Hi all, my husband has just finished 3 rounds of very aggressive chemo and is now facing 6-12 weeks of intense radiation treatments. He is a 46 yr old diabetic, we have two sons, 9&12. He has alot of fear re:the radiation treatments and is actually considering not doing the radiation. New studies are finding that radiation treatments are causing other forms of cancer...between that and the feeding tube and the pain it is all very scary for him. We are meeting again with the folks at Dana Farber this week. Is there anyone who has been through this? Suggestions? Thank you.

Ashley, I think the best bet for your husband is to go for the gold. This isn't the most pleasant from of cancer and somtimes takes agressive treatment. Get rid of this OC and make the best of it. At present I am getting rads and chemo at the same time. Mine came back and after these treatments, I have to have rad seed implants put in my tongue. Maybe after another neck dissection. He doesn't want to go thur this if it can be stopped now with what he is going thru. NO teeth left, and i had nice teeth, but theyhad to be sacrified for the implants. Make him go do what is necessary to heal him.

Ashley,

Welcome to OCF. Take some time to research the main site here at OCF. Then read, read, read thru the forums here...you will see that everyone here has been thru this! Reading will give you a lot of insight on the whole mess...from start to finsh! You will see that each person has a little different experience with treatments and after effects. You will becomed armed with information that will help you thru the next weeks and months.

Information is power...take some time to absorb all that is available here, not only information but support.

Deb

Although I had a known primary at the base of the tongue, I too had Stage IV diagnosis, and had chemo, radiation and bilateral neck dissection. Doctors explained that the only way to have a realistic chance at a cure was to be aggressive, and that was all I needed to hear.

Head & Neck cancers are, as a rule, sensitive to radiation, which is one of the reasons radiation is a primary treatment modality. Most chemotherapy serves to make the cancer even more vulnerable to radiation.

I think the jury is out as to whether radiation itself causes more cancer. In my case, I'm pretty sure it was responsible for a skin cancer that popped up in the center of the radiation field on my upper chest. However, the point is that the skin cancer was easily removed and should cause no further problems. Might I get more in the future? Could something else crop up? Its possible, though certainly not probable. On the flip side, if I had only had the neck dissection and chemo, it was highly probable that I would die from the SCC in relatively short order. Choice was pretty clear from where I sat.

I realize choice may not seem as clear with an unknown primary, and each person has to make their own choice. I would personally do anything they offered to provide a reasonable chance at a cure.

Ashley,

My husband has been through surgery, chemo and radiation. It was very difficult. He finished in December and is feeling better each day. He also has a peg and will continue to need it for awhile because he needs more treatment snd has lost alot of weight. This whole thing is so scary but this website has been a lifeline for me. It helps to know you are not alone. We have three teenagers 18, 16, and 13 and they are all showing the stress in their own ways. Hang in there and know there is always hope. Sue

Ashley, he should go for the radiation. I was treated at Dana-Farber last year. They have an excellent alternative therapy department--The Zakim Center---right in the building where you can get acupuncture, reiki, and massage therapy to help with side effects. I took full advantage of all alternate therapies that my insurance company would cover. If your insurance doesn't cover these therapies, they are available for a lower rate than you would pay outside the hospital.
As Jeff said, head and neck cancers are paricularly sensitive to radiation.

Ashley,
My friend also did her radiation at Dana-Farber, and she tolerated it well, the last week being the most difficult. She did have mets to the lymph node in her neck and it did respond well to the radiation.
The Head and Neck Oncology Dept. at Dana Farber is wonderful, don't hesitate to discuss any of your concerns with them.
I hope he decides to do the radiation. And as stated above, use all the alternative therapies offerred there to make it easier on him.
I wish all the best to both of you.
Liz

Ashley,

Read my Signature Line below. As you can see I was a Stage IV also. Now I am 17 mos post treatment and I am doing great and I'm cancer free so while the treatment may be extreme and barbaric for some of us, me included, the long term side effects are minimal compared to the alternative which is death. Almost all comprehensive cancer centers, including Dana will recommend radiation, probably chemo and even perhaps surgery but I wouldn't think anyone would not recommend radiation with a Stage IV OC.

