This is my first post. I am overwhelmed by the OCF �family� that has developed within this site and I feel privileged and blessed to be a part of it. I look forward to learning from those who preceded me in this process or going through it now. I also hope I can help by actively sharing my experience now and in the future.

My case in a nutshell is a diagnosis over the summer for SCC of the tonsillar fossa and base of tongue. It is stage III (I believe it is T1N2bM0) with relatively small mass/tumor around 1.75 cm, and three local lymph nodes involved. I had a tonsil and node biopsy today (Aug. 3, 2011) that will determine HPV or not. We assume it is HPV because I am a nonsmoker and moderate drinker. But I know HPV is not at all a certainty. It could be anything. I am age 56, 6�1� tall and weigh 187 with steady weight management for the past year or more. I am active and in overall good health.

There will be no surgery. Treatment is combination of radiation (x35 = 7 weeks) and Cisplatin every 3 weeks, scheduled to start Aug. 15. I am fortunate to be at one of the leading cancer hospitals in the US where all treatment is under one roof. The PEG tube is usually required if the person drops 10% or more of the start weight.

I have become more and more aware of the harshness of the radiation and I am grateful for all of the information at OCF. In addition to a great medical team I have wonderful support from my wife, co-workers, friends and church family. Especially my wife. We are committed to finding and implementing the best nutritional approach possible. It would be nice to avoid the PEG tube but we realize the greater, overall importance of finding the right combinations of food and fluids to get through the treatment phase and beyond.

My question today involves a dilemma created by the timing of the treatment. My son is getting married on Sept. 10 and my daughter on Oct. 15. Both are out of town weddings that will require some travel. The first wedding will not interfere with the daily radiation treatments. With a proposed chemo/radiation start date of Aug. 15, I will be at the end of week 4 for the first wedding and the end of week 9 for the second. It is possible the start date will move to Aug. 22, making it weeks 3 and 8.

My major concern is the October wedding, even though radiation will be complete. I am trying to determine if there is any reasonable chance that I will be able to make it and be functional at a very basic level (walk her down the aisle) at the Oct. 15 wedding at the end of weeks 8 or 9. My conclusion is that it would be almost impossible at the end of week 8 and very uncertain for the end of week 9. She and I are looking for a consensus that either points to �You are crazy to even think about it� or �You should have a fairly good shot at it.� How much would the PEG tube make a difference? It is a 2 hour nonstop flight, but too far to drive.

But I don�t want to have false hopes for the first one either. I realize the end of week 3 would be much better, particularly when factoring in the second round of chemo if it happens in week 4 (not sure yet how that works). I may not eat the same foods as everyone else, but I do hope to attend and host a rehearsal dinner and attend the wedding ceremony the next day, with a limited presence and role at the reception depending on what I can tolerate.

Sorry to be so chatty but this has been hanging over my head for the past few weeks as the timing came together for the treatment. I think I know the realities of the treatment and I am ready for it mentally, physically, and spiritually. But it breaks my heart to see it affect my children�s weddings. We all share the same ultimate priorities about my health. The main thing is to assure that I will be able to visit my children and my future grandchildren. Still, we are just trying to make informed decisions and are looking for insight from those of you who know from experience. I realize there are many of you who faced much tougher decisions with much higher stakes and I have not lost sight at all of how fortunate I am to have my family and a good medical prognosis.

Thank you for any suggestions and I look forward to contributing to the OCF forum.

Hi Dan,
Sorry to hear you too are having to make this journey.We all seem to progress differently through treatment but I'm sure you will be able to make both weddings.
We travelled 2 hours from our treatment centre to visit our children during treatment - and after. Kris was tired, but if you pace yourself and allow time to rest it is very doable.
The weddings will also give you something joyous to look forward to. Aim to be there, I'm sure you will.
Tammy

Big Dan!!

Welcome to OCF buddy, glad you found us, sorry you had to!

Well you probably won't like my answer at all because I'll sound like every Dr you've been in contact with...but treatment (tx) affects everyone differently. Many of us hit a wall around week 4 and then it get's the worst the weeks after treatment. There are others that fly through treatment like nothing even happened (those lucky bastards!) and don't miss a beat really.

I think if I were to plan it I would just make sure I kept really hydrated, keep nutrition up by sucking down as many calories as you can and hope for the best. It's all you can do really. I think everyone will understand if you get held up, if they don't let me call them for you and I'll let them know what insensative dicks they are

Anyway buddy, sorry it's not much help but keep your chin up and keep the good attitude.

Eric

Dan, welcome to OCF! I know you will find lots of guidance here to help you get thru this. The best way to get thru this is to focus on your nutrition and hydration. The better you do with that, the easier it will be. Start aiming for a minimum of 2500 calories and 48 oz of water every single day. Dont think its ok to be short one day and make it up the next, it wont happen. Once you get behind, you cant catch up. Everyone is different and will respond in their own way. Some struggle from week #2 and others sail right thru.

