The following is an overview of Johns Hopkins paitinet information day submitted by Dimos K.
(These are organized notes from the day with to the point emphasis....if you would like more discussion on any of the topics at one of our meetings please let Dwayne or Kim know)
Head and Neck Cancer Day at Hopkins:
Challenges of living with a Laryngectomy
Not a lot of product manufacturers for people with this disease
Expensive products and insurance issues
Asked some questions:
a) Improvements in treatment with proton therapy and neutron therapy.
b) Question about salivary gland protecting drugs.
PANEL
People with a need for radiation treatment need dental evaluation
Head and Neck Cancer Surgeon...primary role is to identify, diagnose, and treat. Followed by surveillance to eliminate chances for an unknown recurrence.
Multidisciplinary approach....
Dr. Sanguineti has 20 years experience, spoke of planning and large team aspect of radiation. It is not really a matter of machines but a matter of the team work and the treatment that is very important.
1) what do you suggest for mouth sores from radiation?
During radiation they are unavoidable. Keep mouth clean possible because of frequent infections...a number of studies to see if there is a profilactic agent to prevent mucositis does not seem to work well. Baking soda/salt seems to be a good one. Cafesol seems to improve
situation. Pain medicine is recommended early to be prepared. A clean mouth is a health mouth. Planning tries to limit oral cavity dose. Unavoidable to have a significant dose in some part. Medications to alleviate pain. Eating issues are managed individually. One thing that needs to be clear is that over the counter mouthwashes do not show any better performance. Topical anesthetics are also useful.
A cancer diagnosis gets a classification ie T2 N0 M0. A shorthand notation that offers prognostic information but does not work well to predict in HNC patients. Ask physician what is favorable and what is not favorable.
HPV tumors actually have better outcomes with large tumors. Several subsites i.e. base of tongue and tonsil can be involved.
Oral obturator is a prosthesis to replace missing structures and the maxilla. A denture-like appliance fills the hole and allows the ability to swallow and talk. An obturator can be changed over time as a patient heals. Some obturators can last for 3 – 10 years.
Next questions: Risk of corotid stenosis after radiation. This was not considered for a long time but it has been shown to have a slight increase risk of brain circulation. No good data to say how much should be delivered to the corotid. In some places like Duke University a doppler ultrasound is done to measure this ability. Now that younger patients are getting these cancers the expectations are that there will be an increased emphasis on it.
Radiation does not seem to have any direct effect on memory or brain functions. Loss of cognitive function due to tomotherapy to the neck and lymph nodes. Brain radiated patients who have passed the development stages don't seem to show much affect either. Additionally patients going through treatment become de-conditioned for a while and can be a reason for a neurological decline. The corotid artery is associated with stroke. Affect of blood pressure instability due to radiation to the carotid. IMRT cannot do this because the dose gradients are not that sharp.
Can radiation affect the spinal cord and peripheral nerves? Rare to see spinal cord doses cause problems. Chemo drugs seem to affect neuropathy. Cisplatnin is shown to cause neuropathy in high doses. If you feel this is an issue (due to tingling) then it indicates that dose is too high.
Tooth care after radiation...permanent affect on saliva glands will cause dental problems especially due to saliva, even the quality of saliva. Acidity due to bacteria will make changes to tooth health. Reduced blood supply to jaw after radiation. Some bone cells will die. This is an issue if there is surgery or tooth issues. Removal of dead bone may be needed. Fluoride trays are needed if the floor of the mouth is radiated. Becomes a part of the everyday routine. Dentists with experience are needed to make sure to eliminate tooth problems. Remineralizes the tooth structure in the mouth and at least helps to limit mineral loss.
Hyperbaric oxygen is used to improve blood supply to areas of concern. If you have had hyperbaric oxygen once, will you benefit a second time around? Some patients have 10 dives before and 10 dives after.
Fosomax and increased potential for osteodental necrosis. Don't know how common the problem is.
Cancer patients who get IV bisphofinates by mouth or IV. Bisphofinates can affect osteodentonecrosis.
Loss of saliva glands can be affected by acupuncture. Saliva mixture components are different.
What about dental care after radiation? It varies completely on surgery, dosing, and radiation field. Dental implants are now allowed...based on bone, saliva, and other items.
Subtle changes in the tissues. 1 out of 4 patients will deal with xerostomia.
Surgeons opinion for total laryngectomy for severe swallowing problems. Will this improve someone with bi-lateral vocal cord paralysis? Total laryngectomy is avoided at all costs due to it being quite devastating. Scar tissue can cause a non-functional larynx. Swallow function is valued better than speaking function. Speech can be rehabilitated. Total laryngectomy and swallowing tissue reconstruction can be done. Only done with patients who cannot swallow entirely.
