Advanced Pancreatic cancer – stomach cramps

[JST]

I’ve been reading posts here for nearly two years but I’m new to the discussion board. To cut a long story short, my husband was diagnosed in July/Aug 2009. He had a whipples in September of the same year, followed by 6 months of gemcitabine (belts & braces). Just when we thought we could get life back to 'normal' – he was offered chemoradiation. After much deliberation, we opted to have this treatment. Up until this point, my husband had coped extremely well, with the surgery and chemo, but this treatment knocked him sideways. Chemoradiation finished in September 2010. The reason for my post is that the cancer has come back. In July this year the latest scan revealed disease at the original site of the tumour and in surrounding lymph nodes. More chemotherapy was offered which we took. A combination of 3 chemotherapy drugs, given fortnightly over a period of 8 weeks. The subsequent scan showed things were stable. However, my husband is now suffering from very painful cramping. Barium meal x-rays show there is no obstruction. We’ve been prescribed buscopan, but it doesn’t seem to be helping. I’m concerned that the cramping is an indication that things are heading in the wrong direction and are symptomatic of the disease advancing. I was hoping others on the discussion board might have some experience of this and be able to advise.

[PCUK Nurse Jeni]

Hi JST,

Do you know what the drugs were called which your husband has had? (the combination of 3)

I am wondering if they are the cause of the cramps, but would need the names to check.

KR,

Jeni.

[JST]

Hi Jeni

Yes, he is on FOLFIRINOX - a combination of Oxalipatin, 5FU and Irinotecan. We know that one of these drugs can cause the cramping - Irinotecan - but our oncologist feels that the cramps are not being caused by the chemo and that's why we've had a bariam meal & x-rays - to try to get to the bottom of this. The cramping is really getting my husband down and is delaying further treatment. He hasn't had any chemo for 6 weeks - I read somewhere on a website that this can be an indication of 'last stages' and I'm trying to work out if that's were we are at.

Thanks for your help.

JST

[PCUK Nurse Jeni]

Ok -I thought it would be FOLFIRINOX, and my theory that the Irinotecan can cause the cramps has already been out-ruled by the oncologist!

Sorry I can't help more? Is he on colpermin? Can be good for cramps.

Jeni.

[JST]

Thanks for your reply Jeni.

We haven't been told about colpermin, so will ask. He was prescribed co-codamol yesterday to help ease the cramping. He also had further treatment/chemo - the irinotecan has been dropped from the regime. The cramps are so bad at times, it is like he is having a heart attack. 2 doctors have now advised that they are post operative/treatment related. I dont know if anyone else has been told this? That lesions can form around the site of the operation and can contribute towards this problem?

[Trevor F]

I was on 3 cycles of Folfirinox recently but I don't think this helps.

I too have had stomach cramps but probably not as bad as your husband. Sometimes they are debilitating and sometimes they are at a low level, hardly noticeable. Sometimes some Paracetemol helps and also a hot drink. Cramps seem to get worse after a bowel movement, but I am not completely knocked out by them.

[Hopefulwife]

Hi Trevor,

My husband, Steve, is about to start on Folfirinox next week. We are at the nurse-led clinic tomorrow, then he's having a PICC line fitted on Monday ready for chemo starting Tuesday. Do you have any tips for us. He is scheduled to have two cycles then have a ct scan to see if there's any improvement. Steve was on the SCALOP trial of GemCap but it didn't work after two cycles and the cancer has now spread to his liver. Apart from extremely cold hands (Raynauds Phenomenon) he really had no side effects from the GemCap but are wondering what you experienced with Folfirinox.

JST,

Steve is also on new medications for pain as the Fentanyl patches (112mcgs) plus Oramorph was no longer working, so he's now on OxyNorm concentrate 4mls/4hrs and Ketorolac anti inflammatory. They have also prescribed Omeprazole as well as Domperidone to help with nausea and stomach irritation. When his stomach pain gets really bad he says it feels like unbearable cramp radiating through to his back. He woke with the pain this morning and the above pain relief combination, plus good old Paracetamol eventually settled it. I don't know if your husband is on these meds. The next stage for Steve is a nerve block, which his oncologist is looking into with the pain team for us.

Diane x

[Trevor F]

I had 3 cycles of Folfirinox recently..... I am a pretty fit person but it did cause some lethargy and did not help at all. We stopped the course and went back to Gemcitabine and Capcitabine which had a better track record. Folfirinox is supposed to be the best thing since sliced bread but I am not so sure. My symptoms do not appear to be as bad as those that your husband had.

[JST]

Hi

We've encountered a bit of a hic up with the chemo as my husband has become jaundice. He had a stent put in a few weeks ago - which after a couple of days proved not to be working, so he went back in for the PTC procedure a second time - all rather unpleasant. He's be in hospital for nearly 2 weeks - but the CT scan he had to try and identify why the first stent was not working, would suggest no further spread of the cancer - which would indicate that the FOLFIRINOX is working, or at least keeping things at bay. Haemoglobin is low at the moment, so blood infusion today at the hospital, hopefully out later in the week. We will have to wait for the bilrubin levels to drop before he can resart the chemo. With regard to the stomach cramping - the Co-codomal as pain relief still seems to be doing the trick.