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