Hello All,

Dad just started his Tx on Monday. I get the feeling that some of his healthcare "team" are too "buttery" with their advise to Dad. He was told at a dental appt. that he shouldn't be too bad at all since he will only undergo 25 x IMRT. I know everyone is different - I do realize that. Can any comment on this same Tx plan? I see in most of the profile that I read that the Tx run 30, 35 etc., some with chemo, some without. Is this advice accurate? She made it seem like a breeze. I just hate the thought of someone blowwing smoke up his a*#!! I don't think it should be all gloom and doom, but I don't want him to be blindsided either. I asked his RO about the PEG - he was against the idea at this time since Dad will only have the radiation on one side. He did point out that the TX will probably permanently damage his salivary gland on the right side, but his left side should make up for it. He mentioned something about a nasal tube if it was needed - can anyone comment on this? His RO seemed to paint a very descriptive picture of what Dad may endure with his skin (burning, weeping etc), so I think Dad is prepared for that.

I have talked in great length with Mom about what Dad wants to know and he wants to cross each bridge as he gets to it which is fine. I just feel that some people have downplayed things a bit - maybe this best? I just see Dad really clinging to the good stuff. I hope it is easier for him than most - in fact, I pray for it. Maybe 25 Tx is not as damaging? I know Dad get really frusterated when things change, he has always been an impatient person. I've taken on so much information and I'm just sitting on the sidelines watching and waiting......

Don't mean to ramble, just wondering if anyone has insight on this same Tx course in the same location.

Given what you have posted as his stage he is a pretty early find, and the doctor's treatment may indeed be adequate. That does not mean there will not be some side effects, but certainly likely less than most of us have had to deal with. What I am always afraid of are the things that do not show up on the scans, the micro mets.

You mention chemo, and perhaps with no involvement away from the original lesion there seems to be little call for the use of it except prophylactically. Some institutions are very conservative in their treatments, others, particularly the big guns, tend to lean in the other direction. You don't mention where he is being treated and if this protocol is one derived at by a multidisciplinary team.

Hi Brian,

Dad is being treat a major CCC here in Ontario (Princess Margaret) - definitely one of the best in the country. He's lucky to be cared for at this facility. His course of action was derived from a tumor board. I too am confused about the micro mets that don't show up. Is there further testing we should push for, or is it best to wait for the follow-ups as they come?

Most of us didn't begin to suffer the evil effects of rad Tx until the week of the 20th Tx (4th week)and even then they start off mild and get progressively worse culminating a few weeks post Tx which for most is week 8 to 10 so assuming he's getting the same dose each Tx that most of us got, he should escape the worst. I have never encountered one on this site that only had 25 and everyone can react somewhat differently to the same Tx so lets hope what I just said comes true.

As far as the nasal tube, which I had for 2 weeks in the worst part of my reaction to the Tx, that being weeks 2 and 3 post radiation, I wouldn't think that he will need one due to what I said in the first paragraph. If he does, it was not a big deal for me even as bad as I felt and it actually helped me hydrate and nourish myself at a time when I definitely needed outside intervention. It goes in without surgery and in my case with minimal discomfort; was easy to use and keep clean and with my doctors approval, I pulled it out myself.

In Dan's case he had lost his sense of taste around that time and his throat was sore and he was doing the choking mucous thing, but all things considered and compared to where we are now - he would felt like a lottery winner if he had been able to stop at 25.

I don't know if age makes a difference though. You may have said and I just forgot, but what is your dad's overall health aside from this? And how long has he been a non-smoker? I don't know much about this, but I think I read it can be harder on smokers???

David you are one strong stubborn guy - I bet your family had their hands full with you during treatment.

Yes my wife and my Office Manager should be nominated for Sainthood. I know things look bleak now and they did for me as well (and almost all of us) but it wasn't long after Tx that my wife began telling everybody that I must have faked having my cancer. What Dan and you are experiencing are mere speed bumps in the long rode of life.

Amanda your Dad has won the head and neck cancer lottery. With that said the only thing I would add is that everyday is different and your Dad needs to understand NOW is the time to learn about patience. My husband has learned things about himself that go way beyond just patience. I am a PEG believer but without the chemo things should be ok. We will all be following your post and hope that everything is easier than expected.

Cindy

I think given where he is they likely have done all the necessary testing to get him through a tumor board, though you don't mention what they did. Also having now told us that he is in a multidisciplinary facility, been through tumor board etc., I wouldn't be second guessing the team. I hope that he has indeed ended up with a treatment protocol that will make his passage through all this short and easy, with a rapid return to a normal life. Unless he has a horrible reaction to the radiation that produces tons of mucocitis and inflamation, he may very well even dodge the PEG tube, and if necessary get by with a nasal tube like David did.

Dad's testing thus far has been: 1. biopsy 2. endoscopy 3. chest xray 4. CT. His RO & ENT are of the opinion to hold off on ND. Dad does have a heart condition (Angina), not sure if this had a bearing on course of action for Tx. Perhaps he will have more rads added at the end if required. I believe he's in good care, however I am puzzled by the 25 x IMRT - I have not seen this course of action with anyone else on the site. I guess we should accept that he's at a very early stage which of course is AWESOME considering most aren't detected until later on. Dad will stay at the lodge on his own until the end of next week. He's been doing pretty good, he's not a shy man - he has been talking to everyone (the lodge cares for 105 patients). They do have 24 hr. nursing and doctors on call - the staff has been wonderful thus far. They arrange the shuttle back and forth to the hospital for his Tx appointments (it's about a 10-15 min. drive one way). The facility is small, very comfortable setting. The food is served cafeteria style and is pretty good. They certainly accomodate to most special diet needs (including soft foods, cream soup, Boost, Ensure etc). The nurses will be watching Dad a little closer because of the challenges that Tx for head & neck cancer create. They will monitor his weight and they do communicate back & forth with his "team" at the hospital. But, it is certainly not a "hospital" per se, patients are required to care for themselves for the most part. When he comes home this weekend we will make sure he is up for another week on his own - he should be ok. If and when he needs Mom down there with him, we are only a phone call away. Mom is going to continue to work until that time. One day at a time.....

Amanda,

This all sounds like great news. It does feel a lot better when a plan is in place and treatment starts. It will all be over before you know it. Just stay the course. He will probably be seeing doctors every week to monitor his progress. That is a good time to ask any and all questions that any of you have, and let them know if there are any concerns or problems. It sounds like you have a great team in place.

When you and your mom come into town to see him, can you guys leave and go to a movie, shopping, or go out to eat? Just something to think about so he doesn't get bored and pass time quicker.