A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Wed May 13, 2015 10:54 pm

Thanks again for your comments and support. I had wondered about breaking my thread down into sub-sections to make it more manageable, but for reasons I do not fully understand I have been allowed to fight this thing off for a long time and thought it might helpful to leave it as it is. This makes my initial prognosis of 6 months so far from the mark that people can see how wrong the experts can sometimes be. I will continue with updates for as long as I can but am at the present optimistic for the foreseeable future!

Steve
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Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: So far so good!

Postby Didge » Thu May 14, 2015 8:38 am

It is helpful and long may it continue! x

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: So far so good!

Postby J_T » Mon May 18, 2015 4:48 pm

You have reason to be optimistic Steve.

Hope you are recovered/recovering from Nanoknife.

Best wishes.

Julia x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Tue May 19, 2015 9:12 am

Just a quick post regarding PICC Line flushing. This has become quite difficult, with appointments simply not happening and occasionally not all supplies available. As a result, Margaret has now been given permission (and training) to do all future flushes herself. We have agreed that as soon as we hit any problems, we will immediately contact the Chemo Unit. Another result for us!

Steve
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Fifi

Re: So far so good!

Postby Fifi » Tue May 19, 2015 10:41 am

Hi Steve,

Pleased Margaret is able to do that for you. I bet you find that she does it a lot better than what you are used to. Dad always felt better with me doing it.
Just a little tip ( if you haven't already been told ), if the flush is impossible or hard to push, turn your head both ways and stretch your chin over your shoulder. Sometimes the veins get clogged and that will unclog them, and the flush with then go with ease. Just in case Margaret panics if it ever happens. I did the first time it happened with us.

Leila xxx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Tue May 19, 2015 3:07 pm

Thanks Leila, hope you are doing OK.

Steve
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SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: So far so good!

Postby SusannaUK » Wed May 20, 2015 2:57 pm

Dear Steve,

I've just read that you had the NanoKnife procedure. I haven't been on the forum for a long time. Wow, so good news that you are doing so well! You are amazing, such an inspiration to all of us here. You and Margaret a very good team. It is much better that Margaret will do your PICC line flushing, it gives you more freedom. I did it for my husband and he always said to me that I was doing it much better than the nurses. What Leila just said that is a good advice in case it's hard to push, we were told the same and it happened a few times. First time I panicked but it was ok after.
Keep going, wonderful news!
Susanna x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Wed Jun 10, 2015 1:55 pm

Now on cycle 23 of 'The Fox'. So far ok and the Tumour Marker has dropped from 1328 to 1188. Not sure if it is down to the increased frequency of chemo and/or NanoKnife, but the important thing is that it is going down. I have a CT scan in around 3 weeks to see what effect the NanoKnife has had, so fingers crossed!

Steve
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kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: So far so good!

Postby kittycat » Wed Jun 10, 2015 6:28 pm

Hi Steve, it's good to hear you're doing so well, you're an inspiration to us all. My husband is having Nanoknife on the 1st July, is there anything else he should know that we may not have already been told? He has had a really rough ride up to now, but hopefully things are picking up and yesterday he had his third Folfironox and seems to be doing better than the first two, so fingers crossed.

Sue

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: So far so good!

Postby sandraW » Wed Jun 10, 2015 7:46 pm

Hi Steve,
Great news keep on going and lets hope the markers keep on going down take care love sandrax x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Thu Jun 11, 2015 6:04 am

Thanks for the comments

Sue, the team at the Hospital will look after you totally. It was not an unpleasant experience at all, other than some discomfort in the evening after the procedure which was managed well by the very attentive Nursing staff. I felt fully recovered by the time I was discharged the morning after the procedure. There is even a full Sky Sport and Movies selection on the TV, though not enough time to fully take advantage. Professor and the Anethtestist both visited me before the procedure and reassured me. They may tease you with the evening dinner menu, but after selecting the Lamb, I was told that I could only have a cold meal! It was however a very nice Smoked Salmon sandwich.

My Folfirinox likewise improved after each session, especially in the early ones.

Good luck!

Steve
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LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: So far so good!

Postby LMD » Thu Jun 11, 2015 10:32 pm

Hello Steve
So good to read your markers are going down and that the Nanoknife went well. You're an inspiration, Steve!
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jules 2015
Posts: 55
Joined: Mon Sep 23, 2013 10:20 pm

Re: So far so good!

Postby jules 2015 » Sun Jun 14, 2015 12:50 am

hi Steve
Good to hear you are still getting the positive results, you are an inspiration and long may it continue.
Julie x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Wed Jul 01, 2015 3:20 pm

Apologies all round for my lack of activity here. Now I am back on 2 weekly Folfirinox (still minus Exoliplatin) I find myself very fatigued for the whole cycle. I am meeting my Oncologist on 9th, so will discuss the possibility of going back onto a 3 weekly regime. I had a CT scan on Monday and will also discuss next week with my Oncologist. I hope to see something positive from the scan that we can attribute to my Nanoknife on 6th May. Otherwise, things seem to be going OK and I certainly hope to have a bit more energy for our weekend in Paris on 10th July (I have a 3 week cycle to allow for this).

Steve

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EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: So far so good!

Postby EmmaR » Wed Jul 01, 2015 7:27 pm

Hi Steve ,
Hope they can sort out you feeling of fatigue you and Margaret enjoy gay paree ! Stay well ,stay positive and stay happy .
Emma x