hello everybody, my name is Marie, i'm 34yrs old, mother of 3, I live in Norwalk, CA. I was recently diagnosed with SCC in my right tonsil which they removed on 8/4/06. Now it has spread to my lymp nodes and I must have radiation and chemo and I'm scared to death. I'm a very perky person always on the go. And to be told that I might not even have the energy to get out of bed scares me to death. right now I know that I'm stage IV, but I in the process from transferring from a county hospital to Long Beach Memorial. So I meet with the radiation team 8/23/06, monday I'll know when I meet the chemo doctor. I'm afraid that it has spread even further since it's been 2 weeks. I wish I knew exactly what to expect from the treatments. How is it really going to affect me. Please Help!!!!!

Hi Marie-

I don't know anything (a newbie myself), but I'm happy to compare notes as we go through this. I'll share whatever seems useful. A nurse friend suggested I try to gain a few pounds and eat whatever I'll miss. I have a banana cream pie with my name on it set up for dinner. Sweet!

Teamshrink

PS: I'm scared, too.

thank you, i also heard that after treatment starts that it will feel like glass is going down your throat when you eat. I still can't eat certain foods and all they did was take out my tonsils. My husband tries to help my fear but hes right it's not happening to him directly so hes afraid of saying something wrong. I feel so tired sometimes and I haven't started treatments and the lump in my neck hurts at times.

P.S. we all can be scared together

I was diagonosed 8/7/02 with stage 4 tonsil cancer. Had 9 hour surgery to remove the tonsil and a radical heck disection. 4 of 75 lymph nodes removed were positive.

6 weeks after the surgery, I had 33 radiation concurrently with 7 weekly chemo. The recovery was very tough for me. There was episode of infection that I had to stop the radiation, and the recovery is slow, I end up had hyperbaric oxygen treatment too.

It took me a good 12 months to start feeling better, the bottom line is that after the agrressive treatment, I am still around today.

There will be 3 to 4 weeks during the radiation that you cannot eat because the throat hurts a lot. I had to take some medicine to numb my throat before swallowing.

Marie, your time frame between surgery and rad/chemo seems about normal to me. I, too, was a stage IV and had to wait even longer while some teeth were extracted. Our cancers were growing for a long time, so a couple of weeks won't make any appreciable difference.

Now, about being afraid. Just look at this as one short battle you have to fight. In the overall scheme of things, this is a very small period in your life. I was tired, but never had to stay in bed. I cooked for my husband sometimes and did laundry. I just took things slow and easy.

I prepared myself mentally for something really, truly horrible, and it never even got close to that. I had a PEG so did not have to worry about the pain of eating. I think that made things much, much easier for me.

Put on your tough pants, Marie, and just march right into battle. You can do this and do it well!

Marie, I too was diagnosed with SCC in my right tonsil. I also had my tonsils taken out, and i have had a lymphnode taken out (cervical) too. I have just completed my first week of radiation and to be honest, it was no big deal, didnt feel anything. The mask is the worst part! You have to get use to that in itself, but other than that, week 1 is easy. I will let you know about week 2 as soon as i complete it. If i can help you in anyway, please let me know. Good luck, and stay strong. Go into this with a "positive" attitude...and know you have tons of people on this forum that will help you get through this.

Marie, Just posted that I hadn't read your other posts, then saw this one. Is your husband up for getting on this website and reading about your tx. from people who have been through it? I promise- it will be a Great Benefit to him as a caregiver and keep his fear level down if you have side effects during treatment. Since you have young children, you and your husband will need a support system in place to help with household duties because you will not feel "too perky" while going through treatment. And while treatment is different for everyone, there are some guarantees that at some point, you will need to curl up and make the world go away for a while. So now is the time to address issues like car pooling, gro. shopping, school demands, household chores, etc. No one should count on YOU to do anything other than concentrate on getting well. And you can contribute when you feel up to it.Now is the time to get everyone organized. We are here for you. Amy

Hi Marie;
and welcome to the forum. It's ok to be scared shitless - we all were (and I still am every now & then). Don't to too concerned about what might or might not happen in the future. Your experience may be very mild compared to others as we all respond differently to treatment.

