Picking brains again ... !

[emcee46]

As I've mentioned before on this site, my partner has been previously diagnosed with an adenosquamous pancreatic tumour in the body and tail of her pancreas. Two sessions involving eighteen separate applications of chemotherapy (GemCis) have resulted in a 90% reduction in markers and a 50% reduction in the size of this primary tumour.

However, in the build-up to what was planned as a new spell of radio and chemo, a PET scan was done (belatedly?) which showed that, contrary to this tumour being 'locally advanced', it now appears to have been metastatic all along, with further hot spots showing up in the lymph system.

The 'good' news would seem to be that these new hot spots appear to have suffered the same fate as the primary inasmuch that they don't appear to be growing or spreading due to her treatment so far.

So, we're back to chemo again - this time, it appears, a 'systemic' version which has yet to be decided upon.

I just wonder if anyone has trodden a similar path or has any thoughts on where we're at now please?

[Juliana]

Hello,

I'm not sure I know the answer to your question, but I do know that 'systemic' is full body treatment, all cells will be affected. I have only seen chemotherapy being used directly into a tumor in clinics abroad (like Germany) - and wasn't aware that you could get that on the NHS (if that is what your initial treatment was). GemCis I presume is a combination of Gemcitabine and Cisplatin - I know Gemcitabine is giving intravenously, making it a systemic treatment. I am sure I was told Cisplatin is similar but over a much longer period of infusion.

I have never had a PET scan even though I did request one as my oncologist said it would not benefit me, my type of cancer (adenocarcinoma of the Pancreas) would not show up on the scan (mine too had spread to surrounding lymphs), yet I have read many people in America have PET scans as standard for Pancreatic Cancer. I also requested an MRI and was told the same thing.

The good news here, is that whatever they are doing......it's working!

Kind regards,

Juliana

[emcee46]

Hi Juliana ...

Lovely to get a reply so promptly!

I think the impression I may have given that this tumour was targeted separately may have come from the consultant radiotherapist who was planning to do just that coupled with a 'side' of chemo. Thus, when he referred to a 'systemic' approach, I believe, with the benefit of hindsight, that he was probably referring to our return to chemotherapy in isolation.

Regards ...

Mark

[LilyG]

Hi Emcee,

Not sure if you've read any of my posts but I am new to this. My husband has already fought Renal Cell Carcinoma and had a radical nephrpectomy almost 3 years ago - we were due to be given the all clear in April when an anomaly on his pancreas led us to numerous investigations and after being given the all clear we eventually went to the Marsden in late June to be told that it was all but clear. The upshot is that not being able to get in on the NHS we went private and in spite of all the investigations that my husband went through once they had opened him up, the tumour could not be resected due to its involvement with his coeliac artery. We had a terrible time with his Consultant who was completely non-comittal and evasive but were eventually told that it wasn't secondary but a new primary tumour that was locally advanced. We were told to apply for Disability Living Allowance under special circumstances and have been expecting the worse. BUT we obviously haven't had a scan yet but still his markers are low (always have been) and apart from being tired and feeling a bit cr*p, we are LIVING. Even the kids (8&6) who were expecting the worst have relatively forgotten the turmoil. We are not deluded but initially were hoping to get to Xmas...it looks as though we will get there but we have realised that we spent so much time thinking about HOW MUCH time we had left and getting very upset about it all but now we just want to ENJOY what time we have left. Now I am the least evangelical person you could know and I am probably not answering your question but I just wanted to let you know that we we have gone though many ups and downs and celebrations and false negatives, anger and sadness, research that comes to an end when you realise that it's only in Japan or the US but the one thing that you know is that you don't know - everyone is different. I am not even sure if I have said anything of use but I just hope that in spite of the, what seems to be normal with this type of cancer, conflicting news / results that you have had that you can remain focused on making the most of what you have - you both need it x

[emcee46]

Hi Lily ... A lovely letter which probably summed this disease up. You may think it's a bit confused and not sure whether it was helpful to me or not - but isn't that the nature of the thing anyway? Life sure as hell slings us all into 'clubs' at many stages in our lives whether we like it or not and the bittersweet reality of this one is that you just know everyone's genuine by definition of what we're all facing with our partners or personally. Doesn't make it any easier of course, but it's nice to know we're all working towards the same end without exception.

You're also right, of course, that everyone's different as to how they're going to react to their treatment. I suppose we all pick each other's brains so that we can avoid pitfalls and maybe take a generally-proven path in the time that we have in which to do these things.

I look at my own partner (Ane) now and she's put weight back on, eats like a horse, has virtually dispensed with the Creon and Imodium, her hair's growing back and, overall, she looks pretty damned good.

BUT ... we all know that this is one that does come back and I think that's what we all fear most: how 'angry' it's going to be when/if it does and what will be available or stuck in an 'unapproved' medical pipeline that we can't use.

So ... confused Lily? Aren't we all?