My sister had her first rad treatment for her parotid gland cancer yesterday. It did NOT go well. They had all sorts of problems with the machine and kept her strapped into that mask for way longer than they'd said. She isn't normally claustrophobic but came out crying. I did have a question if anyone has any thoughts - I had asked her doc about Amofostine and he said sure she could try it. Yesterday he wasn't there and I asked her to talk to the technician and he said one of the docs doesn't want patients to use it. Anyway, we didn't push it as she's been very sick and lost more weight from a stomach virus and I figured the last thing she needed was something that could make her feel more nauseaus. I was a little perturbed though as we had talked about it and now this tech is acting like he didn't know that. Shouldn't it be in her chart? Why would they NOT recommend it if it has the potential to help save saliva gland function? I know it's hard to tolerate for a lot of people, but isn't it worth trying? Thanks in advance for any advice!

I have no idea why they would not recommend it, unless it is different for parotid gland cancer than othr kinds of oral cancer. The idea is that it protects salivary function and the parotid gland is salivary gland so maybe there is some controvery about Amifostine in this case--perhaps there is some possibility it interferes with the effectiveness of treatment?

Maybe it is the different types of cancer. I asked my Onc about it and he said my salivary glands would not be affected and I have 10 treatments to go and they are fine. It may change at some later date but right now I am confident in what he told me.

Hopefully things will go more smoothly and your sister will be in and out in less time for her next treatments. My first took a little over an hour because of all the adjustments they had to make. I hated it but I'd rather be safe than sorry. Now its around 5-10 minutes tops even when they x-ray once a week.

My prayers are with her and you,
Barb~

Thanks for the responses. I hope her treatment today goes more smoothly. I wasn't sure if it was just the "first time" adjustment or if they were having problems with the machine that might happen every time. Maybe next week we can talk to her doctor when she's feeling better about the amofostine.

Hi, problems with the machine crop up frm time to time. It is a piece of equipment and sometimes it takes a little prodding to work properly. Also on teh first time, they take their time to get things just right. The phsyics claculations that go into the machine are very complex. At least that is what was explained to me by my Onc and techs. Mos ttechs have the patients comfort in mind and will not let you stay buckled up for too long, whoever i was strapped down for 45 minutes once. But only once. It is a very trying experience and must be approached with a calm determined attitude. Once I got that throuhg my thick skull, things went a little more smoothly.

Robin, how are your sister's treatments going?

Last week, during my pre-simulation MRI and simulation both I cried from the physical and emotional stress of being strapped on to the table for about 1.5 hours each.

Make sure your sister is as physically comfortable as possible...

Ask about a blanket in case she's cold...Cold has a way of magnifying pain and discomfort, and they usually keep the RAD rooms chilly I've noticed.

Maybe there's a favorite CD she can listen to while having the treatments?

Of course, knowing you're just outside and a strong advocate for her health care is usually a great feeling too!

Don't hesitate to be FIRM with the team....Don't forget they are working FOR your sister, (and getting paid a ton!)...There's a fine line between being demanding and disrespectful, and you'll know how to be diplomatic but proactive.

So, give us an update when you get a chance, and if you already have in another thread, I appologize, I couldn't find any later post.

My best wishes to you and your sister, she's lucky to have someone like you on her side!

About Amifostene-My dad has been taking it religiously for 2 weeks before treatment. Now, he is getting the chills and perfuse sweating from it. There are side effects and different people experience different things. Some vomit, some pass out from the decrease in blood pressure. My dad didn't have any adverse effects until this Monday which is causing him to reconsider using it. He is a hefty and healthy male. I would not recommend she take it if they don't do subqutaneous injections. It may make her feel worse. I am sorry you are struggling--

Michael: Thanks so much for asking. I'm keeping you in my prayers! She's having so, so many problems! A lot of it stems from her entire financial/no insurance problems. She started radiation on 7/28 and then had it again the next day. The following Monday she missed because she'd been struggling with a 10 day stomach virus and couldn't stop throwing up. I took her on Tuesday and she got a ride with another friend one other day. But all told - she missed three out of five treatments last week. Then she had to move out of her apartment over the weekend which was tough as she's been so sick. Anyway, she moved in with a friend and is feeling better so is now back on track with treatments. I think the radiation doc talked her out of the Amifostene as he said the salivary glands on the other side will probably not be affected. I hope he's right but as she's already been nauseous and can't afford to lose any more weight, I guess it's probably not the best thing for her anyway. Shawna - hope your dad gets to doing better. You are all absolutely amazing with your willingness to give and share information and your amazing bravery in fighting this disease! It's been truly life changing and enriching to read all the posts on this board.