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Ty Leila I am doing that tonight I don't feel comfortable with oncologist it feels like you just get in then your back out ,I will ask for higher dose creon .Just need answers now fed up of being left in the dark

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  • sheena

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Hi Sheena, hop it all goes well today. Don't let them rush you, you need answers to your questions and my goodness, you've waited long enough for the appointment, but they should have some sort of plan of action for you. I know how painful it is and you've waited so long so good luck today.


Sue

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So on Tuesday we start chemo hooray .oncologist was a bit confusing said he had our appointment for biopsy but then went on to say all that could go wrong and that he was 90% sure that is was cancer and the biopsy would only confirm this .then went on to say as Steve didn't want treatment it wasn't worth having.at no stage did Steve say he didn't want chemo ,it was oncologist that said he needs biopsy before he started it .So we have wasted precious weeks .Will be given a dietician appointment hopefully for next week.So no biopsy, and straight into chemo as much as I'm angry as this could have been done weeks ago I'm just glad we are getting somewhere .question have any of you been asked if you have private insurance we were asked twice today does this give you better treatment?

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Brilliant Sheena, progress at last. What chemo is he having?


We were never asked if we had private insurance. I am sure some otheres here will be able to answer that for you.


Steve must be relieved to be starting chemo finally.


Leila xx

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Good news at last, you must feel that you're getting somewhere now. We've never been asked about private medical insurance and must admit, it does seem a bit strange. Do you know which chemo he will be having yet.


Sue

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How ridiculous this sounds Sheena! I have only had one biopsy in the early days which came back as inconclusive. However, the Multi-Disciplinary Team looked at all information and decided it was behaving like cancer, so would be treated as such and decided to start chemo i mediately. There was never any suggestion to withold chemo until another biopsy could be attempted....their decision turned out to be spot on! (That was two and a half years ago!).


Keep pressure on them at all times, as they sometimes need to be guided a little!


Steve

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Sheena, there have sometimes been other options for people with medical insurance, such as the nano knife treatment, which I believe is now offered in a couple of NHS hospitals. Other than that, it may get you earlier appointments but not sure how much difference is makes to treatment otherwise - having said that, I do believe that some people have survived because they did get earlier appointments, which is sometimes crucial with this cancer. x

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Ty Steve I don't know about guided bleeding sacked I reckon.hav now said meet with chemo nurses on Monday to discuss his treatment and chemo will start weds when I actually asked for tues as this was my day off.more fun today trying to get higher doses of creon as we were only given 10,000 and once again was told do you want a private prescription as we don't do this amount.after tearing my hair out and cursing not vocally I replied well there's always a first for everything love and no I don't want a private one my hubby has paid 54 years into social insurance and you can basically go do one .asked at chemist how much creon is 40,000 is £62 so I am not paying .finally got it why is everyone so difficult .I feel because the outcome isn't very good with pc that they begrudge giving anything .well I'm sorry but I'm in a bad mood now and if I get anymore set backs then I am shouting from the roof tops,sorry folks rant over thanks for all your feed back love to you all

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Oh Sheena bloody NHS it's so inconsistent ! I have to say my Doc here in Wales did'nt hesitate to prescribe Creon's once I told him that's what the Cancer nurse specialist recommended and we got regular visits to our home from our Dr's surgery hope things get better for you I use to tell them what was recommended by PC uk who seem to know about PC than most doctors so just shout your head off x

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That's the trouble we don't have nhs in channel islands it's all about money we pay a lot of money to see drs etc drives me insane

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PCUK Nurse Jeni

Hi Sheena,


Great to hear all your updates.


And glad you got the creon sorted. I notice that you asked about dosage of creon - if you look at the email I sent to you, it states very clearly what starting doses should be with meals and snacks - they are much higher than 10,000! We would never advocate 10,000 units for anyone. If you re-read it, you will also see that these products are produced for use predominantly in paediatrics for the condition cystic fibrosis. 10,000 units is a dose you would give to an infant.


