I am caregiver to my husband. He has completed 16 of his 39 IMRT treatments. He was doing very well, but seems to be going downhill fast. Today he went for his treatment and they would not give it to him, the doctor said he was beat up enough. He lost 8 lbs. in 2 days. He has developed a rash from the ethyol. Leon is now talking about quitting the IMRT that he just can't take it anymore. He said he is willing to take his chances. I don't know what to do or how to handle this besides pleading with him to just hang in there, its not forever. I don't know how to get through to him. I'm hoping he is just at a very low point today and tomorrow will be different. I will do anything to make him feel better, but I just don't know what to do. Everyone here seems to upbeat,how do you get yourselves to be like that?

Are they discontinuing the ethyol? Thinking back on my treatments, that stuff made most of them (the ones where I had it--which was 24 out of 33) MUCH more hellish than would have been the case otherwise. It made me sick every day. Consider discontinuing that (if he's having IMRT, he should still be able to keep some of his saliva without it) before the whole shebang.

I don't know if I was "upbeat" during my treatment but I was very very focused on doing everything I could to fight the cancer. I wish I could tell you how I got there. Fear of dying at a still-young age probably had something to do with it, that fighting spirit just took over at some point prior to radation and didn't let go.

I really hope your husband gets to that point. maybe he just isn't there yet.

Nelie

I am right there with you..we went through the same thing. The ethyol/amifostine made Pete sicker than he had ever been in his life. He just had to quit taking it, but he did continue with radiation/chemo
Beg, plead, do whatever you have to to get him to stay with his treatments.
I am going to pm with Pete`s cell phone number maybe talking to someone who has been there will give your hubby some hope. Hang in there.

Marica

rwarm,
I have just noticed you elected not to receive private messages. I think it will be safe to give Pete`s cell # 770-330-3059. If you wish you can pm me with your # and Pete can call your hubby if that would be better for you.

Hi - John withdrew quite a bit during treatment. There were days he couldn't and sometimes wouldn't speak at all. It is a living hell, there's no way around it- but the time does pass and it eventually is behind you.

John could hardly continue just before he reached the halfway mark and then his two younger sisters arrived for 10 days from Australia ( to Canada) and it seemed to somehow take his mind off the misery. Not completely, but enough that it seemed to give him a second wind. Is there any other family member or friend who might lift his spirits if they dropped by for even a few days?

Mary

rwarm, I think it will be safe to stop the ethyol because with IMRT, he will most likely regain some saliva function after treatment ends. I had IMRT 4 years ago and they said I didn't need to have the ethyol. They were correct and I can spit with the best of 'em. Not having to go through that should pick his spirits up considerably. Please tell him that most of the many, many people on this forum have survived radiation and gone on to live happy, normal lives. He can do it too! We are all pulling for both of you.

Rwarm:
It is tough, very tough, getting through radiation therapy treatment, especially with Chemotherapy piggybacked. Almost all of us have been there. It would ne a sad mistake indeed to give up and just quit. This disease is not to be taken likely, it is a killer.
Darrell

My dad was just told last Thursday that it appears his cancer is back....I was so "pissed" is the word for it. I was the encourager for both my Dad and my Mom. They seen the dissapointment I felt and it made them worry and really upset. I know it's hard but encourage him. It's hard but, do not let him see it in you. You could be the only thing holding him together. I got together with my sister n' laws this weekend and just flipped out. It made me feel better. I'm ready to face this crap again. Have him read the postings. I started reading them to my mom and it's helped her alot. She sees that my Dad isn't the only one going though all of this. Sometimes they just get their strength from us....

Rwarm,
The grim option is death from cancer and it usually takes metastesis to a major organ before that occurs and that can take some time. I had 2 parents and a sister die from cancer and it wasn't pretty.

We were all beat up - I lost over 60 lbs myself but I'll take this side of the grass anyday.

I agree with Joanna - the Amofostine isn't really neccessary if you are on IMRT - most people here can't get through it. The CCC I went to doesn't even recommend it unless you're are getting XRT.

Plead with him to get through the radiation There are no "chances" - quitting treatment is a death sentence.

The way I got through it was one day at time. I had days that ranged from fair to horrific. I availed myself of the wonderful array of drugs for pain, anxiety and depression and NEVER lost sight that I would be cured. It helped to have a ton of people praying for me and faith as well. I was very sick from the chemo and other side effects that lasted for more than 6 months (at one point my wife thought that I was going to die from the treatments). Effectively I was totally disabled for almost 2 years.

Now I am VP of a medical device company and life is better than it ever was. I have hardly any residual effects. I feel better and stronger than ever. This disease is survivable - he's got to keep going.

Thank you for all your responses. I don't think it is the ethyol that is getting to him, although he did develop a rash from it. It is his not being able to taste anything that is driving him crazy. He is getting tired a forcing food down and he refuses to get a feeding tube. I think not being able to taste food is the worst for him. He has always loved to eat! When I got home from work last night, he seemed to be in a better mood. I was able to get some soup in him and a milkshake. Thank you Marcia for the phone number. I will give it to Leon and hope that he uses it. You and your husband are very kind. Leon doesn't have much of a support system beside me and my family. By the way I changed my pm. Not quite sure what I was doing when I set it up.