A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

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

Re: My Journey So Far

Postby MSH » Sat May 23, 2015 8:27 pm

When I first saw my oncologist the course of treatment was pretty clear. A recent study had shown major survival benefits with Folfirinox over the then standard treatment of Gemcitabine, 11.1 months as opposed to 6.8months. Because the study had used a course of twelve treatments at two weekly cycles, that tended to be the model used. There might have to be modifications because of side-effects or intolerance, but essentially that was the aim. I still remember how disappointed I felt when I saw my oncogist after finishing this course of treatment and the subsequent MDT meeting. The message seemed to be wait until the symptoms return and then we'll try Gemcitabine. As I remarked to my wife driving home, the whole tone seemed nihilistic.

I subsequently went on to have treatment with the Nanoknife to the pancreas, and tried to persuade two private oncologists to treat my bony metastasis with the Cyberknife. This wasn't done after a PET scan in April 2014 found no activity. It was a lie, as within weeks I began to get symptoms and after being indolent for more than a year it quickly spread to three surrounding bones and the nerve root. I had conventional radiotherapy and had had a further six cycles of Folfirinox by December of last year. I then had a break of almost two months when I re-explored the possibility of Cyberknife treatment and went skiing. I had hoped to have a further four cycles before I my North American trip, but only managed three as my neutrophils tend to drop too low.

We have just returned from two weeks in Canada and almost three in California. It was generally a walking holiday and we had an amazing time. The only slight disappointment was that we had to alter our plans to hike in Yosemite after they closed the road because of snow. We had to make do with the Sequoia National Forest instead! Apart from a broken tooth which fortunately didn't cause any problems my health was excellent. There was a time quite early into the holiday when the pain from my back seemed to be returning, but it was only my mind playing tricks as it is sometimes wont to do.

I have just seen my oncologist and this time the course of treatment is far from clear. We have moved into uncharted territory where we have to choose what seems the best option. She suggested dropping one of the drugs, but agreed with my idea of resuming full strength treatment but at three weekly intervals. I had been sure that as my last treatment was on the 9th March the effects of the chemo would have waned and my CA19-9 would show an increase. Because of some reorganisation this came back later than usual but I was delighted to find it had fallen from 318 in March to 201. Despite the gaps in my treatment I seem to be responding at least as well as the first time round. Additionally I am much less effected by side effects and have a full head of hair. With many drugs it takes time and experience to find the best way to use them, with Folfirinox I think we are still learning.

I have a review appointment in about twelve weeks time. I had planned on using the biomarker to guide us with respect to treatment. However, we have booked to return to Palm Desert (a type of timeshare) next April. With that in mind I think I might be best continuing with Folfirinox until next Spring. I know there are huge assumptions in there, and if I get there it will take me into my fourth year with this disease. But having lived with this for over two years now, and feeling as well as I do, my horizens have lifted a bit. Also it is good to have things to look forward to.

Let us be positive.

Mark.

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

Re: My Journey So Far

Postby J_T » Sun May 24, 2015 12:04 pm

Fabulous news Mark. So good to hear you are still getting the most out of life.

Your path is always a stark reminder to me of how this disease affects people in very different ways. Ray got ill about the same time as you and also had bony mets to his spine. Your paths could not have been more different.

I wish you continued good health and continuing positive outcomes with your treatment. So encouraging to hear the good news.

Keep up us to date.

Julia x

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: My Journey So Far

Postby Didge » Sun May 24, 2015 2:36 pm

I agree about uncharted territory but this is also one of the reasons why I hoped for the medical innovations bill to be passed. We were told when asking about abraxane "It's only been trialled for first treatment so we can't use that". I do think that with PC and, as you say, folfirinox being fairly new, that 'try it and see' is crucial. I do think that sometimes they are stumped as to treatment plans when you thwart their expectation that you'd be 'gone' by now. Also, I have come across many survivors in America (I must have read every blog, post and report, in their thousands, in those first few months) where they have been on chemo for 2 or more years, way after all symptoms of the disease have gone as far as the scans are concerned, simply because their docs believe it will come back if they stop - and looks like they are right. Our treatment plans are too rigid in this country. Incidentally the few people who have survived in this country often have had private treatment where their oncologists have thrown something extra in the mix. We don't have that option.

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

Re: My Journey So Far

Postby Cathy » Sun May 24, 2015 7:53 pm

Hi Mark

Keep posting...! It's always great to hear from you and that you are doing so well. I gives everyone hope.. and great that you have planned ahead for next year!

Hope is so important.

Kindest regards

Cathy xxx

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: My Journey So Far

Postby EmmaR » Mon May 25, 2015 10:39 am

Mark ,
It's the only way to go ! keep fighting this damn & blasted PC with everything and anything that's at your availability that keeps you well enough to carry on seeing the wonderful world that is out there keep planning ahead and Enjoy !!

