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.

Do not speak to me like that.

Gary- if only I were as smart as you then this caretaker stuff would be a breeze.

I made a mistake- not fatal because Charlie is NOT A FIRST TIME OPIATE USER.

This will be my last post- I wish everyone the best! Keep your head high and don't EVER let someone make you feel incapable.

God Bless Everyone!

I have NO apologies. Period.

Maybe if you LISTENED to some of the suggestions here then maybe caregiving would be a "breeze" (as you put it). But realistically caregiving is tougher than having cancer itself. I have nothing but respect for caregivers and I owe my life to my wife who was my caregiver.

If you want to do incredibly dangerous, reckless and stupid things, in spite of ALL of the information here then it is well for you to go elsewhere, we obviously aren't making a difference anyway. And don't try deflect the blame on me for your bad decisions and for giving you "tough love". I do regret having to be frank like this and I hope that no one ever puts me in the unfortunate position where I have to go there again.

I don't care if Charlie was a junkie - Fentanyl is in a class by itself. It's a synthetic opiate and 40 times more powerful than "China White" heroin and 80 times more powerful than morphine.

I do wish Charlie the best and pray for his survival.

That was a bit harsh...she is young and trying her best.

Dont get upset Delia.. he means well really.

Thought it was Glenn posting again there for a minute... I miss that old grump!
Marica

You know what, I agree with Gary's post wholeheartedly on this. Had it not been for the advice on the fentanyl patch that I got here, I might have jeprodized my husband big time. I might add that I also read the drug fact sheet and warnings with a magnifying glass. Had I not done that I would NOT have known to remove the patch when John's temp hit 101.6 one morning. I don't understand why the Docs who write the script and the pharmacist who fills it don't sit the patient and caregiver down and go over the safety considerations.
Delia, I hope you cool off and continue putting your love and concern for Charlie foremost. It is doubtful that you will find as much knowledge and caring anywhere as is available to you here. Amy

Ha! I love this site...it just doesnt get any better than this! God Bless my Sister for guiding me to all you wonderful people out there. Ok, i get it now...ask before you do. So im asking now (and let me remind you, i havent done yet) Tell me about the "patch". I want to know it all. Im fixing to start my radiation treatments (for 6 wks) do i need this patch? I recently had my tonsils and my teeth out, and they put me on liquid Hydrocodone, felt so good, never had pain, but one problem...never woke up either! So tell me about the patch? Can i function do daily activities or am i going to want to sleep my life away? Gary, you remind me so much of my dad, haha your so cute!!! You keep that "tough love" going, we need more outspoken and brutally honest people like you in our life!

...So maybe it would be good to take a deep breath here. Cancer takes so much from us let's not give it our support of each other.

Who here has not made a mistake on some aspect of their care? I know I have and probably will again. This isn't a normal time for any of us but that's why this forum is important. This is how we learn and share our do's and don'ts.

We're all doing the best we can, let's cut each other some slack.

Regards JoAnne

Hi, Linda: I started two threads on fentanyl recently: One is titled "4 short questions" in Currently in Treatment, the other is "Fentanyl DuHHH" in Medications, Treatment and procedures. I got lots of good info in both of those. I am sure there is much more if you do a search. John has been on liquid Hydrocodone for pain management for 17 mo. It was not really solving the problem. We tried the patch, but he was not able to function on it[he became a space cadet very quickly on 50 mcg.] so we had to stop and go back to hydrocodone. However, we heard from lots of people who could function well on the patch. I think it depends on your tolerance to certain drugs and how strong a dose you need to control pain. If John had been on 100 mcg, he could have gone to the moon without a spaceship. My guess is that it is trial and error. Do some good research and be willing to take it off if your mind gets screwy Amy

Amy, thanks so much for the info. it really does help. Sounds like the majority can use the patch. I will ask my doctor for it and try it. The only thing i didnt see, is when is it needed? Normally what week of radiation? (i know everyone is different, but what is the norm? )

Linda, some people never need it and I almost got away without it. Didn't give in until the last week of rad when the neck burns really began to get the upper hand. If I knew then what I know now, I would have asked for it about a week before. You should have a free pass for the first couple of weeks at least, and probably longer. I am not sure there is a norm, as it depends on skin type, where the rad is aimed, what kind of rad, and whether there is concurrent chemo. You are very correct in that each of us reacts differently. I managed on just OTC Tylenol for almost the entire time. In fact, I always took a Tylenol about 30 min. prior to treatment because that table was so hard. Also, the patches did not make me at all sleepy or nutso, and I was up to 3 at one point post-treatment. Just remember, it is your right as a patient, not to hurt. Being in pain hinders healing. I found the gearing up phase almost endless, but once treatment began, it went rather quickly. Actually, because of the kind people on this forum 4 years ago, I was prepared for much worse than I experienced. While I was waiting for the other shoe to drop, for things to get REALLY ugly, I was done! I hope this is your experience also.

