4 to go

We'll I'm feeing much better today. Throat is still awfully sore but seems like some of the mucus stuff in my mouth has subsided a little. I'm now thinking some of the excess mucus may have been caused by allergies. All our trees in the area are in full bloom right now and heavens knows what else. I never had allergies since I moved away from North Carolina and maybe there back. Anyway, whatever the case may be, mucus has subsided a little and I'm feeling much better. What I am feeling is serious dry mouth...spit looks like cotton balls. Fun fun!!!

Neck is really really red and looking like a sunburn from hell. Still using the Xclair cream and that seems to be working. Marjie noticed this afternoon that it's beginning to peel but I should be able to deal with it.

Saw Dr. Sinesi today after treatment and he said again that he finds it hard to believe that I've been able to make through all these treatments without a break. He said that as far as radiation therapy goes, head and neck is by far the worst to get and he can't even remember when someone was able to make it without a break. He also gave me some words of encouragement about the healing process and said I should start seeing positive results in 4-6 days. He said that the mouth would be the first to heal. He looked inside my mouth and said everything looks good/normal...he's seeing lots of redness and whiteness which is worse than the red, but says everything looks on track to heal properly. Said that I should start feeling much better after 2 weeks and be able to start eating again and then by a month I should be at almost 90%....


That's all for now, more to follow...

6 sessions left, but now what????

6 more to go. I can hardly wait, but I'm feeling worse and worse as the days go by and now starting to ask the question to my docs as to when I can expect feeling better. Unfortunately, I haven't got one good sign that things will be getting any better for me for at least a month or so. In fact, what I'm finding out is that things may and more than likely get worse! Much worse. This thick mucus stuff in my throat is the worst. I'm constantly gagging and hacking the stuff up. Sleep is now what it used to be as I know wake every hour or so to spit up in the cup or run to the sink to hack up a loogy. My throat is so sore I haven't been able to put anything down it in such a long time.
I finally went to my Google Groups website and have been asking other tonsil cancer patients about what their experiencing and unfortunately, again, I'm getting the same kind of responses. Here is the latest I received from Stuart this morning:

"This is a message I sent Dave which may be helpful to others going through the later stages of treatment or the first few months thereafter.

Hi Dave,
My name is Stuart. I'm a physician who was treated recently for tonsil ca so I have been through exactly what you are describing. I finished IMRT at the end of October 2006 and was absolutely miserable with that thick mucous you are describing for about 2 months. It will choke you and it is very difficult to expectorate.

It is due to several things: Firstly, the mucous from your nose will drain down the back of your throat and will not be thinned out as there is no saliva. There is an increased production of nasal secretions that will probably linger for the next 2-3 months following completion of your therapybefore it starts subsiding. Secondly, your saliva has 2 components: a serous component which is thin, and a mucinous component which is thicker. Both normally work together to breakdown your food and lubricate your mouth and throat. The thin or serous component is what is usually gone after radiation therapy. You are left with the mucinous or thick component plus the mucous draining down from your nose. The third thing is due to the ongoing radiation. The tissues in the back of your pharynx are swollen and inflamed and this makes it difficult to swallow anything. Unfortunately, I found out that this does not go away within a week or two after completing radiation. I have spoken to several radiation oncology colleagues and what happens is that the radiation continues to work its effects on your tissues for months after you finish treatment. It is as if your tissues absorb the radiation and then slowly release it. Hence, you will be miserable for the first 2-3 months after therapy. I ended up needing my feeding tube for about 2 1/2 months after completing therapy as that is the really rough period. You will also be very fatigued for the first three months following RT.

What can you do?
Well, be careful around sick people. If you catch a cold as I did several times the mucous coming back from the nose becomes even more tenacious. If the mucous coming out of your mouth starts turning green or yellow ask your physician for an antibiotic for purulent rhinitis (I usually took augmentin elixir down the tube). Stay well hydrated. I put alot of gatorade down the tube with a toomey syringe (about 400 ml at a time usually 4-5 times per day). Make sure you do this frequently. As your mouth will always feel dry you will only know you are well-hydrated by the number of times you urinate, the volume and color. You want to make sure it stays fairly clear. You will not sleep well at all for the last weeks of radiation and probably the next few months after therapy due to the choking issues. I was frankly, too scared to go to sleep and sat up in a positional bed reading, as you stated with a bucket at my side. I would get out of bed very frequently, dragging my IV pole with pump for the tube feedings with me to the bathroom to gargle with initially undiluted biotene mouthwash, followed by hot water with a sip of biotene and finally hot water alone. This will be a very tough time for you and the repetitive trips to the sink will wear you thin and batty. Many people going through treatment become very anxious and depressed during this period. I would occasionally take a 25 mg benadryl tablet and cut it in half and crush it and put it down the tube. This will help a little in that it may control the thick mucous from the nose for a few hours, make you sleepy and allow you to rest a little but it can also dry your mouth. I would also take Ambien 10 mg (not the CR because you can't crush it) break it in half, crush it and put it down the tube. This will allow you about 2-3 hours of sleep before you will have to wake up and go gargle. I would then crush and take the other half of the ambien down the tube. I took roxicet elixir down the tube, it didn't do much for the pain but it did have a mild relaxing effect. I also wore the duragesic patches for a while toward the end of treatment and for about a month after as the pain in the pharynx was very uncomfortable. Whatever pain meds you take, make sure you cut the dose back slowly when you feel you no longer need them as you can have withdrawl effects. The very thick mucous you are experiencing now will be very debilitating as you can't swallow it (you'll start gagging and choking). Once the thick mucous from the nose begins to subside you will still be left with the mucinous component of your saliva which is thicker than normal saliva and not very helpful for swallowing or lubricating your throat. At that point, hopefully the inflammation will have gone down some and you will be able to swallow water. The dry mouth may not seem too bad at that point but it will get worse before it gets better. As mentioned above the radiation continues to work on your salivary glands for months after RT ends. Typically, saliva production decreases for the first 3 months following RT and then plateaus at its nadir for the next 6-9 months before it starts to come back and then it can take up to 2 years before whatever you are going to recover (I've been told with amofostine and IMRT about 60-70% of what it was before treatment but not everybody recovers the same amount). I hope this helps somewhat. I always felt that that having the best information helped me cope but it is still very tough, particularly the phase you are going through.
Best wishes,
Stuart"

Boy oh Boy does that worry me. So even though I'm almost finished with the radiaiton it's looking like I might not even be close to being out of the woods! :(