Hello Everyone, First I would like to say how you have all helped me research this disease that I had never heard of. All of your messages helped my family deal a little better with what we faced. My sisters husband who I have loved like a brother for 31 years was diagnosed with Stage4 scc about 7 weeks ago. Six years ago my husband and I and my sisters family bought a 2 family house together and all has been grand ever since. To say the least his cancer has us all devistated. It always seems to happen to someone else. Anyway, Jimmy has had 4 single treatments of chemo over 4 weeks, single doses of radiation 5 days a week for 4 weeks and six days of double dose radiation and facing several more. No surgery due to the location of the tumor which started on a tonsil. He also had a feeding tube put in which I have to say he handled very well! Once the double doses started he really started to feel the burns on his skin and the sores in his mouth. This has been very hard on my sister, watching him go trough this and feeling so helpless. I have read so many of your messages over the last few weeks and I pray for all of you. One of the good things that came from this site is the tee shirts for sale. Jimmy has always said "It's not the size of the dog in the fight but the size of the fight in the dog" Imagine my surprise when I saw the tee shirts. I bought one each for several people including Jimmy. He really loved it. Please forgive my rambling but there is so much to say and I just thought it would be good to share with people who know how we feel. Any advise on how to keep the spirits of a cancer patient up would be greatly appreciated. None of us here can say we know how Jimmy feels because we don't although I know some of you do. You are truly a wonderful group of people. Well thanks so much for your attention and I will check back soon. God Bless and watch over you all.

Gwenny,
It sounds like Jimmy is starting off in good shape in that he has you and so much supportive family, not only nearby, but living in the same home. It also sounds like both you and Jimmy have a great attitude from the start. Most of us here, including myself, got a feeding tube during radiation and in my case, it has been the least of my worries. In fact I still have mine and work and play golf with it under my clothes with no problem.
What I think that you will find is that Jimmy will have good and bad days. In the case of a lot of us here, it got worse once radiation ended. But, little by little, he will start feeling better. As he goes along and you have any concerns or questions, post them here because so many of us have experienced the same problems and can help you. When I was in need I found a lot more comfort on this forum than I did from any of my doctors or nurses.
Welcome aboard and we will all be pulling for Jimmy and you.

Take care,
Danny G.

Welcome to the board. My husband, like your brother in law had stage 4 ssc that started in his tonsil. He only had the initial surgery that found the cancer and then 6 weeks of radiation. He did have a PEG tube, we tried to make it through without and not getting it sooner is the only regret we have. The worst part for him was the last week of radiation and for about two months post. Slowly but surely things did start to get better, so tell your brother in law that things may get really rough, but he will get through and there will be brighter days ahead. My husband was diagnosed 5-00 and finished treatment 7-21-00, so it has been three years and so far he is doing great. He is back to his normal weight and can eat just about anything, his taste has come back almost completely, and although he has some dry mouth, not too bad, thanks to the amifostine. This board has been a wonderful place for us to come for support and knowledge. I usually just lurk now, but wanted to tell you for all of you to hang in there. I always tried to think of what we were going through as a temporary situation to a lifetime of cure. Day by day!
God bless all of you!
Julie

Welcome, Gwenny. What Julie said is exactly correct and the operative word is "temporary." Treatment can be pretty miserable, but the misery ends. Treatment time really is a very small block out of a lifetime, and stepping back to look at the big picture can help. This is something that needs to be done now, but do not stop planning for after. In my case, even when I was sick, I kept telling myself it was just a temporary situation -- and it was. Friends and family were so positive and kept making plans for what we would do when I was back to being me, that I didn't have a chance to look at it as more than just a necessary inconvenience. This is not to trivialize what your brother-in-law is experiencing, just to remind you to look to the future. I did the surgery/rad/chemo dance and by the time I was 8 weeks out from treatment, I was singing and dancing for real. In summary, I believe it is important for you to focus on the near future as much as the present to keep everyone's spirits up. Good luck to you all!
Joanna

