We spent a half day at the hospital from 8 am to 6 pm on April 15. I used to think of tax day as a day of suck...this added a new level. I met the dentist, the chemo and radiation doctors. They have several options of treatment. Pain and suffering, suffering and pain and a combination of both. We recorded the visits and that is very helpful.
Notes from 15 April 2013 consult
The dentist: no need to remove teeth…brush and floss more and get a cleaning before starting the program…chemo makes you immune suppressed and infection is an issue. It also causes mucositis. Radiation kills salivary glands and that make you have dry mouth and makes it harder for the body to break down foods and keeping a clean mouth (buffering acid)…”Taking care of your teeth will be your new hobby.” One patient used ketchup, mustard and lemon juice to mitigate damage…must brush the teeth afterwards. The radiation may make the saliva ropey again less effective. Must do exercises to keep the mouth able to move…really bad stuff includes radioostionecrosis which is where the bones (jaw) die and that makes all kinds of issues…maybe have to cut out the dead bone and replace. Bioteen helps with dry mouth. High fluoride toothpastes and trays to put your teeth in…floss more...like brush and floss three times a day. Using waxed floss works better. They recommended a cleaning before starting the treatment and increasing the frequency of cleaning to once every three months. Delta Dental personnel said basically no way…but I kept pressing and got an address to send complaints.
The chemo doctor discussion: talked about the treatment options.
1.a. Standard of care. Chemo radiation…cisplatin is the type of chemo drug once every three weeks radiation Monday through Friday
1.b. Change the chemo to once a week same cumulative dose
2. Different chemo drug
3. Clinical trial one front load chemo for six weeks then standard of care
4. Clinical trail two chemo for six weeks, then surgery, then evaluate…no cancer = done…cancer still present = standard of care
http://www.cisplatin.org/
Cisplatin causes lots of problems including nerve damage, hearing loss, kidney damage and others. My biggest concern is the hearing loss/nerve damage. My hearing is already damaged and more damage might permanently deafen me. This would be a serious quality of life issue. The anti-nerve gas pills we took in the first gulf war Pyridostigmine bromide (PB) caused tingling in my hands and feet. I have tinnitus already.
Radiation doctor: intensity-modulated radiation therapy (IMRT), is a specialized method of delivering radiation so that the beam enters the body from many different angles to get to the tumor with pinpoint accuracy while sparing much of the surrounding healthy tissue. This hospital specializes in the treatment of head and neck cancer with this method. This doctor does this treatment continuously.
Seriously strong side effects of radiation therapy…8 out of 10 people have a feeding tube because it is too painful to eat. Nausea, pain and damage to the lining of the mouth, the throat and jaw make it hard to get enough nutrition to heal. Permanent damage to the surrounding tissue can make opening your mouth hard; the salivary glands are going to be sacrificed. Salt and baking soda rinses help keep it clean. “Nutrition is the single most important thing in this process.”
The radiation doctor has a fifty pound brain.
Pluses on my side: I am young and generally healthy, my tumor tested positive for HPV which has a high cure rate, and I have an awesome support structure; people from all over praying for me, loving on me and helping in so many ways.
Minuses against me: tobacco use, nerve damage, hearing loss. Other drug cetuximab has less track record but better side effects.
No comments:
Post a Comment