What happens now?

[Mrshappy]

Hi all,

I only posted on here once before just after my dad was diagnosed and you were all so helpful. We are much further on now and it isn't looking too hopeful sadly. My 68 yr old dad was diagnosed with stage 3 locally advanced pc in April. He has had 2 rounds of folfirinox and ended up in hospital both times with neutropenic sepsis, very poorly, even though the second time was a reduced dose. They have now basically said no more chemo. We have yet to see his consultant (he only came out of hospital a few days ago) but I am wondering what happens now....

He had a scan while in hospital which showed his tumour hadn't grown but hadn't shrunk either so the chemo looks like it did control it to some degree?? (A scan he had a few months after diagnosis showed it has grown so was definitely active if that makes sense).

I really want to be prepared to know if there are any more options for any form of treatment. Or is it palliative care now? And what sort of prognosis are we looking at? I also want to know how the disease is likely to progress - when he isn't suffering from the chemo he is ok in himself (tired and lacking appetite but ok). What is likely to happen and how long will he feel ok??

I will be going to his appointment with him so will ask these questions to the consultant of course but my dad almost doesn't want to know (understandably) so I want to be prepared in advance if possible.

Thank you all for any help or advice x

[Veema]

Firstly I'd give the nurses a ring to see what options are available. Just because he hasnt tolerated folfirinox doesn't mean he wouldn't tolerate another chemo regime such as gemcap and I'm pretty sure abraxane is available now, but obviously I'm not a medical professional. They will be able to offer advice on what you may be able to ask for.

It's impossible for any of us to say how the disease will progress with your Dad or what his prognosis will be, all we can tell you is our own stories. My husband deteriorated quickly once chemo stopped, but this is not always the case and others have had a decent quality of life for some time. Also, at the point that chemo stopped, my husband's cancer had spread to lungs, liver and lining of the abdomen, so was further advanced that what your Dad's seems to be.

Try to focus on the here and now...it's hard, but it will make you feel better and will make your dad feel better too. None of us are promised a tomorrow, in some ways, knowing your Dad's situation makes you able to make those memories and prepare for a time when he won't be here.

Much love and strength

Vx

[PCUK Nurse Jeni]

Hello Mrshappy,

Thanks for your post, and thanks Veema for suggesting a call/email.

I also agree with veema - Folfirinox is extremely toxic and difficult to tolerate. It is an aggressive regime, and can cause neutropaenic sepsis frequently - I think he should have some time off to recover from these 2 traumatic events to his body. Neutropaenic sepsis can cause the person to feel quite debilitated and having 2 episodes is not easy.

However, there are other drugs which are far less toxic.

Has he had any steroids at all for his appetite (assuming he is not diabetic)? These certainly can help with appetite and energy levels.

Perhaps give us a call or drop us an email and we can chat through this further?

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Mrshappy]

Thanks both for the help and kind words. He has just got his appointment through with his consultant on the 14th so can ask lots more questions then. Just going on what was said last time, she actually didn't want him to have the second round of folfirinox due to how he reacted to the first round - at that point he did ask about other possibilities and she told him there were other options but they still weren't risk or side effect free and didn't have the same evidence for being as 'beneficial' anyway.... I obviously know nothing about this but what she said made sense to some degree ie he could still feel rotten and be very ill and it do nothing to control the disease.

It would be great to discuss what possibilities there are with one of the nurses but need to find time when I don't have my 3 kids around (which is hard now it's the holidays!!).

I think he has been on some steroids while on chemo but not on anything at the moment.... That would definitely be worth asking about.

Thanks again both x

[dmschampion]

Hi Mrshappy. We are in similar situations in that my husband was diagnosed stage 3 and had two terrible rounds of Folfirinox and ended by in hospital with sepsis and C-Diff

His consultant told him no more Folfirinox and we had the discussions of no more chemo at all and focus on quality of life

However 6 weeks later he was feeling much stronger and so she agreed he should try a much gentler chemo - Gemcitabibe. He has now had 3 cycles (3 months) and coped so much better. The scan this week showed a shrinkage of 25%

He still has pain and won’t ever be cured as surgery isn’t an option but continuing with this chemo and possibly radiotherapy in a few months time will hopefully keep it in check for some time

So talk to your consultant about alternatives and don’t give be up!

[Mrshappy]

Thank you so much dmschampion. I know every story is different but that's really positive to hear especially given the similarities even to the fact my dad had c diff too!) .... He has really suffered as your husband has....

Can I ask how he did find the gem chemo - did he have many side effects at all? Was he able to continue with some normal quality of life??

When we speak with the consultant I will definitely discuss all the options (I have just spoken with Rachel on the helpline who was so helpful - thank you!!).

Thanks again all x

[dmschampion]

Hi. With Folfirinox he had sickness, diarrhoea, neuropathy and his hair thinned. He also lost 4.5 stones in weight from just prior to initial diagnosis to his time in hospital (5 months). Then of course the 2 infections - one each for each cycle.

He has had 9 doses of gemcitabine so far. It’s 3 weeks on, 1 week off and is only 30 minutes vs 5 hours for Folfirinox...

Side effects have been the odd bit of shivers, a few bits of pain immediately afterwards, a very sore mouth, plus the usual fatigue and but much more manageable. He has good days and bad days - the 2 days after is the worst but generally is stronger and us able to do a little bit of gardening or a short walk.

He does take a few meds ... 120mg of slow release morphine (and the very occasional top up of Oromorph for breakthrough pain), plus anti sickness and steroids. We involved palliative care team very early on and they managed his pain meds until they were at the right level. They are a fabulous team ... so push for a referral

Good luck and let us know how you get on

Nicola x

[Mrshappy]

Thanks again Nicola - so helpful. My dad is currently on 60mg slow release morphine and rarely needs oramorph anymore. He is also on gabapentine and paracetamol but oddly since his first round of folfirinox his pain has been much better. He was hopeful that meant the tumour had shrunk but his latest scan doesn't seem to show that Anyway it sounds like he had a very similar reaction to your husband to the folfirinox. Very similar.... And I am certain his consultant would not allow him to have any more and my dad wouldn't want it anyway.

I will definitely talk about other options such as the gemcitabine which certainly sounds much more manageable (although I know everyone reacts differently and I suspect he may need a 'break' to recover from the folfirinox and accompanying infections etc).

He does see a nurse from the local hospice but I don't think is actually under palliative care as such so I will really chase that up. Lots of people on here have recommended it.

Thank you again - best wishes to your husband and you.

Claire x