EmmaR x

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: My Journey So Far

Postby sandraW » Mon May 25, 2015 12:04 pm

Hi Mark,
This is really great news and fabulous that you are planning ahead into next year and enjoying life to the full.
I do agree with Didge that the sufferers with private medical care to seem to get a better outcomes as the NHS says one first line drug only.
Trevor never even got a chance at Gemcitabine as they waited too long to put the drain in and his jaundice just overtook his body, still got that one to sort out, but its early days yet to be taking that on. Still at least he didn't suffer for long and that itself is a blessing in disguise, in the nature of the disease. Just so pleased that you are doing so well take care sandrax x

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: My Journey So Far

Postby LMD » Mon May 25, 2015 8:52 pm

Hello Mark
So pleased to read your positive update. Sounds like you've had an amazing holiday too!
All the best
LMD x

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: My Journey So Far

Postby RLF » Wed May 27, 2015 9:32 am

I always enjoy reading your updates and glad things are doing well for you! You're doing a great job of keeping on top of things though I understand your frustration at the cyber knife issues, nobody seems to do things with any urgency. Enjoy your holidays and I'm jealous of your USA trip, everyone told us not to go there as it's too risky if things take a turn for the worse due to the cost of any treatment there. If things are good for us still in autumn I'm going to suggest it again.
Rob

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

Re: My Journey So Far

Postby MSH » Tue Aug 18, 2015 3:53 pm

Given that we start from a bad place, and there aren't too many places worse than inoperable metastatic pancreatic carcinoma, in many respects I have been very fortunate. The disease has now responded on two occasions to chemotherapy giving me a good quality of life. The only symptom I have had, aside from the initial jaundice has been pain, and as this has cleared quickly with the chemo, I am just left with the side effects from Folfirinox. I am largely unaware of the worst of these which is the effects on bone marrow, making me a little anaemic and depressing my neutrophils making me vulnerable to infection, though this is more cyclical. The other effects are mainly the neuropathy
which I think must now be permanent, though this is much less prominent now then when I finished my first course of Folfirinox, and thinning hair which is minor and in any case temporary.

In particular I have escaped two very common accompaniments of the disease, and treatment, fatigue and poor appetite. I lost about half a stone when I was jaundiced but after that my weight crept slowly up. Things came to head in Canada when I stepped on some scales when leaving a restaurant and read 202lbs. I have never been that heavy and things
weren't helped by the large mirrors found in the bathrooms of our various accommodations. A waitress later told me that the scales weighed about 7lbs too heavy, don't ask me what scales which weigh heavy are doing in a restaurant in the first place. I have some concern about diabetes as I am supposed to have chronic pancreatitis and when a fasting blood sugar came back a little high, I decided action was called for. It hasn't been easy but as of this morning I weigh 164lbs putting my BMI in the normal range at 24.2. I have been helped with my weight loss by returning to an old pastime, for the past three months I have been hiking the Cheviot hills. I live close to a long distance footpath called St Cuthbert's Way, 62.5 miles from Melrose to Holy Island, and after tramping the part which crosses the Cheviots often enough, I have determined to attempt the whole thing next week. As part of my preparation I did a longish walk yesterday of some sixteen miles, not too bad considering it was within a week of having chemo. Let's hope for sunshine next week, or at least an absence of rain.

Despite my current wellbeing I can't forget that I have a disease which though controlled, isn't going away. The CA19-9 reading on my return from America proved to be a lowpoint, and since then the reading has risen at intervals to 298. I had hoped to see a further reduction in this given that I have had four further cycles of Folfirinox, making 25 in total. When I saw my oncologist last week, she was to my mind surprisingly cautious saying that we were now in the realms of maintainance chemotherapy, and that she would like a second opinion from a more specialised oncologist. I actually recognised the name as she had been copied in to my letters when I was with the regional team. Anyway the upshot is that I am on Folfirinox four weekly at the moment, which is what I had in mind at this stage. This also makes things a little easier to plan for, and we intend to take the car to France and Spain next month, followed by a trip to the imperial cities of Morocco in October something Diane and I have talked about for a while. I can't rely on my current health continuing so we must take advantage whilst it remains good.

My best wishes to all affected by this dreadful illness.

Mark

PCUK Nurse Jeni
Posts: 1101
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Journey So Far

Postby PCUK Nurse Jeni » Tue Aug 18, 2015 4:19 pm

Dear Mark,

Thanks so much for sharing this positive and inspiring update.

