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So far so good!


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Had a good meeting with my Oncologist this morning. 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.


Whilst a reduction in size of the tumour would have been great, I am confident that today's results really are good news. The Oncologist even spoke of reviewing surgical options after the radiotherapy, but of course no guarantees. My only real fear was that I would be refused radiotherapy for whatever reason, but that has not happened.


Our favorite word 'hope' seems to be the order of the day.


Thanks for all the best wishes for today.


Take care all



Steve

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Marvellous Steve! All sounding good and great that you can go forward with the radiotherapy. SO pleased for you!


It's great that the tone of your meeting was positive too.


Kate

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PCUK Nurse Jeni

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.

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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

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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

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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

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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

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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

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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

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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

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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

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PCUK Nurse Dianne

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

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  • 2 weeks later...

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

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Slewis7313

So the chemo sessions are finished for now. The last one was not the best as the veins were being particularly illusive! We had success on the fourth attempt. Whilst not that unusual, I found myself really struggling with the session and was glad that one of the regulars Angela kept me occupied with the usual chats about food and dog walking on the beach. Good news however was that my tumour marker has dropped again to 12. I have now also had my second opinion from Heidelberg (they have copies of my latest scans) and they agree that I need to go through radiochemotherapy as the tumour would be very difficult to completely remove at this time. The villa in Spain is therefore booked and something we are all really looking forward to!


Take care all


Steve

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Fantastic news Steve about the tumour markers ( not veins! ) and reassuring that everyone is agreeing on your treatment. You deserve a well earned spanish break. We are also going to spain in a couple of weeks and managed to get the Gp to prescribe Ultrasun for Bob to hopefully prevent him turning a lovely shade of red. Whoever suggested Ultrasun on prescription I thank you xx

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That was me! I'm off to the GP next week to get some for James (my youngest).

Glad you got hold of some - have a fab holiday all of you!


Kate

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  • 4 weeks later...
Slewis7313

I never actually met the surgeon who decided my tumour was inoperable, although in the meantime Heidelberg have confirmed they agree with the diagnosis. However, i also have a hernia which I wish to have fixed as soon as possible to allow me to be a little more active again. The NHS cannot perform the operation during my treatment break as it is non-urgent, so I have used my Company private medical insurance to try and have it done through them. I now have an appointment next week to discuss it with a surgeon in a private hospital and the surgeon in question is the guy who made the original diagnosis! It will be interesting to see what (if anything) he has to say about my Pancreatic Cancer whilst discussing the hernia issue.

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