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Trevor's Story


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Leila, he was very disappointed to say the least, because he feels so well he thinks he is cured!! the professor who is a truly lovely man, explained that he could not cure him, he could only hold the disease at bay, and that he Trevor had to accept that fact, but that he was incredibly lucky that he was so fit, as that meant he will be able to have more treatment when it becomes necessary.

We also had an appointment with the Macmillan health centre within the hospital, with the gentleman we met back in November when Trevor started his treatment. It was good because he was able to get Trevor to talk more about how he felt, Trevor's way of dealing with it is, to put it all away in a box on a high shelf in his mind,forget about it and get on with life. So that's what we will do, not quite so easy for me though. thanks sandrax

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That sounds very familiar Sandra, and yes, it is not easy for a loved one to deal with.

Trevor really does seem to be doing incredibly well, and his symptoms are barely there? Do you think that because Trevor was fit before diagnosis, that this has worked in his favour?


I really hope this carries on for you all.


Leila xx

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Hi Leila, I wouldn't say that Trevor was fit, he never went to the gym or anything like that but he was and still is reasonably healthy, I don't think the disease had chance to impact on his health too much. We have always eaten well, very few takeaways ect, he has never really drunk alcohol, even when he was young, but he did smoke, well still does to be fair, but he has cut down.

I do think being healthy has helped with the chemotherapy, but the rest I think is down to luck, he was lucky to be able to have an operation, lucky to get such a great surgeon and team of oncologists and lucky, that at the moment he does feel well. take care sandrax

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Slewis7313

All sounds pretty good news to me Sandra. It is good to hear Trevor remains so active and feels well.


It is sometimes easy to forget the little devil is inside you. I had 10 months of no treatment and during that time felt relatively normal, but then the tumour marker rose, pulling me back down to earth and back on to treatment. I don't wish that to sound negative as I fully expect Folfirinox to give the damned thing a serious knock-back and again to allow me to have another period of relative normality.


Luck has certainly played a role in my story, primarily in my luck at having a switched on GP who referred me after just one visit, obviously seeing symptoms that I did not.


We just need to keep kicking the thing when it raises it's ugly head, a system which has worked well for some people for quite a prolonged period of time.


Hope you both really enjoy the summer and your gremlin stays silent.


Steve

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  • 2 months later...

Well here we go on the roller coaster yet again. Trevor was supposed to get a scan 1st week in August, we hadn't heard any thing by the 18th August so I rang consultant's secretary and she informed me the request hadn't been put in until the previous Friday. he got the date for the scan, 2nd September, so I rang the secretary again to arrange an appointment to see the consultant, she said all the clinics were busy,so she didn't know when we would get an appointment, I also said the professor wanted Trevor's CA19.9 markers before the appointment, she said she would have to speak to the professor and get back to me. Trevor's tumour markers had risen from 220 on 5th May to 846 on 30th June, that much we knew already.

We then received a date, 8th September, to see the consultant and a copy of a letter sent to our GP asking them to do a blood test for the CA19.9 markers and for the results to be faxed to the secretary before the appointment.

We went for the appointment last Monday to find the tumour markers had risen to 7,675 there is now a third tumour in the liver and the other two,which had shrunk by 50% at the end of his last treatment, have now grown by 200%, also there are nodules in the pancreatic bed. We are so disappointed that we didn't get the scan when we should have done as waiting an extra 4-5 weeks won't have helped.

They managed to get his Picc line fitted on Thursday, on the 5th attempt, so he can start back on the furry fox tomorrow, I feel as though the professor felt a bit guilty at the delay too, so he got things moving.

