First scan results after session 4 of Folfirinox....

[Kerri9499]

Hi all

I just wondered if anyone else had experienced this...

Mum had her 4th Folfirinox treatment last Tuesday and to be honest has had a pretty crappy time of it since. The last 3-4 days though she has had a new symptom which is griping stomach pains and aches just below the belly button. When it started it was quite intermittent but since yesterday it is more constant. It was accompanied by diarrhea but the last episode of that was around 8am this morning. I have been giving her loperamide since yesterday. She hasn't been sick but has felt slightly nauseous a couple of times. She is also very tired, drained and lethargic. Not really got much of an appetite but has managed some porridge and a little bit of toast this morn. She is also belching all the time despite using omperazole, this has always been the case but seems a little worse. I had already upped her creon last week and apart from stools being loose she says nothing seems to be fatty or pale so i don't think that's the problem.

I suppose what i'm worried about is a partial duodenum blockage as i know the tumour was very close to or against the duodenum wall before chemo started. I'm so scared the treatment isn't working and that it's continuing to grow. She had a CT scan on Wednesday but we won't get the results until Tuesday. I did tell our clinical nurse yesterday about the diarrhea and pain but i haven't told her that the pain seems to have continued today without the diarrhea. I'm wondering if i should call again before we hit the weekend....

Kerri x

Edited February 15, 2014 by Kerri9499

[J_T]

hi Kerri, sorry to hear you mum is not feeling too good.

I very definitely would ring again before the weekend! Someone should come and get your mum's pain under control. Our Mac nurse was excellent at this.

Don't ever hesitate.

Julia x

[PCUK Nurse Jeni]

Kerri,

Will email you.

Jeni, Support Nurse.

[nikkis]

Hi Kerri,

I am sure Jeni has given you lots of good advice, but I did want to say that my husband had terrible diarrhoea, accompanied by pain that started around the 4th round of folfirinox. The diarrhoea stopped when he finished the folfirinox, and the pain is now improved. We don't know whether this was a coincidence, as he undoubtedly has had some degree of obstruction at times, but it is undoubtedly tough on the gut.

Hope you get some answers and she feels better soon,

Nikki

[Kerri9499]

Thank you everyone for your replies and thank you to Jeni who took the time to email me twice with lots of good info and reassurance that I was doing the right things for Mum!

I'm happy to say after a pretty crappy and worrying evening yesterday that she slept fine, woke up feeling and looking much better, and aside from a couple of belly twinges when she was showering she has eaten a big bowl of cereal with no ill effects, pain or running to the loo! Still keeping a close eye but hoping it may have passed now. First scan results since starting chemo on Tuesday so will have a better idea of what's going on then.

So glad I found this forum, really does help to be able to talk to people who understand

Kerri Xxx

[Cathy]

Hi

Best of luck for the scan results on Tuesday.

Cathy xx

[Kerri9499]

Thanks Cathy, just hoping and praying x

[Kerri9499]

Hi all

Got scan results this week and after 4 folfirinox treatments both the spots in lungs and main tumour are stable, so relieved! Doc said that although there has been no shrinkage yet she was still pleased and that a scan at the 2 month point was relatively early so all in all we are very happy! The scan also showed a little bit of inflammation in stomach which is probably causing the tummy troubles (pain now gone but the other problems persist). They did do a blood and stool test though to rule out anything untoward.

Mum has been so tired and lethargic the last few weeks that her oncologist offered her a 2 week chemo break although her bloods were fine. Mum jumped at the chance as was dreading going in for treatment the next day when she didn't feel as though she'd gotten over the last session. She has been great ever since, loads of energy, out and about, laughing, cooking, it's been lovely. I have to admit that I don't feel comfortable with it although I've kept my mouth shut for once as believe it's her choice, is this a common thing to take a short break? Just trying to tell myself that they wouldn't have offered it if they thought it may be detrimental and instead focussing on the CT result!

Hope everyone else is doing ok, so pleased to read about Paul's great CT results Nikki, fab news, hope he feels better soon in regards to the chemo effects.

Kerri xxx

[Cathy]

Hi Kerri

This is great news. PC is difficult to treat so a stable tumour is fantastic. You never know, there could be a reduction in the next scan or the one after that. Just as there wasn't one this time doesn't mean there won't be next.

Don't worry about having a small break. My Jonathan did as well after cycle 4 and boy did it make a difference to him and his energy levels. This continued after he restarted the chemo again as the 5th and 6th cycles were far more easily tolerated. Really it's about providing quality of life for your Mum which it sounds as if it is doing so. A 2 week break made no difference to the next scan Jonathan had (I.e was still stable). Enjoy the break. It's a break for you too remember....

Cathy xxx

[PCUK Nurse Jeni]

Yes Kerri - as Cathy says, don't worry at all about a small break.

This happens very frequently throughout a course of chemotherapy, to many folk, so don't feel worried about it. Its simply to let the body recover and become stronger.

Glad the scan was stable! Great news!

Jeni.