Hi, my Dad is currently starting his fourth week of Erbitux/Radiation . . . he wanted me to ask if anyone had problems with severe nausea and if it tends to get worse as time goes on . . . He takes the Ethyl Amifostine shot to help preserve his salivary glands. He also takes an anti-nausea pill (Ondansetron) 1/2 hr. before treatment. The past few days he felt very sick during radiation treatment and had to go home and just go to sleep. Any suggestions? We know everyone reacts differently, but he was just curious about others experiences. Thanks.

Laura and Ted

Hi Laura and Ted:
Same symptoms here. The Amophostine is tough to handle, but trust me, if he can stick it out they help preserve the saliva glands. I had already lost the right side neck glands so I really wanted to preserve all the rest that I could. I had a great "sunburn" on my neck and up around by jawline, but there were two large pale areas on the ends of my jawbones. My wife asked the oncologist about it and he told her "That's the amophostine doing it's job." The last five shots really added to the nausea but I stuck through them and probably have better saliva for it. Your mucous starts getting thicker about week four as well and it really starts getting tough. It really sucks to get sick and have a closed up throat, nothing in your stomach, and no saliva just that thick mucous!! He's doing the right thing after treatment, get him home and get him in bed. I was always so happy just to get back to the house (What a high light to your day!!). Just keep him positive and get him through it!!! Stay with the shots-I started looking at it like a new challenge. The two gentlemen going through this journey at about the same time I was couldn't handle the shots so I was even more determined. The one guy that usually came out as I was going in (while we could still talk to one another) would smile and say "I got 'er warmed up for you." LOL

I think that I can count the persons here who made it completely through Amofostine on less than 1 hand. I had IMRT and have about 80-90% of my salivary function back.

"ALL" I had was the rad and chemo but I got really naseated around the same time and nothing they gave me helped very much and most meds produced worst side effects than the nausea they were trying to prevent. I was a total wuss. A few weeks post Tx and it finally got better.

Thank you. He really wants to give the Amophostine a go . . . the weekend really gives him a break to regroup. I will share your info with him tomorrow.

Laura

Laura,
call me.

Like David, the antiemetics didn't work all that great for me either and I didn't even have Amofostine. I ended up using Compazine suppositories because I couldn't keep anything down. Some people are just sick a lot and it's very hard to watch as a caregiver. Keep on the doctors about managing the nausea and stay on top of being well hydrated (2-3 liters/day). Vomiting dehydrates you very quickly and that will just make things worse -he might end up in the hospital ER for rehydration (make an appointment in the infusion unit if you can - it's much faster and more comfortable than the ER). I vomited so much that I actually polished my teeth like glass from the stomach acid. Speaking of which, Cisplatin is tough on the stomach lining so antiacids are commonly prescribed as well.

If he's PEG feeding use a slow drip method and see if that helps.

My Dad decided to stop the Amofostine after today . . actually his RO insisted to give him a break. I am curious to see if he will continue with the nausea from the radiation alone. He feels okay about stopping the injection he actually felt a bit better once he read your posts and found out he is not alone with dealing with all of this . . .it is really rough going and it is okay to ask for help and do what you need to do to get through it all. I cried on the way home today because he is getting so down and my Dad is a big joker and is always making everyone feel good. This is something I will never forget . . . it changes you . . . being a caregiver changes everything . . .

I was wondering how a PEG feeding will go when you are nauseous . . . he may have to start this week as he is losing weight.

Thanks again everyone and DONNA I will call you on Tuesday!

Laura

Laura,

My sister stuck with the amofostine shots for 3 weeks, before she gave up because the nausea was so relentless. She was on companzine, decadron, zofran and taking ativan before the treatments. Sometimes she felt like she was going to vomit during radiation treatment with the mask on and choke. Your dad should seriously consider getting a PEG, and do not feed when he is nauseous. Warming the formula to body temperature, before feeding really helps. Also a portable suction machine is really helpful to suck all the thick mucous and saliva out. My sister lost her ability to swallow, so it was a life saver (about $30.00 a month to rent). Anzemet seemed to work well for my sister during her chemo treatments of cisplatin. She usually went back to oncology 2 days later for rehydration...it really made a difference and helped tremendously. If your dad has tried all the above drugs to no avail he might want to try Phenergan, but it can have bad side effects (hallucinate, and become fidgety and talk in your sleep), so is sometimes given with benedryl. Usually it's given as an injection, but they have suppostories and my sister was taking 6.25 mg, which is half of the smallest dose they make.

My best to you both... try to stay positive and enjoy the little things that we take for granted in life...just take it a day at a time, by the end of March (or sooner) your dad will be feeling lots better.

Nancy

Laura - My son also had horrible nausea and the doctors even put him on two breaks during the radiation treatments. He was switched from Amifostine to Compazine but it didn't seem to help too much. He drank a LOT of water,too. Towards the end of treatment it was really bad but even when they offered him another break he refused and kept going just to get it over with. Just when I thought he couldn't make it anymore, he somehow dragged himself into the Rad room and out again. He slept a lot, too. . . so much that there were times I would go into his room just to make sure he was still breathing! Knowing someone else made it thru helps to know that it's possible and it does get so much better. Your Dad's sense of humor will come back - my son's did and better than ever! Take care of yourself, too, Laura and hang on to the small successes or improvements along the way.