Hi Everyone! I hope everyone had a wonderful weekend.
I noticed,over the past weekend, that Charlies hands were shaking...did anyone else have that problem? Could it be because of the pain meds? He said that it is no big deal and I shouldn't worry, but of course-how can I not?
He also has really good days and then really bad ones- where all he wants to do is sleep (He only woke up yesterday to watch the Sopranos). He might go fishing today, but I dont want to push. Should I push? Did anyone else have these ups and downs? Thanks for any advice- I really am blessed with the site!

Hi Delia.

Leon's hand shook for a while too, during and after treatment. His family physician prescribed Buspar for him. He said this often happens with what he is going through and dealing with, I'm not quite sure if he meant from the treatment or from his nerves. He only took the medication for a short while, maybe a month after treatment. The shaking has gone completely away.

Leon also had good days and bad days. Still does at times, but the bad days are not as bad. He is working full time now and still has energy after working, many times after work he goes fishing for a couple of hours. When he first went back to work he would come home and go straight to bed after showering and eating.

I didn't push. My husband was never one to lay around before he got sick and I knew that if he could he would be up. So I let him recover at his own pace.

HI Delia,

My husbands hands are very shaky as well. Did he have Taxol? I have read thet the Taxol affects the nerves so I have attributed it to that and hope that once some time has passeed it be out of his system and will go away. His last chemo treatment was four weeks ago. When was your husband thru? what type of cancer does he have? My husband still has mostly bad days still as far as being up goes. He sleeps most days away... getting up for a few minutes here or there...

Thanks Kerry and Rhonda,

He didn't have Taxol, but he is taking Neuronton to help nerve damage.
Charlie had 35 weeks of radiation and 2 cycles of chemotherapy. He ended on April 7th. He had Stage IV larynx cancer. He is 30 years old. We go for the PET and CT scan result on JUne 2nd.
He was eating for a while and gained weight, but now he seems to be declining.
It seems like this fear will always be in my heart.
How is your husband feeling other than being sleepy?

We are actully planning on getting married on March 10th 2007.

Delia.

Congratulations...nothing like a wedding date to give you reason to recoup faster. Thats happy news and I hope you get even happier news on June 2nd. I'll be praying for you, be sure to let us know.
My husband actually had a really good night tonight so I guess he's following the pattern of good days and bad...just when I'm about to give up I see a glimmer of hope. His mucous is still really bad but maybe has improved if I look back about two weeks ago from now. The mucous has been the most troublesome thing for him..At least the pain meds manage the pain if we keep up on it. Hes on 75 mg fentanyl patch and oxy fast solution(oxycodone without the tylenol)every 4-6 hours. I don't know about you but my husband is not the same man I know since his diagnosis. They have put him on an antidepressant so hopefully trhat will kick in and help him thryu these next few months of recovery. Your husband is far too young to be having to deal with this disease...It's so unfair. Did they say what the cause was? My husband is 47 and I thought he was young.

Taxol is one of the chemotherapy drugs they used for Stephen. Which ones did they give your husband? Did they say what caused the nerve damage? I'll have to ask about the Neuronton for my husband...I haven't adressed the shaky hands with the M.O. yet.

THank you so much for the prayers! I will be doing the same- God knows how much we need them!
If we get the all clear on June 2nd- we are going strait to put down the deposit!!! (for some reason I cant bring myself to do it without the all clear-even though EVERYTHING is planned)

Charlie did become more emotional and had crying spells. I think that he was scared and for the first time realized how much love he had inside of him. Charlie always had a great spirit- it was trampled on during the treatment and he was moody- but he is doing better now. He was brave- I am so proud of him.

The mucous was a main problem for Charlie as well, but it DID GET BETTER!!! I used liquid Robituusin just for congestion- at the time it helped a little.
Is he in alot of pain? I would push for more fentanyl. Charlie is on 150 mg patch. He also took the oxyfast, but after 3 weeks we found that morphine worked much better for him. He also takes 3mg of lorazapram every 3-6 hours for anxiety. That sounds like alot but it helps with the scared feeling that must be constant. HE was also on alot of other meds (that were expermental) if you need any advice on them.

Charlie has cysplatin for his chemotherapy. The main thing was radiation.

