Thoughts from the PC frontline

[WifeampMum]

Hi Violetmia,

The NICE recommendation for Abraxane is that it can only be given for previously untreated metastatic pc so patients who have already had Folfirinox for metastatic cancer aren't eligible. In my husband's case the Folfirinox was given before he was metastatic. His oncologist is therefore going to apply for him to have Abraxane.

I feel very strongly that it should also be recommended for second line therapy and am so sorry that (from what I understand) your husband doesn't qualify.

W&M xx

[Dandygal76]

That is not good at all - From my extensive research some people respond well to furry fox more than Abraxane and visa versa - the mutations are so many. I am disappointed that the guidelines are so restrictive because you know quite early on in chemo if it isn't going to work at all. I had to fight to get Folfirinox as a 2nd line treatment and even then they could only do it because the first line treatment was not NHS and so they could interpret the guidelines a bit more fluidly. Obviously dad did not make it that far in the quick turn of events.

Anyway, sorry to jump on the treatment bandwagon W&M. I have all my fingers crossed that he will be eligible - have you looked into other trials? They do seem to be targeting the genetic mutations now. I very much wish I had pulled dad out earlier and got the biopsy done and moved him to the old fox. But, that is to be expected and hindsight may or may not have made a difference.

PW will tell you - out of all of the people that did this at the time we did this I was so routing for you guys to be the success story. I had tears in the office when I heard the news of the spread but one day someone is going to beat this blasted thing and I wish with all my heart you guys will be the first and you will get to the trial. x

[WifeampMum]

I said not long ago that patience wasn’t one of my strengths. I think I’m getting better at it which is just as well as we’re STILL waiting for hubby’s treatment to start.

We expected that by now the trial people would know whether he had the genetic mutation that qualified him for the HALO trial. But after a 2 week wait to see what grew in the test tube they told us that his tissue sample didn’t contain any cancer, so a further sample is needed. Trouble is, we were assured that his first biopsy retrieved as much material as possible, so we’re not confident that a second biopsy will be any more conclusive.

Anyway, on the recommendation of the trial people, hubby had another CT scan yesterday. If his lung met shows growth they will schedule another biopsy. If it doesn’t, I guess we’ll have to wave goodbye to the trial and head for standard treatment.

In the meantime hubby is feeling remarkably well considering. On Planet PC you can’t get much better than that so I’m currently feeling blessed.

Love to all who happen upon this post,

W&M xx

[Dandygal76]

I so feel your pain. This in between time is just awful and everything is just so slow. It is still awful it is not treated as a medical emergency.

I am interested to know what technique they used for the biopsy - was it EUP or needle through the skin.

Stay strong lovely x

[WifeampMum]

Hi DG,

The lung nodule biopsy was needle through the skin. We were v impressed by the consultant who did it, he really took his time explaining everything before and after the procedure. In fact he’s won awards for the new technique that he used on hubby. Details here:

https://www.royalfree.nhs.uk/news-media/news/new-lung-biopsy-method-cuts-wait/

He knew that we wanted enough tissue taken for genomic profiling and he assured us that he took as much as he could.

We now have the results of the latest CT scan. The lung nodule has grown, but only slightly. This probably means that we’ll give up on the trial as there’s no point in trying another biopsy yet and we’re keen to get him started on treatment. Hubby’s case will be discussed at an MDT meeting tomorrow, and we see his oncologist on Friday for an update and hopefully an action plan.

[Dandygal76]

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

[WifeampMum]

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/oncology-live/2017/vol-19-no-19/pancreatic-cancer-advocacy-group-leads-the-charge-for-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.

[WifeampMum]

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-10-2015/modified-nab-paclitaxelgemcitabine-in-pancreatic-cancer-efficacious-less-toxic-less-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]

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]

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

[WifeampMum]

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

[WifeampMum]

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]

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