Hello everyone

I am 8 weeks post R/T, chemo and feeling good, so last week I said goodbye to the last of my pain killers, 25 mcg Fentanyl patch. No problems for the first couples of days - I can go all day at work with only a small amount of discomfort not pain but tightening around the throat etc.

Come bed time and then it really kicks off, my legs seem to take on a life of their own and I start to ache all over. Four nights with no real sleep and its driving me nuts, took a couple of Tramadol last night, did not seem to have much effect fell asleep at around 7am and then had to get up to go to work.

I don't think that I am missing the drugs (thank God), and I am sure I read somewhere it's to do with the chemo sort of a late reaction.

Any suggestions or how long does it last, perhaps a visit to the doc for some sleeping pills, (I can just picture his face, he seems to roll his eyes evertime I visit, it's funny how you can become a difficult "patient" when you have cancer but that's another story).

If anyone has any suggestions it will be greatfully recieved.
Tony
thanks


Tony

Hi Tony
I was never put on patches and and present only take 5ml dose of oramorph 2 or 3 times during the night

The hospital prescribed Zopiclone 2 By 7.5 tablets,they dont knock you out for 6or 7 hours but they have helped me to get off to sleep and relax me

Id be interested to if its a delayed action to the chemo

I am sure our good friends here will be able to advise you

Could it be going straight to having no meds

I think your doctors attitude is terrible mines great

Hope you get some pain free sleep soon

Best wishes to you and Kathy

Let us know how you get on
Dave and Sue

Hey guys!
Tony, what you've described is EXACTLY what i had coming off the Oramorph!
My legs were soooo restless by the evening. & i felt achey like i had the flu. Also, my muscles would spasm in my arms & i'd more than likey be in tears by 9 o'clock! There was one incident when my partner was working late and i phoned him in tears because i'd gone all day without any morphine and my legs were crippling, and my arm had seized up! To top it off, i couldn't open my morphine bottle because of the nerve damage in my hands!
I cut down to 5ml every other day. & then i thought ahhh well i'm gunna have withdrawels whatever! They lasted for about 2-3weeks. & i found Nytol, from over the counter helped me alot! I used the course and by the end of the box my sleep pattern was normal.
I know what you mean about seeing the dr. Mine takes 20mins after seeing his last patient before i get called through. Personally i think he's bracing himself for another round with me *lol

See it through, it gets easier!
Michelle

Thanks Dave, Chelle I will try the Nytol you should put pen to paper Chelle I am sure you could help alot of people with your great advice.

Talking about GP perhaps we should start a posting, here one that might make you all laugh.

The practice that I visit is in a small town with about 10 GP (you never get to see the same one twice), I always use to think that they were OK in till I became ill.

Anyway I had just finished treatment and had run out of 40sips as supplied by the hospital, went to GP to ask for more and he started to mumble something or other went away to pick up the supply I asked for 3 weeks, on picking up the 40sips the chemist gave me a hand written note (written on the back of a DR script), saying it was the practice policy to not supply these to people who should be eating etc etc.

Being a little upset I made another apointment (you have to make appointment on the day you want to visit, no exceptions), anyway ended up seeing a female GP asked her what she expected me to do as I could not eat due to mouth and throat problems, after a slightly heated conversation she said head & neck cancers outlook is not to good and I should try and get on with life, I asked her is she ever considered retraining as she was a cr*p doctor.

Anyway that was the start of my battle with the GP, people might ask why not move to a different practice not so easy when it is the only practice in town, I could post a couple of more howlers but you would thing that i was telling fibs.

My wife Kathy found the mouth cancer foundation thank god I don't take much notice of the GP's.

Take care all


Tony

Morning Tony

You gps are shocking

mine will do anything he even had some liqiud pilocarpine salagen made specially

I can even see him without an appointment

he prescribes toothpaste ,mouthwashes ,fortisips ,forti puddings and a whole range of stuff required
same as the pharmacist who will sourc anything

There is a forum on cisplatnin and joint pain under medications Jenni reccommends a supplement chorondroitin ans glucosamine ?

Hows your sleeping got got 5 hours straight last night proberly the zopiclone

Regards
Dave and Sue

Thats shocking Tony!!
Initialy i went to my G.P. in the summer of 2005 with my enlarged lymph gland and was told "it happens sometimes and probably wont go away. By the x-mas my ear was blocked. By the january my nose bleeds started and was told "just a synus infection". A couple of months later my left nostril blocked, still had the en;arged lymph & was told "synus infections are hard to get rid of". Still having blood running down my throat & nose. So end of May last year i went AGAIN! Lymph size of an egg, plus all other symptoms & finally got my ENT referral. So i was probably living with my cancer for a good 18 months before it was diagnosed!

I had to see my G.P. through chemo, about 3months after i had been diagnosed. He said i "should have been to visit them more often & i may have got mthis sorted sooner" !!!
I was mortified!! 3times missdiagnosed and it was apparently MY fault for not going back every 5 mintues until they got it right! I was outraged they should try to put this on me!
I think they were trying to cover their backs as they'd made so many mistakes.

