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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Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: So far so good!

Postby Cathy » Fri Jun 07, 2013 2:06 pm

Hi Steve,

That's funny what you say about initially dreading surgery and now you can't wait - but I completely understand.

We're really delighted for you.

xx

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

This feels strange!

Postby Slewis7313 » Fri Jun 14, 2013 3:03 pm

Well.... Just had radiotherapy session 28 of 28. All has gone really well and I seem to have no ill-effects from the rays. The strangest thing was saying goodbye to the staff and saying "see you in 2 months". That is approximately when the next CT scan takes place and in the interim no treatment at all..... Not even bloods. It will be strange driving past the hospital and not turning in, though I have promised to keep depleteing the tea stocks at Maggies (they are lovely people). I feel really well at the moment, so now time to enjoy life for a few months and put things to the back of my mind for now (this forum excluded of course).

Take care all

Steve

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

Re: So far so good!

Postby J_T » Fri Jun 14, 2013 3:19 pm

oh that sounds wonderful! So pleased for you Steve.

Enjoy your 'time off', you've earned it!

Julia x

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

Re: So far so good!

Postby KATB » Fri Jun 14, 2013 4:09 pm

Brilliant Steve - how wonderful to have some time to chill out and enjoy yourself for a while!

K
x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: So far so good!

Postby Cathy » Fri Jun 14, 2013 4:17 pm

Hi Steve

Ditto. It's lovely to have a break, for you and for your family as well.. so enjoy!! Jonathan is basking in his :)

xx

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: So far so good!

Postby Bee » Fri Jun 14, 2013 10:22 pm

Hi,
So glad the treatment has gone smoothly, you have finished this week and Chris has started, four down, twenty eight to go!
It must feel very strange to have a complete break but think you deserve a rest, hope you and your family enjoy every bit of it!!
Best wishes,
bee x

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

Re: So far so good!

Postby Slewis7313 » Thu Aug 15, 2013 3:20 pm

Saw the Oncologist today to review last week's CT scan results and to be honest, the outcome was exactly what we expected. Mixed news, but the Radiotherapy has worked to a degree. The 3cm tumour is now 2.2cm and has not spread which is great, however it is still entangled with the Artery and remains inoperable. The MDT agree that this is unlikely to change in the future. I will now have 3 monthly CT scans to monitor, but no further planned treatment For now. I am comfortable with this and am meeting the senior Surgeon as soon as possible to discuss the detail and review any non-NHS options I am considering. Jeni had advised that trying to switch from Clexane jabs to Warfirin is complicated and perhaps ill-advised...... My Oncologist said exactly the same so I remain on Clexane until further notice.

So the news could perhaps have been better, but likewise could have been a lot worse. It will be nice not to have any treatment, but in some ways worrying as we seem to be monitoring the situation and waiting for the symptoms to deteriorate at some point, at which time we will hit it again with chemo.

I am however feeling good at the moment and will try and carry on as normal, whilst looking at other options such as NanoKnife and will again ask Heidelberg for a second opinion.

I'll keep you all posted on any developments.

Take care all

Steve
X

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: So far so good!

Postby Cathy » Thu Aug 15, 2013 3:58 pm

Hi Steve

Well that is GREAT news about the tumour reduction and the disease stability. Disappointing the darned thing is still tangled up but who knows what options may lay ahead for you in terms of future treatment so very good reasons to feel positive.

I know what you mean re having a break. We are the same - Jonathan is flourishing on his (blood sugar sorted so has even been able to stop insulin injections) but he does feel a little unsettled being monitored and waiting for something to happen so I do understand entirely what you mean. Saying all this, it is such a relief for us to be having a nearly normal life again and making the most of it so I hope you do too.

Re Clexane - we have been told contradictory information for how long the injections are needed from 3 months to life. I will be asking the oncologist if we can have a break on those as well when we see him next. What have you been told?

Keep us posted with how you get on

Cathy xx

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

Re: So far so good!

Postby Slewis7313 » Thu Aug 15, 2013 4:07 pm

Thanks Cathy. It would seem the Clexane issue is a grey area! It would appear that Warfirin does not mix well with chemo (and most other drugs from what I could ascertain). If I were to go onto Warfirin, I would need weekly blood tests to monitor, which is not a requirement with Clexane. I also have a small hernia operation coming up which would again involve having Clexane, so we have agreed to carry on until at least the next CT scan and if all is OK at that time we can review (but not necessarilly stop) the jabs. As my blood clot was in my Lung, it is apparently standard procedure to adminsoter for a minimum of 6 months and possibly longer depending on how I am doing. Whilst I was keen to move off the jabs, after discussing with the Oncologist, I am more than happy to stick with them for now.

