So far so good!

Hi Steve,

Sorry to hear the little blighter is as you say coming back to life. Fingers crossed you can nip it in the bud and it sounds like you have a plan in place. Although it's a different regime you managed the treatment really well last time round , fingers crossed that is the same pattern you will follow this time.

Sending lots of good wishes, keep up the positivity and my thoughts to your wife and family too !

Bee xx

Let's hope you respond at least as well as last time.

My best wishes that you do.

Mark

Hi Steve, my husband had 6 of a course of 12 5 FU, but his tumour markers rose from 246 after his operation, to 1,000 then to 1,990. they swapped him to Folfirinox , and after 4 treatments his markers are down to 1,054, he has his 6th treatment right after Easter, and although he has been and still is very tired, his other side effects have not been too bad, slight thinning of his hair, he didn't have too much anyway, no sickness or diarrhea, mouth not too sore, suffers mainly with tingly fingers when in, or touching anything cold. In fact because his blood sugar had been high they stopped the steroid

tablets he was given for 3 days after treatment, and then last session didn't even give

him the steroid intravenously before his treatment starts, so lets hope you are one of

the lucky ones take care sandrax

Thanks for the kind words of support which are really are a great 'pick me up'. Whilst not totally unexpected, it is all a bit of a shock to the system after 10 months without chemo and no real issues during that time. We were going to Cyprus on 19th May for a business/pleasure trip, but that has now been knocked on the head. We will however try and fit a short trip to somewhere in before treatment gets going. Bring on the Fox!

Thanks again all

Steve

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Hi Steve

I'm sorry to hear that the blighter is waking up a little. Ten months without chemo is great though and there isn't any reason why the folfironox won't zap the beggar.

You'll have read loads of stuff on this forum about Picc lines and side effects of folfironox so I won't repeat them again but I would definitely recommend getting someone (your wife?) to learn how to flush the line and disconnect the chemo bottle. As with us, when Jonathan felt so well, it gave us a huge amount of freedom.. The places we went to with a bottle of saline and a syringe!!

Very best of luck

Cathy xx

Thanks Cathy, Margaret found your suggestions very useful and will ensure she gets some training when the line is fitted.

Hope you are doing OK yourself

Steve

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Hi Steve, I can only echo all the other messages of support. The 'Fox' is not to be tangled with and will escort your invader to the exit I'm sure! Don your shiniest armour and let battle commence!

Julia x

Thanks again for the great support. A bit of good news as I have managed to rebook the Cyprus trip for 30th April so we can get away before the treatment begins.

Steve

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Thats great news about the holiday Steve, funny how different we all are, Cathy said get your wife to learn how to disconnect the pump/line flush, which I was quite happy to do, the highlight of my day is giving him his fragmin injection lol. But Trevor found going to the hospital treatment room to get his done was just a bit of support, as we get absolutely none from our GP practice. There have only been 2 occasions when he has been unwell, but the doctors where there in 5 minutes extra bloods taken and antibiotics/fragmin given immediately which meant he was able to have his next treatment on time. I suppose it depends on how far you have to travel for us its only a half hour journey, and we have good friends that live nearby so we usually visit them whilst we are there. Hope you enjoy your holiday, take care sandrax

Thanks Sandra. Of the many factors in my favour, one is that I live 5 minutes away from the Hospital and also have Maggies there. It certainly makes things easier as so many people I meet travel 1- 2 hours or even more for treatment.

Steve

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FABULOUS news about Cyprus Steve. Hope you all have a wonderful time. Time to recharge the batteries I think!

Julia x

So sorry to hear about your tumour markers Steve but sounds like you have a good plan. I am about to have my 14th cycle of Folfirinox and I do think if you are fit and well, it is a good one to go for. Sounds like you tolerate the chemo well so fingers crossed it all goes positively and you can get the markers down again. So glad you have a trip to Cyprus coming up. We managed to get to the Isle of Wight and Dorset during the Easter break - not quite sunnier climes but lovely to be away with the family. Enjoy your trip and stay strong. We are all behind you!

Ah Cyprus in spring. How lovely!!

Steve, we had the DNs visit to do the flushing and disconnection so just asked the nurse to show me what to do. Very straight forward and, if you ever did want to be away, or go out, the day it is due to be done then it is handy not needing to wait for a visit. We took his flush stuff to Corfu for 2 weeks last year.

Oh, and definitely recommend Dry Pro Picc line cover if you ever wanted to swim.

I'm ok Steve I guess. Have decided to try make myself busy by helping friends this weekend. Have just been helping a good friend of Jonathan's erect a greenhouse... So, good exercise with the added advantage of some very good, funny company.

Ps... Think I might be seeing you soon?

Cathy xxXxx

Thanks again Cathy, are you at the workshop on Wednesday?

Steve

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Hi Steve

Yes, that's the plan. I've taken the day off work.

I'll be the one with a telegraph under my arm and a carnation in my lapel

Cathy xxxx

I like it! I will be the one with the burnt head.......it has been sunny (but cold) down on the South Wales Riviera! My Company actually dictates that every employee does one day in support of a charity every year (it is a mandatory objective), so I don't need to take any leave. The company is totally committed to Corporate Social Responsibility, which reflects in the amazing support I have received from them on my journey.

See you Wednesday.

Steve

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I will expect all the goss afterwards!

x

Hi Steve

This sounds like an odd question but if you are a medium size (check out Dry Pro website) I will bring along Jonathan's Picc line protector and you can have it (if you would like it? No offence if not). It would be lovely if you were able to use it, especially as you had both chatted on the live chat last year. Jonathan would definitely approve...

Let me know

Cathy xxxx

Thanks Cathy, that is a really kind offer. Margaret has measured my arm and medium is the closest size for me, so yes please!

Steve

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Sorry the cancer is raising it's ugly head. From what I have read, you seem to be in good hands. I hope you can slow this thing down again. Your team seem to be on the ball, so I don't see why you can't knock it down again.

Good luck Steve. x

Plan B seemed to be good to go, but I have just received a call offering me a cancellation to have the PICC fitted tomorrow, with chemo starting Thursday. I really want to get away with Margaret, but at the same time know the symptoms are returning and importantly, it does not appear (according to the CT scans) to have gone secondary yet. They are looking at dates after our planned trip, but if the delay is more than a few days then my gut is telling me to knock Cyprus on the head and get stuck into the treatment this week. I should have alternative dates within the hour, so fingers crossed (yet again!).

Steve

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My first thought? Cancel the holiday, take the treatment. I am sure your wife would rather you fight this, and then go on holiday. This beast moves too quickly to have a holiday.

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Thanks Fifi. I am unfortunately not at home this morning but have had a serious chat with Margaret on the phone and decided exactly what you suggest. Cyprus can wait, so chemo looks to be starting on Thursday!

Thanks again

Steve

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Great news. Without sounding negative in any way, if anything happened in the time you were away, Margaret would never forgive herself. PLUS, when you do get your holiday, it will be all the more special and memorable.

xx

Thanks again Fifi. The decision was a joint one although the final call is always mine, but we both agreed not to wait unneccesarilly. However, there is another twist in this story. The rush to move things forward was due to a cancellation throwing up the availabilty of an appointment to have the PICC line fitted which normally has a lead time of 2-3 weeks. We have agreed to have the PICC fitted tomorrow, but it transpires chemo sessions had not been confirmed and could not be booked to start for a week or so anyway. As a result, the compromise is that the line goes in tomorrow and the chemo starts the day after we return from Cyprus (7th).

A result!

Steve

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