Trevor is absolutely devastated, he is not handling it too well, and is very down,our son daughter in law and 6 year old granddaughter came for the weekend, I thought it would help take his mind off things but he has been very grumpy and miserable. I keep reminding him he was really ok last time but nothing seems to be helping. His is still well and eating ok, in fact he now weighs 13 stone 3 lbs, from 11 stone 1 lb at his lowest, he is quite tired though and doesn't seem to have as much energy as he did. I have been in touch with the Diabetic nurse specialist regarding getting him back on insulin, as his blood sugar rose dramatically the last time he was on treatment, she said ring his figures through on Tuesday am, and to give him a couple of units if it goes up straight away, so fingers crossed I have everything covered. feeling very down too and frustrated!!! bloody bloody sneaky rotten disease!! please all of you take care sandrax

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Sandra, so sorry to hear about your set back and delays. It just makes you wonder that if he didn't have you to chase if it would have gone on even longer. I know for a few on this site there seems to be good prompt care, but for far too many of us, it seems like the majority there are just unacceptable delays. I hope all goes well for

Trevor tomorrow and he overcomes this, as he did before. Sending you both every best wish. Fiona X

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Dear Sandra,

I feel so frustrated for you, why can't people just do their jobs properly in the first place, do they not see it will save time and money in the long run?

I am not surprised Trevor is irritable, he has already been through so much and it is all so tough physically and mentally. Hopefully once he has got one under his belt he will feel better.

We are all on the rollercoaster with you Sandra, it just proberly feels as if you are sitting in the front, really scary carriage at the moment, but at least we can all scream together!

Lots of love,

Nikki

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Dear Sandra,

I am so sorry to hear about the hard time you are going through. I am too so frustrated, why people cannot do their job properly. Why did you have to wait so long, why this delay? I really don't understand. People with cancer should be treated quickly and should not wait so long for scans and appointments. I am not surprised that Trevor is grumpy and miserable, I would feel the same. I hope that things now will happen quickly and properly.

I am thinking of you a lot!

Lots of love,

Susanna x

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Really feel for you Sandra and especially Trevor. It must be SO hard to have this cancer and then be thwarted by delays to boot! Waiting to get results is the the worst and I can well understand why Trevor is grumpy. When Ray got the news the fox wasn't working, even though he was doing relatively well otherwise, it really set him back mentally and emotionally. Its so bloody hard.


I hope the treatment does its job and things get better for Trevor.


Julia x

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Sorry to read that Sandra :( hits you hard when you're not expecting it, we get another scan tomorrow and it's all I can think about. I really hope he responds well to the treatment, and that grumpiness is so so normal in our house when it's time for the drs or waiting for a result ....or anything cancer related so I know how you're feeling there x hope things smooth out a soon for you both Rob x

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I'm really sorry to hear this. Am I right in thinking he has had no treatment for a while? If so there is hope that it will knock it back again which is different from when the treatment just stops working. But every setback feels like a punch to the stomach. I do hope he responds quickly. And good luck for Carl's scan tomorrow, Rob. x

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Thanks so much for your replies it really does help xx Yes Didge last treatment was 5th May, but it has come back so fast and tumours grown so quickly, its scary.

We have been at the hospital since 9.30 am for bloods, didn't get out until 5 20pm, all the staff have been wonderful as usual, they stopped the Irinotecan for a while as even though Trevor had had the injection to stop them, he still had severe cramps in his tummy.

They also slowed the Fluorouracil and the Oxaliplatin, which they give together, down over 3 hours instead of the usual 2 to see if it helps with the Neuropathy as he suffers quite badly with that.

Will be thinking of you and Carl tomorrow Rob, lets hope you get more good news.

Trevor is out cutting his grass, so he is obviously feeling ok at the moment so fingers crossed......thanks again for the support take care sandrax

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  • 3 weeks later...

Trevor went for his Furry fox on Monday as usual, but he had seemed a bit unwell over the weekend, and I had this feeling that they wouldn't give him the treatment, but his bloods came back fine. They gave him the anti sickness tablet and the injection to stop the stomach cramps, but the cramps started immediately, they slowed the Fluorouracil and Oxaliplatin down again to over 3 hours, it seemed to be running even slower. Trevor was getting more uncomfortable. then he had a bout of diarreah, and started to feel sick, he was but only brought up saliva. The doctor came out as he was feeling quite unwell, in the meantime they gave him an infusion of anti sickness through his picc line, the Dr didn't realise he was having cramps and apologised saying he shouldn't have been given that anti sickness as it would make the cramps worse. They then gave him an injection of Buscopan to stop the cramps, but that counteracted the anti sickness, so they gave him another different one via his line, then connected up his pump. At this stage I think his body had enough and started to shake so badly the bed head was banging against the wall. The poor Dr should have gone off duty at 5pm it was at least 6-30pm by the time she finally got him sorted and the treatment room closes at 6pm, but the nurse looking after us insisted on taking us down to the ward instead of us having to wait for a porter. So he was admitted overnight, he was totally out of it, his temperature dropped to 35, he had another episode of sickness and diarreah, before I left him, at about 8pm but then he slept though and his temperature returned to normal.