Steve
X

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: So far so good!

Postby Sueba » Thu Aug 15, 2013 5:03 pm

Hi Steve

Great news!!no growth just reduction is definitely worth celebrating!

Sue
X

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

Re: So far so good!

Postby J_T » Thu Aug 15, 2013 10:29 pm

We had exactly the same Clexane conversation today, weekly blood test, v warfarin etc. We'll stick with the Clexane thank you!

What great news about tumour shrinkage! Definitely time for a little bit fizz methinks!

Great stuff!

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: So far so good!

Postby Bee » Thu Aug 15, 2013 11:50 pm

Fantastic news, no spread and shrinkage.
I know it's a mixed bag but focus on the positives and celebrate!

Bee x

PCUK Nurse Dianne
Posts: 286
Joined: Tue Aug 14, 2012 3:29 pm

Re: So far so good!

Postby PCUK Nurse Dianne » Fri Aug 16, 2013 8:37 am

Good to hear your news Steve,

I can imagine it is with mixed feelings, this pathway is not always straightforward unfortunately, however yes that is a positive that the tumour has shrunk. Helpful as you mention to always have other options to look into, and I am sure a break away from treatment and hospitals would be a welcome break.

As for the warfarin/clexane debate, this is a common issue and Jeni and I were talking about it yesterday. With clexane, there is no monitoring as such, and Warfarin is at least a weekly blood test, and dose changes will often require more frequent monitoring. Also Warfarin has many interactions with other medications and some foods, and has a longer 'half life' which in pharmaceutical terms means that it stays in the system longer. Clexane has a shorter life due, so therefore is far easier to stop if need be, as Steve said with his potential hernia operation forthcoming. . Also as mentioned, Warfarin it is not suitable for use with chemotherapy, where as Clexane is.

Treatment with clexane varies between patients/clinicians. For non-complex cases of DVT (deep vein thrombosis) the treatment is often only 3 months - this may be your well fit person who has developed a DVT through travel, sporting injury or otherwise. We do know that those people who have a 'cancer diagnosis' are often more prone to developing deep vein thrombosis so as we say once diagnosed then 'prevention is better than cure', so you may find that the treatment regime will be 6 months, or in some instances longer.

Dianne
Support Team

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

Re: So far so good!

Postby LindaH » Fri Aug 16, 2013 6:04 pm

That is such good news Steve, down from 3cm to 2.2cm, I tell you if I get a result like that I will be over the moon.

It's difficult when we're in this sort of "Limbo" stage, it's the not knowing which (if you let it) can become a bit of an obsession, but we can't let it, we have to do like Mo Farah is doing right now in the World Championships in Moscow and holding other runners off in the 5000 metres race (Friday 16th BBC 2 6pm) he's going for Gold.....and YAY! He's done it....it was hard, but he did it.....we have to take inspiration from people like him, he never, ever gives up and neither will we.

I do so hope you are able to have Nanoknife or the 'Big' operation Steve, it would deffo be the icing on the cake for you and your family. For myself, I'm a great believer in saying as one door closes another will open, I've just got to find the key :-)

Catch you again soon Steve take care x

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

Re: So far so good!

Postby Slewis7313 » Wed Aug 21, 2013 7:01 pm

As a follow up to the news from the MDT last week that my tumour remained inoperable, the Senior Surgeon invited me to a meeting to discuss the detail. I had half hoped they were perhaps reconsidering as he was going over my scan again. Not to be I'm afraid..... He detailed the problem which we now fully understand for the first time. The arterial involvement is actually the tumour growing across a part of the artery where 3 branches break out. To remove the tumour, he woud need to cut away all 3 branches which together supply 90% of the gut! If it was only one branch, he could have a go, but three branches make it impossible.

He has stated he will support us in any alternative associated activities and would be happy to discuss any options we wish to consider. Looks as though we will continue to monitor the sitation with 3 monthly scans and reviews with the Oncologist.

Could be worse!


Steve