Nose block and mucus

Sharing by Mr. Dave Cheow - cancer survivor (28/08/2011)

" My name is Dave - an NPC Stage-2 Survivor for 9 yrs. My treatment was radiotherapy only. I signed on for a 'guinea pig" treatment program (in medical term, a clinical trial) which gave a double dosage of radiotherapy daily in the second 3 weeks of the full 6-week radiotherapy treatment. I was informed that this treatment had a higher recovery rate, as previously tested in Germany.

Since the treatment ended until now, my nose has been accumulating lots of mucus and have to blow out my mucus regularly. I never had this mucus problem in my life until this side effect kicked in immediately after my treatment. As my NPC tumor was found in my right side of the nasopharyngeal, the right of my nose is probably more damaged then the left side. Hence more mucus accumulates in the right side of my nose. When I'm normal and well, the mucus is clear. The mucus turns yellowish if I'm having a cold or flu. When I'm down with a bad flu, the mucus color changes to dark yellow and looked very gloomy. However, the mucus has never smell bad until about 1 year ago.

Over the last 1 year, I realized the mucus from the right side of my nose has changed or I can say - 'mutated'. When I am down with flu with symptoms of blocked or running nose, the mucus from the right side of the nose becomes dark yellow and the mucus smells bad. The mucus is thinner, but it can drip freely without me realizing it. When it does drip, I'll have to bend down and tilt my head downwards to blow hard on the right side of the nose to get rid of the mucus. It is only in this position that I can effectively clear the mucus from the right side of my nose by blowing hard repeatedly. It is also in this position that I experience the worst ever smell that I can ever imagine coming from my body, i.e from the mucus from the right side of my nose. The stench from the mucus also affects my breath very much that I have to keep going to the toilet to wash up.

I also take longer time to recover from the flu since. Instead of taking just 1 antibiotic to recover in the past, now I may have to resort to taking 2 types of antibiotics at the same time. On the advice of my doctor, I'll now turn to more frequent flushing of my nose with the recommended nose wash and hopefully this helps to slow down the worsening of this particular side effect."

Mr. Dave Cheow – 9^th year cancer survivor

Swallowing - An Annoyance

Sharing by Mr. Peter Tang (30 August 2011) - NPC cancer survivor  

Last year I was having lunch at the food center. I ordered my food from a “ zhi cha” stall selling all kind of cook food. As part of my healthy eating regime, I usually order vegetables, steam egg and a fish. I would remind the cook’s assistant twice, to add generous amount of gravy to the dishes so that the rice will not be dry. If the stall gives a free bowl of soup, I will be very happy and appreciative and will make a point to always patronize the stall for lunch again just because of that bowl of soup.

Moving to the nearest empty table, I began my lunch. Two gentlemen came to share the table with me a few minutes later.  Looking at their food, I realized that they have ordered from the same stall.  One of them looks like in his late 40s the other in his 60s. Five minute later, they have literally finished what were on their plates and I was still struggling to finish the last portion of my food.

I have noted that for the past two years, lunching out has began to be a chore for me not because of being unable to decide what to eat but more because the act of eating has began to be a task and a challenge. Twenty years after completing radiotherapy for my nose cancer, I realized that swallowing food (especially food with dry texture like chicken, fish or some type of vegetables) has to be deliberate, occasionally forceful (if the food gets stuck in the throat even after washing it down with fluid). Sometimes I gag suddenly because of small remnants of the food (e.g. Kit Kat) get stuck in the dry areas of the throat. However eating food that is watery will eliminate most of these unpleasant experiences

Late last year, I requested for a medical test to check the strength of my throat muscles in swallowing different kinds of food.  I called it a Barium Meal as the radioisotope barium liquid was added into each of the three categories (meat, salad and bread) to see the swallowing motion on X-ray. I was told to chew them and swallowed them when I was ready. The strength of the muscles was captured on dynamic X-ray film and this was recorded. The results showed that overall; my throat muscles were still functioning well although there were some signs of muscles fibrosis.  I will be repeating another similar test again soon.

Swallowing for me is an ANNOYANCE but it is not a major ISSUE. Notwithstanding, I am appreciative that I am able to eat and enjoy the food (although at a lesser extent) and more importantly to be able to eat with the people I want.  One of my house rules is that I make it a point to eat out once a week with my family because this is the time for my family bonding. For me, this reason far outweighs the small annoyances of swallowing.

Finally let me end with this Charlie Brown’s quip which I believe, resonates loudly not only with me but with all nasopharyngeal cancer survivors.

Lucy remarked: “ I am making a list of all the things that I have learned in life, well actually, I am making two lists.” Charlie enquired, “ Why is one list longer than the other? ”. To which Lucy replied, “ These are the things I have learned the hard way!”

Peter Tang

19th year old NPC cancer survivor. Treated with radiotherapy.  

Hearing loss after radiotherapy for NPC

Total hearing loss is uncommon. Reduced hearing loss either on one side of ear or on both sides can happen during and after chemotherapy and radiotherapy for NPC.

