Two weeks ago my father was diagnosed with scc on his left tonsil. He starts chemo & radiation on sept.17. The cancer hasn't spread anywhere and it was diagnosed early, so the prognosis is good. They will be using IMRT and chemo one week on and one week off a total of 5 times.They don't like to use amifostine as they feel it conflict with his treatmant regimen. My sisters, mothers and I are taking this all in rapid order. there are appts. with the oncology associates, his dentist, my sister has set up a website where she can post updates on the treatment and his condition,I am doing research on scc(thank God for this site) and reviewing anything related to his treatment. The worst part of this is is making decisions as we educate ourselves about his condition. We learn something new everyday and hope it is enough to make an informed decision. This message board has been a great source of info;knowing that others have been where we are going and have been treated successfully has been a great solace

Hello - welcome to the site, glad you found us when you needed us. My husband also had a primary tumour in his left tonsil although his had spread to at least 1 lymph node.

Your father is fortunate that he has what sounds like a terrific team helping him out. If his/your experience is anything like ours, it will be rough going after the first week or so. As I've written elsewhere, be psychologically prepared for symptoms to arise that the doctors forgot to tell you about ( they can be frightening but often are not serious) and make sure the small things are taken care of such as frequent rinsing with whatever your doctor advises, taking laxatives/stool softeners to avoid unnecessary constipation from strong pain killers, soaking the area affected by the radiation if it begans to get sore with warm lightly salted water and setting up a comfortable place to sit and feed through the PEG tube ( if your father gets one- it really helped my husband maintain his weight).

Today, nine months post treatment, my husband is back working full time and eating most things with him feeling that most of his taste is back.

As for doing research, everyone is different. Myself, I stayed up late nights for several weeks after the diagnosis and during treatment reading medical journals and probably most of the posts on this site. Although I felt informed my husband was not too interested. He had complete trust in his doctors. In fact, my research pretty much confirmed that they were doing what seemed like the best thing for John's diagnosis but I sometimes wondered if I was torturing myself with all the "what ifs" all that info created in my mind.

To this day, when we go for John's monthly check-up the radiation oncologist always turns to me at the end and asks: "do YOU have any questions" because I had so many along the way.

This site is a wonderful place in so many ways. Please come here as often as you need to ask questions. The search function also often turns up several existing posts on a particular issue.

Mary

Thanks for the reply, Mary! It means alot to hear from a fellow caregiver! We are having similar experiences with our cancer battle. I like to know as much as I can, some of us are content to take the doctors' lead. Everyone in my family has had a skill or gift that has contributed to the fight,
i.e. my sister is able to keep us focused so we don't spend too much time on matters that may detract from more immediate issues.
By the way, good news! My father has found out that the amifostine(ethyol) is not in conflict with his treatment, just the clinical trial, which he has chosen not to do. So after some research and careful thought he has decided to have this added to his treatment. I am now researching caregiving, as his treatment protocol is now locked in.Thanks again for your input and i am glad you husband has his life back again!
Scott

Hi, Scott- iat'w good to read that your family is going to share the caregiving role, because it can be tough for one person to keep all the balls in the air. I, too, am a researcher, but my husband won't get near a computer. I quickly learned to print and compile in a notebook questions [90% of my research was on this site] as they pertained to what was happening in the present and what might happen at the next stage [ie: 1st 4 rad txs vs. next 10] It kept me prepared for the side effects that could or did crop up, and made both us less frightened by them. Knowing about these possibilities in advance also helped me manage my time and household duties so that I would be fully available to John. From a caregiver perspective, eliminating as much outside stress as possible is really a good thing to do. Best wishes to your family. Amy

Scott, have your dad's doctors recommended amifostine? Generally with IMRT, the radiation can be so precisely focused that some, if not all, of the parotid glands can be saved. In my case, although I had a lot of radiation all around my neck and jaw, I have recovered probably 97% of pre-treatment saliva, without needing amifostine, which many people cannot tolerate. I would ask the radiation oncologist about this, because if you can spare your dad this drug, things will be easier for him. Search for amifostine on this site and you will understand my reservations.

