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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PCUK Nurse Jeni
Posts: 1070
Joined: Mon Jun 14, 2010 1:30 pm

Re: So far so good!

Postby PCUK Nurse Jeni » Fri Apr 05, 2013 11:42 am

Yes, Steve, as discussed by email, but I will post it so as others are aware. but, in oncology, what we class as "stable disease" is a good outcome, and a positive outcome.

Especially when you are dealing with a cancer such as pancreatic, which can sometimes "take its time" responding to treatment, or can, equally, not respond.

Yes, to have a partial response, or more, would have been better, but the main thing is that the disease is under control, and medical professionals do not just "treat scans", but look at the person as a whole. So, yes, the tumour markers improving, the person feeling better, weight improving, appetite improving, energy levels better, pain decreasing etc.... - these are all positive signs.

Keep up hope, and lets believe for good results from the radiotherapy for Steve.

Take care everyone, and have a good weekend,

Jeni.

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: So far so good!

Postby DRAD3 » Fri Apr 05, 2013 8:10 pm

Such good news, Steve. As Jeni says, lots of positive signs. HOPE definitely the theme lately - wonderful!
Keep going, we are all right behind you.
Deb
x

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: So far so good!

Postby LindaH » Sat Apr 06, 2013 3:50 pm

Quote from Steve's post.....The CT scan shows no reduction in size of 'the mass', but the tumour marker reduction in conjunction with other improved symptoms indicate something good is going on in there. The tone of the meeting was very positive and she confirmed there was no spread or increase in size. I am therefore definitely set to start radiotherapy in 4 weeks and have this afternoon been measured up (CT scan with tattoos) for the treatment.

This is excellent news Steve. No reduction, but positive signs showing something is going on and the best of all ....NO spread and NO size increase. It's always difficult to find positives when you hear people speak of this being one of the 'worst' cancers, so we have to go along with how our consultants feel about the treatment and how it has progressed. Our consultants and their attitudes are all we have to go on. Obviously, what we want is for them to say it can be obliterated completely, but until that day, we go with the flow.

Right, now come on Steve, you're my Mentor and I want to follow your pathway of postives.

BTW, did you go to the Mill Stad to watch my favourite Welsh Boys win the 6 Nations? The only time I managed to visit the Mill Stad was to see U2, but my dream is to see Wales play....ideally New Zealand and win...

Have good weekend everyone (they go far too quickly)

Linda x

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

Re: So far so good!

Postby Slewis7313 » Sun Apr 07, 2013 8:36 am

Thanks Linda, we were indeed lucky enough to come away from the meeting in high spirits. We we a little surprised to be honest that the mass had not reduced because of the other positive indicators, but the consensus clearly indicates that no increase in size is a real result! I certainly hope you see a bit more of the positives that I am experiencing some time soon. My oncologist is a lovely young lady who is focused on my needs, sympathetic, listens and totally supports Us. What I had not mentioned from the meeting is that after discussing the blood clot picked up by the CT scan several weeks ago, I am now on the daily blood thinning jabs for 6 months....... My oncologist was most apologetic when she told me this, but they are not a problem and have already become part of the routine.

My fourth cycle of chemo starts on Tuesday, with radiotherapy 4 weeks later in conjunction with Cepecitabine (no more IV chemo for a while). The veins will be pleased!

Sadly, I did not make it to the Millenium Stadium for the rugby but did enjoy all the matches either in the White Rose here in the Mumbles or the Lyceum Tavern in Newport. The last match caused some riotous scenes in the Tavern! I did however make it to the Millenium Stadium for the 'head to head' last weekend and saw my home team (Newport Gewnt Dragons) lose (again) to the Scarlets........ It was still an excellent day out.


You look after yourself Linda and thanks for the support


Take care all

Steve

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

Re: So far so good!

Postby Slewis7313 » Wed Apr 10, 2013 9:08 am

Just a quick update....... When I arrived for my chemo on Tuesday, I had the startings of a cold and a temperature of 37.6 degrees so they have deferred my chemo until next week just in case. My tumour marker has however now fallen from 62 in mid March to 20!

Take care

Steve

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: So far so good!

Postby LindaH » Wed Apr 10, 2013 9:52 am

Slewis7313 wrote :
> Just a quick update....... When I arrived for my chemo on Tuesday, I had
> the startings of a cold and a temperature of 37.6 degrees so they have
> deferred my chemo until next week just in case. My tumour marker has
> however now fallen from 62 in mid March to 20!
>
> Take care
>
> Steve


Well Steve, that sounds really good....about your marker, but I'm going to have to ask...what does it mean that it's fallen from 62 to 20? Please can you explain it to me?

