Michelle...don't beat yourself up about asking Jesse to try the Ethyol. All we can do is ask questions and make the best decision we can with what info we're given. When your told that this drug has the possibly of lessening the side affects of the treatment and can help maintain a better quality of life long term, of course you want to try it. I did the same thing with Jimmy. It was given to him both ways...IV and sub-cu. His side affects were the same, either way it was administered. It gave him so such excruciating bone pain, fever, and violent chills that I would lay on top of him and hold him as tightly as I could just to try to stop the shaking. This would go on solid for 12+ hours. He was already on the feeding tube when they started giving him the Ethyol but he couldn't tolerate being fed. Jimmy took it daily for about a week inspite of the side affects. But at the end of that week he said stop because he couldn't stand it any more. The doctors gently pushed him to keep taking it but he wouldn't. When he stopped taking it, all those side affects ended almost immediately and didn't return. In the group of people we met while going thru treatment, we only met one person out of about 6 that could take it. Is Jesse still taking it?

How is he doing with PEG tube? That was another hard "pill" for Jimmy to swallow. He tried to eat mush as long as he could and wouldn't feed thru the tube. But, he kept losing too much weight. The doctors had to get a littel stern with him about using the PEG. I'm not really sure why using this was such an issue for him. I think having to use it was like "giving in" to him and made him feel like he was losing more and more control over his life. But in my mind, the PEG tube was the best thing ever as far as nutrition goes. At least with it, I new he was getting the calories, vitamins, etc. he needed. We did have a lot of trouble with infections due to the tube. They finally had to replace it because the one he had was "defected." I don't know if this is normal or not. We don't know anyone else that had a tube.

As far as the comment you made about this not being the worse part yet...things will worsen but they will do so slowly. And as things do worsen, there will be people around you that will help you cope with each step. At least for us, the progression was slow (except for the Ethyol). And then after treatment, things will slowing get better. Jimmy finished treatment Nov21. He still isn't back 100%, but he makes improvments each week. And when treatment is over, Jesse will too!

Hang in there girlfriend! Thinking of you

Hi Everyone! I got back home about 2 hours ago, having spent since Monday at the hospital. We went Monday morning to get PEG tube. Jesse was severely nauseated/vomiting upon arriving; so they gave him fluids for awhile and went ahead and put the tube in, but by next morning, CT scan showed it had "backed itself out." So we got another surgeon to put another tube in using a different technique and so far it has stayed in. But Jesse couldn't have anything in it for 24 hours to make sure it sealed, and by then, we had decided to have a port put in while he was still in the hospital, so he was only able to get the feeding started for about 8 hours before he had to fast again to prepare for the procedure this morning. So already 5 days in the hospital, but at least we have the PEG and a port in place and hopefully we can move forward from there. I will now pray that there are no problems with infection and am fighting the feeling that if it can go wrong, it will. At least he didn't miss any radiation treatments during this process, so he has 10 treatments completed at this point. I felt so bad for him, knowing how entirely sick and miserable he felt and having to go for treatments anyway. He tried to skip them a couple times, but didn't. I hope the coming week is a little calmer. He is already down 27 lbs since discovering the lump! RO says he needs to put 10 lbs. back on as soon as possible. I can see a big challenge there.
Within 2 hours of arriving home from the hospital, his temperature rose to 102.7. But we got it down to 99 now. Is that (fever) a common occurrence? I really didn't think he was going to be as sick as he was during the first week and then to spend the second week in the hospital. I am glad he only took the Ethyol one day as it seems to have only complicated matters. Does radiation make you nauseated as well? I thought it mainly made you tired.
Also, what does Erbitux do? I had asked the medical oncologist about it, and she seemed to indicate it would not need to be considered until later on in the treatments. Does this seem right?
I am feeling frustrated with having so many doctors, surgeons, etc. and one not seeming to have a clear understanding of what the other is doing... every procedure seems like its own separate entity and not part of the overall treatment process for the cancer. If that even makes sense. I should go now and post later after I have rested.
Goodbye for now and as always, thanks for being there and listening.
Michele

Michele, Here is something I have done since we first started battling this disease a year ago. I have a notebook beside me all the time. I write down every question that pops in my head under the Doc's name I want to answer the question. I take this note book to every appointment we have and ask the questions and write down their answers. They have gotten used to me during this past year and come in asking to see my list of questions. These questions are organized and pertain to a specific event in John's treatment or pain or problem he is having. And they may be about something I have read here. And I always get an answer[which I sometimes argue with] Remember, the people treating Jesse have not been through this personally, so you can push for answers, demand help and attention when you need it and generally be a pain in the neck if you have to be. I think you should express to these Docs that you are feeling fragmented and not well informed about Jesse's treatment- maybe ask for a meeting with everyone involved. It's really gonna be tough for awhile and I hope you can stay strong. Just remember your goal is to get him well. Amy

Amy - You are right - I have thought about keeping a notebook and this is something I have to quit procrastinating about and do. Being a procrastinator does not work well with being a caregiver. That, along with having a bad memory. Subsequently, my lifestyle has changed, and I have to change my personality as well, which is not a bad thing - I have been fighting the procrastination thing for a long time, I just seem to work better when I am under pressure. So now I am under pressure. So I guess I have no problem after all! (I think I better get some rest, like I said)

Actually, I am not intimidated about asking question, and have been - so much I guess that the RO told me I should get a book (a mystery book) to read. He did add that he doesn't mind and wants me to ask questions but I think he was insinuating that I was driving myself crazy by searching the net and coming up with new fears. But it would help if I had a more organized system so that maybe I wouldn't re-confuse myself with each conversation we have with one or the other doctors. The thing is, they answer my questions, but I don't have the background to necessarily understand the scope of it. Or maybe I think I understand at the time, but then later I don't. Thanks for the input and the suggestions. It's probably good to keep an ongoing log, even if it is not just to document conversations.
Good night. Sorry for rambling on....
Michele