As far as the PEG tube is concerned, there are many here who are very vocal about what is right. I had one and needed it! Even with the tube, I lost 65 pounds and ended up being hospitalized a few times for malnutrition and dehydration. That was just me, I was one who struggled but I also didnt have a caregiver. This was my experience, I was one who had a hard time. Hopefully you will not.

Thru the Amazon link on the main forum pages you can order Carnation Very High calorie nutritional drink. It has 560 calories per can so it makes it easy to get all your calories in.

Im glad you have lots of support, you will need the help. Even if its just to give your wife a day off. Caregivers are angels, but they get tired too and need a hand. Make a list of every single person who offers to help with their contact info. Tell them when the time comes you will let them know what you need.

Now as far as the weddings go, thats a biggie! Its next to impossible to predict how you will respond to treatment. If I were you I would ask your doc about doing chemo weekly instead of the 3 big doses. I was scheduled for 3 doses but was so sick I only got 2. The third one was canceled. Several other members had their 3rd round canceled to. I really detest telling you this but honestly, for the October wedding there is a good possibility that you wont be able to attend. The last 2 weeks of treatment and the first 2 of recovery are the hardest part. Many patients lose their voice around that time. Mine was gone for 3 weeks. I also was hospitalized. Around that time I was so sick I could barely walk and had my son push me in a wheelchair into the hospital. If I had to travel on a plane there would have been no way I could have done it. Even being around so many people and all the germs isnt a good idea. Your resistance will be low and crowded airports are not the most sanitary places. I am so sorry to have to give you bad news but its better to know up front.

I really hope you are a person who will sail thru this. Work on gaining some weight before your treatment starts. Push yourself with the water and calories starting now.

Hi there - yes you do have a dilemma - the first wedding is likely a do. You should have no real problems - except your taste may be off! You may have some sores and difficulty swallowing. Look at the posting on manuka honey - and ask your dr. If you do decide to try it. I found it helped me stay off the peg and continue swallowing - though my nutrition for the last week of treatment and two weeks post treatment was liquiid! I was blessed in that I was only nauseated for a few days after chemo - some people get really sick! I know a man who lived with his head in a bucket the whole time! Not to scare you but that's both ends of the spectrum.
The second wedding is really depends on you. Traveling shouldn't be a real issue - maybe even walking down the aisle. But after that you may just want to hug your child and go back to your room and sleep! I had a first communion 3 days before I ended radiation - and I stayed home. ( my nephew ) I couldn't eat, was drooling more than a great Dane, had little or no energy, my mouth was sore ( though not nearly as bad as it could have been!) and at that point I was content being a vegetable and watching horrible reality shows - I did walk my dog at last once a day though! And despite all this - I was lucky! Believe me - compared to what some people go through I was one of the fortunate ones! Really - it's not an easy path and the effects are cumulative- bottom line, how you feel is a day to day thing. Since it's such a special day and you want to be there - plan on it at this point. Maybe just try to do the walk down the aisle, some photos, then go home! You also have to worry about being around a lot of people post chemo - for a bit because it does a number on your immune system!

I would definitely push for the earlier start date - at nine weeks you may be starting to climb out of that hole - at 8 weeks you'll likely still be stumbing around trying to find the exit - I'm 10 weeks post effects - 12 weeks post treatment and feeling great! My taste is still somewhat sucky, but other than that and some stiffness, and swelling... I'm almost back to "normal". So it does happen it just takes a while.

Re the peg - I had one couldn't use it. The last 3 days of treatment and two weeks following were the worst!! I would take a pain med - wait for it to kick in - rinse with magic mouthwash and then guzzle my ensure! (I only really used the pain meds for a week) it got so I could down it in two gulps... good luck! You'll be fine - a positive outlook has a strong bearing on healing!

Hi Dan

Provided there are no complications, I don't see why you can't do both weddings. These events may even provide sufficient motivation to keep you really looking after yourself during treatment. However Christine's point about your immune system is a good one, you really need to look out for your health around crowds of people. Why don't you ask your doctor for their opinion? I know they will sit on the fence about whether or not you will be well enough to go, but I am sure they will give you an informed opinion about your risk of infection around people.

Chemo will knock you around severely for the second week of the cycle but you will feel much better (almost normal according to Alex) on week three just before the next round of chemo.

May I suggest you organise to have a hotel room or a quiet place close by all the events which you can retreat to for a bit of a nap or just a half hour rest if need be. You can have a Plan B person to step in should it turn out that you are unwell, but I feel that the prospect of being the "proud father" will keep you motivated through the worst of your treatment to keep yourself hydrated and fed which in turn will help your recovery.

My Alex, was mostly upright through all of his treatment which ended on the last day of August 2010. 6 weeks after completion of treatment his mother died and he flew to New Zealand (about 3 hours) managed the appalling delays through customs and stayed upright through all of the angst and grief that goes with funerals.

