My father - advice on his options and engaging with the NHS

[Davidben83]

Hi all,

My father (63) was diagnosed with PC at the start of this year. He had been having pains in his back and suddenly became diabetic. Walked into intensive care who initially panicked about his blood sugar level before testing his for Ca19-9 which was sky high. Five days later he had the whipple. 6/24 lympth nodes were positive and they did not get their margins, but I am grateful that he was able to have it all. Oncologist told him he had a ten percent chance of being alive in five years and started him on Gemacatabine.

The reason I am writing is because the Gemacatabine, half way through the treatment, does not seem to be working that well judging by his Ca19-9 readings which are about 50ish. A month ago, the hospital claimed that it may be high due to the fact that his post-whipple tube slipped out of position aggravating his pancreas & stomach, and ultimately causing an infection. Since then it has dropped by a third but that still leaves his reading at the 50ish level where it has appeared to have stabilised over the past few weeks; still abnormally high.

This worries me. I read that combining Gemacatabine with Cisplatin can sometimes be more effective so I am considering asking the oncologist to change his treatment. The issue is that the oncologist obviously knows more than me and I did not find him that approachable before my father started the treatment so I have my doubts that he will listen to me now.

I am writing to ask if anyone has any experience of:

> Changing their/loved one treatment while half way through a NHS course?

> Challenging NHS treatment protocols; and

> Any other advice that they think may be helpful.

I am partially in denial and partially just feel helpless. I would really appreciate other people's views please even if just to know whether I am dealing with things in the 'right' way.

Thank you.

David

[PCUK Nurse Jeni]

Hi David,

Sorry to hear about your dad.

Sometimes, treatment is changed half way through if it is obviously not working. The optimum would be to get a CT scan to see what, if anything, is going on. This is often done half way through treatment, though I guess not always in the case of a post-operative patient.

Of course it is very reasonable to ask about the cisplatin. It is not routinely used on the NHS in this case, but people have had it privately before a Whipples, to shrink the tumour or enhance the success of surgery. Occasionally, you will find an oncologist who is willing to try different combinations of treatment, so it is fine to ask if it might be beneficial.

I guess they might be waiting to finish the course of Gem to see if the ca 19.9 settles? How far into his course is he?

Kind regards,

Jeni.

[Davidben83]

Thanks Jeni, he is about four months into the course. Two weeks ago his reading was 55 and the following week it was 54 so no real change. I just do not want to blindly follow a treatment regime which is not working. Would you happen to know how much discretion oncologists have to change standardised treatments?

Thanks again

[laura]

hello david, sorry to read about your dad, i can understand your desperate need to know whats happening, why, when, and a million other worries,

try and take a deep breath and look at where you are, i dont think anyone, drs, etc, private or nhs can give a definative answer, just statistics, your dads been fortunate to have had what appears to be a successful whipple, the chemo i believe is belts and braces, talk to dad see what his thoughts are, what he would like you to do?

my hubby bri, is also 63, was diagnosed in feb 2010, unsuccessful whipple in april 2010, followed by 19 months of "gemcap" which is gemcitabine and capecitabine together, he tolerated this fairly well, had two shrinkages showing on scans one at 3 months 2nd one at 6 months.

throughout treatment we were seen every month at clinic [ in addition to treatment] had a scan every 12 weeks, treatment was stopped in nov 2011 due to his continuing wellbeing, we are still seen every 12 weeks and scan done, its been left that treatment will recommence if required. this is to let you read another side to the other journeys on here, all so differant, try to get some quality time with dad, you sound a very caring son, i can relate to your need to "do" something! all the best to you both.

kind regards laura x