How are emerging radiation options improving survival? Neutrons have been used but destroy all the tissues and have been used only for very resistant cancers. Results for those treatments have been superior but side effects are very bad. Protons have a very appealing physical behavior because they stop at a particular depth. Human body moves, so it is tough to control dosing. Not used routinely for these types of cancers except for children. Children can have cancer in very peculiar structures such as base of skull. Even small doses in developing brain can be critical so protons are preferred.
Rational for removal for tonsils- Typically removed for issues due to snoring or infections. Also asymmetry can be dealt with due to worries of cancer.
Panel of HNC treatments dealing with anxiety diet physical spiritual and speech.
Is there anything special to eat during treatments? Eat calories protein. Don't overdo vitamin supplements can reduce treatment outcome. Eating and nausea...calorie dense foods. Lubricate food with butter. Eggnog as a supplement? Very calorie-dense and useful to get necessary nutrition. Immune system yogurts are quite helpful.
Radiation sores can be helped with biotene mouthwash.
Feeding tube foods...should vitamin supplements be added? Needs are typically met
Clinical depression is a disorder that needs to be treated. How are people physically? What has been normal and what has been different. A newly diagnosed patient with trouble is normal. A few days of feeling down is normal. When people dont feel well their mood also deteriorates. Usually when people are feeling low and physical symptoms are present...then physical issues are dealt with and mood is watched. Medications used to treat people can also cause depression too. Adjustment to cancer medications is one way to deal with this. If people say they are normally a happy person but seem to have low moods continuously is a problem. People can most often feel demoralized...People can feel sad and down and not want to do radiation anymore. A support system for these brief periods can include paying close attention to physical symptoms. Radiation can keep you feeling down for a few weeks post treatment. It can cause further depression and frustration.
Caregivers can feel guilty for wanting to treat themselves well. This is a frequent issue. Caregivers are considered very important and on an on-going basis for counseling. Caregivers have an online community (cancercare.org). Respite care is an out of pocket cost (about $15/hour) and needs to be more available. A big list of home health agencies are in the area. Patient and family services suite on lobby level of Johns Hopkins is a good resource.
Chaplain said that she dealt with a patient who was at her wits end. She needed to talk and get some things off her chest. She needed someone to hear her out and to not make her feel guilty for needing help. Encourage people to accept help from friends and family. People want to help and it is okay. Caregivers can also have difficulty giving up control. Some stories include a friend who helped by creating a website to get other friends to volunteer and to update on information.
TEP allows people to talk after a total laryngectomy. What other options are there that provide people the ability to talk? Burp talking can actually allow people to speak using air from abdomen. Ultravoice is a type of electrolarynx that is supposed to sound natural. The sound comes out of the denture plate.The results are mixed and a new model is a bit better. It costs about $5000. A standard neck type is $500-$600.
My physician recommended a g-tube....What if I dont need it? It does eliminate the pressure to eat. Some patients say that it saved their life. During treatment you don't want to lose any weight. Important to keep your nutritional intake going. Hopkins works to keep you swallowing. Folks who have been able to get through treatment still recommended it after having it done.
How quickly after larygectomy are patients allowed to use an electrolarynx? As soon as surgery heals.
Coping mechanisms for dealing with recurrence questions...A primary cancer patient deals with hope in the face of our own mortality. It reminds us that life is short and can change overnight. That issue changes you and potentially in a good way. There is a great class on mindfullness meditation. Cancer can stay in your periphery but not let you stop living life. That uncertainty we all live with. Spiritually an organization called hopewell. They have programs for every diagnosis and support groups. They offer an 8-week class to help you live life in the moment. Despite all the things that patients go through, the feeling of loss of control is the biggest thing. There are not a lot of good strategies except to help people understand that they need to change the way people think. This forces people to remember that they have choices, choices to stop doing what they want or to choose to do things differently. This may open new opportunities that being creatures of habit sometimes does not allow us to do.
Once you get over the hump of knowing that you will not have your old life...you can embrace a new normalcy. Some changes are frustrating and some are even better so it all evens out...Some things like eating out changes...asking for more water at the beginning of the meal...you will appreciate the little things so much more.
Another audience member mentioned that facing challenges in life changes expectations for the future and explaining that is helpful for the person doing the explaining. It is hard letting go of a professional position. Leaving a job makes you realize that it is okay to have to take care of yourself. This transition can cause people to try to hold on too long. People can get back into their work but need to understand about stress.
Dealing with teenage children and young children? Any recommended strategies to understand cancer? (Note Added by Dwayne A.) I found it most helpful for children to be honest...it is important for kids to know what's going on, they may not need the full details but kids are resilient and intelligent beings. And truth be known they probably deal with things better than us adults with all of our little hang ups on who and what we need to protect. Hiding behind a curtain only limits the number of peole who are available to support you. The greatest feeling in my life was seeing how many people wanted me to survive!