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through with treatments

sse123
Posts: 3
Joined: Oct 2007

My husband had stage 4 base of tongue cancer. They did not operate. He had 45 radiation treatments and 6 chemo treatments. They gave him taxotere and carboplatin. He lost some of his hair, lost his voice, couldn't swallow anything. before treatments started he had a chemport and feeding tube put in. He has been on the feeding tube since about week two. He had his last chemo Oct 18 and last radiation Oct 30. Tomorrow will be two weeks since his last radiation. Nov 7 he swallowed some chicken broth. That was the first thing he had swallowed in two months. During his treatment, he didn't have problems with vomiting. He had problems with constant spitting - he could not swallow anything. It was like sinus drainage but he couldn't swallow it. At one point he was taking pilocarpine because the salivary glands don't work. At this time he has quit taking that - trying to stop the drainage. It has stopped substantially. He still gets choked on it occasionally - but not as much. He is on a Fentanyl patch and taking 1 tsp of hydrocodone four times a day (approximately). We would like to know from others who have had this type of cancer - how long does the sore throat last? When are you able to start eating? Do the salivary glands start working? What about the taste buds?
And all that good stuff.

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

I had cancer of my left tonsil. I received 35 treatments of radiation and 7 weeks of chemo 2 times a week. I did not have surgery either. The doc put in the feeding tube before my treatments began as well. It has been my lifeline! During treatments my mouth was hypersalivating, as does everyone's going through this kind of treatment. I had to use a suction machine, covered by my insurance. A few weeks after my radiation ended, my mouth started to dry up. Now I am 4.5 months post treatments and my mouth is still in the dry phase. I started eating broths about 3 months post radiation, and now can eat most soups. I still cannot eat regular foods yet and not enough soup to sustain my nutrition so I still use the feed tube. My doctor said to give my saliva another 3-4 months before it starts to revive. Until then, I can only eat things with broth in them or drink liquids. At least one of my salivary glands was destroyed due to direct hits from the radiation. However, the others should come back in a few months. Everyone that has had oral cancer & treatments goes through most of these things. It appears to be the norm. My sore throat went away gradually, and so will your husbands. My taste buds returned at about three months post radiation, which is when I started eating the broths. Everyone ahead of me tells me I am right on track and that things will get better. Someone in one of the posts said that the rule of thumb for post radiation recovery is one month for every week of radiation received. I still have until the end of January. That will make it seven months for the seven weeks of radiation I had. I am keeping the faith that things will get better as everyone has told me. I hope the same for your husband. Good luck and keep us posted.

sse123
Posts: 3
Joined: Oct 2007

Hey thanks for the encouraging response. Sounds like things will get better. I think we are just a little impatient. It's a long scary road. Went to the doctor yesterday and they ran the scope. Will do CTscan in a week or two. They say the tumor is 90% gone. You could see the burns from radiation and there is one spot that they will look at on CT scan. The doctor said that he was optimistic that the spot was more burns - but of course would not say either way definitively yet. Said that if it was tumor that it was small enough for surgery - but that he was optimistic. We will just hope and pray that it is gone and take it one day at a time. It is good to be able to talk to others who have gone thru the same types of things. Although everyone's treatment is different, this will give him a time-line to compare his progress with. This gives him hope that things will get better. We will be talking to you to see how you are progressing and wish you the best of luck.

3_Putt
Posts: 19
Joined: Sep 2007

It sounds like you're progressing right on schedule. I was impatient too.

On another note, I've read about doctors not removing tumors. I only know about my situation, but I don't understand. I had tonsil cancer and had a baseball size tumor removed from my neck. I couldn't get it removed fast enough. I wanted it GONE!

Good luck and hang in there.

sse123
Posts: 3
Joined: Oct 2007

The tumor was on the base of his tongue and they would have had to take most of his tongue and part of the jaw and we all agreed to try the treatment instead of such invasive surgery. You really don't know if the decisions you make are the right ones - but since we had never gone through this before with anyone we knew - we had to hope it was the right decision. We still think it was and hope and pray we were right. Thanks for your response. We are hanging in there.

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

I, too, had some other spots that showed up on my CT. One was on the upper lobe of my left lung. My CA doc was concerned about it since it wasn't there before, but my radiation doc said it was most likely radiation effects since it was in the field of radiation. I also have scar spots on my esophagus. I recently had a PET scan done and everything showed up clean so we're pretty positive that my spots were from radiation effects. Hopefully the spots you have are just scar tissue and radiation effects as well. Thank you for your well-wishes!

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