Hi... My name is Geri and this is my first post. Three weeks ago my husband Richard, age 62, was diagnosed with SCC found with fine needle biopsy. After MRI, PET scan and other biopsies the diagnosis is TINIMO BOT. The radiation oncologist is very optimistic because the tumor is so small, less then 1/2 inch 1 cm. Also, he has no health problems, takes no medication, and is very physically fit and active. In fact, 2 weeks before the first diagnosis we were up at 9500 feet hiking in the Sierras. This has been such a shock and I have been on the internet doing much research to be as prepared as we can possibly be to get through the treatment. There is no better resource then all of you that have walked the walk and know what we will be facing every step of the way. I'll be asking many questions in the months to come. but right now I have a couple of questions to start. We are meeting Wednesday with the radiologist for the CT and fitting of the mask. Richard will have 7 weeks of IMRT and Cisplatin 2x or 3x during the radiation. I have my questions ready for this appointment, but if anyone has a suggestion as to some helpful questions to ask, I would appreciate feedback. Also, would you recommend AM or PM appts,. I think mid-morning might be a good time. We meet with the oncologist on Dec 15th and I'll also have questions to ask about the side effects of the Chemo. If you have Chemo weekly or in 2-3 treatments is there a difference in the side effects? I've been doing so much research that I do feel informed to ask the doctors' questions. It would be great to hear from anyone with any feedback at the stage we are at now and what we should ask at this point. Richard will have a PEG tube put in prior to treatment. I've learned so much from reading this forum and I want you all to know how much it means to us that we are not alone. I'll be updating with info and questions. Thanks, Geri

Geri,

Welcome to OCF, unfortunately. You'll get a lot of great responses from great people. Personally, I liked my morning appointments...in and out as quickly as possible. I had one session at 1pm and it was a full house, patients all over the place.
Radiation was tough, drink 48 to 64 oz of fluid and 3000 calories a day--every day. Stock up on Carnation VHC it has 560 calories in one tiny 8 oz can. I was 215 pounds before tx and now I average 165 to 170 pounds and I lost a lot of muscle...I'm like soft or something. Taste will be completely shot, so have your husband pig out on all of his favorites. Good luck and stay strong.

btw, update your signature so it's easier to know what you and your husband are going through...that way we don't have to go back to your original post to re-read it and you won't have to repeat yourself.

Welcome Geri (and Richard) I don�t have specific answers but I can share that each patient reacts a little differently to chemo and radiation. Hopefully Richard is being treated at a top rated hospital so that he is getting the best possible care. As far a what time of day for radiation, I�d ask the technicians what the least waiting time of day is. For me it was the first thing in the morning. By the afternoon all of the delays would compound such that waiting was longer. The radiation treatments do not cause any immediate tiredness so that he will be able to do some other things during the day. The latter weeks of treatments can be grueling so you would do well to prepare for a tired and cranky patient.

Let us know when you have questions. Please also keep in mind that some people get through treatments without major problems. I hope this is the case for you both.
Sometimes reading here can be a little depressing and lead you to believe that it is always really tough. Hang in there.

Welcome to OCF. You will find lots of support to help you and your husband thru this.

First thing I would recommend is for your husband to eat like crazy. Of course go for nutritious foods. Now isnt the time to worry about gaining weight. Just have him eat everything he wants now, it could be a very long time before he can eat and taste properly.

As far as the PEG tube goes, it is a goood thing. Others probably will debate the fact that its a necessary thing to have. I lost 65 pounds during treatment, and that waas with having the PEG tube. With doing chemo and radiation, your husband will need it to get his nutrition. His doctor will order prescription formula for the PEG tube which is usually covered by insurance.

Your husband should swallow, drink, and stretch his mouth open as wide as possible several times per day. This will save him from alot of problems after treatment.

Some questions you could ask... what type of chemo? Cisplatin can cause hearing problems, so have a hearing test done. The side effects seem to be easier to tolerate if chemo is given in smaller more frequent doses. Make sure you tell the doctors every single medication even over the counter and vitamins he takes. Ask about getting prescriptions in advance. Once treatment starts is very inconvenient to constantly be running to the pharmacy. If you get them in advance then you will be ready with anti nasuea meds. You could ask about any local groups to help him cope with this, or to recommend a therapist. Many oral cancer patients need therapy and anti-depressants to get thru this.

Its a good idea to start lining up helpers. People who would drive your husband to treatments or could help you by grocery shopping or cooking. As the caregiver you will get worn out thru this too. Try calling the American Cancer Society, they have several ways that they can help you.

Hope I have given you some useful info. Best of luck to you both.

Hi Geri

I had my radiotherapy treatments in the morning that way usually there was very little waiting, except for every Wednesday which was when I had the chemotherapy first and then followed by the radiotherapy. On those days I usually didn't get to the radiotherapy rooms until late in the afternoon, which made those treatment days very very long and tiring.

Fortunately, where I was treated the chemotherapy nurses always contacted the nurses at the radiotherapy rooms to advise them that I was on my way upstairs so they would put me straight into my treatment and prevent me from having to wait.

Unfortunately it can be a difficult long road and I really do wish that had I of found this site along time before I did and therefore I would have been more prepared with what to expect. It certainly would have made me realise that what I was going through physically and emotionally was not unusal and was part of the course for most people.

Karen

I prefered mid morning to a. avoid commute traffic and b. to allow enough time to eat a little and prepare for RT. I also had ct in the early afternoon.

I also had mid-morning and that worked best for me -- I could get it done, come home and crash...

If your med ins won't cover VHC for a PEG, then use Nutren 2.0 which has 500 calories per can (Made also by Nestle).

I found the best time to be late AM. This gave my husband time to settle down from overnight issues and start the day slowly.

Also, the radiation nursing staff was always available for questions and would do an evaluation (without appt), if necessary. If we could talk to them, we didn't mind hanging around after rad tx. We found this most helpful.

I also wanted enough time left in the day to go to drug store for numerous prescriptions, etc., before rush hour. Lottie

I was an early morning radiation person. I was the first one on the machine every day at 6am (it was so my husband could bring me and still go to work after). I liked that because I was still pretty out of it from getting up so early and I would sleep through treatments (not so much at the end though) and then I would come back home and sleep for a good while. I also had my chemo on Mondays at their first time slot (8am) so that way I would have my afternoons open to go see a movie or do something outside of the house because my husband would take all day off on Mondays - and nobody goes to day time movies!

It appears your husband is having the same schedule as I did 7 weeks of IMRT and Cisplatin. I did a hearing test before Chemo , then after each treatment, as I was having some damage they spread the treatments over 2 days after the 1st dose. Everyone reacts differant to the treatments, compared to many I had a easier time but have no idea why. I did try and keep my caloric intake up , lots of water and I tried to at least walk some everyday. I had to start off at doing rads at 6:00pm for the 1st week then got slotted in mid morning. That worked great for me as I had about 70 mile drive each way and was able to avoid traffic. I normally drove myself so I was eager to stay out of rush hour time. Downside, at least at Duke was once in a awhile they would get backed up. There is a great section on the forum - Getting thought it project that has some great suggestions and ideas. Good luck and listen to all these wonderful people on this site. They are very smart, supportive and compassionate.