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So far so good!


Slewis7313
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So, I met the Oncologist today and we jointly celebrated the amazing news regarding the massive drop in my Tumour Marker from 2,100 to 766! We also discussed my break in treatment (missing 1 cycle) to allow us to have a little Holiday and all good news here as well.


I then asked if the good news regarding the marker was a general indication that there is a light at the end of the tunnel for my current treatment. However, as the disease has now become secondary, it apparently reacts in a different manner to locally advanced and we should therefore not let it 'get away from us again', as bringing a secondary back under control becomes more difficult with time. The bottom line is that I would now appear to be on chemo permanently to stay on top of the thing for as long as possible! The feeling is that longer breaks might put me at risk and we simply need to keep the pressure up. Not the response I was expecting and I do understand what she is telling me, but it sort of feels like bad news.


How does this align with your collective experiences out there?



Steve

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Hi Steve sorry about the so so news, the week before we started the chemo oncologist basically said to us 3 weeks on 1 week off (Gemcitabine and Abraxane ) till clock out, or until scans show chemo not doing anything bit of a bummer but like you we are going for it. X

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Steve keep on keeping on. You seemed to have settled into the Fox very well so if you need more treatments than first thought you should be okay for handling more if necessary. You continue to be an inspiration to all.


Best wishes

Julia x

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Hi,

Can't really help with our experience, Chris never really got going on the folfox as things changed so suddenly , and I don't really know what his markers were doing, so many things happened in quick succession, they weren't the priority.

All I can say is continue to enjoy the good news that you have , we know that this sneaky disease likes to throw bad news our way. as Julia says, keep on keeping on and have a lovely break away.


Bee xx

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Sorry to hear your bit of bad news Steve, Trevor's tumour markers are going up again, and the Professor said he would be going back on treatment if they did, so we will wait to see what he tells us. I suppose we just have to be thankful that both of you feel well at the moment, take care sandrax

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Steve, I learnt I had secondaries in several bones a year ago. These seemed to respond to the Folfirinox, at least until the last few weeks, and I suspect that most are still quiescent. I should know more after my scan next week.

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Hi Steve


When my husband started folfirinox the oncologist suggested a course of 12 treatments. As he was responding well they decided to keep him on it until it stopped working. He had 22 cycles in total. The treatment worked well until he had to take about five or six weeks off. He became very ill with undiagnosed diabetes and ended up in hospital so he had to have a break . He lost 10 kgs in a week so had to build up again. He was only 60kgs to start with! He re started the treatment but the tumour markers started to rise so they took him off after 2 months back on it. Having such a long break seemed to lessen its effectiveness.


He was then given the option of going back on the gem that he had after his whipples. We decided to see another consultant who agreed to put him on Gem Abraxane which we had to pay for. However setting this up took three months and he started to become symptomatic so he only managed 1 cycle before he became too ill to carry on. I see why they want to keep on top of things and if it comes to a point that you need to change regimes try and speed things along.


It is great news that your markers are coming down. Have a great holiday.


Sue

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Now I have had a few hours to get my head around this, it is the best course of action. Your own experiences would advocate continued treatment and I should perhaps elaborate on what my Oncologist explained to us. There is apparently no clear evidence to confirm one way or another the best way forward, but she has been involved in recent discussions regarding a vaccine trial in France which had some worrying outcomes. Not sure exactly what the vaccine was, but as stated the outcomes were poor and general concensus from the involved healthcare professionals was that the poor responses were probably more as a result of stopping chemo for the duration of the trial than the vaccine itself!


The option of being on chemo until whenever was someting I had not really considered and implies a certain inevitability, managing the disease until the end rather than kicking it from time to time. This caught me a bit unprepared yesterday and whilst totally the right thing to do, brought some initial negative thoughts..... silly boy!


But today is another day, I've given myself a kick up the backside and objectivity is being reinstated. I realise I am still in a very good place compared to others with this thing. The last cycle has been the 'best' and we are managing the side-effects really well now. Days 1 to 6 are unpredictable, no sickness, manageable Neoropathy, a bit shaky whilst on steroids (first 3 days) and a fair bit of sleeping. The rest of the cycle is in reality pretty normal, so all in all good progress.




Thanks for the words of encouragement!