Hi Delia:

Your story touches me particularly because I was dating Dave (first major post-divorce relationship-took me one marriage to figure out how to do it right) when he was diagnosed with tonsil cancer. Dave drove through Boston snow while vomiting in the midst of his radiation treatments to buy me an engagement ring. So, I better than anyone here understand the place of a fiance, albeit I was a tad older than you, in love with a guy who is dealing with an incredible challenge. I understand every shred of fear and anxiety you have, and possibly a teensy (let's be honest) bit of anger, that a marriage shouldn't need to start out in a post-cancer haze.

Well, mine did and yours will too. It has not been a picnic but it has solidified for me that this is the man I adore bar none and cancer became merely the defining moment of my love for him. I still remember the surgeon calling out from the OR and telling me he couldn't visualize clear margins and "would it be okay if I break David's jaw so I can see better and sleep tonight".Right, so break away,sleep tonight, and what the hell have I done and was it the right decision?

So, why am I expounding here? Because, you are an extraordinary person caring deeply for the person you love.At times, it is easy to become overwhelmed and make errors even when your intent is good. I suspect you responded strongly to Gary's admonishment because it SCARED you that you could have unknowinglg done something hurtful. But, luckily, you did not and Charlie is okay.

Rule number one for us health care providers is to check and see if the patient is breathing when and errors may have happened. So, he is, now check your own breathing.The toll of being a caregiver is enormous and the responsibility is staggering 24/7 while you are enmeshed in the process.

It might be helpful for you to print some of the posts to look at when you can or have someone else look at them with you and help sift through the info. It's hard to be really "on" when you are really tired.

My wish for you is that you stay put here with us and remember that there are many personalities on the board and sometimes approaches clash. However, the wish to be helpful usually is the root of the reactions from those who post even when they post strongly or you don't like what you hear.

Breathe and try to talk about what is really under your strong reaction. There are alot of veteran caregivers here and we want to support you.

By the way, I really liked your wedding website.

You'll smile again like in your picture- I promise.

Hang in there,

Kim

Kim, what a kind and caring post- it's obvious that "you've been there-done that" Amy

Its heartbreaking to hear such critical comments aimed at such an obviously caring and loving person who is doing her best at caregiving. I thought the boards were intended to offer guidance and support. Hang in there Delia and Charlie!! -Susan

Susan, that is exactly what this board is for AND what it accomplishes. Gary has been here for years, helping others and guiding posters along the right path. You have four posts, please don't criticize him. What he posted was absolutely true, and sometimes the truth hurts.

Dear Susan, I think you missed the point! When Delia cut that patch in 1\2, she ignored the Drug Manufacturer's very specific WARNING on how to use the patch. She endangered her "patient's" life in the process. Doesn't matter if she did it "unwittingly" on this web site, because OCF is dedicated to dispensing the BEST knowledge available to help cancer patients and caregivers. So her mistake needed to be addressed Loud and Clear in my opinion. If some nurse in a hospital or in Home Heath Care had done that, there would be Hell to Pay Gary and others here are trying [over and over again] to disseminate the BEST information possible on the best possible care. I, for one, am so appreciative of the good advice and information I have gotten here. I have ask many questions over the last 18 months and have always gotten good answers. These answers have allowed me to push John's Doc's some, to help eleminate some of his pain and to be a better caregiver. No one is trying to be ugly here- just trying to get the best information out. I have read many posts on other "Cancer Websites" and none of them come close to imparting the real knowlegde athat is available hee. Sometimes that knowledge seems harsh, but it is reality based-kinda like real life! I count my blessings daily for the people on OCF. Amy

I agree the comments weren't critical of Delia. But what she did (although it might seem sensible and of course she did it with the best of intentions) could have had some VERY bad consequences and it was really important for GARY to put that in big, visible writing!

Information on OCF has been a godsend to me too. The quality of the information available here is more important to me than the careulness of the wording--although in general I think people here are very careful and kind in the way they word posts as well.

Nelie

One important thing to always remember and keep in front of us throughout this battle is to arm yourself with all the knowledge that will help you as a patient or caregiver to make it through this horrible disease and recovery process. This means we have a tremendous responsibility to know the inherent dangers in all medications and combinations of medications that could prove fatal. As both a caregiver and a patient/survivor, the ony areas we can't be as dilligent as we want is in the sleep and relaxation processes.

I know, Delia, your emotions are raw from all you have been through. That is expected. Try hard to not be defensive but take the time to read all literature on all medications and any changes to what is prescribed is always approved by the trained medical professionals. Keep a list of all medications and review them with the most highly trained medication expert, the Pharmacist. They can tell you anything you need to know about interactions and risks of medication. They have spent countless hours becoming experts.

To end on my usual attempts at humor I have to relay a story. I am about as anal as my wife and between us we read all we have to and memorize way more than we need. I was one of the "lucky" ones that got a bad batch of patches that were recalled. There was a problem with the time release agent that meters out the dose. In one box alone, I got severely burned from the patch and complained it didn't feel like it was working because I hurt so much and fell down several times complaining because my eyes crossed and everything was just spinning. I was so relieved to hear it was the patches when I got a letter from the manufacturer that I had received one of the suspect batches. I got about a 50 page FDA questionaire but I was too medicated to comprehend what the hell they were asking me.

Great to hear from you Kim, by the way! I hope all is well with you and Dave.

Take care, get thicker skin and be thorough in all you do.

Ed