Causes of hearing loss DURING concurrent Cisplastin chemotherapy and radiotherapy is due to Cisplastin chemotherapy side effect that can cause high frequency hearing loss and tinnitus (ringing in the ear). If these symptoms happen, the patient need to alert the doctor. Most of the tinnitus and high frequently will resolve once the chemotherapy has been stopped. Some patients have to discontinue the chemotherapy early if the hearing loss is severe. Persistent hearing loss can happen in some patients when the chemotherapy was continued and not stopped despite the onset of hearing loss. It is very unusual for radiotherapy to cause hearing loss DURING radiotherapy. Radiotherapy however can cause a late onset hearing impairment.

Causes of hearing loss AFTER completion of treatment from 3 months onward to lifelong could be due to several factors:

1) After effect of Cisplastin chemotherapy that has persisted since during chemotherapy. This usually improved with time over the next few months but in a small number of patients, persistent high frequency hearing loss will continue for life.

2) After effect of radiotherapy damage to the cochlear (inner ear) that maintain the sensory-neural conduction of hearing from ear to the brain. In IMRT radiotherapy, the radiation oncology doctor will try to spare the cochlears on both sides and avoid giving high dose radiotherapy to the cochlear. While this is in most cases possible, in patients with a large NPC cancer, this cancer can be very near the cochlear and hence cannot be spared. Fortunately, we have 2 ears and in this case, one side of the cochlear will receive a higher dose of radiotherapy to gain maximum cancer control on the side where the cancer is nearest to cochlear while sparing the other side. Damage to cochlear results in a long term hearing loss and the hearing loss is gradual and may take 6 months to life long before patient notice. It will not be apparent immediately on completion of radiotherapy.

3) The radiotherapy to the NPC will cause some radiation to mid and inner ear. Inflammation at these areas can cause fluids to built up and affect the ear drum function. Furthermore the Eustachian tube which connects the nose and the ear can be blocked leading to nasal blockage and ear ache. These areas are also susceptible to bacterial infection causing otitis. In severe causes, the ear drum may burst when the swelling builds too high and the ear pain will reduced, but the hearing will be impaired with a burst ear drum. In recurrent fluid built up, the ENT doctor will consider inserting a grommet which is a small tube at the ear drum level to drain the fluid out. When the fluid is drained and the fluid reduced over the next few months, the grommet can be removed. The ENT doctor commonly will also prescribe ear drop antibiotics and/or oral antibiotics to treat ear infections and frequently contribute to the fluid build up.

4) Ear wax can build up in the external ear causing hearing impairment and pain and the easy solution is to use some olive oil to loosen the ear wax and for it to come out gradually over the next few days or for ear syringing or a small vacuum suction tube can be inserted to suck up the wax under a ENT doctor consultation. The hearing will be back to normal immediately if it is the ear wax that is the cause of the hearing impairment.

In summary, total hearing loss is uncommon, but a certain degree of hearing impairment  is a well known side effect of after treatment of NPC and could be caused by chemotherapy, radiotherapy, inflammation or infection combination. Alerting the ENT doctor early to look into the ear with a otoscope (shining a light into the ear),  can usually find a cause. Further specialist investigations include a full hearing test to check the loss of hearing frequencies or a CT scan to look into the anatomical structure of the cochlea, Eustachian tube and the nose. In the worse case scenario, patients may need to wear a hearing aid for life. A hearing aid may work in most cases, but in certain group of patients, hearing aid will not improve the hearing back to a normal functional degree.

What kind of exercises are needed after radiotherapy for NPC?

Radiotherapy given to the head and neck areas can caused scarring effects in long term. So, it is of no surprise that patients can get "hardening" skin and muscles especially at the neck and jaw areas.

Hardening of the jaw areas caused trimus, a medical term describing the difficulty and inability to open the mouth fully. In a ordinary person, one can insert 3 fingers in a vertical position into the mouth. This equates to about 4-5cm of mouth opening. After radiotherapy, the temporo-mandibular joint that is the joint just underneath your ear level that acts to open the mouth can become stiff. This reduces the ability to open the mouth wide and in so doing, it can cause pain as well. The best way to stop this happening is doing periodical opening the mouth as wide as you can by inserting orange stick (ice cream stick ) into the mouth. One can put in about 10 stick stacked up together. Alternative is to use thick towel. Whatever you put into the mouth does not matter. You only need something for your front teeth to bite and grip and stretches the opening for the mouth. Chewing exercise in this case will help. Trimus can happen gradually and not immediately and hence it is good to practice some jaw and tongue exercises routinely. Come to our support group and we will show you how.

The other part of hardening is the neck muscles and patient complains of stiff neck and inability to turn in a full range of movements to look left and right. The only way to see right and left is to turn their whole body instead. Again, this can be prevented by doing routine neck exercises. The way to achieve this is to do the 6 range of movements of the neck - up and down, turn left and right and tilt left and right (ie tilt your ear to the left and right as compared to turning the neck). Try to turn until it is just a bit painful and use your hand to give it a bit more push actively to turn it more to overcome the resistance. Although this will generate a bit of initial pain, it will help to stretch the muscles more and this part is really the part that helps. As in any exercises, you need to feel a bit of muscle stress ie pain to get the benefit. But, do it in moderation. A little bit of pain and not severe pain.