I had a right tonsil, advanced staging as well and only had radiation and chemo and 3 1/2+ years later I am still here and doing well. The worst part of the fatique, if it hits you, will be roughly from mid treatment to 2-3 months post treatment. As others have suggested you will need a support system. If you can stay on top of fluid and nutrition requirements then you may be able to shorten the time a little bit. I met with a nutritionist weekly.

It was probably already in your lymph nodes and they missed it. If you can find access to a comprehensive cancer center I would highly recommend it. There are several of them in So.Cal. Here is a link to the NCI recognized cancer centers:
http://www3.cancer.gov/cancercenters/centerslist.html

Marie, Gary is quite right that people ary widely inn terms of how hard they find the radiation and chemo. My philosophy was hope for the best and prepare for the worst.

So as Amy said, make sure you call in every favor owed you and put every person who asks to help to work so that you do not need to be the one taking care of other things during your treatment. If you have never made it all about you before, this is a battle where it is definitely all about you. Remember that (I think it's often harder for women to do that because so many other people rely on them). I'm not saying to neglect your family when you feel up to being with them, just remember that for this couple of months the first (and it may become the only) thing you need to do is fight your cancer battle.

As for being scared, we all were at the point you're at and most of us still are from time to time anyway. Feel free to talk about that here if you need to.

I have gotten tons of good information and great support through this forum. I hope you find it equally helpful.

Nelie

Hello everyone, I too am a newbie I was diagnosed last month with SCC base of tongue w right side lymph involvement state IV. I have had 4 weekly rounds of chemo and am going in Tuesday for Radiation initial evaluation. We are all in this together and I am so thankful for this site and all the information it contains. Thanks Brian for all your work.

Joe

thank you all for such good information. i'm so thankful that an oncology nurse gave me the info for this webiste. i do have a great support system, i'm a very active member in my community i just recieved the superintendent's community award for our school district only 5 people recieved the award in our whole district. and everybody is trying to help out. it's just hard for me, i've always have been the one to give not really recieve. but it's been such a blessing. im going to set a time for both my husband and i to get on this site for tx info. but what is PEG? i feel alot more at ease since i have read all your information.. again thanks please keep in touch

Hi Marie,
Cancer is tough enough without having to deal with it during the "busiest" time in a womans life...........which is when she is raising her children. With you being so young, I imagine your children are also pretty young. I had a 9, 11 and 12 year old still at home (I was 41) and I had two grandaughters, 3 and 4 when I was going through treatment. I am here to tell you that it's hard but very, very doable..........and you will get through it just fine. You'll be tired and there will be days that the tiredness will require naps, especially during the last couple weeks of treatment and the first couple of weeks after treatment. Your neck will get burned but it won't halt your life. It's sore but doesn't get in the way of day to day life. I had a peg tube and used it as my sole source of nutrition from about my third week of treatment. I didn't try to eat, it hurt and the food tasted horrible. The PEG made life easier, and easier is what I needed at that time. I would suggest getting one. I did laundry, took the kids to their activities, did my housework. I would take a nap after treatment after I got into about my 5th week, and would take another nap later in the day. That is also when I started taking pain meds that also helped me sleep. I guess what I'm trying to say is that it's no fun, but if you put your mind to it, you can continue to manage your house and your family.
Keep us posted and ask questions. When you feel scared, go outside and take a deep breath of fresh air, then come back to this site and read about all the MANY survivors!

Hi Marie,

Welcome to the forum, there's great information here. You sound like you have a wonderful attitude and that will help you. A PEG tube is a catheter that is surgically inserted into your stomach that you put liquid food and water into. My husband had one for 7 months and just had it removed. He is convinced that it was a life saver during his radiation/chemo treatments.

Most people have the PEG tube inserted as a precaution and probably 90% use them. There will come a time when you are unable to swallow due to the treatments and the PEG tube allows you to maintain an adequate amount of nutrition and hydration. You will find a lot of information on this site about them.

Ask the radiologist or surgeon about what's involved in getting a PEG tube. If they say you don't need one ask them how they will ensure that you can maintain an appropriate level of nutrition and hydration when you are at the peak of side effects.

