Tom.....You will be okay. It is not easy. When my husband was diagnosed with tongue cancer feb 08, it seemed like I was paralyzed for a few months and all I did was cry. I only talked to my family and was basically in seclusion. That's how I dealt with it at first. Try to remain positive no matter how difficult it seems. I have adjusted to my "new normal" going to work for my son in his new business. (I naturally can take off when needed) Do you have family support ? I have two sisters who grocery shop for me, run errands, clean my house just to mention a few. I know all situations are different. Some parts of your life must return to normal. Sometimes I feel guilty walking out the door as Jim is sitting there, as it appears that I am going about life as normal. Many times I've cried all the way to work, then I am okay when I get there. Do whatever you have to do without GUILT, please ! If you need to get back to work, then it's in the best interest to do so for yourself and your wife. Life still goes on no matter what we are dealing with. Jim is finally starting to get some water down his throat since surgery in March. We went to and ENT dr. who specializes in oral cancer patients who can't swallow. He's been on a peg since March. Hang in there buddie. We are all here for you. Thank god for this board---we are all in the same boat one way or the other.........Claudia

Tom- My husband had the Cisplatin along with the rads also. I asked the doctor about doing the chemo every week instead of the larger dose every month and that's what he did. Not too many side effects from the chemo-radiation was worse. They will probably give your wife lots of meds to reduce nausea and vomiting. My husband didn't even lose his hair. He did lose alot of weight though. He gets all of his nutrition via the PEG tube he has had since October '07. He is 6'3" and at his lowest he weighed 159. He is back up to 179 now.

As for you, if you have to go back to work there's not much you can do about that. Don't feel guilty. I'm sure your wife would not want you to. Can you have family or friends help her out while you're out? Even just having someone to call if need be may be enough. Women are pretty tough about taking care of themselves but don't let her try to be wonderwoman. Take care of yourself-you have to put on your own oxygen mask before you help the person next to you!

Sue

I didn't want my wife to stay home with me but there were a few times towards the end that I was glad she was only a mile away.

In answer to your original question, yes the staging can change as a result of the pathology reports and the outcome of the surgery. Like David I was supposed to have 3 bags of Cisplatin but I had such a severe reaction that I only had 2 treatments. I was effectively disabled for almost a year. Many times it has been said that it takes one month of recovery for each week of radiation. Speaking from personal experience I can tell you that radiation is a tough treatment - tougher than surgery (even tougher with Cisplatin). You are going to need help caregiving for a while. Use this lull to build up a network of friends and family to help out. The ACS can provide volunteer drivers for radiation. I am not trying to discourage you but you need to plan for what is to come realistically.

The good news is that I am cancer free for almost 6 years now (I was given a 38% chance of 5 year survival). Keep your eyes on the horizon and take it one day at a time.

Tom, I had no idea what to expect when my husband went thru this. Let me tell you upfront, its going to get alot worse before it gets better. BUT it does get better!! His cancer was a recurence and advanced. Floor of mouth, tonque, jaw and lymph nodes. He had surgery, got gangarene in the hospital 4 rounds of cysplatin, 8 weeks of radiation and a permenant feeding tube. He was so sick, I didn't know what to pray for. The chemo will make your wife VERY ill, demand drugs to control the nausea, DON'T wait for it to happen-take the drugs before the Chemo. The radiation will burn her chest and inside of her mouth. There are drugs to control this: magic mouth rinse, and silvadine for the burns. BE PROACTIVE. Its been a year and 6 months, Our "new Normal" is better than we ever expected. You will survive this!!

Thank you all for the responses. We do have a very supportive family that has helped out immensely, from helping out with our one son still at home to having a garage sale to raise funds. Being a man, I have found it very difficult to accept let alone ask for help, but I am getting better. I know I read it on someones signature about this bringing them to their knees and it is so true, this is a very humbling experience where we have very little control and need to turn our lives over to God and the doctors(and I am sorry but I don't deal well with giving up control either).

Pam was scheduled to start the Cisplatin (3 large doses) and the first of the 33 IMRT today but found out that she had an infection at her PEG site so has started antibiotics and treatment has been pushed back most likely to next week. I did ask our MO about getting the weekly smaller doses but was told they don't do that, she has had very little problem giving the larger doses and if they are not tolerated will switch to a "cocktail" as opposed to the smaller doses of Cisplatin.

Just playing devils advocate, those of you that have had the smaller doses, did you still have an overnight stay at the hospital at each treatment or was it given as an outpatient. For my wife the larger doses are scheduled for an overnight stay and my cynical side could see insurance objections to 6 or 7 overnight stays versus the 3 for the larger doses.

Again, thank you all for all the information you share on this website, it definitely let's me feel much more knowledgeable when talking to the doctors and nurses.

Tom

Have you called the American Cancer Society for help yet? If not, they can help with alot of things like transportation to tx, helping financially up to $300 with prescription co-pays, or to lend an ear to listen. Sometimes they will even help to reimburse your travel mileage for tx. If you have the best insurance, the prescription co-pays still can add up very quickly when taking cancer meds. Some pills cost $100 each without insurance. A $25 or $40 co-pay on 6 or 7 prescriptions per week for a few months can really hit you hard.

Sounds like you are worried about finances, which is understandable. Cancer sure can get expensive. Check with where she is being treated, they probably have a financial services dept who is more than willing to work with patients. With the help from the hospital and ACS it should help you at least a little.

Ask at the hospital also about visiting nurses. My hospital had a program since I had the PEG tube for a nurse to come out a couple times per week to check on me and make sure the tube was ok. I only had her once or twice per week, but could have had her 5 times a week. If you go back to work, this would really help to ease your mind.

I also had the same type tx w/ cisplatin and 35 rad. It wasnt easy at all, but it is able to be done. After my first 2 cisplatin, the third dose was cancelled. It hit me pretty hard about 2 weeks after the first dose.

Since your wife now has the peg tube, now is the time to be pushing 48 or more oz of water daily and shoot for 3000 calories of liquid nutrition per day. She needs to build up strength now to fight what is coming. Since weight loss is a concern, even going over 3000 calories shouldnt hurt. At one point after tx I had been getting at least 5000 calories per day and didnt gain any weight, this went on for 2 months. Your body burns up calories like crazy trying to recover from cancer and the tx.

Hope your wife goes thru this easily.

Tom,

I had the Big 3 but each time I was given it in Moffitt's induction clinic and then went straight to radiation and then home. Those 3 days were the longest days in my Tx. UGH They never once mentioned an overnight stay.

Bill had the once a week dosage of Cis plus Taxol that did not require being in the hospital...only an infusion at the MO's facility that lasted about 6 hours each Thursday for about 7 weeks. I'm not sure why they "can't" do this...I know that the last infusion, the MO adjusted the Cisplatin/Taxol down a bit since Bill's blood counts were so low. So, it seems that dosages can be adjusted.

Just curious.

Tom- As I said before my husband had the smaller doses and they were done as an outpatient. He had them once a week for 7 weeks. he also had radiation every day for 7 weeks. We had a long day at the hospital on the day of the week that he had both. He never had to stay overnight. I'm very surprised they won't even consider the smaller doses.

Sue