Trevor's Story

[sandraW]

Thanks for that Jayne, hope you are doing ok xx Trevor had his treatment on Monday 20th, in fact like you Steve the neuts were back up to 6.1 without treatment, but the Professor decided it would be better to give him just 3 of the injections to help his bone marrow recover, to make sure he could have the next treatment on time. The doubled injection of Atropine did work it stopped the cramps, but after about an hour of the double infusion of Oxalyplatin and Fluorouracil he had another reaction, sweating profusely but without a temperature, and feeling generally unwell. They stopped the treatment, put up a flush, and called the doctor.and after a break of about three quarters of an hour, they started it up again, but slowed it down even more, he was having it slowed down over 3 hours from the normal 2. Thank's Steve by the way the 3 hour does help the neuropathy a great deal. So it was then slowed down to over 6-8 hours, so we at the unit until 6.40pm, from 8am for bloods, but it worked, and that's all that matters,we left and went to Macdonalds on the way home as he was starving!! He has still not been too well over the last 2 weeks very tired, but has picked up now, and its treatment again tomorrow, then scan on 13/11 and results on 17/11, then we will know wether it has worked again and if he can carry on with treatment. We are going away for acouple of nights for our 46th wedding anniversary on the 16th I am hoping it might take our minds off the impending results. love to everyone take care sandrax

[SusannaUK]

Hi Sandra,

It's good to hear from you. I hope the scan result will show that the treatment works for Trevor and he can carry on with it.

My husband had the same reaction on Oxalyplatin at the first 3 chemo. He was sweating so much, his clothes and hair got completely wet and he said he felt like he was in the Caribbean. He didn't have temperature either.

Congratulations on your anniversary! I hope you will enjoy your little holiday and it will take your minds off these medical things.

Take care,

Susanna x

[Bowie]

Dear Sandra, I hope Trevor gets a good result. Many congratulations on 46 years, fantastic. We're at 34, the longest out of all our friends and family, most of them are on their second or third marriage. We feel lucky and hope to celebrate loads more. Hope you have a good time. Fiona X

[jay]

Congratulations on your wedding anniversary Sandra, and sending you loads of luck for the 17 th.

Im okayish, seems to be getting harder rather than easier but Jessica keeps me going

love Jayne

x

[nikkis]

46 years, that's wonderful Sandra, hope to manage to get away and enjoy it,

Nikki

[J_T]

Congratulations on your anniversary Sandra and Trevor!

Good luck for the results too.

Julia x

[Sueoliver]

I hope you have a wonderful Wedding Anniversary...46 years WOW ! Love Sue x

[Guest]

Hope you have a wonderful anniversary and that Trevor is feeling better for it. I hope you both have such a lovely time. Hope you can both try and forget, and just enjoy each other.

Leila xx

[sandraW]

Thanks everyone, we are looking forward to our break.

Even though it was Trevor's "bad weekend" we went to a Macmillan fundraising function last night, we stayed until 10.30pm and even had a dance! while we were there we were invited to late Sunday lunch today, so we were out again. Its good to see him feeling so much better, so hopefully we should have a nice couple of days, before the dreaded scan results on Monday

take care sandrax

[sandraW]

Well the scan results were neither good nor bad really, tumours had shrunk slightly, but tumour markers were in the 7,000's and hadn't come down after 4 more sessions of Folfirinox, I persuaded the Professor to let Trevor have a 5th treatment before the Oxaliplatin was removed, After 2 more treatments of leucovorin, 5-fluorouracil and irinotecan we saw the professor again yesterday. He informed us Trevor's liver count is rising, not falling as it has done before when he has been on treatment, he allowed treatment, but Trevor has to have a scan before we get to know what happens next.

The thing that was so worrying was the Professor's whole demeanour, he is usually so upbeat, but he was very subdued, checked T's tummy, said everything felt ok, and even arranged an ECG as T had been feeling a bit light headed, and dizzy. It came back ok, and because, he had the ECG he had his treatment in a bed so he slept most of the afternoon away, while I worried which I know is a pointless exercise but couldn't stop myself.

Trevor is still well, not as well as he was but still doesn't complain of pain, he has lost a stone in weight since he restarted treatment in mid September, but still has a good appetite, again not as good as it was but still good.

So now we wait for a scan date, when we get that we ring the professor's secretary to make an appointment to see him, so hopefully it won't be too long, not the best start for the New Year but it could be a lot worse.

Best Wishes to you all for the New Year love sandrax XX

[RLF]

Good luck on getting a speedy scan, I hope the wait isn't too long for your both. I think a shrinking tumour on the scan is a good sign, markers are not always the best indicators and I read they can go up sometimes when cells are dieing and their tissue is being released.

It's great that he's well and has no pain, he's lucky to have you looking after him! Also don't worry about the profs demeanour, people can be having an off day and you might be picking up on something that is totally unrelated to you.

Keep us updated.

Rob x

[nikkis]

Hi Lovely Sandra,

You are doing a grand job there, keeping on top of things, and as Rob says tumour shrinkage can only be a good thing. Paul's liver levels have been high for most of this year. Every now and then a new nurse wil say they are a worry and put me into a panic, but then when I speak to the senior sister or his consultant they say they are not worried, they say they are abnormally high due to the chemo, but they are not something they concerned about.

Best wishes for the New Year to you and Trevor too.

Love,

Nikki

[Guest]

Hi Sandra,

Good news on the shrinkage. That is the main thing. I understand that it is upsetting when the tumour markers show no change, or rise, as I get upset about that myself. In comparison though, it is the tumour shrinkage that means the most, and that should be focused on. How does Trevor feel about it? I hope he isn't too down, and that you can help him feel positive.