You have rightly deduced that the wedding most at risk is the one that falls at week 8 or 9 of treatment, as this is likely to be the time you are feeling your worst. I believe you will at least be able to walk your daughter down the aisle (provided you keep your nutrition and hydration up which will help with recovery) and it would be great if you could take a break between ceremony and reception to recharge.

Like everyone else, Alex was weak and easily fatigued but looking back, I think we could have done what you are contemplating with the safety net of somewhere to go for a rest between activities.

You don't mention whether or not you will be flying down the day before the events start but assume you will be doing this so you have time to rest after the flight?

Hi and welcome to OCF, sorry you have to be here. Just my two cents but I can't even begin to imagine flying on a plane and traveling during treatments. Everyone responds to treatments differently but it took all my husband's strength and energy to drag himself out of the house every day for treatments. Traveling (flying) these days is very challenging, tiring and frustrating a lot of the time even if you are in good health. Another thing you want to consider is being exposed to germs. My husband's blood counts plumeted during treatment and his WBC still hasn't fully recovered two years later. We were told to avoid at all costs being around sick people etc. Flying on a plane with that recycled air makes some healthy people sick.

Good luck with treatments and making such a difficult decision.

Thank you for these responses. I am glad that people can express different opinions without disagreement or criticism. I am so glad I found this forum. Every comment is helpful in its own way and we all know that there are different experiences for different people. But there is commonality among the different opinions and as a whole they express the basic realities and reasonable expectations for me.

I'll let you know how it plays out. Hopefully my experience will help someone else in a similar position up the road. When I get the biopsy results back from my MO I will create my signature with my confirmed cancer type, stage, Tx start date, etc.

Thanks,
Dan

Hi, Dan
When you discuss this with your doctors (and they don't say no due to the infection risk), you might ask about going with the PEG early on so that if the swallowing does hit you hard, it will be in place, allowing you to maintain your weight level and avoid any drama of getting the PEG in on your way to the airport. You don't have the spare weight to lose.
My husband went back to work 5 days after his last rad. He could probably have managed what you are contemplating, but looked less than chipper, and had problems talking due to the sore mouth, throat and thick mucous. Two weeks made a huge difference with him - if the second wedding were just a bit later it would help. We're all rooting for you, however it goes!

Dan

I've been away from the forum for a couple of weeks for multiple reasons (entering into a database 1515 comics to sell to a place in Texas, and having to arrange them in boxes in their specific order plus dealing with PEG issues)but quick checks showed the forum was doing just fine without my particular views.
Your post however compels me to jump in with my usual contrarian position.
IMO, You can make the first wedding with some effort, and, IF you want to badly enough, you can make the second wedding. Please note this is just my opinion (IMO), based on how badly I wanted to avoid the PEG which let me go through not only 8 weeks of radiation but also 8 full chemo treatments (one each friday of radiation)without any dehydration or issues. Like Eric S 's signature, if you have the WHY, you can do this.
I'm not saying it will not be one of the most difficult things you have ever done in your life, but I think you can do that second wedding.
You should be able to walk down the aisle with your daughter but you won't be giving any toasts later or being the life of the reception. It will be very hard but it is doable if you are willing to live with pain and fatigue like you never had before. But I was back at work at week nine, barely able to walk down the halls. Get good pain pills.
Now although I am opposed to PEGs, in your case,the 10% weight mandatory PEG requirement does not leave you any real choice. I was fortunate that my CCC understood the psychological significance to me and just let me drop from 177 to 140 instead of using a one size fits all percentage.
Like Michael Douglas, I just didn't want one plus my RO is one of the proponents of the theory that PEGs hinder full swallowing recovery - a point that OCF disputes vehemently but I had not found OCF until after my TX was over.
But I don't see how you won't lose 19 pounds even if you were really buff and muscular like Eric S and I were before TX.
If they really enforce 10% loss then you might as well get the PEG now since I have not heard of anyone losing less than 10% weight without a PEG. Heck lots of posters here lose more than 10% with a PEG.
Here's the part I had to post: get a doctor's note now addressed to the TSA spelling out that you have a feeding tube and that it's medically necessary for you to bring the syringes and tubes and bags on the plane with you. With the latest paranoia about terrorists having implanted explosives, all the blogs and site about PEG tube people have increased the horror stories about TSA. I used to have a heck of a time with TSA minions trying to tug on my tube as part of a security check and almost got arrested pushing one away. Now however, I found that loudly demanding "help me", " you need to examine these syringes", " I need a supervisor over here", etc works wonders. The TSA screeners do not like to be told what to do, so they just wave me thru with no hassles now. It's only if you try to be normal, like Donald Rumsfield did, that the TSA gets nasty and does extra exams because now they have "discovered something". Being told they have to work and help you elicits a different response because terrorists do not demand to be checked or call attention to themselves.
IMO TSA is going to be you biggest headache.
Now if you were female and pretty like Christine, then it'd be a different story, but us males over 50 can't charm TSA.
Last but not least, you CAN DO this Dan. We have, it's hard, but we all finished. Keep posting and welcome to the club no one wants to join.
Keep the Faith
Charm