Charlie just sleeps and sleeps- I get lonley which leads to fear. Do you feel that?

CHarlie has no other support becides me. Its so agravating when his own mother(adopted) didnt even offer to pick up milk or something for us. Im sorry I just needed to vent that out.

Charlies grandfather (and adopted father)died of throat cancer so part of it was genetic. The other part was his smoking and drinking. It is difficult for him to quit the smoking and I have caught him cheating a few times- but I think that is over.
What about your husband? He is so young too.

How are you handling everything?

Delia,
I'm sorry ya'll are having to go this alone. I think we may have gotten in the way TOO much with my brother. We were always there and always trying to do things for him that he wanted to do himself. I remember one time when he was in the hospital I grabbed a bottle of lotion and began to rub his feet (He always loved a footrub). You should have seen the look on his face! I knew immediately something was wrong. "He hates lotion," his wife said. I couldn't wipe it off fast enough. That taught me to ask before assuming what he wanted or needed. Do you think his Charlie's mother would help if you asked? Sometimes people don't know what to do.
David's hands shook following treatment as well, but it finally went away for a while. David also stayed in the house alot at first. I thought he might be depressed, but he just felt so terrible he couldn't do anything but sit in his chair. I would wait until you get the checkup on June 2 to start pushing him, then do so gently. I tried to push my brother, not realizing his cancer was getting worse. I feel terrible now. He didn't mind - he would try to go the mouth stretches and excercises, but he wouldn't practice trying to talk as much as I thought he should - I'm one of THOSE people who always think they know what is best. Anyway, what I didn't know was that his cancer had spread again, and he was physically unable to make sounds. So, the moral of my story is to be gentle with the pushing but encouraging. It's a fine line.
About the wedding - I've seen oral cancer take so much for so many, and it would be sad if it took away your wedding. If he doesn't feel like a big event, how about exchanging vows in the backyard or at a park? You wouldn't be out the big deposit and could easily rearrange it if he didn't feel well. I say, go for it, cancer or no cancer!I wish ya'll the best and will be thinking of you on June 2nd.
Tonya

Delia,

I can't imagine that you are having to do this all yourself...Charlie is blessed to have you. Sorry, but, SHAME on his mother.
I have two small children so I have alot of help from his and my family. And even then I've felt like I would fall apart. I had some bad days, basically if he did, but they are getting better each day. Stephens cancer is HPV positive, he's not a smoker.
Charlie should get help quitting when he's back on his feet... You don't want this beast to rear it's ugly head again and the odds are 50% higher if he continues to smoke. I used to smoke so I know its hard but what I've seen my husband go thru is a hell of alot HARDER. I'm sure you agree...this is something he has to do for himself.
Your husband is probably so sleepy from the ativan. Thats alot of ativan...1 mg puts my husband to sleep. Did the docs say to give him that much every 3 - 6 hours. He wouldn't be able to do anything but sleep taking all that ativan. Stephens doctor told us 1 Mg as needed but to try to limit it for bedtime. He used to take the 1 mgevery 6 hrs. during treatment for anxiety and it was enough to take the edge off. They said to try to cut back so he wouldn't be so sleepy all the time. Maybe ask your MO because you want him to start getting up a little more and you definately need the company. It is so lonely. I have my little ones but I still feel so alone at times.
I'm going to check with the the doc about upping his patch, I think your right that its maybe not enough.
Thanks - All my best Delia!
Kerry

Delia,
there is no evidence that head & neck cancer is genetic.

Gary- Really? His ENT said that it was genetic and we are not even sure if we should have children. Can you tell me how you got that information? I would love to look it up because I want children more that anything, but if I had to adopt because of Charlie than I would because I love him.

Kerry- Wow, I cant believe that Charlie was taking (is taking) 3mgs every 3 hours. Now it is every 5-6, but still! I am so happy to hear that Stephen is getting better! What are the doctors telling you? The only thing that worries me is him coming off all of this pain meds. There are 100 things that worry me -as you probally relate to. I can tell that it hurts him that his family isnt involved. He knows that it is not his fault, he is a wonderful person, it is their fault for missing out on such a happy life. It just makes me so angry! Thanks for listening! I wish you the best for a wonderous recovery and I pray for much better days for you and your family.