It really is great to read what has been happening with you, and your escapades on the hills! What an inspiration to walk 16 miles and attempting more - absolutely unbelievable - congrats on this one and I hope the next one is even better and the rain keeps away.

This is very interesting about the 4 weekly Folfirinox - and yes, the realms of maintenance chemo is an interesting debate. I am encouraged to hear about you being switched to a 4 weekly regime - I wonder if this is something which will be adapted into protocol over time, as it would be really good if this happened, and we were seeing more people with metastatic disease able to have disease control while having some quality of life and not having to have chemo every week (as with Gemcitabine) or 2 weeks with folfirinox.

I hope that you continue to do very well Mark, and enjoy your road trips to France and Spain. utterly deserved.

Kind regards,

Jeni, Support Team.

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

Re: My Journey So Far

Postby J_T » Wed Aug 19, 2015 1:24 am

Hi Mark, Jeni said it all. I can only add, you are amazing! Long may you continue to be well and continue doing the things you love.

Very best wishes
Julia x

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: My Journey So Far

Postby kittycat » Wed Aug 19, 2015 3:06 am

Hi Mark, how lovely to hear such positive news, I hope it continues for a long time.

Sue

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: My Journey So Far

Postby Sueoliver » Wed Aug 19, 2015 9:32 am

Hi Mark
I really enjoyed reading your positive update and I truly think you are amazing. Enjoy your road trip to France and Spain and I hope you continue like this for a very long time.

Love Sue x

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

Re: My Journey So Far

Postby MSH » Fri Nov 13, 2015 9:57 pm

After weeks of being careful with my diet it was something of a change to deliberately load up on the calories in a Melrose restaurant prior to my walk. Fortunately the weather was kind and I really enjoyed what was in effect a mini-adventure. Three hard walking days covering something over twenty miles a day with a 28 lb pack and two nights of wild camping felt quite an achievement. The only hitch was on the night before the final day when the cramped space in my tent caused the end of the central line to be detached. Technically this should have been clamped but after thinking of my options for a couple of minutes I decided to wait until the next day and finish my walk. I then enjoyed two good holidays, we got as far south as Toledo just below Madrid. I remember some years ago when I drove to Barcelona, getting into the city was easy, but it took hours to find the right road out. It is so difficult when all the names on the signs are meaningless. This time I had the benefit of a sat nav and even driving through large cities was a breeze. Morocco was a fascinating place, a mix of ancient and modern. Ifran could easily pass as a town in France, whilst the shepherds watching over their flocks has probably not changed from biblical times.

I have been aware of an abdominal sensation for months now. This was for most of that time only a mild background sensation but it has recently become more of a problem. It stopped me sleeping a couple of nights in Morocco, at least until I found where they sold alcohol. It is at its worst first thing on a morning as all my pain has been, I suspect because recumbency exacerbates the swelling. I now take paracetamol regularly and 10 mgs of MST twice daily. This for the moment allows me to forget the pain, but the problem is that whilst most pain will improve over time, this is only likely to get worse. I had a second opinion from another oncologist who wasn't happy with me continuing with Folfirinox and arranged for a CT scan, my first in almost a year. In some respects this was good, the primary tumour had grown slightly and the bony lesions have responded well to the treatment. The upshot is that I am changing chemo to Gemcitabine, and I had the first course this afternoon. I am disappointed that the Folfirinox which has served me so well, no longer seems to be effective, though I suppose it was always going to happen at some stage, and I should be thankful it has lasted so long. I have had 26 courses in all. I had the central line removed yesterday, and not before time. The last time it was flushed was followed by a day of fever with rigors. This settled inside 24 hours but recurred briefly a couple of times the following week.

Apart from the abdominal pain I consider my health to be good. However the bloods done yesterday were a bit alarming. My Ca 19-9 has now risen to 1864, and additionally my LFTs are rising suggesting the jaundice may be returning. I have a very mild skin irritation, and I think I will contact my surgeon, last seen almost three years ago, on Monday. It is likely that I will need a stent refitting, and I don't want to risk the treatment being interrupted. I have to hope that I respond to Gemcitabine and it is good at least to have a plan of action after weeks of being in limbo. I do though have the feeling of a corner turned.

I suspect my next update will be sooner than 3 months.

Best wishes to all.

Mark.

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

Re: My Journey So Far

Postby J_T » Fri Nov 13, 2015 11:42 pm

Hello Mark, your trip sounds amazing!

I know you felt, quite some time ago, that your first stent had 'disappeared' somehow, so time now for refitting! Get it done as soon as, that skin irritation can drive you nuts, it did Ray!

Sounds like on the whole you are still faring quite well. I hope with a new stent, and gemcitabine doing a good job on you, you will have many more adventures around the globe with Diane.

Very best wishes
Julia x