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.

Rhonda,

I know exactly what you are talking about. As the treatments got harder Harry would try and try not to go. I had friends take him because he would not refuse to go once they showed up at the house. I think he was more afraid of inconveniencing them or something. Our friends new about his attitude and were gracious and helpful. There were times when I would have to invite someone else to come and talk to him to remind him of why he was going through all of this.

Towards the very end of radiation I had to get really nasty with him. I had to threaten to get one of our son-in-laws to come and force him in the car. He never let it go that far but he certainly bitched the whole way. It was the hardest thing he has ever endured but he made it and other than the weight loss if you look at him now you would never know what he went through.

Get the tube. Make the appointment and just tell him he is going. Enlist your friends if necessary. Harry fought the tube for too long and when he became bedridden and couldn't hardly move at all he regretted that decision. He was so weak from the treatments already and the lack of nutrition and weightloss really made things worse.

As he recovered he started using the tube by himself and eventually I had to have it removed because he had gone to the opposite extreme and became dependant on it.

Today, while his food doesn't always taste grand, he has found some foods that he really likes and he eats what he can. He also drinks protein shakes to supplement. It is hard to imagine that 6 months ago life was so much harder but as time has passed our lives have sort of returned to normal and he is getting stronger by the day.

Hang in there but as a caregiver do not be afraid to be forceful, tricky, or whatever it takes to get him to the finish line. Funny most of that Harry doesn't even remember now so for him it never happened. That is ok with me. What made the stuff I had to do to get him through this more bareable was that the alternative was not an option.

Do what you can and drop in anytime you need a little lift.

Best to you both!

Cindy

Yes that is one of the major sucky parts of chemo & radiation is the loss of taste buds but it is usually only temporary. Mine started returning only after a few months post Tx and are fully recovered now. I didn't use a PEG - I forced mayself to eat all of that cardboard tasting, and worse, crap for months - but I sure enjoy dining experiences now. Because of IMRT I had a full recovery of my taste buds and major recovery of salivary function.

ALL of us had the same taste issues, it'll pass. One must be patient and FIGHT -this is not the time to wimp out..

Tell him to get a grip - risking death for not being able to taste food is a pretty lame excuse and legacy to leave behind. He will get beat up from the treatment - everyone here does.

Tell him also to buckle up his seat belt because the treatment side effects are going to get even worse before its over.

Never thought of myself as upbeat during treatment ~ I was just soooo BORED! Bored of the tube, bored of the day after day treatment, bored of being tired/sick/chemo-pukation, oh so bored of the everything & anything having 2 do w/cancer. bleh! A cancer patient is the lousiest of jobs to have. I mostly disctracted myself w/video games. Cool that he's gotta a driver. I took my sorry butt there every freakin' day (expect 2 when post chemo made me massively ill every hour on the boring hour).

I'm a 2.5 year survivor & I can taste & I've got the salvia 2 do it w/o the amifostine treatments & no IMRT either. Maybe he needs to speak w/a counselor 2 help him find that grit 2 hang-on & come out fighting.

Rhonda,

I have to agree with Gary on this one.

Quitting treatment is a death sentence.

If he needs to talk to someone have him give me a call. He cant quit. We wont let him.

Ethyol is an optional thing. I never had it. Wasnt even discussed with IMRT.

Get him off that fast and back on the road.

I am almost 2 years post treatment (4 weeks to go). I can taste everything but Chocolate and I cant eat hot sauce anymore.

Saliva, It has come back to the point where I dont need a water bottle at night. I can LIVE with that.

My number is 847-456-4119. If he wants to talk I am always avalible night,day, whatever.
Robert

Rhonda,

I was never upbeat during my treatments. I was determined to beat this thing. I was determined to do anything I could to win this battle. And that is what radiation is. It's a battle. Each day, each treatment. Win enough battles and you win the war. If going through radiation is what it took, I was going to do it. I was not going to let cancer dictate who I was or take control of my life. I knew that the radiation would give me the best chance at living. And isn't that what it's all about? The pain and discomfort was a small price to pay.

Let him know that many before him have gone through the same ordeal. Remember that it's always darkest before the dawn.

John

John

Rhonda,
I hope things are better by now. Your post really hit me, as I recall the darkest day of Tom's treatment. He was soooo sick - - and he had already spent a week in the hospital because of a blood clot that had formed at the kidneys, so he was sooo tired of the hospital. I did, literally, have to beg him to continue the treatments - - both radiation and chemo. I used every argument I could and (shamefully?) used the "I can't live without you" argument. Thank goodness for strong and caring nurses, because I think they were the ones, in quiet voices, that coaxed him into submission. It was not pretty, but he is here with me today, and I am happy and he is happy and getting better (but no heavier ) every day.
We are pulling for him - and you.
Nicki

Hi Rhonda -
I totally understand where you are right now. My husband, Kenny, started out very positive about the treatments - surgery, chemo & radiation. But after 2 weeks of radiation and 1 round of chemo he ended up in the hospital for 3 weeks with one complication after another. That is when he gave up. I begged, cried, got mad - you name it. But what it all came down to was Kenny choosing to live.

