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!

Hi Everybody,

I am Scott's and Lisa's Mom. This looks like a very informative web site. I am so thankful for my kids and their hel and insite! I will be refering to this website often and have a few questions of my own. It is most encouraging to read the stories of the survivors. Hopefully, my husband will be one of them. Mary

He WILL be one of them, mom :-) I love you!

Dear Mary, glad YOU have joined us! [Scott and Lisa too, but it sounds like you are the big cog in the wheel with your husband's care} Wives who are caregivers have a unique role in this fight. I will share with you that we have a son [my stepson], a daughter in law and my daughter [John's stepdaughter] all involved in our fight, but their day to day interaction with our dealing with this disease have been nil. The 2 daughters are not local and John's son was running our business. I have gotten lots of advice from them [and some criticism] that I have had to take with a grain of salt, because they were not talking to our Doctors, nor were they "doing the nursing". So, Mary, my advice to you, since I am also in the trenches here, is to speak your mind, ask your questions as they arise and follow your gut feelings as to what is going on with your husband. It is tough ato not get caught up in what other people think is best. Communication is good, but you have to follow your gut feelings ab out your husband- I wager you know him better than anyone. Amy

Scott,here
My Dad is a week into his chemo and radiation, was on ethyol (amifostine) for 3 days, had severe nausea, vomiting, low blood pressure with resulting fatigue and fluid in his lungs. He was not able to keep any food down for a week. He had a PEG (feeding tube)put in Wednesday and is getting a slow feed of Jevity (liquid nutrients). All the side effects I mentioned above have dimnished or are gone 2 days after having stopped the ethyol injections, except for the fluid in the lungs; he is getting a nebuliser every 4 hours and antibiotics and is almost back to normal.
Dr. Cisneros, our oncoligist, says these are common side effects of ethyol.
We thought that being a patient advocate was an option , not a requirement! After keeping an eye on our father when he was not able to make decisions for himself we discovered that the doctors and nurses ARE NOT GOD and make mistakes.
We found ourselves having to sit on these people
and make sure his needs were being addressed.
One thing we found helpful was keeping journal of the details of his treatment. A written account was much easier to follow than an oral account as we took turns staying with our father.
Once again, thanks for all your insights and experinces! They have been an invaluable source of information for my father and ouselves as we face new challenges in our cancer battle!

Hi, glad things are improving.

Who suggested ethyol? I hadn't heard of it till I read it online. The dr's here didn't mention it.

Is your father having Cisplatin? and IMRT Rad?
How old is your father?

Sounds like you guys are doing a good job at helping him out! Keep up the good work keep reminding your father that things do get better.

Lisa

Lisa,
Our RO told us about ethyol - we researched it, talked to him again and my dad decided to add it to his treatment. He knew there could be severe side effects but decided it was worth the risk. It really knocked him around and I would be surprised if he continues to use it.
He is 68, his cancer is stage 2, his chemo regimen is a 24 hour I.V. for 5 days of flourouracil and a pill twice a day of hydrea (If I'm correct ,the cisplatin would have been added if he had been stage 3). He is getting an IMRT twice a day. The treatments are one week on and one week off for 10 weeks.
This week ,as we were making sure he was being taken care of as he suffered from the side effects from the ethyol and we struggled with some health care issues, I almost forgot that he had cancer! I made mental list of our objectives; 1. He got all his chemo and radiation treatments this week. 2. he had 3 days of ethyol which is better than nothing. 3.his tumor has decreased in size.So, in terms of long term goals, he is making progress!
Scott

Thanks Scott for sharing your info.

Well your fathers treatment is different then what my Dad had. He had 35 IMRT rads, once a day 5 days a week (7 weeks). 3 Cisplatin chemo's at weeks 1, 3 and 6. With each one he stayed in overnight. First a couple hours of IV hydration; then chemo then I think it was more hydration; then IV pack of anti-nausea and steroids.

