glendas-girl

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

Thanks for the Christmas wishes everyone, and for the diabetes advice, Tony and Julie. Mum now has an appointment booked with a new GP to discuss management of her diabetes! She has definitely been struggling to get it under control, and your explanations show us why. Mum asked her (now former) GP about her diabetes just after she was diagnosed, and he told her “don’t worry about it”! So hopefully her new GP will be more helpful with what is obviously an issue for her! It’s a bit alarming the things that get missed/brushed aside sometimes. Makes me very grateful for this community.

Hope everyone had a great Christmas! Best wishes for the New Year!

Sandie xx

Thanks Lainy, Tiah and Catherine for your responses. It’s good to have people who have been through this to talk to, and give calming advice! I really need it, because keeping calm seems to be a problem for me at the moment, especially the last couple of days, in which I’ve been very teary.

Lainy, I asked Mum about getting a second opinion, and she said no. She just doesn’t want to. I don’t think she can handle hearing the “no hope”thing from anyone else. This is very hard for me to hear because I feel that if there is a different view, we are not going to get to hear it, and maybe we are losing a chance here. But I have never been able to change my Mum’s mind about something once she has made it up, and pushing her will just make her angry, so I have backed off and can only hope she will think about it and have a change of heart soon. I also suggested seeing a naturopath/nutritionist – I’ve found one experienced in working with cancer patients – just to help support her in the lead up to, and during, chemo. There’s so much to read out there on nutrition and supplements for cancer patients, and much of it is contradictory – I feel so overwhelmed just trying to figure out what is the best way to go, I thought a naturopath would at least be able to guide us and make sure that I’m not combining things I should not be combining. But Mum said no to that too. I really fear that the “false hope” statement is the only thing that she has taken on board in this whole mess. i feel very much in despair at times.

Tiah, you are right about the importance of seeing the surgeon – that appointment is today, and I’m hoping to clarify quite a few things, just to get things straight in my own mind. To be honest, I’m not sure even why we are meeting with him – if Mum is considered non-operable, what more can he tell us today? I’m thinking that he is just the guy is charge of everything overall, and so this is a “checking in”thing, maybe? My husband has offered to come to be a “different” set of ears today, which I think would be good, but I haven’t run it by Mum yet!

Catherine, thank you for your words of encouragement re genetic testing. It makes me realise the importance of getting to know the specialists a bit better – having time perhaps to build a relationship, so discussions about treatment are more fruitful. I know that we are only in the “ëarly days” of all this yet – at this point, Mum has actually had no treatment at all for the cancer. The fact that it’s been nearly 6 weeks since diagnosis worries me, though Mum is actually still looking and feeling okay and relatively normal (apart from the infection which seems
to have been managed). I’m taking that as a good sign And that’s another contradiction we have been told. Initially we were told this cancer was aggressive, then that it was slow growing! Then back to “aggressive”by the ONC’s. Reading the boards though, I have come to realise that they can’t accurately predict how this particular cancer is going to travel in anybody – all the stories are so different! That in itself gives me hope that whatever happens, Mum may just be one of the lucky ones who responds well. I just need to work on her mental and emotional well-being which has taken a severe beating.

The good news is that my husband and daughter arrived yesterday, and we are in the process of moving into the flat in Dad’s shed. Mum adores my daughter, so this was an instant pick-me-up. Need to get some normality back into Mum’s life, and this is a good start.

Thank you again for your kind and encouraging words. I hope everything is travelling well with you all, and that happiness and good news continue to come your way. I am working my way through the discussions on this forum and am often amazed at the courage, love and resilience shown by the people who have posted. My thoughts and prayers go out to all those who have had to come here looking for answers and support, and I am grateful that this place exists, otherwise I would feel very much alone!

Sandie xx

Thank you Lainy, for your response. It’s good to talk to someone with experience in dealing with this disease. I have asked to speak to the doc in charge of Mum’s case, and will get a chance to do so when she sees the oncologist as an outpatient on the 10th. So far, she is still in hospital, but thankfully her pain is under control and she is a lot more comfortable and looking happier. The doctor’s think she may have peritonitis, caused by the operation for putting in the stents. They are hoping she can come home tomorrow, now that it has all settled down.

Mum is 67, and in fairly good health, though carrying a bit of weight. She was diagnosed with diabetes about 4 months ago, but was controlling it well with diet and was not on meds.The last couple of months though, she has been more easily fatigued and lethargic, and it seems now we know why. She is not eating well in hospital – just lost her appetite – and I can’t wait to get her home, and try to get a bit of strength back into her.

When we spoke to the ONC in hospital a couple of weeks ago, he told us that without chemo, she would have up to 6 months, with chemo up to 12 months. We will find out more when we go to our appointment on the 10th. Mum says she will give chemo a go, but if it’s too hard on her, she will be stopping. I respect that decision of course – and you are right, it’s about quality. But obviously I am hoping that she is one of those people that copes well and gets maximum benefit from it. I keep reminding myself that she is her own individual, unique person, and that no one can accurately predict what her future will be. I am hoping and praying for the best.

Dad and I went to see our family GP today, and he explained to us that in the major hospitals in our area, teams of specialists get together from all major hospitals to talk about individual cases. He assured us that everything would have been considered and that doctors keep up with all the latest info from around the world. He seemed to think that a second opinion would not be worth it. It was difficult and overwhelming to hear this. Not sure I’m convinced.

Thank you for your advice about being ‘gently in charge” – I think you are right, and will be doing my best to do this. And thank you for your support. Talking helps