I also stated that the normal pancreas produces up to 720,000 units of enzymes (lipase - one of the enzymes, but also the others as well), and that we need about 10% minimum of this to digest a meal properly (this is a normal meal! ) = 72,000 units of enzymes. If the meal is fattier, you need more.


All of our information also states that you can't overdose on this and that there is no "upper limit" dose, so basically, he can take as much as he needs to correct his symptoms and halt the weight loss.


If his symptoms are not improving, and he carries on losing weight, then he needs more. Please take more rather than less - he will not harm himself at all.


Kind regards,

Jeni.

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Yes good news,


Trying to juggle one thing against the other is not easy, When Trevor started on his chemo they gave him steroid through a syringe, then prescribed steroid tablets for 3 days afterwards, I think this is standard practise, its to prevent/help with sickness that chemo sometimes causes.


We found it put Trevor's blood sugar up alarmingly, and as he never vomited or had any nausea, they withdrew the tablets first and then the infusion, his blood sugar did rise the day after his treatment but not by much and soon settled down again.


Just something else for you to keep your eye on,


take care sandrax x

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PCUK Nurse Jeni

Good news Sheena!


Pleased to hear your updates.


Many on here have had Gemcitabine, and I am sure that they will share their experiences with you.

Hope Steve is feeling better and delighted to hear he gained 2lbs!! Well done you guys!


I was interested to hear that there is no NHS in Channel Isalnds - is it not part of the UK? If no NHS, what health service do you have?


Hope chemo goes well tomorrow Sheena and keep in touch - you have our email address should you need us.


Kind regards,


Jeni.

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Hi jenni we all pay social insurance which goes towards old age pension ,sickness benefit ,family allowance, but all drs dentists opticians have to be paid for its £49 to c Dr £25 for nurse and if you need to go to a&e then God help us it's between £65 and £300 depending on time .once you have been admitted to a ward it's free

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Dear Sheena ,

That is such a drain on your finances ,but if needs must!! you have to find it PC is such a dreadful disease with out the added worry of cost I can only wish you the best of what you can give with what you have .... stay strong .


EmmaR x

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Ty Emma it is rather expensive but what's money .my only regret is I still have to work full time ,I have saved my hols for when Steve will need me most. Well today was our big day first dose of chemo was feeling nervous , but Steve took it in his stride as usual so brave. Saw a good dietician and was really pleased with all the food enzymes etc that I have implemented .That's only thanks to all you lovelys for pointing me in right direction .hopefully all will be well he is fine at the moment so fingers crossed .

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Glad things went well for you both today. I know it can be really stressful, especially the first time, but we found that it easier after that as you know what to expect. Good luck.


Sue

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Great news that Steve managed his first treatment well, and poor you having to work when all you want is to be at home supporting him, lets us know how he is doing take care sandrax

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Hi Sheena,


My Dad had Gemcitibine for his first round of chemo. He got on incredibly well with it. His side effects were minimal, compared to some people. Every scan he had while on Gemcitibine, showed shrinkage on his liver. He even had shrinkage on the pancreas, which is quite uncommon. After 6 months, he did start getting mouth ulcers, and they gave him a break. I wish they would have given him Gemcitibine for his second round.


Pleased Steve got on well. Please keep posting here, we all would like to know how you both are.


Leila xx

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Ty Leila all good at the moment round 2 on Wednesday were does the time go .the chemo nurses are lovely so that helps ,how many lots of chemo do you have till next scan just so I can keep check as oncologist in my mind is not very good .hope you are all keeping well lots of love x

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I don't know if it is different with different hospitals, but with us it was 6 cycles.


But definitely chase them up if you think they should be doing better, or if you have any Concerns. Is Steve's appetite ok?


Leila xx

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Appetite is good now put on another 3lbs that's 5lbs in two weeks .So excited ,now weighs 10stone 11lbs still a big drop as he wad over 14 stone before pc but never mind a step in the right direction

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