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Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Mon Nov 20, 2017 1:53 pm

I would do the same.. You have waited long enough and you can't afford another massive wait on a biopsy when the decision could be no anyway and then you have to start mgs processes again. I am sorry the trial didnt work out.. You know i had high praises of where you was potentially going. Do you not think though long term it may be good to do nhs but still profile? I have seen some people with 'lucky mutations and it would be a shame to miss that if hubby has. X

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Tue Nov 21, 2017 11:21 am

Yes DG, haven’t ruled out profiling completely, it’s just that at the moment there isn’t enough tumour tissue for biopsying.

Also I was disappointed to read recently that in the “Know your tumor” programme only around 25% of the people profiled have been found to have actionable genetic mutations.

(See: http://www.onclive.com/publications/onc ... innovation)

There’s no saying that hubby wouldn’t be in that 25% but of course I wish it was a much higher percentage. PanCAN had said previously that it was a 40% hit rate. I guess they have more data now so can be more precise in their reporting.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Thu Dec 07, 2017 3:42 pm

Hubby started Gem/Abraxane chemo this week and so far so good in terms of side-effects.

We’re keen to minimise the number of hospital visits and treatments that he has to endure and we were hoping that instead of the standard ‘3 weeks on, 1 week off’ regime he could have the modified regime of Gem/Abraxane on alternate weeks. There is some evidence that this is equally effective even ‘though the patient gets a reduced dose.

(See: http://www.ascopost.com/issues/february ... ss-costly/. )

But unfortunately our oncologist will only prescribe the modified regime if hubby can’t tolerate the standard regime. So I know it sounds odd but hubby and I are kind of hoping that his neutrophils are soon whacked just enough for him to be put on the alternate week regime. We both feel that this would most likely give him a better quality of life.

W&M xx

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Fri Dec 08, 2017 3:35 pm

I am glad things have got off to a good start and I have also seen the studies on the reduced dose and it seems madness and completely anti patient choice not to let you do this. Surely it would actually save money? Is there any way to appeal and get a second opinion whilst he start on this regime? Did he say why you could not have the reduced regime? I agree from experience that quality of life could be greatly improved because we were always eagerly awaiting that week off on the 3:1 routine because dad would feel so much better and life was much better on that 2nd week without chemo. x

sandraW
Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thoughts from the PC frontline

Postby sandraW » Sat Dec 09, 2017 9:12 am

Hi W&M glad to hear that treatment has finally started, and good to hear the side effects are manageable.
Why oh why don't these consultants understand its all about quality of life, it is beyond me it really is, but perhaps their hand are tied tighter than we think!!
Hope things continue on an even keel, love sandrax xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Sun Dec 10, 2017 10:48 am

Thanks DG and Sandra. Our oncologist is very conservative and always sticks to the prescribed NHS protocols. We've made it very clear to her what we'd prefer but she won't budge.

As it is, as soon as I posted here that side-effects were minimal, horrible flu-like symptoms kicked in with a vengeance, also there's been a flare-up of hubby's neuropathy which started on Folfirinox. So I think our oncologist will want to get him on a reduced dose fairly soon.

W&M xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Wed Dec 13, 2017 11:24 am

Well, well, our wish was granted...hubby’s neutrophils were too low for chemo this week so no treatment yesterday. Instead we went out for a lovely lunch and felt the whole day like we’d been granted a massive reprieve.

We’re now fairly hopeful that going forward he’ll be put on the alternate week regime. Watch this space!

W&M xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thoughts from the PC frontline

Postby Veema » Wed Dec 13, 2017 4:20 pm

I know this us what you wanted to happen, but for future reference, we were told that napolina plum tomatoes are great at keeping neutrophils up (seemed to work for Nige)...just in case they drop too low for the alternate regime.

Vx