Hi everyone- I just read the long term survivior topic and was touched and inspired. I just have a question- the RO scheduled Charlie for his second PET and CT scan already (it hasnt even been 2 months since the first one). He scoped him and said that there was no tumor that he could see. He also scheduled our next visit for 2 weeks after the scan. I am concerned- should I be?

Also- does anyone have any advice or information on withdraw? Charlie went from fentenyl 150mgs to 100 mgs and we were in the hospital for 12 hours because he was dry heaving, had cold sweats, and servere stomach pains/ nausea. THey did a CT of his stomach and found nothing wrong. THe only thing they could come up with is that it might be withdraw. Did anyone else expierence a difficult time coming off strong medications?

Thanks!

Hi Delia, It sounds like the RO is just following him closely but you could ask him if this a normal routine so you have peace of mind.
Usually fentanyl is increased or decreased in 25 mcg doses. They also have a 12.5 patch now to make the transition off it easier. I think he needs to taper down the doses more slowly. Good luck and I hope he is feeling better.
Regards JoAnne

Hi Delia --

You have to have a withdrawal plan for Fentanyl. Some people have no problems, but most doctors taper off in 25 mcg doses and then over a period of weeks.

The withdrawal symptoms you describe should have been anticipated as *possibilities* at least, with a 50 mcg drop. I am amazed the doctors seemed puzzled.

A fellow patient of Barry's at Hopkins told us he had a lot of trouble getting off the patch and he struggled for some weeks, despite a good withdrawal plan. Eventually he got to be OK, but it shows that individual's tolerance and reaction to this drug varies.

Hope Charlie is feeling better soon!

Gail

Delia,
Being that Fentanyl is 40 times more powerful than heroin, my personal opinion is that the sudden downsizing of the dose could have had worse side effects than he had, convulsions and death come to mind. What did you they give you - a 1st year medical student - or worse yet a PDA (actually some PDA's are knowledgeable than some doctors)?

Everyone one has previously given the appropriate suggestions so I won't revisit it but my personal opinion (again) is that the doctors were highly irresponsible and dangerous in their withdrawal plan(and I use that term loosely) and if it were me, I would rattling some cages (at least the hospital omsbudsman, head of of the department or a personal injury attorney).

And why all the CT's? Why not MRI's. He doesn't need all of that extra radiation (1 CT is = to 6 years of normal background radiation). MRI's do exquisute soft tissue examination and are my CCC's followup scan of choice.

About the PET, I never got 1 followup PET, let alone 2 in such a short time period.

He's not being treated at CTCA or some funky outfit like that is he? (I love their disclaimer, in small print on their TV add, from a couple of survivors "...not all patients have this outcome") - *no shit!!! (*comment added)

Quackwatch LOVES those idiots. http://www.quackwatch.org/search/webglimpse.cgi?ID=1&query=CTCA

YOU must be his advocate. ALL of the information that you need, to be that, is here on this site (whether the forum or the home page). You must be prepared, in advance, and have the appropriate knowledge and written set of questions and challenges BEFORE they start some questionable procedure. Reporting to us afterwards are great warnings for patients to come but are not helping Charlie in real time when he needs it most. You must step up and be more proactive.

Correction: PA = Physicians Assistant. PDA's are "Personal Digital Assistant" like Blackberries.

And I meant "funky" not fuhky. PLEASE Brian give us spell check!

It's 105 here today and my brain has almost shut down for all intents and purposes.

Delia, can't help much with the withdrawal from the Fentanyl because my husband was only on 50mcg when we stopped it. He immediately began taking hydrocodone every 6 hrs. and had no major problems after that.
I echo Gary's plea to Brian. Please give us Spellcheck! { I would much prefer that to the graemlins. Amy

There is no spell check available for this board. For those like me that are hindered by their inablilty to turn a phrase well the first time around, spell well whether their lives depended on it or not, or otherwise deal with the other mishaps of the written medium, they will have to spell check in MS Word before posting (as I do in my frequently overly long rant postings). As to Gary's post, I think we should keep the northern part of CA over three digits more often, as I find the tone of his postings much more colorful....

Having had a good case of "the withdrawls" when I took myself off of morphine from my home in Santa Fe, far removed from MDACC and my doctors, there is little doubt that your doctors screwed up here, and that it took the hospital staff so long to figure it out when they could have brought him down easily, their actions boarder on criminal if not down right incompetent. In my own case, in my morphine haze, I made decisions on my own behalf without consulting anyone.... I enter that comment here least anyone seriously think that I am right more often than not, or that they doubt the mind numbing effects of strong opiates and their ability to screw with any good judgement you might have.

Thank you everyone for your responces! I find that the spell checks rarley catch ALL of my spelling errors!

I called the RO yesterday and he said that there is no way that it could be withdraw from fentenyl and to keep him on 100mgs. I couldnt watch Charlie suffer anymore and cut a 50mg in half and he is now on 125mgs. He is doing much better- his throat just hurts more and he takes the same amount of morphine for breakthru pain. Is that horrible? I refuse to watch him suffer when there is something I can do about it- I am with him everyday, not the oncologist. I know with time (not 3 days) Charlie will be able to come off his meds, but it is not going to happen in an ER. Being an advocate is difficult here(is it just New Jersey?) becuase these 'medical professionals' can be hard (like the MO asking about what Charlie was going to eat for Easter dinner when Charlie wasnt able to swollow with out horrid pain and he just ordered 2cal for his PEG tube) and being so young doesnt help. But I do it with PRIDE!

The doctor also said that it was routine that the CT and PET Scan are being done- he was just following him closly, but when I told him that I noticed Charlie's vocal cords werent moving. He said that they were sluggish, but not to worry. I wonder when that day will come!

On a better note- Red Book Magazine mentioned OCF in a an article on Gwenth Paltrows father. Also - Charlie and I have a wedding website for anyone who wants to take a look:
www.deliaandcharlie.com

Thanks agian for the great advice (and a smile- Gary)

DON"T CUT FENTANYL PATCHES IN HALF!! (And yes, I AM shouting!) This could cause a release of a dangerous overdose (per warnings on the package)

And it is almost certain that Charlie's problems are withdrawal, our MO tapers off in 25 mcg increments and if that is too much, in 12 mcg increments (the new dose patch, note it is 12 mcg. and not 12.5 -- which would seem logical but...) This is at Hopkins so I have to think they have a LOT of experience with this issue. The MO and RO both say that while withdrawal symptoms are rare (if it's done right) but they do occur, and the ones they told us to look out for are nausea, sweating, dizziness and stomach cramps. Sound familar?

Keep Charlie on the pain killers he needs to avoid pain. Anything other than this borders on malpractice, per top pain management specialist who spoke at recent HNC symposium in this area.

And for what it's worth, standard practice at Hopkins is a PET/CT at 3 and 6 months and again at a year, though Barry's ENT felt the latter was optional based on physical exams -- the RO was a bit more pro doing this. They might just do an MRI.

Gail

HOW MANY TIMES HAVE I WARNED EVERYBODY THAT CUTTING A PATCH IN HALF CAN HAVE FATAL CONSEQUENCES. UNBEILIEVABLE!!!!

Delia you need to READ the other posts on this site - there's been a lot of talk about Fentanyl lately and what NOT to do.

I would get Charlie to the ER immediately and tell them what you did.