Michele, this may bring the wrath of the universe down on my head, but I would suggest to you that you limit you "net" searches to OCF and one or two other very reliable sources. We cannot master the practice of medicine-much less the speciality of Head and Neck Cancer in a few months- we can only narrow down to the few most reliable resources out there, and that is a mind boggling experience in itself. Let me save you some time and grief. Brian and many other members of this group are as knowledegable about this disease as anyone you will find. Get you "fears about future "what ifs" under control[i.e. on the back burner], and start concentrating on the next few months, because that is what you are going to be dealing with. Insist that you understand the tx. as it is proposed and the daily requirements of you and Jesse. Understand and deal with step 1 and start asking about step 2, so that you can be prepared for that. I just posted a question in "Currently in treatment" about John's chemo which will start in 4 to 6 weeks. I want to have some time to get ready. Things usually happen so fast [as you know], we usually don't have time to get prepared. Beside my "questions for the Docs" notebook, I have kept a journal for John since his diagnosis and treament started in March 05. It is a comfort and encouragement to him to read how much he has battled and overcome in the past year and it has been a real help to me in fighting with his insurance co. when I had to, and quite frankly, it has given me a diary of my own life over the past year. I also take a calendar to every Doc. appt. This calendar has all our important family birthdays, school events, family reunions, etc. on it, and if I need to negotiate an appointment,I will! We still have a family and A LIFE! You can't procrastinate any longer, Michele, you got to get it together and get it going If you want to talk, e-mail me[ altho I much rather talk to you on the phone-I'm older than e-mail]. Amy

I do need to get going - a log is something I know will be very helpful. Just seems that it is one more thing that I have to keep up with. I also realize I have to quit searching the net and basically, since I have found this website, I have done that as I realize that what I read and learn here is much more help to me than the technical jargon elsewhere. As long as I realize, which I do, that everyone reacts differently to these treatments. There is still much in common, and it is especially helpful to read tips about what others have learned to ease pain and discomfort. I am very grateful to all of you and it is a comfort to know I can share thoughts and ask questions here. At some point, I may be able to offer someone something back. I need to curtail my "net" time, however, and get my log started before I start forgetting what the progression has been to this point. Thanks everyone for your help.
Michele

Michele, at to the "keeping up with" issue, I keep everything in a 13"tall x 16"wide carry bag that has a hard bottom and will sit on the floor by itself. [it's classy looking-navy and beige and has my name on it- it was a gift from my daughter, who ordered it from Lillian Vernon catalog or some such] everything is in it, the calendar, John's journal, question notebook, and it sits by my chair and is ready to go when I go. I also have a 2" ring binder set up with tabs to keep track of important ph #'s[Docs,nurses, Ins co, Provider network #'s] EOB's from the ins co.and issues with the same, meds John is on, and anything else that might be pertinent to his treatment. This might be overkill to someone else, but since my stroke, I have to be organized.
Plus, organization brings with it the same great feeling that Spring Cleaning does Amy

Michele, I just want to commend you for doing everything you are doing so far. When I was fighting this, I did all the research/ question-asking and log-keeping myself because my husband seemed to be overwhelmed simply by having to take me to doctor's appointments, pick up prescriptions, adn take care of other household stuff without me. Honestly, he just really didn't want to let the reality of what I was facing in and I didn't have the energy to fight that right then--I was too busy taking care of myself as best I could.

But the organization thing is key. I have a large notebook with dividers and pockets that I started keeping. I ahd a section for all the chemo info., a section for the rad. info. a setion for the surgery info., one for the second opinion we got, one for all the info. I got about dealing with all the miserable side effects such as mucositits, a section for info. about people and organizations that could help with transportation/shopping, etc. In addition, I kept a journal of my own throughts/feelings/reactions during the whole process. In addition to that I kept a log for every day of how much I ate/drank/when I took my meds, how much sleep I was getting, if I was running a fever, if I vomited, and any other symptoms that might be of concern.

I had special pages for questions to ask at the next appointment with each doc: RO, MO, ENT.

Then I ended up also having a small file of research articles I found and read which answered some questions I had.

People wonder why I didn't get more reacreational reading done during treatment and recovery! Just taking care of myself was more than a full time job. John and Jesse are lucky they have caregivers doing this for them.

Nelie

Michelle,

My husband just finished radiation and chemo on January 16, 2005. He too has an unknown primary with a tumor in his left lumph node <6mm, stage IIIB. His first pet scan showed a hot spot on his left tonsil - but the biopsy came out clean. They think the primary could have regressed when it spread to the lymph node. I have been trying to find more info on this also. What I have read, in layman's terms, they can predict where the primary should be by the location of the tumor in the lumph node - because of the way the drainage occurs, etc. My husband just finished radiation of the entire throat and chemo. It was really rough toward the end of treatment. He opted not to get a feeding tube which I believe now was a big mistake. He ended up in the hospital right after treatment ended. We are now on a liquid nutrition through IVs during the evenings. He is just starting to show improvement daily 1 month after treatments. We had another pet scan last week and will find out the results on Feb 27. Praying the treatments worked. The doctors will decide after the results of the pet scan whether or not to perform the neck dissection. There are new studies looking at monitoring rather than neck dissection. The radiation doesn't start out bad but last few weeks are very rough. Just keep counting down with him after the half way mark.

Hang in there!

Hi, I couldn't tell if you got your Erbitux question answered or not, so here is some info for you to look at. Hope it helps. Hang in there!
http://www.drugs.com/erbitux.html

Andrea