I have a few thoughts, first off Duragesic is a 3 day, 72 hour system, not 4 days. Oxycodone is a medium strength, "short term" pain reliever whereas Duragesic is a powerful "long term" one. You need to get a plan from your doctor to wean off of it or you can have seizures and/or convulsions. You have got it backwards. They typically slowly reduce the Duragesic first then switch to decreasing dosages of Vicodin to lessen the withdrawal.

I was on full strength narcotics for over 2 full months post Tx before I even started the phase out.

Everything else you describe is pretty typical - patience - it WILL get better (and soon).

Welcome home.

Hi Michael and Seth --

It must be a great "medication" to be back home next to the ocean!! Listen to the sounds and start to heal...

Gary is right about the Duragesic -- you need to change every 3 days and to waen off gradually. We asked our MO at Hopkins yesterday as Barry went onto the patch (25 mg) when we discovered that the oxycodone was making him nauseous (with obvious implications for eating. He needs pain meds to eat as he is totally "by mouth.") She said he should use for another 2 weeks, and then would need to use oxycodone to wean off. However she did say that he could start to use other pain meds (e.g. Tylenol) for any break-through pain as long as his temperature stayed normal. Dental onc (whom we saw yesterday as well said exactly same thing.) Hopkins develops plans to get people off Duragsic, some are using much higher doses.

Btw. Barry found that first day or so he had litle "nightmares" when he tried to sleep.

Mucinex (2 tabs in 12 hours) is wonderful to control phlegm tho it's a whacking large pill and can't be cut up or ground up. Be sure to get the ones without the cough supressent in them. Otherwise, use guaifenisen syrup every 4 hours.

Stay in touch Michael,

Best wishes!
Gail and Barry

They make Fentanyl in 12.5 mg patches. My dad weaned from 50, down by the 12.5 increments. He did have slight withdrawl symptoms, but now they are completely resolved.

I never did the patches but did do oxycontin and the chills you are having probably are from withdrawal (asumong you have no sign of fever or anything esle wrong). When I went all the way off the oxy (I had been off during the day but taking it at night for pain) I couldn't get warm for two days....

Welcome home Michael and Seth

You've done it - and with such good spirit and attitude. Time to regroup now and congratulate yourselves. I too had to leave home for treatment and found that being back in my safe haven with my pets was a huge tonic.

Let us know how you are, love from Helen

Thank you all for your thoughts.

I'm getting settled in, but still have a couple of disableing issues.

Frist of all, I am 100% completely and totally exhausted.

Yesterday, I went to the jacuzzi at dawn, and then had to sleep the rest of the day.

I am sleeping better. At it's peak, the phlegm woke me every 30 mins, now, I'm getting up to 3 or 4 hours between hack ups.

So those are the only 2 main problems, the phlegm and the total exhaustion.

I also have a wierd feeling still in my neck where the surgery was.

The tissues inside feel strange, and tingly too.

There is a little knot about pea sized which has me worried too.

I also have a skin tag that was in the radiation field and it's crusty and scabby. Anyone else experience this?

As far as meds, I am off everything.

I have no pain. Some slight nausea from the phlegm occassionally, and sometimes when I try to spit up all the snot, it turns into actually vomitting, but this is not out of control.

Still cant eat or drink, but I am talking a little more.

It IS good to be home, but we are so isolated I feel apprehensive a little.

Also, I find myself thinking I am just waiting for the "other shoe to drop"...like I am just waiting for my recurrance. It's scary.

So glad you're home safe and sound. Now about those shoes.....we GOTTA find out where they all keep dropping from!

Take heart, better days ahead!
Andrea

Hi Michael--

You say you still cannot eat or drink -- yet have no pain -- is the inability to eat a problem with swallowing (that is, a physical limitation) or is it just too sore when you try to eat or drink?

I ask because you can lose the ability to swallow through disuse, which is why our RO was on everyone's case to "swallow something, even if just water" throughout treatment and was pretty insistent with those who were relying 100% on their g-tubes. And I know Barry's ENT warned him about this as well, she monitors a number of post-treatment patients who can no longer swallow and are undergoing PT for this.

Hopkins schedules all their HNC radiation patients for a swallowing evaluation about 1 month out. Even though Barry's been eating they want him to do it as well, it is going to be on November 8. You may wish to see about arranging something similar for yourself. There are exercises etc. that can be done to improve swallowing ability -- folks on this forum who have been through it know far more than I about the subject.

If the problem is soreness/pain and not a physical issue, then you may want to reconsider use of pain meds. Barry is still using pain medication in order to eat, although his mouth is definitely looking better -- but his throat is still very sore as that was what got most radiation. But without pain management he would not be able to eat.

Other than that, relax and think healing thoughts...

Best,
Gail

Hi Michael,
Except for the skin tag, you could be John talking about his symptoms. Our team here thinks he's doing wonderfully and right on course with symptoms that are to be expected - especially the phlegm and fatigue. He too cannot bring himself to eat much, can take his meds and a small drink and maybe a few bites but really has to work himself up for it. He too has feelings where the surgery was done and has a hard time describing what he feels inside. We do go on walks everyday in the parks and I see him improving but he of course can't wait for bigger changes, especially in the phlegm/swallowing department. Me, I'm just glad to have him around!
Peace, Hang in There, Patience, Gratitude, All Good Things,
Janet

I don't "feel" like putting anything in my mouth...Not really from pain, but from more of a gross feeling, and HORRIBLE HORRIBLE taste(s) and nothing tastes right.

I tried to eat some soup a week or so ago and it tasted like dog crap. I took one tiny sip and gave up.