My Mum, Australia

Sorry for my delayed response everyone – have managed to get Mum away a couple of times in the past couple of weeks, and computer access has been minimal! And I really loathe typing on my phone!!

Back in September, Mum and Dad purchased the house next door to mine, up near Maryborough Queensland, overlooking the beautiful Mary River. It is the most beautiful place and Mum and Dad were planning to live out their retirement there, which was something we were all excited about, naturally. Then in October, Mum was diagnosed with this dreadful cancer, so you an imagine how it must have been to go from such an incredible high to such a devastating low. Mum’s immediate response was to say that she didn’t want to visit her new house again – she couldn’t see the point if she had no future there. Thankfully, she has moved forward from that reaction, and we have managed to get her up to the house twice, for a couple of extended stays! And she has really enjoyed it, and says she feels calm and happy there. I’m so grateful for this. She needs to be down in Brisbane for her treatment at the moment, but she’s seeing that she can still enjoy her house as a “get-away” at the moment, and who knows what might be ahead? One day at a time, and make the most of every opportunity, I think.

Lainy, Catherine and Marion, thank you for your responses, and good words of advice. Do not have any info yet on the keytruda trial, but will post when I do – and will look at getting onto the compassionate use thing right away, Marion. Thanks for the link on blood clots also Marion – it was very informative. Always good to know the “why’s”of things!

Sandie xx

Hi Everyone,

Yesterday we got back the results of the first scan done to see how Mum is progressing on Gem/Cis. She’s had 2 rounds so far, and the response is “mixed”. according to her oncologists. There has been some small reduction in some lymph nodes, but a slight increase in the tumor itself (they think, as it’s ill-defined and hard to see), and slight increase in her other “multiple’ nodes in her lungs. There was also growth in the multiple nodes in her peritoneum and small bowel (we didn’t even know about those) and a new occurrence in her omentum. Also a small thrombus (blood clot) somewhere or other that I’m trying not to worry about. I was pretty gutted to hear that there’s growth and new developments – I was praying so hard for Gem/Cis to really make a difference! The weird thing is that her blood results are showing a continuing improvement in liver function (this has been steadily happening since the start of chemo) and her tumor marker has dropped from something like 40 000 (I think he said) to 13 000. I guess this is all part of the mixed response. At this point Mum’s oncologists want to try at least one more round of Gem/Cis just to make sure of the response – they will scan her again in a couple of weeks. My initial thoughts about this was that if the tumors are growing, isn’t that enough confirmation of how it’s working? But then I remembered the time lapse between scans. The scans they compared this recent scan to were done back in October, just a couple of weeks after diagnosis. There was a period of about 5 weeks between those first scans, and the start of Gem/Cis, where Mum had no treatment at all. Is it possible that growth/new spots occurred then and we just didn’t know about it? and maybe Gem/Cis has been holding it at bay since then? I guess this is why they want to keep going for a bit, just to make sure.

In the meantime, they gave us the good news that a clinical trial is starting at the Royal Brisbane Hospital in February, featuring Pembrolizumab, and they are going to look at whether Mum can be included! I confess I nearly burst into tears at this good news, after the dismal news from the scan. I know that Mum may not be eligible for the trial – she has a thyroid problem – but Mum’s oncologists said that if she doesn’t meet the inclusion criteria, she may be able to apply for “Compassionate Use”. And failing that, there may be an option to fund it ourselves, just to see if Mum responds. I’m just so relieved that we may be able to give this a try!! When I first mentioned Keytruda to Mum’s oncologists right at the start, they gave me the impression that any access at all would be virtually impossible. I’m hoping like crazy that that’s about to change.

So continuing on the emotional rollercoaster!!

Sandie xx

I’ve been gone for a while, so a belated thank you to Darla and tony for responding to my last post, and for extending your support.

Tony, thanks for your advice. Mum has seen a diabetic educator and is trying hard to control her diabetes with diet. She does find though, that after a dose of the Gem/Cis, her blood levels seem to skyrocket – she’s putting this down to stress? After a day or so, the levels drop back down again. I will ask about the podiatrist – she is only into round 2 of the chemo, and so far has very few side effects – mainly just fatigue, but doubtless the cumulative effect of the Gem/Cis will tell on her eventually.

She’s had one appointment with the surgeon who basically just reiterated that she is inoperable, and she has another appointment on the 6th January. I think these appointments are just to keep an overall check on what’s going on – as you say, how the conveyor belt works!

So we are about 10 weeks into diagnosis, and Mum so far is taking the chemo well, much to my relief. They will do a scan after the third round to see if it is having any effect. I am praying like crazy that it does. I am really relieved that the chemo hasn’t knocked her too much so far. She did end up back in hospital with a mystery infection after the first dose, but that was controlled quickly, and she actually seems to be improving as she goes. In fact, she’s almost back to ‘normal’ apart from being a bit tired. She has no/little pain and her appetite is still good. And she is in good spirits, and thinking positively, finally. I guess we all need time to come to terms with the whirlwind that is going on around us!

So we are ready for a quiet Christmas tomorrow, here in Australia, and I intend to make it a good one!! I would just like to thank everyone here for their advice and support, and wish you all a very Merry Christmas and a hopeful, positive New Year. May 2016 bring the best for all of us!

Sandie xx