He rang me at 10am the following morning to say he was ready to come home, he says his tummy and chest are still sore but he is eating ok not as well as usual, but not too badly.

We are seeing the consultant oncologist on Monday a week earlier that we should as Trevor has a swelling in the back of his neck, which the doctor we saw on Monday thinks needs checking out, so that's another worry, but at least he is feeling better, sorry for rabbiting on, take care all, sandrax

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Hello Sandra,


Ohh, that is just so awful. Even reading it was shocking, I cannot imagine how Trevor and you felt. You've gone through so hard times recently. I really hope that Trevor will feel better soon and the swelling in the back of his neck is nothing serious.

Thinking of you!

Susanna xxx

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What an horrendous day for Trevor! He must have been cream crackered by the effects of all to-ing and fro-ing with his medication. Nice to hear the staff pulled the stops out and that they were able to admit him to continue monitoring. I likewise hope the neck issue turns out to be something harmless.


Take care both!


Steve

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So sorry I am late to reply.


Poor Trevor, what a terrible day for him. I hope he is back home, to the comfort of his own things.

Sorry to read he has been depressed too, it's horrible to see our loved ones like that isn't it? Despite the last few days, had his mood picked up any?


Again, sorry for late reply.


Leila xxx

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  • 2 weeks later...

We saw the oncologist's registrar on Monday the 6th, about the lump on Trevor's neck and the reactions he had had to the Folfirinox the previous Monday. She examined the lump, said she didn't know what it was, and then suggested that they would probably scan his head as well when they did the next scan. She said they would reduce the Irinotecan, for his next treatment and ensure he had the atropine 30 minutes before treatment started. I think she could see Trevor was still very worried about his lump, so she asked the professor to pop in. He breezed in, examined the lump. said no way was it cancer related, it was a fatty lump he had had for years, and as he has lost a bit of weight it had become more prominent, and T feeling it all the time had made it sore. While he was there I jumped straight in, and explained about the reactions. No reduction in the Iriotecan necessary, just double the dose of Atropine, and add some steroid to counteract the sickness, shook hands and out he breezed again.

Trevor has not felt well all the 2 weeks, he has been very tired, and has had pains in his tummy, not felt hungry even though he has eaten quite well, just not been his usual self at all.

So Monday off we go to the unit, meet the unit manager in the foyer, she tells me to make sure Trevor gets his injection 30 mins before treatment, and that he gets a double dose, he has his bloods, we go for a coffee, go back to the unit to be told his Neutrophils are too low for treatment, and to come back next week. I remembered reading on here that this can happen, Steve's post in particular reassuring someone else, it is just so strange that Trevor sailed through the first 6, and yet he has these problems this time. Its for the best because he is still so tired, but we had the scan booked for the week after 4th treatment, and appointment to see professor for results, so they will have to be changed, so it's fingers crossed for Monday, take care sandrax

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Crossing my fingers for you Sandra, you have certainly had a tough time recently. I am glad to hear the professor was so certain that the lump was nothing to be concerned about, but one less thing to worry about doesn't really make much difference when you have a dozen other things that are stressing you out, does it?

Love,

Nikki

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Hi Sandra, just checked my notes and my bloods were fine for the first 5 cycles, but cycle 6 was delayed for a week as my Neutrophils were low. They were fine a week later and have been ever since, with cycle 11 starting tomorrow. I gather this is not at all unusual.


Steve

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  • 3 weeks later...

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