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

Moderator: volmod

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

Re: My Journey So Far

Postby J_T » Tue Jul 23, 2013 6:07 pm

Hi Mark, pleased to hear about the tumour shrinkage but not so good about the bone metastases. It seems your results were somewhat similar to Ray's, he also showed bone mestastases that were not present initially, however our onc decided to stop the Folfirinox straight away. He also had no pain, more or less straight away after first chemotherapy and was, and is, quite well and we were shocked with the scan results.

Although our onc is not specialist in pc, he is the top man in our area so we have to trust him. We are starting new treatment on Thursday but won't know until tomorrow whether we will get what we want - I will report back as soon as I know for sure.

Ray has always found the fatigue the worst aspect of the treatment and you are still doing well if you can manage a couple of hours of gardening! I was doing some last week and *I* was pooped after a couple of hours out there, especially in the heat we have been experiencing!

It certainly is a journey of highs and lows but you are right it saying the only thing to do is remain positive. France sounds wonderful, such a beautiful country, and something good to look forward too.

Keep well.

Julia x

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

Re: My Journey So Far

Postby Cathy » Tue Jul 23, 2013 6:12 pm

Hi Mark

You sound like you are doing really well.

Jonathan also found the fatigue worsening arounds the same cycle as you are on and the break he is currently on is doing him the world of good. He looks great (albeit a little bit too much girth!)

I'm not surprised you are thinking of France, it won't be long now to September.

Keep on keeping on!!

Cathy xx

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

Re: My Journey So Far

Postby Bee » Tue Jul 23, 2013 7:48 pm

Hi Mark,
This is a disease of such highs and lows, it seems impossible to second guess what is going on in the inside of each individual.
As you say day to day living becomes the norm and being thankful for what you have, amazing how priorities change on this journey.
France does indeed sound lovely as does the well earned break from chemo!
Take care,
Bee xx

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

Re: My Journey So Far

Postby J_T » Fri Aug 16, 2013 9:12 am

Hi Mark
Been wondering how you are doing? Have you finished your cycles of Folfirinox?

Hoping you are well.

Julia

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

Re: My Journey So Far

Postby MSH » Fri Sep 06, 2013 4:29 pm

Quite an eventful month, I went for my 9th course of Folfirinox which went as per usual. Unfortunately when I returned to have the bottle disconnected I found the CA19-9 had jumped to 800+ almost 3 times what it had been. This led to me having a further CT scan which apparently was much the same. I had a meeting with my oncologist yesterday and a further CA 19-9 had dropped to 370. This was good news as I had worried that my tumour was becoming resistent to Folfirinox. The plan now is to complete the final 3 courses of chemo and then have a further CT scan and then perhaps a PET scan which should reveal if there is any activity in the bony mets.

I had booked a holiday in France next weeek and so will have a gap of 4 weeks before the next course of chemo. I am not unhappy about this as it should allow me to enjoy the holiday a bit more. My haemoglobin had dropped to 10.3 making exercise a bit more difficult, in fact my oncologist offered a transfusion, but I don't feel it's that bad and I should improve a bit without the chemo.

I continue much the same, I have no symptoms from my disease and little from the Folfirinox. My stomach has been more settled and I continue with Creon 40,000, 25,000 and 40,000. I also take Omeprazole to prevent heartburn for the first week after the chemo. I also have a multivitamin tablet and continue with the bitter melon capsules.

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

Re: My Journey So Far

Postby J_T » Fri Sep 06, 2013 8:49 pm

Hi Mark, sounds like you are doing really well on Folfirinox, that's just great!

Have a fabulous month off and a lovely time in France, its so beautiful there.

Wishing you continued good results.

Julia x

MelindaEverettutu
Posts: 4
Joined: Thu Sep 19, 2013 6:47 pm

Re: My Journey So Far

Postby MelindaEverettutu » Fri Sep 20, 2013 12:21 pm

Hello to all, Can any one tell me where I can find more info regarding the symptoms and treatment of Dysarthria ? Thank you very much

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

Re: My Journey So Far

Postby Slewis7313 » Fri Sep 20, 2013 2:02 pm

Melinda, I think you may be on the wrong forum as we discuss matters here concerning Pancreatic Cancer. I do not believe Dysarthria is something which is in any way related.

Steve

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

Re: My Journey So Far

Postby J_T » Fri Sep 20, 2013 6:05 pm

Steve, its a side effect of Folfirinox. It think the irinotecan causes it temporarily. It affects speech.

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

Re: My Journey So Far

Postby Slewis7313 » Fri Sep 20, 2013 6:42 pm

Ah, apologies all round!

Steve

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

Re: My Journey So Far

Postby Slewis7313 » Fri Sep 20, 2013 8:12 pm

Melinda, I have just realised how insensitive (and stupid?) my earlier comments were. I really do apologise and hope my friends on this forum with experience of your issue can help.

Good luck!

Steve

MelindaEverettutu
Posts: 4
Joined: Thu Sep 19, 2013 6:47 pm

Re: My Journey So Far

Postby MelindaEverettutu » Mon Sep 23, 2013 5:46 pm

Melinda, Maybe this can help you www.dysarthria.co.uk .Hope you get well . All the best

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

Re: My Journey So Far

Postby MSH » Wed Nov 06, 2013 9:22 am

Well I finished the course of 12 Folfirinox last month. All in all it wasn't too bad, though I am just about managing to cling on to the last of my hair and I have a tingling in my fingers and toes caused by a peripheral neuropathy. This has always followed the chemo but usually went before the next course. For the last two courses it persisted causing some difficulty with things like buttons. I now have a few weeks off chemo, which I'm looking forward to.

I had another CT scan my 5th after completing the chemo and there is an obvious shrinkage of the tumour. This may give me the option of surgery except for the bony mets. To see if they have responded to the Folfirinox I am awaiting a PET scan at the end of this month. This will be followed by a multidisciplinary team meeting after which I will see the surgeon or oncologist as appropriate.

I continue much the same, my appetite always good has resulted in me gaining almost a stone which I am in the process of losing albeit slowly. I have not needed a pain killer in over 6 months, in fact it is easy to forget I have pancreatic cancer as for months I have had only the side effects from Folfirinox. I continue on Creon though the odd time I've missed one perhaps when eating out doesn't seem to make much difference. My CA19-9 has now dropped to 90 so the temporary rise to 853 back in August is a bit of a mystery. I'm thinking of using the time until the PET scan by taking a holiday perhaps in Turkey after learning a little of the Ottoman empire.

My best wishes to all affected by this disease.

Mark

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: My Journey So Far

Postby cestrian » Wed Nov 06, 2013 9:37 am

Mark

That's great news and long may your good progress continue! It's always heartening to hear of someone who is keeping this curse at bay and I'm sure we all support you in hoping and praying that surgery may become an option for you! Very best of luck and all good wishes. Enjoy your "time off for good behaviour".

Love and Peace

Mike

Lo

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

Re: My Journey So Far

Postby J_T » Wed Nov 06, 2013 9:45 am

Wow Mark, that is excellent news! I really hope the PET scan brings more positive news for you.

I've only been to Turkey once but it has a stunning coastline and inky blue night skies - fabulous! I am up in your neck of the woods in a couple of weeks with my eldest son and family. Ray and I visited Northumberland for the first time a year or so ago and we had a wonderful time. It's a beautiful county.

Enjoy your well deserved chemo break, you must being feeling so pleased.

Julia