My Dad is 69 and he's doing very well 3 1/2 months since treatment finished. He had no problems the first 3 weeks of treatment. The 72 year old man we met having the same treatment did good too overall. Yes he'll get sick, tired etc; but it does get better. My Dad is eating well; not everything tastes good and yes his mouth is dry but nothing like some folks.

I made up a binder; I keep test results; questions, notes etc. It's very easy to forgot or confuse what the dr's say.

Keep us posted on your father; you guys will get thru this. Feel free to email me if you have any questions.

Take care,
Lisa

Lisa here--

As Scott has mentioned, this past week for dad really threw everyone for a loop. I knew that the ethyol would have some side effects to deal with, but never in my wildest dreams would I have imagined how violently nauscious it would have made him. As for the staff at the facility he is being treated at, I was not surprised, as I have had similar experinces at the same facility...I knew we would be in for a full-time battle to get the nursing staff to do their job correctly. I would be very surprised if my father went back on the ethyol...in fact, the other day, he said "I wish I had never heard the word ethyol"...I think that pretty much says it all. He had a chest x-ray today, and we will find out tomorrow whether or not he has contracted pnemonia. An interesting note...I have an online friend who is a paramedic who says he has seen some pretty nasty stuff go on with patients who have been on lasix and then get pnemonia. The lasix causes the phlem to become very thick and hard to cough up from the lungs. Lasix can be very helpful for what it's meant to do, but can take a bit too much fluid out of the phlem. I know my father is having a hard time getting the phlem up, and I'm imagining that is why. Once we get dad's lungs cleared out and home (hopefully) for a few days before he begins his next round of chemo/radiation, I'm hoping that it will go a bit better for him. It's been nice to see him smiling and joking a bit the past few days. He really had us all concerned this past week.
I'm so thankful for my family and how we have all united to ensure the best care for dad. I love you guys!

One problem with Ethyol (amifostine) - -which a medical doctor who was getting chemoradiation at the same time as Barry discovered -- is that it seems to hit some folks getting cisplatin (which she was, for a recurrent oral tongue cancer) very hard. I saw her at a meeting a few months later and she said in retrospect she would have scheduled the ethyol so that she did not take it at all the weeks she had the cisplatin (3 treatments). She thought that would have allowed her to tolerate it. Instead she took ethyol the day after her first chemo and was really sick for a couple of days, and gave it up.

Barry had carboplatin (because of the risk of hearing loss) and as a less toxic drug it may have contributed to his tolkerance for the ethyol.

I should also say that Ethyol should be given by injection (2 injections at a time). It used to be given by IV infusion and caused lots of severe blood pressure drops and more serious side effects.

It is a difficult drug, I think folks should try it (with all due caution) but don't be disheartened if you can't handle it. Our radiation oncologist (who is an amifostine expert) says it adds about 15% improvement to salivary function, but that IMRT (vs. conventional beam radiation) is actually more important in parotid preservation.

Lisa -- ask your oncologist about your dad taking guafenesin to thin his phelgm -- either as a (diluted) liquid or as a pill (Mucinex). The latter really helped my husband get rid of thick secretions but it is a large timed-release tablet and cannot be cut or ground up. If your dad can't swallow it, then try guafenesin syrup (dilute it in water, otherwise the syrup burns a senstive mouth and throat).

Gail

Gail--
Thank you for your time in replying and your suggestions. I'm sure dad will not try the ethyol again due to the violent reactions he had from it. I am very hopeful that the IMRT will do a good job of keeping any damage to his salivatory glands at a minimal...that and God's intervention. He is on the Mucinex and is much more productive in the coughing up of and discarding his phlegm. He is starting to show outer skin signs from the radiation on his cheek, which is to be expected, and has experienced a substantial weight loss for the less than two weeks he's been treated (22 lbs). He has bounced back quite well, though, and his strength has been good this week. He does have laringitis, though...is that a side effect of the treatment or is that just because he has been through so much? Just wondering if anyone has had experience with that? He goes back in on Sunday for round 2. I'm hoping, now that he is off the Ethyol that this round won't be quiet as traumatic for him. He really suffered last week
--Lisa

Scott and Lisa how is your father doing?