At the beginning of this journey, I told Kenny that I would support him in all of his decisions - and I had to live up to that promise. He stopped radiation treatments while he was in the hospital and once we got him home, he was set on quitting. A phone call from his RO put it all into prospective - he gave Kenny 1 final week to change his mind. After that, the RO would not take him back as a patient.

I honestly think that line drawn in the sand made Kenny face the reality of death. So, after two more days of wondering if I was going to be a wife or a widow, Kenny asked me to take him to treatment and he finished everything. It has been the hardest thing to do in my entire life - to watch him struggle with this horrific disease and treatment - but he made it.

Is Leon on anti-depressants? I believe they saved Kenny's life. Once Kenny decided to return to treatments, his depression worsened (quickly and dramatically). It was our family doctor (and dear friend) that finally convinced Kenny to give anti-depressants a try. If Leon is not getting counseling or thearpy for depression, please seek it out immediately (and for yourself). Depression is nothing to be ashamed of - it is a disease as well. But more importantly, it is a disease that can be treated.

Kenny is now 5 months out from his last treatment. He is still on the feeding tube during the night, but he is eating more and more every day. He has a very long road ahead of him to regain his stamina and strength - but we are both working on it every day.

Take things one day at a time - literally. What can you do today - just today - to help Leon? Don't worry about the world coming to an end tomorrow -- it's already tomorrow in Australia!

Rhonda, you are not alone. Chat any time.
Carol

Rhonda,

As I am reading all the posts, the vivid memories come flooding through my mind. I had such a horrible time with the Ethyol and ultimately stopped but I just couldn't imagine stopping. Each day I looked into the eyes of my wonderful wife and two boys, I knew I had so much to live for and I would perservere. One day in radiation, my neck red and oozing goo and blood, I was running for the bathroom, not sure which end was going to spew first. When I came out I met a young man, half my age. He had been battling lymphoma for so long and he was sitting there in the waiting room with my wife, both of them sobbing. He looked at me and reached out to my hands. Our trip that morning was less than enjoyable and I was at the "hump" of treatment wondering why I was doing this to myself. This young man then told me of all the surgeries, showed me dozens of scars, showed me his horrible teeth and said all this was from cancer and treatment. He said he knew he didn't have much longer but he was going to give it everything until his last breath...for his kids. He then said if I couldn't do it for myself, think of my wife and kids. I am strong in my faith and I knew exactly who put me in the path with this young man and I also knew at that moment nothing would stop me until I breathed my last breath.

I don't know what Leon has decided but I would gladly speak with him too (972-422-2724). We all went through this, on one side of the equation or the other. It can be done although it is no walk in the park. I, too, live for cooking and I knew no matter how bad it tasted, it would be good again someday. Unfortunately, I didn't hang out in this neighborhood until a couple of months after treatment.

Hang in there, it will get better for both of you.

Ed

I don't contribute much as far as writing goes, but I'm still reading almost three years after my Aunt Rosemary was diagnosed with stage 3/4 base of the tongue, floor of mouth, saliva gland with mets to her lymph nodes. I have always shared the same fervent belief as all of you good people do and that's fight, fight, fight BUT after her first surgery, when they wanted to do radiation and she wouldn't hear of it, I learned quite a new and shocking lesson from my Uncle Bobby. The lesson was quite simply this- it's her life and it's her decision. I kept asking her if she understood the possible consequences of this decision and she said yes. To be truthful, it took me probably six months to be able to adjust to this new point of view. I thought that as long as they followed her religiously, as long as she went for her scans etc., we'd know what was going on. Now we're into an even more serious aspect of her decisions. As of six months ago, she won't go for any more tests, any more CTs, PETs etc. She told me she's had it. She's been uncomfortable with her new tongue since day 1. She can't stand the abundance of saliva, the changes that have happened as a result of scar tissue, the fact that she can't eat most of the time and sometimes can't talk. She'll be going for her thrid reconstructive surgery next Monday. The only thing she wants, is to be kept comfortable. Hopefully they'll free the adhesions from the flap that was added to the original flap and she'll be able to talk again without a lot of pain.

I live with her decision every day. Trust me, it's hard because we all know that eventually, this is going to do her in with no post-surgical treatment and no follow-up, but, I have to respect her decision. I follow my Uncle's lead. He stands behind her all the way as far as her choices go. It kills me to not say anything to her, but I have to respect her feelings. This is truly one of the hardest things I've ever had to do.........

The only thing I can say, is love him. Love him with all your heart.

Lisa