Steve

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Its good that you are feeling up-beat again, well done for the kick up the backside gave myself one too, I agree its the only way to be. We were disappointed to say the least to find Trevor's markers rising, the more I think of it the more I am convinced that the professor thinks that Trevor has regrowth in the pancreatic bed, that hasn't yet shown on the scan. Its only 3 months since his last treatment, and his markers are back up to 846 from 220 six weeks earlier. I was hoping he would get the summer off but hey-ho, thankful like you be be in the position we are, but its still scary!! Thinking of you kind regards sandrax

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Hi Steve


I can only really mirror what you already know. We saw a different oncologist from the team on a few occasions and some said folfironox needs to continue and another said not due to toxicity. I emailed Jeni from here and the conclusion was that there really isn't a definitive answer. Folfironox can be quite toxic although they can alter some of the drugs to suit. So in our experience, Jonathan had the oxalyplatin dropped in the last cycle due to neuropathy and then had a break because he really couldnt have had any more chemo and any quality of life as it knocked him out (the famous wheelchair incident).


If you are tolerating the chemo ok Steve then I don't think there would be anything to lose by continuing.


You are an inspiration to others on here by your positivity!!


Cathy xxx

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My bloods yesterday returned low Neutrophils (1.0) so they did the tests again today and they are now 0.8! No chemo this week as a result, but I feel OK and know my tumour marker has come down a lot in recent weeks, so I am happy to wait another week to start the next cycle.


My Neutrophils had previously been pretty consistent between 2.1 and 3.0.


Steve

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PCUK Nurse Jeni

Hi Steve,


Sorry to hear about the latest developments. Indeed, a tricky one as Cathy has said. However, having known others who have also gone down this route, this appears to be one of the options these days. Intermittent versus continuous chemotherapy has been tested in clinical trials in the bowel cancer setting, but have not shown clear-cut, conclusive results.


I think many oncologists are going down the route of continuous chemotherapy these days in order to obtain a measure of control of the disease spread, and in some cases, some modifications of the regime have been put into place to allow the patient to tolerate them for longer. For example, dose reductions, omitting one of the drugs as cycles go on to help toxicity (usually oxaliplatin), or even lengthening the gaps between cycles, for example, 3 weekly rather than 2 weekly. This then allows some leeway in terms of holidays for the patient, etc...


As ever Steve, you have bounced back, and are your usual conspirational self, only hours after having had a "blow" in terms of the news. However, you are OK to have a down day from time to time!


Sending regards to you all,


Jeni.

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Hi Steve,

Paul was also disappointed this week as his chemo was delayed for a week due to shingles (although I am not convinced as the spots have disappeared very quickly, and he feels very well!).

Paul is on an on going regime of Gem and Abraxane for the foreseeable and his consultant is convinced that this is the best option, and as Jeni suggests, this is a modified regime with a half does of Abraxane and is fortnightly instead of weekly. He tolerates it well, tumour marker are normal and no changes on this week's scan. A friend of a friend, who I think has breast cancer, has been going for monthly chemo for 4 years with no changes, so lets hope this can work as well for you, Jim, Paul and anyone else that has this option,

Nikki

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Thanks Nikki, your comments are reassuring. Now I have my head around what is happening, I will be looking at perhaps asking for a reduced dose if it is working so well. As ever, the good old balance of staving the damned thing off whilst having some semblence of a normal quality of life is what it's all about.



Steve

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Reporting directly from the Chemo Unit! My bloods are obviously better this week as treatment has started on time and with all my medication already sent up from the Pharmacy. I'll let you all know the exact blood results later.


Steve

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I seem to struggle holding my weight during the first week of 'The Fox', though I tend to recover during the second week. My team are on the case with blended meals and generally stuff I like the taste of, as my problems seem to be a mix of appetite issues and occasional (reducing) bouts of sickness. All in all it is going well, but I was wondering if anyone has thoughts on the usefulness of chocolate bars (e.g. Mars) as that is something I really do enjoy!


Steve

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Hi Steve,

I know there is a school of thought that says that cancer feeds off sugars, but Paul's doc's, including a gastroenterologist who specialises in nutrition, feel this is a outdated idea, that has never been proved. He is told to just eat as many calories as he can, in any form he fancies, as long as we can keep his blood sugars under control. Doesn't seem to have done him any harm so far,

Nikki

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Steve, please don't worry about what you eat. My dad is eating all kinds of stuff, kebab, pizza, crisps, chocolate, cake, and not just a bit a day. A 'normal' day would consist of breakfast, dinner, tea with 4 bags of crisps, 4 or 5 chocolate bars, 2 bags of crisps, and a pizza or kebab before bed. His oncologist has said this is fine. If it has calories, and he's hungry, then eat it.


Leila x

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