Ashley,
I had an unknown primary 10 years ago with mets to one lymph in neck. I had no chemo, but had ND and 36 XRT radiation treatments. What type of radiation are they going to be giving him? XRT or IMRT? I think for peace of mind to just know they got all the micromets, I would and did go for it. Yes, the side effects can be nasty and some may be permanent. I think the fear of the unknown is probably holding him back. Ask the doctors what they expect HIS side effects to be and the downside if he doesn't have it. This cancer is nasty and needs aggressive treatment. I'd want to know it was gone, but that's me.

Take care,
Eileen

Ashley,

Have him call me during the day at 727-322-5669. He can ask me all the questions he wants.

Ashley: This may be the most important decision you and your family ever have to make, as you already know.
Read the signature line at the end of this post, and you will see that my husband is 4 months post treatment, Stage IV-A SCC, with one lymph node positive.
Why not hit it with everything your team has to offer....get this behind you so that you can go on with your lives... raising your family....
We're all behind you, no matter what decision you make...

Lois & Buzz in NC

Ashley,

Have him call me toll-free at 877-869-0998 if any questions or if just wants information. I would certainly go for the radiation. I look at it like in rare situations the wearing of seatbelts can be bad if you are trapped in an accident but the benefit of wearing them more than outweigh the possible downside to where it should be an easy decision.

Bill D.

I was lecturing at a cancer conference earlier. One of the speakers with me was Kian Ang the head of radiation oncology at MDACC and my doctor when I went through there 10 years ago. I had 72 grays of radiation... they don't give you any more than that. I've had a bunch of side effects I won't list them all there right now, but they are the usual things that everyone here complains about. I also know that around year ten people that have had my dose of radiation can develop osteosarcomas in their mandibles (about 3% of all patients). an was whining to him about some of my issues from all my grays, and he said to me; "Brian, is sit lost on your that you have to be alive to have the complications that you are having...."

I think that puts it in perspective. Nothing in treatment is without risk. And today the bulk of patients go through with far less radiation than I. If you are not going to do things because of what might happen, you might as well stay off of the freeways too. I know that sounds harsh, but you have to (like I did not) keep all this in perspective. Incomplete primary treatments I believe, are a high cause of recurrences, which once they happen, you may not get out of easily, regardless the tools the medical profession has in it's bag.

Ashley,
I wish you could hear me shout... you only get one chance at beating this monster. Hit it with everything known to man, you can handle anything on the way to a cure.

Take Care
Marica

Thank you all...forgot to bookmark the site and now finally found it. So moved to read all your responses. Tom is just finishing his second week of radiation at DF...he ended up in the hosp this week after the surgery to place feeding tube...spiked a fever and was experiencing extreme pain at the site. He came home yesterday and is still in a huge amount of pain. Our boys 9 & 12 are having a hard time seeing their Papa suffer so. Another treatment today and then he can rest for the weekend. 5 more weeks to go. His mouth sores are intensely painful as well. He asked that I ask you all if there were any suggestions for easing this pain besides everything that they are giving him for the pain. I am going to look into the acupuncture treatments and he is already receiving reiki. I feel so helpless when faced with his pain and we have so much further to go. Thank goodness for our community and family and for all of you...ash

Ashley- My husband had pain after the PEG was placed but in went away after a few days. What kind of medication does he take? Maybe take to the doctors about a mouthwash to help with the sores. Hang in there, Sue

Ashley,

What is he taking for the pain? Is he using any type of mouthwash for the pain in his mouth? I was on a Fentanyl patch for the pain and took Oxycodone for the break through Pain throughout the day. I was also prescibed a mouth wash that eased the pain in my mouth. I forget what the mouthwash was called and made up of, but someone on this forum can help out. Also, with the pain med he is going to want to take a stool softener to avoid constipation. I used the Walmart brand.

With the peg tube and feedings, has your doctor or nutritionist given any guidelines on how many calories he is to have per day? I was instructed to take in a minimum of 2,700 calories a day, and so took in through my peg tube 3 times a day 2 cans of carnation instant breakfast VHC drink at 560 calories per can. Nutrition is VERY important to the healing and recovery process. My nutritionist ordered the carnation IB VHC and so it was paid for by my insurance. She also ordered extra wider tubes for the drip bag so it flowed in more easily.

Ashley:

When the PEg tube is first put in its very sore for a few days. It will get better within a week of the surgery.

As far as pain meds go, I had the fentanyl patch. It worked great at releiving my pain. Ask the doctors about magic mouthwash to help soothe the sores in your husbands mouth.