! My appetite began to improve as my taste started coming back.
  • Sore Throat - It takes awhile for the throat to heal from the radiation. My doctor prescribed a numbing mouthwash he called "Larry’s solution". I think it had Lidocaine in it, if I remember correctly. This helped me get the food down without too much pain.
  • Loss Of Taste – From most accounts, this is a temporary thing. My taste started coming back after a couple of months. At 4 months post treatment, I would say I’ve got about 75% of my taste back. It may not ever be 100% again but, it’s not too bad. I’ve always been a big fan of extremely spicy food (my wife is from Thailand) and I pretty much forced myself eat spicy foods again. I made a couple of mistakes along the way that resulted in severe mouth and throat pain, and heartburn. I was able to start eating relatively spicy foods on a regular basis after a few months.
  • Dysphagia (Difficulty swallowing) – This is something that I dealt with on a minor basis. There is something called a post radiation stricture that can also cause this. I personally believe that I was spared from this because I started eating more solid foods relatively soon after my treatment. I believe that my swallowing regular food helped exercise my esophagus and prevented a stricture from occurring. Of course, that is just my sentiment…I can’t say for sure.
  • Irregularity – I experienced some pretty bad constipation during my treatment. I understand it can be the opposite for some. I was prescribed Enulose® laxative which helped some. After treatment, I started taking Konsyl® psyllium fiber and acidophilus on a regular basis. This definitely got my digestive system back on track.
  • Hypothyroidism (Low Thyroid) – I understand that this is very common and my doctor says my odds of developing this are 50/50. The thyroid, like the salivary glands also take a beating during radiation treatment. Sometimes, this condition takes years to develop. Regular checks of your thyroid level are in order. This condition can be treated with a lifetime regimen of thyroid medication.
  • Fatigue – I battle this with regular exercise. But, sometimes I just have to take a nap. Overall, I feel pretty good now. Just don’t seem to have quite the energy level I used to have.
  • Trismus (Stiffness in the jaw) – I would highly recommend opening your mouth as wide as you possibly can and holding it for several seconds, several times a day during the course of your treatment. I didn’t experience trismus until a few months after my treatment was over. My case is not real bad but, I have heard of some pretty severe cases. From what I have read, if you form a Boy Scout salute and can place the vertically stacked 3 fingers in your mouth, your jaw opening is relatively normal. I am able to do this with some discomfort.
  • Mucositis – I gargled and rinsed my mouth with a solution of 1 teaspoon of salt and 1 teaspoon of baking soda in a pint of water. Mucinex® also helped break this up. This mostly went away over time.
  • Lymphedema – I developed lymphedema about 3 months post radiation. Mine was primarily located between my chin and larynx. My wife and I went to physical therapy to learn how to massage the neck to get the lymph to drain. I am told the lymph nodes can "learn" to drain again on their own. I was also given a garment to wear on my head and neck that helps massage the lymph to facilitate drainage. The consensus among people I’ve talked to is that this is also temporary and will go away. I am told that this can be harder to treat among those that have had a neck dissection because it is more difficult to get the lymph to move past the scar tissue associated with surgery.
  • Neck & Shoulder Stiffness (Radiation Induced Fibrosis) – I experience some of this to a certain degree but, not bad enough to the point where I have sought out physical therapy to treat it. I do some stretching on my own and that seems to be sufficient.
  • Early-Delayed Radiation Myelopathy – My Doctor tells me that this is pretty rare but, I developed this disorder at 3 months post radiation. If radiation is directed at the spine in the neck or upper back, early-delayed radiation myelopathy may develop. This disorder sometimes causes a sensation similar to an electric shock. The sensation begins in the neck or back, usually when the neck is bent forward, and shoots down to the legs. It is my understanding that this disorder usually resolves without treatment.
  • Hair Loss – I did experience what appears to be a permanent loss of some facial hair. I haven’t shaved my neck since I was treated. My mustache, goatee and a small patch of hair over my larynx have grown back.
  • Anxiety – I took a generic Valium for anxiety for about a month. However, I didn’t want to develop any dependency on medication throughout this ordeal so, I quit taking the meds and just dealt with the anxiety until I no longer experienced it.
  • Sleeplessness – It’s difficult to sleep during your treatment due to a number of reasons i.e. burned neck, anxiety, chemo, nausea, dry mouth, mucositis etc., etc. One thing that did help me to start sleeping normally again was to start taking a magnesium supplement. Apparently, the radiation and the chemo can deplete your body’s magnesium levels resulting in loss of sleep. About 5 days after taking the magnesium, I noticed greatly improved sleep…thanks Pop & Mo for that one! Early on, I was prescribed a generic Ambien® for sleeplessness. This stuff made me so absent minded; I had to quit taking it. Not to mention the fact that it only helped me get to sleep, not stay asleep.
  • Nausea – I don’t know what to say…the nausea medication made me throw up! I had to quit taking it. I just made sure that I kept my nutrition up no matter what.
  • Acupuncture – Obviously, not a side effect but, something I wanted to mention. My doctors, my family, and my friends were rather impressed with how quickly I recovered and healed from my treatment. I will attribute some of this speedy recovery to the fact that I underwent regular acupuncture sessions during my treatment. It really did seem to help with my energy level and overall disposition. However, I did try the acupuncture treatment for xerostomia with very little improvement. I have talked to others that did experience improved salivary function after this treatment.