LisaB

Very interesting conversations about the Amifostine. I've been on it about 4 weeks now. Preparing for my last Cisplatin treatment this week and not looking forward to the two combined again. I handled the Amifostine very well the first three weeks. Then, last week I started really getting ill about an hour and half after treatment. Not sure if the Amifostine is the root cause or not, but if it saves tissue I'm sticking 5 more shots out!! Thank you all for sharing.

Steve

Steve, I didn't have Amifostine but i did have 3 cisplatins and concurrent 35 IMRT. The first cis went fine. my nausea started after the 2nd and lasted almost 2 weeks post tx.

Hang in there, you can do it !!!

This is Lisa--
Dad has really had a rough time of it. Even though he has been off the Ethyol, his is still battling nauscia all the time. We have found that a cocktail of Compozine, Reglan and Zofran, along with a .5 injection of Adivan is the only way to get him through his radiation treatments without vomiting. He is also on Zoloft for the anxiety and today, we just upped his pain patch. You know, you read and hear about what a tough road it's going to be, but you never really understand it all until you are there in the thick of it. Between me, my brother, mom and sister, we are with him from 6:30 a.m. until about 10:00 p.m. We are concerned about him while he is on the Adivan, especially getting up to go to the restroom and walking for exercise. He has already had a fall and bumped his head on his bead, and his thought process isn't clear. Today, he hit the halfway point of his protocol, so it's all downhill from here. Starting to see that glimmer of light at the end of the tunnel.

Steve F., I am really glad that you have been able to tollerate the ethyol. I really hope it helps in preserving your healthy tissue. I hope the last 5 shots go well for you. :-)

Lisa, all or most of us had nausea problems. Some, like me, were probably worse than others. I battled nausea until almost 2 weeks after tx ended. The most important thing (one of) is to make sure you keep him hydrated and fed. Also watch out for contispation. None of us would want to relive our tx experiences but we made it through and he needs to understand that. We aren't superpeople either. HIS GOAL NOW IS TO SURVIVE THE TREATMENT.

Hi Lisa,

Boy it sounds like your father is having a rough time. I'm glad he has a lot of support. Is he home or in the hospital?

Just keep reminding him and your family that it does get better eventually.

Best wishes!

Hi,
This is Scott, thought I would give my take on things. Lisa is right, it has been tough for my Dad
Thanks to my mom and my sisters, he has someone there during the doctors rounds and his radiation treatments. I follow up at night, being unable to be there during the daytime hours. It's hard to see him suffer - his throat ,oral cavity and neck are raw and sore, but he has kept a good attitude throughout and is focused on his drug and treatment regimen. It has been frustrating for my family because Dad is their only "patient" and they focus all their attention on him. The doctors and nurses can't match that, obviously, and sometimes mistakes are made. Regardless, I am happy the way things are going - he is right where he is supposed to be right now, uncomfortable as that may be. Thanks again for all your support!

Hi Scott,

Speaking as a nurse I think it's great that your Dad has his own private duty team who care only about him. That support cannot be dulicated and don't underestimate how much it is helping him keep that positive attitude. It does sound like he's right where he should be at this point unfortunately. There were days when we couldn't see he'd ever be able to eat again or have taste or be pain free or that the nausea would end. Some of his symptoms got worse after the treatment ended but I want you to konw that it did get better. One day Jack woke up and didn't feel lousey and he started coming back to our "new normal".

This too shall pass, and how lucky he is to have such a caring and involved family.

Regards JoAnne

This is Lisa again--Entering week 4 of the 5 total treatments. They warned us that, for some reason, week 3 is just emotionally the hardest to get through...boy, were they right! This week, we see the light at the end of the tunnel and spirits are much higher. And you know what David...you are absolutely right. Just do what you gotta do to get through the treatments. I'm so thankful for all the input from all of you who have gone before us...it has been most helpful. God bless you all!

Lisa,

I didn't come out of that tunnel until the 3rd week after TX. So don't get discouraged if things get worse before they get better.