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
X
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Re: frustrated
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
Re: frustrated
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
Re: frustrated
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
Re: frustrated
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
- Posts: 1112
- Joined: Mon Jun 14, 2010 1:30 pm
Re: frustrated
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.
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.
Re: frustrated
Hi jeni have it under control now ,Steve has put on 2lbs and his sugar level is down to 13·8 Def going in the right direction
Re: frustrated
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
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
Re: frustrated
Start on gemzar chemo on Wednesday is anyone else on this and have you all been ok or are there side effects
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PCUK Nurse Jeni
- Posts: 1112
- Joined: Mon Jun 14, 2010 1:30 pm
Re: frustrated
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.
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.
Re: frustrated
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
Re: frustrated
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
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
Re: frustrated
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 .
Re: frustrated
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
Sue