I am grateful to have found this forum! My dad was recently diagnosed(April 16) with SCC BOT. I am not savvy with all the abbreviations, so please bare with me. We have already met with radiation oncologist, and he has an appointment next week with chemo. He will have 7 weeks of tx total= 5 days a week IMRT and 1 day a week of chemo. My dad is healthy, 66 years old and golfs daily, but is not a good eater! I am worried that this will be disastrous once tx begin. I am looking for ideas to keep him going as he swears he will be fine and refuses (for now) a PEG tube. Any suggestions? He seems to be in denial about the whole situation, and I don't know how to get him to understand how serious this is! Any feedback is greatly appreciated.

I have sent you a private message (PM). It has a list of common abbreviations we use frequently around here.

One of the most important things that needs to be a major focus is nutrition and hydration. If your father isnt a good eater now, he needs to turn that around and become a great eater immediately. His daily intake must be at least 2500 calories and 48 oz of water daily. That is a minimum! Anything less and he will soon begin to struggle and end up with dehydration and malnutrition. Im not trying to scare you but this will happen. It happened to me and I was hospitalized a few times for it and that was not easy on me or my children. Right now he should be bulking up and eating all his favorites. His sense of taste will change temporarily and he will soon miss all his favorites, so he needs to eat them now. For many swallowing becomes difficult, even if he gets a feeding tube and struggles with swallowing he still must do it to preserve his swallowing function.

Since your father has BOT OC, he may be HPV+. If this hasnt been checked, ask about it.

If he hasnt yet been to the dentist he needs to go ASAP and get any questionable teeth pulled before starting treatments. Flouride trays need to be made and started to be used.

A full blood count including thyroid should be done now.

A hearing test should be done. Most of us have gotten cisplatin which is known to cause hearing loss for some. I was not affected but I know several who were. If he noticed anything different he needs to speak up immediately as this is permanent.

Thats just some of what he should be doing. Best wishes with everything!

Do yourself a favor have a nutritional drink on hand for him... Boost - ensure - high calorie and high protein - pick up some protein powder to mix in as well. He'll likely need it after the 4 week mark. Good luck - it's a long haul but he'll get through it if he's careful about nutrition - how well he does has a lot to do with how he eats and drinks. Dehydration and malnutrition compromise healing. Take care.

It is a lot for the patient to process -- the fact that he has cancer, the fact that the treatment is going to be tough, etc -- it is also hard before treatment begins to even imagine how it will feel like. Give him the information in small doses so that you will have a better chance of getting through to him.

In the meantime, take him out for meals or cook his favorite meals for him. Fatten him up in preparation for the treatment. It will also be a while before he can eat his favorites again.

Most CCC have a multidisciplinary team, including a nutritionist, who will access his nutritional needs, and a speech and swallow therapist, who will instruct on exercises to do for the mouth, amongst other info, both who should see him before starting treatment, during, and after. If not, maybe inquire about them. Besides hearing, some chemos can effect vision, although uncommon maybe, I suggest the same in seeing an opthmologist before, during and after treatment to monitor any changes, in addition to letting the treatment doctors know.

Good luck with everything.

Do have them check for the presence of the HPV virus. It is common with a BOT primary and I assume mets to one or ore nodes? Getting the chemo weekly is better IMO as it usually lessens the chemo's side effects and so far no study has determined weekly vs the 3 Big Bag method decreases the chemo's impact on the overall treatment.

I did not get a PEG and I'm waaaayyy glad I didn't. The Tx most likely won't start to get nasty until week 4 and it seems to get worse progressively until appx week 3 POST Tx. There is an alternative to the PEG and that is the nasal tube so if it does get ugly then consider that.

Who will be his Caregiver?

Where is he being Tx'ed?

If he wants to talk PM me.

What chemo is he getting?
Kathy

Thank you all for the input! I am still figuring out all the treatments he will be getting and the order of it. Here is what I do know:
Bx being redone today as the staging was inconclusive. He will have a port and feeding tube placed before starting treatment.(Dr orders, she will not start tx without tube) Monday will be his first IMRT session and chemo to follow during the week sometime. There has been quite a lot of confusion with appointments and the order in which things are to be done. PET scan shows mets to nodes. I am not sure yet the type of chemo he will be getting. The hard part is he lives out of state from me and I can only travel to him every couple of weeks. My mother will be his caregiver, but I am helping as much as I can. He lives in Nevada, and to be honest I am not 100% confident with the treatment center he is going to, but he won't explore other options as he wants to be home.

I am sure all of this has crossed over into another category, I apologize for that. I will continue in the correct categories in the future.

Most likely he will get Cisplatin but it usually is given right before the first radiation Tx the first time and then can be given 2 more times 15 days apart or weekly which it sounds like they are doing.

I PERSONALLY would not be treated somewhere where the PEG was mandatory but I don't want to restart the PEG WARS on this site. I agree with the port and wish I had been given that option pre Tx. I also think they should provide at least weekly IV's for hydration but that's still not the norm.

Curious why staging requires another biopsy. You state Stage III which is the normal staging for his presentation so what do they feel they are missing?

Also REALLY curious why they have not tested for HPV since his presentation equates to a 70% chance that HPV is the cause which usually results in a more favorable outcome vs non HPV related.

David-
The reason for the biopsy is the 1st one came back inconclusive, but based on the PET scan, the Dr. Is assuming stage 3. In order for the Dr to set up the proper treatment she felt another biopsy was in order.

His radiation oncologist mentioned possibility of it being HPV related, but didn't feel the need to explore it further since he would treat it the same either way?

The timeline for his treatment has gotten a bit unorthodox since there was confusion between the two offices coordinating together. He is starting radiation Monday, and will have first round of chemo sometime during the week. We were told it doesn't matter when the chemo is given.

All of this is so overwhelming and I can only hope they are doing things properly.

Thank you so much for your input and questions, they help me to know what I should be asking!

I never had an HPV test in 2009, but for peace of mind, and possible availability of future HPV treatments, vaccines, they may be working on, even treatment qualifications, I wish I had. They can easily do a HPV test from the biopsy. You mention two offices, so these sound like separate practices, not a multidisciplinary team of doctors in the same CCC? I went this route once, and formed my own team, and it's a lot of legwork, paperwork, updating one another, and gets confusing even for doctors that may be consulted with in the future, and can see their heads spinning explaining my treatments, so I wrote out a time line, and give them that. Good luck.

I will mention HPV test to them. Yes, where they are in Nevada, it is a team of Drs but they are in separate locations, they work "together" but it's not a seamless operation unfortunately.