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

Re: So far so good!

Postby DRAD3 » Wed Mar 20, 2013 7:00 pm

Hi Steve
Keeping everything crossed for you. Keep us posted won't you?
Take care
Deb

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

Re: So far so good!

Postby Slewis7313 » Thu Mar 21, 2013 6:46 am

Thanks Deb, I'll update the thread as soon as I have something back from the Hospital.

Steve

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

Not quite what was planned!

Postby Slewis7313 » Mon Mar 25, 2013 8:07 pm

Had the CT scan today, which was to review progress and prepare for radiotherapy. Apart from the elusive vein syndrome (for the dye) the scan was without event. However, the timing of the scan was very fortuitous as they discovered a small blood clot in one of my lungs. As a result there were more bloods and an ECG, but after spending most of the day in Hospital it was agreed I could go home after a blood thinnig jab to the tummy. I've been given a supply of the injections to do myself at home until I see my Oncologist next week. They were surprised that I had no symptoms (breathlessness, Pain etc.). I'm just glad it was picked up before it became worse. The staff throughout the hospital were absolutely fantastic today which made a big difference. What started off as a potential knock-back, turned out to be a productive (if rather long) day.

We just need to see what the Oncologist says next week!

A beer is in order!

Steve

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

Re: So far so good!

Postby LindaH » Tue Mar 26, 2013 9:06 am

Good luck with your Oncologist next week Steve, you must be longing to get the good results you need. Will radiotherapy all depend on whether your tumour has shrunk and has it to be a certain size before they will proceed?

My understanding of the radiotherapy was it will be this which will completely kill the tumour, but what happens then? Can they then operate to remove what is left? What will be your next step after radio?

I'm just longing to get the chemo over with at the minute, this last weekend has been one of the worst I've know. I went to see my GP yesterday - only for a check-up, but I couldn't talk to him properly because I couldn't stop crying and that's not me at all, I'm normally so strong, but I guess it's all part and parcel of the treatment.

I hope all goes well for you Steve. Your progress will give me all the hope I need to carry on so keep going my friend.

Linda x

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

Re: So far so good!

Postby Slewis7313 » Tue Mar 26, 2013 9:50 am

Hi Linda, the illness / chemo or something (probably a combination thereof) certainly gets to you some times quite unexpectedly. After the CT scan yesterday, I suddenly clammed up and my wife did not know what was up with me. Once I had recovered myself a bit, I told her that for reasons I could not explain, I felt that if I started to talk I was going to break down in tears in the waiting room........ 30 minutes later the feelings had gone!! This has happened in the past, but usually when walking the dog on Swansea beach where I have no spectators!!

My understanding for the scan is that as long as the tumour has not grown, the chemo is considered to have been successful. After that, if the associated tests are OK (primarily kidney function) the radiotherapy will go ahead. However, on paper the treatment is still classed as non-curative, but I am hoping that after the radiotherapy the surgical team will review with an open mind and possibly change their original decision. The problem still remains that the lesion is entangled with the major vein and artery which pass so close the the pancreas. I do not believe the radiotherapy kills the tumour, but simply assists with the shrinkage. There is a 2 months(ish) settling down period after the radiotherapy to allow the organs to recover form the rays, after which there is another CT scan before the MDT review again. Until that time, I cannot do any more to influence the outcome so am making the most of the period until then as I feel reasonably well. The test of how strong I am will perhaps be after the MDT get together. I am however going to get a second opinion as soon as I have the results from yesterday's scan and probably looking at the Heidelberg option if I get no joy here.

I wish you all the best with your situation and hope the sickness improves soon.

Take care

Steve

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

Re: So far so good!

Postby DRAD3 » Tue Mar 26, 2013 7:20 pm

Hi Steve - good news about picking up on the blood clot. My husband had the same problem (clot in the arm near the site of his PICC line) and also had to administer daily blood thinning (clexane) injections. Just some advice about that - vary the spot you deliver the injection as repeated injections into the same spot can make it very sore and bruised. Also make sure you review this with the doctor as we didn't and had continued with them for quite some time to find that it was only short term and this later affected his blood count. No-one had remembered to tell us to stop and it didn't occur to us to ask! It might be different in your case, but just suggest you check.
You and Linda are doing incredibly well and are understandably having moments when you feel overwhelmed by it all. I rarely saw my husband upset but I know he went off on his own, like you Steve. I was like Linda - would erupt at various times - I would completely lose control - its impossible to hold all that emotion in.
So proud of you both and how you keep each other going - right behind you.
Deb
x

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

Re: So far so good!

Postby Slewis7313 » Thu Apr 04, 2013 8:12 am

Well today is the day! 4 months since the first CT scan / diagnosis, 3 months of chemo and my review today with the Oncoligist of last week's CT scan. As my tumour is in the 'uncinate process' (what a name for a piece of anatomy!) it is the closest part of the pancreas to those damned blood vessels. My tumour marker has been dropping (last one was 62) and I feel better, so I hope for good news today. The big question is whether the thing has shrunk and if yes, does it show any signs of disentangling itself from the blood vessels. As long as the tumour has not grown in size, I will be put forward for radiotherapy and am already scheduled for various tests in preparation.

Watch this space!

I'll update later today.

Take care all

Steve

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

Re: So far so good!

Postby KATB » Thu Apr 04, 2013 9:18 am

Steve, I'll be thinking of you today and keeping everything crossed for positive news.

Kate
x

PCUK Nurse Dianne
Posts: 287
Joined: Tue Aug 14, 2012 3:29 pm

Re: So far so good!

Postby PCUK Nurse Dianne » Thu Apr 04, 2013 10:00 am

Best of luck for today Steve,

You have been quite motivational for other 'forum family' members, sure I speak on behalf of everyone, wishing you well today and we hope to hear positive news.


Best wishes,

Dianne
Support Team

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

Re: So far so good!

Postby J_T » Thu Apr 04, 2013 10:01 am

Fingers crossed for positive news today Steve x

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

Re: So far so good!

Postby DRAD3 » Thu Apr 04, 2013 4:58 pm

Everything crossed for you Steve. x

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

Re: So far so good!

Postby Slewis7313 » Thu Apr 04, 2013 5:29 pm

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
X

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

Re: So far so good!

Postby KATB » Thu Apr 04, 2013 5:41 pm

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
x

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

Re: So far so good!

Postby J_T » Thu Apr 04, 2013 8:47 pm

Echoing what KATB says. Best of luck with your continuing treatment x

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: So far so good!

Postby karen17 » Fri Apr 05, 2013 8:20 am

Fantastic news Steve. I'm so pleased for you :-)
Karen xx