Michelle- Neil had a re-focus towards the end of his radiation also. They try to narrow the field of radiation to spare the surrounding area. That's how it was explained to us. Neil's tastebuds are starting to come back now. He is about 4 months post radiation. He is also starting to get feeling back in his face which is something they said might not happen. Nerves have a mind of their own sometimes. You can't be everywhere at once. Maybe you can call the doctor for a recap of what you missed.
Sue

David, (Sorry Michelle, to hijack the thread for a moment)

I can understand why a general RO (and their nurses) would give info regarding taste buds, saliva, etc. that is not accurate as far as statistics is concerned, but for dedicated H & N docs and there crew to do that bewilders me. After years of seeing only H & N pts., they should know that these functions don't return that quickly....and that each person is very individual in their recovery timelines. I would think a better answer would be "while we see faster and slower recoveries, the average is blah, blah." Surely they have records to show to give them a good idea about these things???

Deb

I had almost exactly the same regimen -- 35 IMRT, 4 "Boost" sessions, 8 Cisplatin. My rad sessions were distributed a little differently. The first 28 or so included both sides of the neck, the tongue/head, and the upper chest. After about 28, the upper chest was eliminated. After 35, they still did neck and head, but added time to the tumor itself.

So far so good!

Michelle:

Its much better to add treatments now than later. From my understanding, radiation can only be done once to a particular area. The last few radiation visits for me were long ones because they focused more on the 2 cancer spots I had.

I would like to know what side effect he has that caused them to stop the Salagen. The fact that he is still has saliva is allowing him to eat even if he can't taste it. I took Salagen all through treatment and for two years after. Also I lost all my taste except salt by treatment 9 and it only took a few months to get most of my taste back. However, I couldn't eat any dry foods like bread or crackers, all foods had to have moisture and that was on salagen. I can't imagine what it is like without it. Also , use plastic utensils to eat so he does have metallic taste. I would question why the stop of Salagen.

Take care,
Eileen

What I have found out so far is the the reason for stopping Salagen is the mucous and hoarseness - these are both rare side effects of the drug. I still don't think I agree with stopping it when you compare risks/benefits... I plan to get a 2nd opinion on the salagen from ENT and MO. The RO also said he thought the Salagen could be affecting taste buds... I can't find any thing to support that.

Are you at a major cancer treatment center? We all had heavy thick mucous. I was given Guiafenix (sp) for it and it helped some. We all lost most our taste. The fact that they are frying his saliva gland would make me want to continue the Salagen but I'm not a doctor.

How many H&N patients has the doc treated? Has he given others Salagen? How does he account for the loss of taste and mucous in his patients not receiving Salagen? Also there is no requirement that he take 4 pills a day. My recommended dose was 3-6, whatever worked best for me.

One other thought, did you rent the suction machine? I'm certain that would help during the day. Biotine mouth spray also may help in addition to the baking soda/salt rinses.

Take care,
Eileen

Deb,

That was the most disturbing part of my Tx, i.e. his nurse telling me that I was really having a tough time and my taste and saliva should return within a couple of months and I naturally assumed she knew what she was talking about.

It's real funny yy first post on this site was about 2 weeks post Tx and I was having a tough time and I described what I was going through and what I was able to eat and how bad I knew I was doing and within minutes I had like 8 or 9 replies telling me that I was normal and if anything, I was better than normal. Man that really opened my eyes and gave me a mental boost when I really needed it. I just couldn't believe Trotti's nurse lead me to believe that I was doing so poorly.

Hopefully David, given your propensity to tell it like it is, you have educated her??? When you are in the throes of treatment, the last thing you need to hear is erroneous and far too negative information. I would hate to know that she has done that to more people. Anyway, still amazes me that she could be so wrong when all she sees is H&N patients.

Sorry again to hijack the thread..I will turn it back to the subject at hand.

Deb

Hello Everyone,
Greeting's from Sand Mountain,Alabama. Have been reading your posts and they encourage and lift my spirits. Was DX: 0207008,
SCC Rt. tonsil,Rt. neck dissection (3 lymph nodes removed),stage 1va orophaynx T2N2MO. Begin 30 rns Rads/3chems next week, have been putting down the H2o and liquids, and eating good, dental work done today for the floride trays. Hopefully won't have to get the PEG tube ,so plenty of protein shakes , went SRT climbing today at a local cliff. Looking forward to completing these treatment so I can get back to work down in canal zone. Will remember y'all in my prayers.
Rick