Sorry about your cold, but hope you are better soon.

I go on Friday for more punishment and for only the second time on my own, because my daughter has been with me every other time. I'm just hoping it doesn't take as long to get over it has it's been doing, which is the best part of a week....groan.

Linda

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

Re: So far so good!

Postby Slewis7313 » Wed Apr 10, 2013 10:10 am

Hi Linda, hope things are improving with your treatment and side effects. My understanding of the tumour marker is that when taken In isolation is not always a reliable indicator, but if there is a downward trend, this will be used in conjunction with other factors to give a feel for how the cancer is reacting to the treatment. I started off at 249 at diagnosis, followed by 62 in March and 20 this week. I have been informed that this is good news when my overall condition is taken into account. I dare say the lovely ladies at PCUK have more factual information on this subject.


Please look after yourself and stay in touch


Take care

Steve

PCUK Nurse Jeni
Posts: 1070
Joined: Mon Jun 14, 2010 1:30 pm

Re: So far so good!

Postby PCUK Nurse Jeni » Wed Apr 10, 2013 12:10 pm

Pretty spot on Steve!

Jeni.

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

High temperature after chemo

Postby Slewis7313 » Wed Apr 17, 2013 11:32 pm

Had a busy 24 hours..... I went for chemo yesterday and everything seemed fine. The nurse actually infused on the inside of my forearm for the first time as the veins are apparently larger and better to cope with the fast infusion... There was no discomfort at all during infusion. However, after several hours I started feeling lightheaded and shakey with a temperature of 38.5. My wife contacted the out-of-hours number on several a occasions, but we never received the call back so trundled off to A&E. To cut a long story short, I was referred to the Hospital where the cancer unit is and admitted. I very quickly had bloods, ECG, X-ray and finally got to bed at 02:00. More bloods this morning and though my temperature was still elevated (37.6), they had ruled out anything serious (Sepsis) and discharged me at 14:00. They would have kept me in another day, but as I live very near to the Hospital and agreed I would come in if anything changed for the worse, they allowed me to go home. Importantly, I saw a number of Doctors during the night, all of who stressed it is imperative that any high temperatures whilst on chemo must be dealt with immediately. I'm knackered and looking forward to a night in my own bed. The doctors are actively perusing the issues we had with the out-of-hours system and will report back to us. We have also been given the direct number for the local chemo ward just in case.

What an interesting life we lead!

Take care

Steve

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: So far so good!

Postby LindaH » Thu Apr 18, 2013 10:24 am

Oh crikey crumbs Steve, what a terrible 24 hours you've had.

I sincerely hope you get your much needed rest and take care my friend.

Linda

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: So far so good!

Postby KATB » Thu Apr 18, 2013 11:05 am

Yikes Steve!
Hope you get a more restful night tonight.

Dad started chemo yesterday and we have the digital thermometer at the ready!

Onwards and upwards Steve

Kate
x

PCUK Nurse Dianne
Posts: 285
Joined: Tue Aug 14, 2012 3:29 pm

Re: So far so good!

Postby PCUK Nurse Dianne » Thu Apr 18, 2013 12:02 pm

Thanks Steve,

Sorry to hear you were a bit poorly after your chemo, and thanks for sharing with other the importance of reporting the temperatures. In an ideal world, we would hope that patients are given a contact number for these queries, however we realise that out of hours many departments do not provide a service. Certainly as Steve has done, do seek help from A & E if any of you are in this situation, don't try to 'sit it out at home' if you are not sure. It is far easier to go to A & E and be sent home, than sit at home and find in the morning that treament would have been better if you presented at an earlier time frame. Great to hear that you many of you have thermometers at home, that is great.

Dianne
Support Team

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

Re: So far so good!

Postby Slewis7313 » Tue Apr 30, 2013 7:49 am

I now have more dates for the calendar..... Last of the current chemo sessions today (hurrah!!) and my radiotherapy starts next Tuesday for 6 weeks. I have discussed radiotherapy with a few people at Maggie's and am not expecting it to be too difficult. Fingers crossed as always! Next date after that relates to 2 weeks with the family on a beach in Spain in mid July.... Need to look at the insurance options, but it will not stop us going!

Take care

Steve

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

Re: So far so good!

Postby J_T » Tue Apr 30, 2013 9:10 am

All sounding good Steve! Good luck with the radio and have a FABULOUS holiday!

Julia

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: So far so good!

Postby KATB » Tue Apr 30, 2013 9:37 am

Steve that sounds fab. Glad you are also getting a holiday.

Kate
x