Scott --

If your Dad is going to take amifostine, be advised (as Joanna warns) that it can be difficult to tolerate. It is imperative that your father folow the Medimmune guidelines *exactly* -- especially as regards pre-inoculation hydration (20-24 oz. water) and a serious anti-nausea drug (Barry used Zofran) taken 90 minutes before the injection (Compazine did NOT work!). Also, careful coordination with the radiation team so that the radiation is given in the 30-45 minutes window after the drug is injected. The nurse will watch for severe blood pressure drops and also, any sign of a generalized rash. Our nurse applied hydrocortisone cream to the two injection sites immediately afterwards. Nausea (often severe) seems to be the biggest issue, and they did not give Barry amifostine on the days he received chemotherapy for this reason. Our RO said that most of his patients can only tolerate amifostine for about 3-4 weeks (out of 6-7) due to persistent nausea and in a few cases, generalized rashes, but that even this seemed to help preserve salivary function.

Barry came through with what he estimates to be about 65-70% and now has about 80-85% function, but he also takes Evoxac and finds chewing Xylityol gum to really help as well.

He is glad he took the amifostine but would never want to go through it again. It was, he says, the worst part of the treatment.

Gail

Thanks everyone for your experiences and insights!
So far, my research has served to confirm that the treatment my dad is getting is the best available.The hospital is Lakeland Medical Center
in St.Joseph Mich. We've been happy with all the doctors and have had all our questions answered satisfactorily.Concerning the ethyol,my father had a long talk with the RO and did alot of research before he made his decision. We are all hoping he can endure the side effects long enough for the drug to have a significant effect.According to the RO,ALL the salivary glands will be affected as they will be be treating both sides of the neck and I assume the jaw also.Thanks for all detailed information concerning the ethyol Gail, It will be very helpful!Thanks for your insights on the benefits of research JAM.Your comment on managing ones schedule by anticipating problems was particularily helpful.Thanks again everyone for your support.
I am now looking for information regarding trismus( losing mobility of the jaw due to radiation treatments). Any information would be most welcome.
Scott

Scott, we'll be availavle to hold hands throughout! It may not be on a visible banner- but the motto of most people here is truly "When the going gets tough-the tough get going" Amy

Hi...this is Lisa; I am one of Scott's sisters. He has told me a lot about this site, and I have just now gotten a few moments in my schedule to get here and read what has been going on. I am very thankful that my brother has had the time and resources to do this research. Since my other sister and her son have been sick for the last few weeks, I have been the one going to the marathon doctor's appointment with my parents. Between the research, information given by the doctor's, and questions asked, as Scott has mentioned, we feel that my parents have made the best possible decisions in the time they have had. Scott and I have actually been through a unique time ourselves, being that he donated his kidney to me in May of 2005. Although I understand that kidney failure/dialysis and cancer are not the same issue, there is a comradary in understanding what it's like to go through a long-term illness with a lot of medical decisions to make. I'm glad I was able to be there with my parents while conferring with the doctor's--for me, that is my piece of mind; knowing that the doctor's we are dealing with are competant, are willing to listen to us and work with us, value our opinions and questions, and treat my father with respect. From the research that Scott has done, we are confident that dad is receiving the latest technology in treatment, which also gives us peace of mind. I am so thankful for my family; we have gotten through tough medical times before as a strong family unit, and I know this will be just another victorious outcome! Thank you to all of you for your advice and knowledge from your experiences. I know for me, when I can help someone because of the difficulties I've been through, it somehow gives a reason for all I went through.
Dad goes into the hospital in 2 days, and the journey begins. I am concerned how my parents will deal with their emotions the first night she has to leave him at the hospital, but some stuggles you do have to face alone, as I well know. I'll be on here from time to time as well with questions, if that's alright. Scott was right...this is an awesome site! Thank you all for your advise.

Hi Scott and Lisa

My Father age 69 finished his treatment June 2/06 he had 35 IMRT rads and 3 chemo's (Cisplatin) for base of tongue and nodes both sides of neck.

I too did so much research before hand and it made me sick with worry. Sometimes I felt the more I read the crazier I got. Then I started chatting online with others that had been thru it and that helped alot. For the most part his treatment seemed the standard treatment.

I felt the dr's didn't tell us much about side effects of radiation (I knew alot from my research). Well the chemo dr was very upfront and at first my Dad was not going to have the chemo because of what he told us; (one concern was hearing as he's already deaf in one ear) but the Rad dr said she felt it was needed to get the cancer out of the nodes; so that was all he needed to hear and he did it.

