Hi everyone,

Well, it's been two weeks since Richard finished radiation treatments and his final Erbitux dose. The first week was pretty tough. Thank goodness that we were expecting the rough times to continue after the treatment ended and we were prepared mentally.

Now he is eating quite a bit and we are starting to wean off the Peg tube. He is still using it, but hopefully by next week he will get enough calories to maintain his weight. He's at the weight he was when he got the diagnosis. Adding the extra ten pounds paid off because that's exactly what he's lost.

I can't thank this forum enough for all the info we were able to use. Gaining weight before treatment was the best thing he did. Now, I would like your expertise on the easiest way to wean off the pain patch. Richard has been on the 50 mcg dose for 4 weeks and before that the 25mcg for about 2 weeks. So, about 6 weeks total and no break through meds. He tried the liquid morphine a couple of times and didn't like it. We will see the RO on Fri and she will talk to us about the pain meds. She suggested weaning down to 25 then to 12.5 doses. What about keeping them on an extra day, then changing? There's so much experience on this forum, that I know we'll get some good feedback.

Again, thanks so much for all your help. I recommend OCF everywhere I go. I come to the forum everyday even though I don't post often. I never learned how to type, so it takes me forever to write a post! Thanks, Geri

Hi Geri and congratulations to you both on the completion of treatment.
I would follow the doctors advice Geri leaving the patch on an extra day just means he will go cold turkey on the last day.Weaning off strong narcotics needs to be done under supervision or you could have a problem.

love liz

Geri
I would go with the doctor"s weaning plan of 50 to 25 to 12.5 Liz points out that otherwise it will be too abrupt. I was going to be the tough guy again so I just ripped off the patches and went cold turkey - big mistake - it was like those corny DEA commercials- all leg twitchy and invisible insect crawling. Luckily I had shared my plan with the doctor who had provided me with a script for sustained release 20mg oxycodone pills that you only needed two a day. Then down to the 5m oxycodone. It took a week longer but much smoother. CONGRATULATIONS

Tell him WAY TO GO. Cancer Boot Camp is over and graduation is near.

Geez Charm, you did what I did. Got me a turkey ice cold. I was lucky the effects didn't last but a couple of days. I had oxycodone here too and used it then started reducing the size . We older guys are either tough or weird . LOL

Hi,
Tonight, Richard is going to drop from the 50 dose patch to the 25. I'm nervous about any withdrawal symptoms. He's doing so well with eating and feeling better that I hate to throw a wrench into things. We are into a good recovery routine and things are going pretty smoothly. He's only three weeks out of treatment and I wonder if this is the right time to start to wean off. Richard isn't too concerned. He says he'll deal with it as it comes and he's not going cold turkey. We see the MO today and will ask advice. Richard is VERY TIred of the constipation issues and I know the sooner he is off the patches the better. Thanks for any feedback anyone has on the side effects of lowering the dose. Geri

Geri

I used the fentanyl patches. If your husband was up to 50 thats very good. My highest was 150 only for about a week. Fentanyl is very strong so even 25 is still very powerful. No need to worry about him being lowered. He will probably stay on 25 for a few weeks yet before he is given something weaker.

Sounds like your husband is doing great. Eating is a big challenge. Keep up the good work. If Richard hasnt 'turned the corner' yet, he will start to feel better very soon. The worst is behind you both. Congrats on finishing treatments.

Geri
I am in the exact same situation as Richard. I jsut finished up about three weeks ago myself and was on 50 mcgs then went to 25 mcg and yesterday went off the 25 mcg. Today I am having the jitters and the withdrawel symptoms and some diarhea but otherwise okay. I don't want to stay on that any longer than I have to. I still don't have the eating down real good yet. Every thing still tastes like caca, but I still smell and dream.

Stopping fentanyl should only be done under medical supervision and usually takes about 2 weeks ,sometimes longer.You will find people who will say they just stopped,but this is ill advised and dangerous and very unpleasant.50 mcgs is really a very low dose so you shouldn't find too many problems,rob was up to 300.

Geri, the path your husband is taking sounds solid. I stair stepped up during treatments and stair stepped down afterwards just as you are outlining. I had no problems regarding any sort of withdrawals from the patch. Congrats on being on this side of the hill and good luck with his continuing recovery.

Hi,
Well, it's been a long time between posts and much has happened. Richard is doing great and we are back to all our normal activities again with still much rest in-between. He stopped the patch over a month ago and at first felt really strange without the drug. I expected the physical discomfort to be worse, but the effect was more of a mental let- down and a feeling of not being himself. Within in a few days, he started to come back to himself and within a week was feeling better. I was so concerned with the physical withdrawal, that the mental aspect of it never occurred to me.
His taste is still not normal and the saliva is greatly reduced, but he makes himself eat and eats pretty much everything he wants. So, here we are, so lucky and thankful for each day. We see the H&N surgeon next week and the RO in July. I don't think they will do any testing until July, but we will find out what the schedule is next week. Both Drs were very pleased with his progress when they saw him in April.
Kind of a funny story... At the beginning of this ordeal in Jan, American Idol had just started. I remember how we watched it each week while going through this treatment. All the ups and downs and American Idol progressing along with us. Each week something new to deal with popped up, but there was always AI to watch. In Jan, I told Richard that in May when the finale came around we would be through the tunnel and into the light. Our interest in the show has waned a bit, but we will be watching the finale for sure. I know this sounds trivial, but we counted off the weeks with Simon, Paula, Cara and Randy! Talk to you all later....Geri

Geri,

Just let him know that it may take all of 2 years for his recovery and just don't get TOOOO frustrated. My taste and saliva didn't really make a strong comeback until my 15th month post Tx.

Hi Geri. Thank you so much for the update. I was wondering how your husband was coming along. John's treatments ended 5 weeks ago today. John's recovery has been pretty rough. He just started talking last week. He was so gaggy and filled with mucus that everytime he would try to talk he would vomit. Thank God the mucus issue has gotten a lot better. He is still on Zofran for the nausea. He still isn't drinking of swallowing. Thank God he had the PEG put in. Even with that he lost 30 lbs. I keep wondering when he will be able to eat again. I know everyone recovers differently. John makes himself swallow a little water every day but it still in a fair amount of pain and discomfort. I'm glad to hear everything so far is going well. Take care. Wanda

I would like to post for him but I never seemed to have many problems but I do have some. All I really can say is good luck and for himt to be glad he has you to take care of and look out for him. It sure as heck is hard to everything for yourself..