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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MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: So far so good!

Postby MSH » Thu Jul 17, 2014 11:41 pm

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.

SueH
Posts: 18
Joined: Fri Mar 21, 2014 9:33 pm

Re: So far so good!

Postby SueH » Fri Jul 18, 2014 12:55 am

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

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

Re: So far so good!

Postby Slewis7313 » Fri Jul 18, 2014 8:30 am

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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sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: So far so good!

Postby sandraW » Fri Jul 18, 2014 1:09 pm

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

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

Re: So far so good!

Postby Cathy » Fri Jul 18, 2014 9:13 pm

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

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

Re: So far so good!

Postby Slewis7313 » Wed Jul 23, 2014 11:22 am

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
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: So far so good!

Postby PCUK Nurse Jeni » Wed Jul 23, 2014 3:47 pm

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.

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: So far so good!

Postby nikkis » Wed Jul 23, 2014 5:32 pm

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

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

Re: So far so good!

Postby Slewis7313 » Wed Jul 23, 2014 7:07 pm

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

Re: So far so good!

Postby Slewis7313 » Thu Jul 31, 2014 10:10 am

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

Re: So far so good!

Postby Slewis7313 » Thu Jul 31, 2014 10:39 am

My neutrophils were 0.8 last week, hence no treatment. This week they are 2.2.

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

Re: So far so good!

Postby J_T » Thu Jul 31, 2014 11:17 am

Great stuff Steve, keep it up!

Julia x

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: So far so good!

Postby sandraW » Thu Jul 31, 2014 11:30 am

That,s good news Steve, well done those neuts take care sandrax

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: So far so good!

Postby PCUK Nurse Jeni » Thu Jul 31, 2014 12:50 pm

Good news Steve!

Jeni.

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: So far so good!

Postby nikkis » Thu Jul 31, 2014 1:16 pm

Great Steve,
Paul also had his delayed chemo yesterday, so you are both back on track,
Nikki