The last thing you will need a a good moisturiser. The sweat gland is partially damaged by the radiotherapy is hence the skin will always tend to be more dry. Dry skin is not good and the skin feels hard. So, apply a generous amount of moisturiser - aqueous cream equivalent with Aloe Vera, Vitamin E, paraffin based are some examples. But, make sure the cream is free from perfume or only lightly scented as perfume is not good for radiotherapy damaged skin. Use it twice a day if possible.

All this will help you get a normal skin and minimized the hardening of jaw and neck muscles. Remember that prevention is better than treatment. Get it into routine so that you will never get this problem. If problem has already developed, a physiotherapist will be able to help.

Managing dry mouth after radiotherapy for NPC.

Dry mouth is very common after radiotherapy to the head and neck area. This is due to radiation effect to the parotid, submandibular and sublingual salivary glands. These caused the reduction of saliva production resulting in dry mouth.

The first thing a patient will notice during the radiotherapy course is the thickening of saliva about 4-5 weeks after starting the radiotherapy. After completion of radiotherapy, the saliva production is reduced and becomes very thick. Due to the effect on the inner lining of the mouth and back of throat, this can further cause ulcers, inflammation and pain leading to painful swallowing.

It is common for a patient to carry small bottles of water to rinse and to drink during the process.

Patient always ask doctor 3 questions about the dry mouth:

1) Will it get better?
2) If it will get better, then when will it happen?
3) Is there any medication or food that will help the dry mouth beside drinking water?

In the older days, radiotherapy is given as a parallel opposed beams. This means the radiotherapy enters on the left side and exits on the right side and all the areas of the mouth, jaw and neck areas are treated. In modern days, there is now a better way to deliver the radiotherapy and this technique is called IMRT - Intensity Modulated Radiotherapy. What this means is really given the radiotherapy in multiple beams, like a circular beams that spread out the high doses so that to spare certain organ at risk and in this case the salivary glands. As a results of this, comparing the older radiotherapy that cause 100% salivary loss with 0% chance of recovery, it is now possible to say that with IMRT, salivary production recovery is possible to a certain degree and completely dry mouth with no salivary production at all is rare.

With IMRT, saliva recovery happens around 6 months on completion of radiotherapy and will continue to improve up to 2 years after the completion of radiotherapy. It is unusual for further recovery beyond 2 years.

To deal with the dry mouth, drinking sips of water is still the best way to wet the mouth and throat. However, water has no addictives in it. In saliva, there are multiple enzymes that protect the inner lining of the mouth and the teeth and if this is lost, there are higher chances of getting gum and teeth diseases.

There are now artificial saliva equivalent which contains salivary enzymes to help gum and teeth decay and at the same time provides relief from dry mouth. BIOTENE products from GSK are a range of products from mouthwash, gel and toothpaste that contain such enzymes and patient frequently reported good symptomatic relief and happy with these products. ORAL SEVEN are another similar range of products and both BRANDS are available for sale at pharmacists in Singapore without a doctor's prescription.

To stimulate saliva production, the act of chewing helps. Patient can chew sugar free gums or if no gums are available (since gums are prohibited from sale in Singapore), then the act of chewing, tongue and jaw exercises usually helps as well.

Lack of taste is a common complaint as well since the food cannot be mixed with saliva for the tongue to taste the food. The taste buds from the tongue are also partially destroyed by the radiotherapy. The tip of the tongue that taste sweetness usually recovers first compared with the rest.

The GC Tooth Mousse brand is a HIGH flouride mousse. It is better than normal toothpaste due to the stronger fluoride content and will fortify the teeth against tooth decay. This is available via selected dental practices throughout Singapore but not available in normal retail market.

In summary,

With IMRT (this is now the gold standard of radiotherapy in Singapore in NPC treatment), saliva production tends to recover although not completely. It takes 6 months to 2 years for the saliva production to recover slowly. In the meantime, try to chew sugar free gum, do chewing and tongue exercises to stimulate saliva production. There are multiple over the counter supportive care products that contains artificial saliva that helps and there is a need to see your dentist every 6 months for dental check. A high flouride compound is highly recommended to strengthen against tooth decay.

Hormonal changes after radiotherapy treatment for NPC

There will be a NPC meeting at NUH hospital at Tower Block at Level 7 between 1.30p.m to 4.30p.m Come and listen to Dr. Koh (Associate Consultant in Endocrine Medicine) as she talks on the possible hormonal changes of the pituitary and thyroid glands and signs and symptoms of the dysfunction. This talk will be useful to newly diagnosed patients and cancer survivors who had completed their radiotherapy treatments. There will be translation from English to Mandarin if necessary. Admission is free.