All the best Sandra.

Leila xxx

[sandraW]

We were lucky and got an early scan on Tuesday 6th as the scanner had broken down, but was repaired quickly so they rang round offering cancellations, rang the professor's secretary straight away, she said there was no hope for an appointment for the 12th, but then rang to say there was one after all.

Saw the "man" on Monday, to be told that there was no point in carrying on with the present treatment Folfirinox minus the Oxaliplatin, as is wasn't working, but... tumours hadn't grown much but we had only had the last scan seven weeks earlier. He then suggested we should try gemcitabine, I know that's the last resort so I asked, notice its me doing the asking, if there was nothing else we could try first. The professor is worried about Trevor's neuropathy, so after giving him a thorough examination, and explaining that his score is 2 already I think the worst is 4, he will allow him to have 6 courses of Folfox, monitoring him very closely regarding the neuropathy after every 2 treatments,his tumour markers have not come down, didn't ask the numbers as didn't want to know, but the prof says Trevor's do shown a good insight into what's happening with him regarding tumour growth.

So this week has been a week off in regards to treatment, in himself Trevor is remarkably well, he is eating well and has minimum discomfort,for which I am truly thankful,we have obviously been very down, but are starting to pick ourselves back up again ready for the next battle, but I do worry about the neuropathy, he couldn't cope if he needed a wheelchair.

One more point, we are so lucky to have our unit, last Thursday Trevor woke with a temp of 38.5, I rang the unit, they said to come straight in,there was a bed waiting in the day unit, within 5 minutes one of the nurses came to take bloods followed 15 minutes later by the Dr, within another 15 mins he was having intravenous antibiotics, and a bottle of Paracetamol. Dr came back to see him a couple of hours later to say his bloods were fine, and that someone else would come to see after a further couple of hours of monitoring, they did and let him come home, with antibiotics at about 3.30pm, and people knock our wonderful NHS. love to all take care sandrax

[Didge]

I now see your update, Sandra! We were on gemcitabine first and Rob couldn't tolerate it, got so many infections, at one stage talking about possible amputation for cellulitis. Although he did not have the immune boosting injections at that point as it was 'only' adjuvant. Glad to hear Trevor is feeling pretty good apart from the neuropathy though. xxx

[J_T]

Great to hear the update Sandra and that Trevor is relatively well. Hope the Folfox does it work.

Best wishes to you both.

Julia x

[nikkis]

Hi Sandra,

Just wanted to say a quick hello, and I am so glad to hear you are getting such excellent care. We are having our own fun and games at the moment, I will update when I get a chance.

Lots of love,

Nikki

[PCUK Nurse Jeni]

Sandra,

That unit is amazing! This is truly brilliant treatment - yes, you are lucky indeed to have this and the efficiency in which they dealt with Trevor.

Good to hear that Trevor is well in himself right now - keep on doing what you are doing.

Take care,

Jeni, Support Team.

[Ant11]

Hi Sandra

I have been following your story and just wanted to see how Trevor is doing. Hard as it may be try make time for yourself too. Sending hugs and strength your way. Annette x

[Cathy]

Hi Sandra

Glad Trevor is feeling pretty good.

Just for info, when Jonathan was to go back onto treatment (he'd been on folfironox) he was offered gemcitabine as a second line but the Onc agreed (after I'd asked) to offer Gemcap instead. Saying that, I believe that gemcitabine can be very effective for some people on its own.

Keep on keeping on

Cathy xx

[Guest]

Hi Sandra.

Dad had Gemcitibine first ( with the trial/placebo). He tolerated it really well until his last cycle. He was 2 stone lighter then as well. His scans always came back good, apart from his last one obviously. I know it's horrible because it's a "last resort" chemo, but not necessarily it isn't. Trevor could tolerate it brilliantly and it could work so well. I do know that this is easier said. From what I've read of Trevor, he's one stubborn tough cookie, and that's what we need right?

Leila xx

[sandraW]

Hi Leila

Stubborn yes well that's one word for it lol, I think it's after that, there is nothing else that just frightens the life out of me, but I do agree, people have done well on it, thanks for that sandrax xx

[Sueoliver]

Hi Sandra I noticed you wrote that Trevor was hard of hearing since treatment! My mum has gone so deaf! Do you think it could be the chemo? She is getting worse and has the television on so loud it gives me a headache! Sue x

[Guest]

Sue, yes this is what Sandra said to me about Dad. I call him up, and all I can hear is the TV. I really think Sandra is right with this.

I see what you mean Sandra. I often think about further down the line, and I just cannot imagine the feelings. People tell me to think about the here and now. I do, but I don't and I picture the worst things sometimes, and I just hate myself for it. You are wonderful Sandra, and Trevor is wonderful. I want to read again, that Trevor has gone down to his shed to get some piece and quiet. That's how we want them isn't it?

Leila xx

[sandraW]

Hi there ladies,

Sue Trevor is on different combinations of the folforinox regime, as your Mum is. I think? I read somewhere that it did effect some people's hearing, but not really sure if I imagined it or not, but Trevor is definitely getting more hard of hearing, if it is effecting your Mum too it seems it well might. xx

Leila, thanks for being so kind but i think we all just do the very best we can for our loved ones, today it was the garden not the shed, he took himself off too, he did some tiding up and weeding, it was really cold but he was well wrapped up. Came in complaining he had only been out there a couple of hours and he was nick nacked, sat down and went to sleep for an hour, so nothing changes, are you seeing your Dad this weekend? sandrax xx