I have to say that, unlike many others out there, I was, and still am, very fortunate enough to have family and friends that I can count on for support, generosity and encouragement…God bless them all. I can only hope that the people that are fighting this battle alone reach out to the various organizations and individuals that are out there and more than willing to help.

After 4 months post treatment, I’m starting to feel fairly normal again. The xerostomia is by far the most persistent and distressing side effect I’ve had to contend with so far. After awhile, you learn to deal with it and try to manage it the best you can. Most of the side effects I experienced seemed to subside after a couple of months out of treatment. Of course, recovery time is going to vary from person to person. I can’t stress enough the importance of keeping your nutrition up to help the body stay strong for healing and fighting the cancer. I eat more fruits and vegetables now and, I have considerably reduced my intake of red meat, caffeine, and alcohol. Most importantly of all, I no longer use smokeless tobacco.

August 2008

 

Six months post treatment. A note on gum chewing, this was working very well until I started to get some pretty bad TMJ pain. The TMJ was causing referred pain to my ears. As you may be aware, ear pain can be a sign of cancer. It gave me a little scare. I quit chewing gum, and the TMJ, along with the ear pain, began to subside over the next couple of weeks. I still get a little shot of ear pain from time to time but, nothing significant. This seems to be one of the after effects of having radiation to the neck muscles.

September 2008

 

Seven months post treatment. I’ve returned to work as of 9/13. I’m a Merchant Marine Officer, a Second Assistant Engineer. My work can be physically demanding at times but, I seem to be holding up pretty well so far.

November 2008

Nine months post treatment. I’m still aboard the vessel. My salivary function has improved slightly. I’ve started to chew gum again because I really need it down in the engine room. The TMJ & ear pain associated with the gum chewing is not as near as bad as it was a few months ago…the healing process continues.

Dwayne Arehart         Lititz, PA

 I was diagnosed with Squamous Cell Carcinoma Dec 7, 2004 after going to my doctor about a lump on the side of my neck.  I had a Radical Neck Dissection on Jan 7, 2005 at Johns Hopkins.  After waiting the required 30 days post op to begin treatment, my treatment began on Feb, 14, 2005 at JHH with 6 weeks of IMRT (Radition Therapy) as well as Chemo Therapy simultaneously (Cisplatin).

Continuing issues are mildy dry mouth due to removal of a Salivary gland and also as a result of radiation.  I also encounter strength issues due to the chemo, but this improves constantly. 

The best I have to offer any new patient is that you must have a positive attitude, be willing to fight..put yourself first before your career and anything else that may get in your way.  Stay away from negative influence and prepare yourself for a journey towards survival. 

I'm happy to talk to anyone who needs guidance or just a friendly ear to unload on...Cancer is not something you fight alone!

My contact info-  email:  darehart@live.com