Thanks so much Danny, Julie and Joanna, I'm sorry it took a while to reply but the night I posted my first message, Jimmy had to go to the hospital as he had a slight fever. Docs said it was from the chemo. He's becoming increasingly short tempered now that he is in such pain. He's not a very patient guy and never took a pill for anything in his life. The doc gave him ativan but he won't take it, says it makes him feel worse. I am trying to get him on this board so he will have kindred spirits to talk to. Maybe soon. I read the replys I got to him and he was very touched. Just knowing that this is all temporary is good for him to know. Thanks for your words of encouragement. I know they went a long way. God bless and watch over you, Gwenny

Gwenny, he should not be having pain, especially enough that it makes him short tempered. There is no reason whatsoever for him to tough it out. This is one occasion when taking drugs is okay, and believe me, there are some mighty fine drugs out there! I can count on the fingers of one hand the pills I took before I had radiation and chemo. I do not like to take medicine. However, there came a time when the pain was interfering with everything, and I cried uncle. Should have done it much sooner. Being macho (or whatever female equivalent is) is not appropriate here! You tell him to get some of those good drugs and his outlook will improve 100%.
Joanna

Hi Gwenny and welcome to the group. I had the same deal almost - SCC, Stage III, right tonsil, no mets, no surgery, just IMRT radiation (33x) and 2 Cisplatin treatments. One of basic patient rights is effective pain management. I studied what worked and requested the drugs from my oncologist before I even needed them. I have Vicodin, 15mg Morphine Sulphate tablets and 50 mg Duragesic (worked up from 25mg), and they're handling it pretty well. Oxycontin is also very effective I am told.
I kept all my teeth and colateral radiation was reflecting off my gold crowns and causing tongue and other mouth burns. I put cotton rolls between my tongue and teeth and between the teeth and inside of my cheeks (by the molars) during treatment and it seemed to make a real difference. Although by the end of treatment everything was pretty baked. I had a really painful sore on the side of my tongue but it's all healed up now. It took about 6 weeks after the end of treatment to really notice an improvement.
To keep spirits up - stay distracted. Stay connected and don't isolate. Talk to others, share with others, read, watch TV, read the bible. Think about life after treatment and the wonderful new opportunity that awaits you -The second chance. Like Bonnie Raitt said in one of her tunes "life becomes more precious the less of it there is to waste"

PS.
Ativan is an anti anxiety med that is also prescribed for nausea. It can be taken orally, sublinglally (under the tongue) or rectally.
It will not relieve pain.

Hi Gwenny, I'm so sorry to hear of Jimmy's pain and discomfort that he has been having lately, but as Joanna mentioned - there is no need for him to suffer through it like that. My husband who was diagnosed with stage III/IV scc at the base of the tongue - has been and still takes Oxycontin (40mg) for pain, along with Valium for anxiety and Acetaminophen (Tylenol #4) w/codeine (60 mg) also for pain as needed, along with a whole host of other meds for various other ailments. And yes - what Jimmy is going through with the radiation, along with the burned neck and mouth sores - are very common and to be expected - but also keep in mind that it is temporary, as folks have mentioned. Things will get better - in time, and since everyone heals at a different rate, patience is defintely needed! I can tell you that when my husband was going through his radiation - his neck was red, raw and blistering....and if it wasn't for the cream that I was applying (gently!) to his neck - he would have lost it! My husband who was in the Marine corp. during Vietnam - always was a "tough guy" when it came to showing emotions - but I seen him on the verge of tears when he was going through the radiation and it's after-effects. So please tell Jimmy to be strong - to hang in there - and not to be afraid to ask for some pain killers that will work for him, since there is no need for him to suffer like that.

Hi Gwenny,
The skin on my neck took on the persona of a regular sunburn and it started out redish and just peeled after treatment was over. It wasn't oozing or anything like that. They gave me Desonide cream, 0.05%, to apply topically for the itching (you DON'T want to scratch it!) and that worked really well. It was the least of my troubles, only needed the cream for a week and the skin was the first thing to heal. Make sure there is NOTHING on the skin while getting treatment. Lotions can cause a "bolus" effect and actually enhance the radiation damage to the skin.