It's like an insurance policy - if you don't need it great, but if you do you don't want to wait too long to get it.

Best wishes to you during your treatments.
Regards JoAnne

Without igniting the PEG vs. No PEG debate, I just want to note that even more important to me when my mouth and throat were just too messed up (technical term) to swallow, was that I was able to get pain and other meds easily via the PEG. My experience ws entirely positive. No pain, no leak no smell, and I just tucked the end into my bra when not in use and went about my business. The only thing I am embarrassed about during my treatment was what a complete and total wimp I was about getting a PEG. A prime example of worry being a total waste of time and energy.

Many of you may deem this information totally irrelevant, but I'm posting it anyway. A couple of weeks ago, while sitting with John for his Erbitux infusion, I saw the book "Uplift" by Barbara Delinsky on the magazine rack outside his chemo cubicle. Because I have 2 friends, miles away, that are breast cancer survivors , I asked if I could check the book out for a few weeks. It is a great read for any type of cancer patient or caregiver. It speaks to the most positive and proactive attitudes that survivors need, and it made me realize that no matter what kind of cancer one is diagnosed with, the battle to beat it is the same. [Since this book is specifically about breast cancer, it might appeal to the women more.] Amy

thank you all so much. i talker with my husband today about the PEG and we both agreed that if it is going to help me eat i must ask about it. and believe me before this forum i was dead against having a feeding tube. but thanks to you all and reading i see that if i want to aleast try to keep up with my 4 yr old their are sacrifices i must make.... and hey i could stad to lose a few pounds. i go wed to rad and their calling me tomorrow to set up my chemo appt. today was kinda hard now i'm feeling a;most the same symptoms on my left side. no lump but pain like a migraine only on the left side of my face and neck... so again thank you all and god bless you all

Marie

Welcome to the board Marie. Just wanted to let you know my husband was 37 when diagnosed with stage IV tonsil cancer and like you we have three children. I know it is a scary place you are in right now, but thought it might help for you to know that he had his six year check up last May and all is going great now. So, hang in there and don't give up hope.

Julie -

I can't speak for Marie but I can tell you that your message sure makes me feel a little better. I wish more people who are 5+ years out would kindly remind us newbies that even stage IV disease is curable!

Thanks -

Mike

Mike, I am four years and 3 months out from diagnosis date, Stage IV and very happy about it! Keep up the good fight!
Carol

Great to hear Carol. Thank you! Did you go to Hopkins too?

mike your right it's good to hear from people who have fought this fight and survived in good health. and julie god bless you and your family please if you have any advice for me and my husband it would be appreciated. and carol congrats on your 4 yrs 3mos. thant is one thing that i see is after this fight is over i'll still be on here doing what you all are doing help the newbie with encouragement and information. it's amazing how we all could be across the world but you can feel the love and compassion in every word...... God Bless you all

hello everybody it's been a long time. well just to give a update i just had my PEG inserted (thursday) i'm still in alot of pain but i thinks it's because i haven't had a bowel movement i've tried stool softeners and a laxitive no good so any suggestions please? good news - they thought my cancer had spread but that's a negative. bad news - ontop of the cancer i have ulcers ( lot's of them) but them too are treatable but they are painful. my tube is inserted alittle high to me but it is now difficult to sleep. my parents and family have been trying to help out so much. my dad and step mother live in louisana so it's hard for them to be here physically but they still managed to buy a recliner for me... and my baby brother he works to help support my mother who has a tumor in her uterous it's begnin so they just took it out after 8 years so she doesn't work but he took me to get other supplies i needed and my mother has been trying to help me with the kids so it's great especially since i've been the outcast for so long from my brother and sisters... but when things needed to be done and bought my babba stepped up and made sure they were done... God Bless You ALL

Marie, Keep going girl! Here are a couple of things that helped John with the constipation problem. #1. Correctol tablets [disolved in water so he could put them down his peg] and
#2. Benefiber [we buy it at Walmart] It's a powder you mix with water, juice or whatever and helps keep you regular. When you get nutrition by peg, you don't get enough fiber. Also prune juice might help you. Amy