My Dad didn't want to know too much about what I read and said he'll deal with the treatment as we go along. I didn't want to tell my parents things that would worry or stress them. The first 3 weeks were pretty easy; then he'd say and still says 'they didn't tell us this or that'. I agree. Sometimes I think learning as you go along is best; as you get so crazy sick before hand with all the reading; then I think (well for 'me' anyhow; don't think my Dad feels this way) but treatment seemed smoother compared to what I read. So I'm not sure what is the best approach.

My Dad is claustrophobic and wearing a mask for rad was something he thought would be very hard to do. However he got thru them all. No it was not fun but he did it.

He did very well in treatment. He did all 3 chemo's; yet many can't have the 3rd one if their bloodwork is not up to par. (His hearing is distorted from chemo).

My Dad has a high tolerance for pain and does not like pain meds. He ate by mouth right up till about week 5 of treatment (which is great) then started using the PEG. He didn't take any pain meds till about week 7 of treatment and used them for about 2 weeks. Two weeks after treatment finished he started 'slowly' eating by mouth again. The PEG is a great thing and; some of the reading had me sick thinking about it; yet my Dad welcomed it with no concern.

His biggest issue during treatment was the phlegm that you get around weeks 5 or so. That really bothered him and getting it up and out was very hard.

The can feeding sometimes made him feel nauseous; but he managed to get in at least 3 to 4 cans a day (not many calories). He tried a few different brands. He lost 50 lbs but had the extra weight to begin with.

He had a few road bumps; we went to an emergency 2 times; once for a blood blister on the lip; they snipped off and sent us home (easy). Another time his leg was sore so the dr sent us for an ultra sound and it showed a clot in the calf; of his bad leg; so we to get a shot of thinner at the emerg. They said it's common and not of real concern. He took thinners for a few months.

My family is very close and supportive everyone helps out. My mother and I took him to every treatment appointment (I drove) and we take him to every dr appointment, test etc. I have a binder I take at every appt; I keep notes, questions, articles, test results, dr's phone numbers, medications, etc etc (this is important as you tend to forget what the dr's say). One dr told me it's great that I do that and he wishes more people would. However I think other dr's get annoyed ha. And I ask lots questions all the time too.

Well it's been 3 1/2 months since my Dad finished his treatment. Not everything taste the best; and he can't always eat large portions but they dine out, from Indian food to plain old burgers etc. He drives again; and goes out on his own. He's doing very well, and looks so much better. He's still a bit tired and not quite himself yet and gets frustrated at times; his voice is hoarse and feels phlegmy (not like before) but it annoys him. I think he's doing great! (especially compared to what I had read before treatment). His mouth is dry, but not like some that I read of. We were told he had a large dose of rad to a large area. His neck didn't get that red; like some I've read. So like others have said; it's different for everyone. Now the more I read it seems there is no set treatment for this type of cancer.

His 2 month follow up scope showed tumour at base of tongue is gone. His MRI and CT scans done at weeks 7 and 8 (after treatment) show tumour gone and neck nodes have shrunk 50%. Even though he felt like crap during treatment at times and it was hard; when he got the results; he said the treatment was well worth it!

He had a PET at week 11; and it shows no cancer. Surgeon is suggesting Neck Dissections, to double check; but we are still thinking that one over (since the PET was all good). No one told us about ND before treatment (but again this is something I had read about).

Some Tips:

Get an IV pole and a Kangaroo pump (might be called something else there); it really made the feedings easy and more relaxing for both my parents.

Make sure your Dad rinses with club soda often thru out the day, everyday. The dr will also give you a rinse that soothes the throat and it helps.

Make sure he gets lots of hydration even if he insists not. My Dad felt very sick on week 7 last week of treatment, so they gave him daily IV hydration at the treatment hospital and that helped (takes a couple of hours each day, in and out) so you can always ask about that if needed.

Eat lots and well, now.

Sleep with a humidifier on; that helps.

Visit your father often; keep him busy and happy. Remember laughter can really help.

If he needs pain meds use them. Take stool softeners.

Stay positive and strong.

If you have any questions as you go along during treatment, please feel free to email me.

Best wishes to your father and your family!