Hi again,
Joanna,Gary and DonnaJean, Thank you for all of the helpful advice. I tried to explain to Jimmy that the Ativan is for anxiety but not being a pill taker he didn't want to take it. After a particularly anxious night last night I got him to take one. I really think it helped him. He is taking Roxycodone 5mg liquid and 2 75 mg Fentanyl patches which stay on for three days. He has been doing okay getting his pain under control for the past few days but the little things seem to set him off. I can understand this perfectly what with all the drugs. I can't help but feel sorry for my sister who is doing all she can to help him. Last night I stayed to help him so she could go and sit outside and chill. The caretakers really do need a break don't they? My sister is a wonderful person and Jimmy is so lucky to have her, and so am I.
Gary, the burns on Jimmy's neck seem to be doing well with the cream the doctor gave him. Blisters have only formed in his mouth and on his lips. Only 2 more days of double doses of rad and then we'll see. I'll be going upstairs now to read these messages to Jimmy. I know how much they will help him. I am praying for you all and wish you the very best. Thanks again for all the help. God bless you and watch over you all. Gwenny

Hi Gwenny, I'm so glad to hear that the pain Jimmy was experiencing seems to be more under control. Considering all that he's going through - I'm not surprised about "little things" that seem to set him off. My husband Johnny had quite a problem with mouth sores/blisters for the longest time - even after radiation ended, and that was more than enough to keep him in a cranky mood pretty much most of the time - in spite of the painkillers! I know it'll be a relief once the treatments are done - but the side-effects can last quite awhile. I'm glad to hear the neck burns are healing well for Jimmy - it's amazing how quickly the skin can repair itself after being assaulted like that! Anyways - I just wanted to say that I'm glad that he's feeling better for the most part - and I'm keeping him in my thoughts and prayers for a speedy recovery. Take care.
P.S. Yes, I do agree - we caregivers can use a break sometimes, and it's important to take care of yourself and do something to keep your spirits lifted. (I prefer shopping!). Right now - I'm not much in the mood to do even that, since I'm battling a cold (didn't take my Vitamin C!) and am doing my best to avoid Johnny from catching it. (someone please pass the Puffs tissue!)

Hi DonnaJean, Thanks for caring!! It's so great to be able to get the help we need from people who know what they are talking about. I hope your husband is doing well and I will keep him in my prayers. Take care of that cold and thanks again for your kind words and thoughts. God bless you and watch over you. Gwenny

Just another little note Gwenny, tell your sister that as a caretaker myself, I understand what you are both going through...and I commend her on her strength and spirit. Three cheers to both of you....and let Jimmy know that we are here to help him in his journey to healing. The treatments are a bear to go through, but as mentioned before...let him know that things WILL get better!! God bless and take care.

Gwenny
Just a little note for your sister. The pain pills and patch especially for those no pill guys make people very weird at times You wouldn't believe what my husband said to me and many nuses thru this process. Even being a nurse myself didn't help my tolerence. It really got to me.
Tell your sister to walk away is ok I walked out of the hospital one day when I had had enough. His Dr told him off for the way he talked to me and for some reason he got the message. Even though I knew the cause the words just stung too much. It's ok to do something to help yourself while you help him. I wish you all the best and Gwenny your sister is lucky to have you. I had noone and pat yourself on the back for being such a great sister.
Diane

Gwenny, I have been silently following your story here and I just want to say how fortunate Jimmy is to have TWO people to help out; you and your sister. Make sure you two get the time you need for yourselves too. This whole thing is hard on everybody.

I also want to add to what Gary said for Jimmy to have distractions and to keep him doing things. I found that I felt better if I could get out and walk (sometimes very slowly) or even go for a car ride wherever. There dosen't have to be a destination just to be out and about, to see other things going on besides all the medical stuff. It pulls the mind into other places besides pain and worry.

Take care

Thank you all!!! This is just the advice I know my sister needs. Now that Jimmy's rad is over. he is taking a little downward swing. Nasty side effects getting worse. I have to say that every time he gets cranky, he always apologizes later. Cindy (my sister) has been so good. She's doing a great job. I think getting Jimmy out once in a while is a great idea. Hopefully the weather here will be condusive to that soon. We did find out yesterday that Jimmy's tumor is almost gone.(YAY!!) Now if we can just get by the tough stuff. Maybe all will be well soon. Thank you all again. You remain in my prayers. God bles and watch over you all. Gwenny