Hi Scott and Lisa

My Father age 69 finished his treatment June 2/06 he had 35 IMRT rads and 3 chemo's (Cisplatin) for base of tongue and nodes both sides of neck.

I too did so much research before hand and it made me sick with worry. Sometimes I felt the more I read the crazier I got. Then I started chatting online with others that had been thru it and that helped alot. For the most part his treatment seemed the standard treatment.

I felt the dr's didn't tell us much about side effects of radiation (I knew alot from my research). Well the chemo dr was very upfront and at first my Dad was not going to have the chemo because of what he told us; (one concern was hearing as he's already deaf in one ear) but the Rad dr said she felt it was needed to get the cancer out of the nodes; so that was all he needed to hear and he did it.

My Dad didn't want to know too much about what I read and said he'll deal with the treatment as we go along. I didn't want to tell my parents things that would worry or stress them. The first 3 weeks were pretty easy; then he'd say and still says 'they didn't tell us this or that'. I agree. Sometimes I think learning as you go along is best; as you get so crazy sick before hand with all the reading; then I think (well for 'me' anyhow; don't think my Dad feels this way) but treatment seemed smoother compared to what I read. So I'm not sure what is the best approach.

My Dad is claustrophobic and wearing a mask for rad was something he thought would be very hard to do. However he got thru them all. No it was not fun but he did it.

He did very well in treatment. He did all 3 chemo's; yet many can't have the 3rd one if their bloodwork is not up to par. (His hearing is distorted from chemo).

My Dad has a high tolerance for pain and does not like pain meds. He ate by mouth right up till about week 5 of treatment (which is great) then started using the PEG. He didn't take any pain meds till about week 7 of treatment and used them for about 2 weeks. Two weeks after treatment finished he started 'slowly' eating by mouth again. The PEG is a great thing and; some of the reading had me sick thinking about it; yet my Dad welcomed it with no concern.

His biggest issue during treatment was the phlegm that you get around weeks 5 or so. That really bothered him and getting it up and out was very hard.

The can feeding sometimes made him feel nauseous; but he managed to get in at least 3 to 4 cans a day (not many calories). He tried a few different brands. He lost 50 lbs but had the extra weight to begin with.

He had a few road bumps; we went to an emergency 2 times; once for a blood blister on the lip; they snipped off and sent us home (easy). Another time his leg was sore so the dr sent us for an ultra sound and it showed a clot in the calf; of his bad leg; so we to get a shot of thinner at the emerg. They said it's common and not of real concern. He took thinners for a few months.

My family is very close and supportive everyone helps out. My mother and I took him to every treatment appointment (I drove) and we take him to every dr appointment, test etc. I have a binder I take at every appt; I keep notes, questions, articles, test results, dr's phone numbers, medications, etc etc (this is important as you tend to forget what the dr's say). One dr told me it's great that I do that and he wishes more people would. However I think other dr's get annoyed ha. And I ask lots questions all the time too.

Well it's been 3 1/2 months since my Dad finished his treatment. Not everything taste the best; and he can't always eat large portions but they dine out, from Indian food to plain old burgers etc. He drives again; and goes out on his own. He's doing very well, and looks so much better. He's still a bit tired and not quite himself yet and gets frustrated at times; his voice is hoarse and feels phlegmy (not like before) but it annoys him. I think he's doing great! (especially compared to what I had read before treatment). His mouth is dry, but not like some that I read of. We were told he had a large dose of rad to a large area. His neck didn't get that red; like some I've read. So like others have said; it's different for everyone. Now the more I read it seems there is no set treatment for this type of cancer.

His 2 month follow up scope showed tumour at base of tongue is gone. His MRI and CT scans done at weeks 7 and 8 (after treatment) show tumour gone and neck nodes have shrunk 50%. Even though he felt like crap during treatment at times and it was hard; when he got the results; he said the treatment was well worth it!

He had a PET at week 11; and it shows no cancer. Surgeon is suggesting Neck Dissections, to double check; but we are still thinking that one over (since the PET was all good). No one told us about ND before treatment (but again this is something I had read about).

Some Tips:

Get an IV pole and a Kangaroo pump (might be called something else there); it really made the feedings easy and more relaxing for both my parents.

Make sure your Dad rinses with club soda often thru out the day, everyday. The dr will also give you a rinse that soothes the throat and it helps.

Make sure he gets lots of hydration even if he insists not. My Dad felt very sick on week 7 last week of treatment, so they gave him daily IV hydration at the treatment hospital and that helped (takes a couple of hours each day, in and out) so you can always ask about that if needed.

Eat lots and well, now.

Sleep with a humidifier on; that helps.

Visit your father often; keep him busy and happy. Remember laughter can really help.

If he needs pain meds use them. Take stool softeners.

Stay positive and strong.

If you have any questions as you go along during treatment, please feel free to email me.

Best wishes to your father and your family!