My mum has the same GP as me, she saw him for ma back problem while i was going through treatment. I came up in conversation. The Dr. said "i can't really discuss Michelle, but if you're going to sue me for that, then could you also sue 'Dr.X' for missdiagnosing her originaly"

Another time i saw him just after treatment about the oral thrush. He rolled his eyes and said "now why cant you get something simple like tonsilitis or a cold?"
Like you say, it's not always as simple as just changing your GP. I phoned around 4/5 in my local area and they all said they weren't taking anyone on right now. I think perhaps i've been G.P. Blacklisted?? *lol

Robin has a 100mcg Fentanyl patch, and we have been told that he must NEVER try to come off it by himself and that it is a very precise science to readjust the body to living without it.On at least three occasions Robs patch has detached itself from his skin and that means he is not receiving the medication,he has suffered exactly the same symptoms you describe and worse.To be absolutely blunt it was like watching a heroin addict who neede a fix!!!!Rob also suffered like that when we tried to get him off the oromorph.We are seeing our GP every week now and he has set out a programme to gradually reduce the drugs until Rob can tolerate it.The worst thing about all this is like Rads and chemo the cure can be worse than the disease.


Liz

Hi all.

Chelle your gp sound worse than my lot, perhaps we should start a black list for cr*p gp's, having said that Dave seem to be lucky so I suppose it the luck of the draw. Maybe she was just having a bad hair day when she made that comment.

Just a couple of little kicks and I will leave the poor old gp's alone. When you go to see him or her does your look up from there computer, it reminds of the little Britain "the computer says no".

Went to the gp and he said do you mind if a couple of student doc's sit it I said no problem, anyway student starts to ask lots of questions I answer them she then ask if she can see my neck and look in my mouth, I said no problem afterwards I said that the first time a gp has looked at my neck and inside my mouth he went a funny kind of red.

Thanks for the info Cookey, when I asked about Fentanyl gp said take it off, I asked for some backup pain killers and was given tramadol, they seem to work if you take enougn say 4 hours before you go to bed, stopped turning round like a mad man, just don't seem to sleep.

I suppose it will ease off after a time, don't seem to have a problem during work.

Regards to you all


Tony

Ahh yesss, student and trainee docs! I've had many funny experiences with them while i was on the chemo ward, i had my treatment at the Royal Sussex University hospital. One doctor asked if i'd mind having a chat with a Newbie, so of course i said no problem! She came in and sat on the chair by my bed and just stared at me! Ok - "was there anything you wanted to ask?" i said. She just looked a bit blank and said, "no, not really". Oooook then! Several minutes of awkward silence passed and then she asked how my cancer presented itself in a very quiet mousey whisper. Poor thing looked like a rabbit caught in the headlights!

Hi Tony
Yes i think im very lucky with the one gp i see regular i have had problems prior in the practice but only 1gp and only once

Tony i wonder if its because your so busy at work and then on a night you feel it more or are you doing to much

I know at present i can not return to work

I think it great what you have achieved

Kind Regards
Dave and Sue

It never got to me during the day either. Just at night. I couldn't even stand at the sink to wash up! I couldn't wear jeans because it irritated my legs, so i had to settle for jogging bottoms. One night i had this thing where my toes were cramping & my big toe was kind of pulling away. I tried EVERYTHING to make it stop!
But all is fine now!

Tony you're doing great to be back at work already!
& Dave you'll get there too!

Cold Turkey? That was my Christmas dinner because of the time it took for me to eat it.

Dave and Sue - I was interested to hear about your zopiclone intake. Was it 2 times 7.5 mg tablet per night?
Don't forget anti-depressants like citalopram.They do a good job.

best wishes Tony K

Hello All

Working can be difficult when you have a wooden neck and your shoulders ache, but needs must. We have our own small business mainly export market so we tend to work strange hours. Started back about 3 weeks after treatment, spent most of the first two weeks sleeping on the office floor in a sleeping bag.

Chelle, your gp is much worse than mine I don't think I would swop with you, ask the pratice manager for there a copy of there complaint forms take them to a CAB offcie or a lawyer. We all make mistakes even doctors but to compound there mistakes with further mistakes well it makes you wonder what they get paid for.

Take care all


Tony

Hi Tony K
Yes 2 by 7.5mg i was on 1 tablet but now 2

10 mins and im out sometimes for 2 hours up to 5 hours but at least im sleeping i had been taken the 1 tablet for a while so they were in my system

but for the time i have been taken 2 tablets take at ten asleep by quarterpast

Tony and Kathy
Still say thats great going ,listen to your body though

You both take care

Dave and Susan

Hi Tony K

Just read your posting about eating, must be really lucky I started eating in the 4 - 5 week after treatment, I suppose it helped having a dr who said no more 40sips.
Had a big chip and cheese and salad cream sandwich for lunch. Seriously I am so glad that I can eat the taste buds are strange hence the salad cream.

Dave, my body is knackard but I find that work keeps me sane I don't think about cancer at work come to think of it I don't think to much about it at home to much either too knackard..

Bye off home now..

tony