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Fernack45
Posts: 15
Joined: Mon Dec 03, 2018 6:26 am

My husband Dan

Postby Fernack45 » Tue Jan 01, 2019 1:30 pm

Hi all, I have been reading the posts on this forum since my husband was diagnosed with stage 3 PC five weeks ago. I have found the posts invaluable in helping me get my head around the diagnosis and for what is to come so thank you all.
Dan is my husband aged 45. I am a registered nurse. We celebrate 20 years of marriage on the 15th January. We have 2 daughters, aged 18 and 10.
Dan started with vague abdominal and back pain and GP said it was probably muscular pain.. If only eh... He had an ultrasound scan, blood tests etc. Was admitted to hospital on 28th November due to deranged liver function and jaundice. Whilst in hospital he had a CT scan which showed a tumour in the head of the pancreas, invading surrounding blood vessels. He had a stent fitted which relieved the jaundice after a couple of weeks. Discharged from hospital to await Oncology appointment.
We had that appointment on 14th December and it was confirmed only palliative treatment was available.
Went for pre treatment visit at the chemo unit yesterday where we were told that chemo. Folfirinox, is due to begin on Jan 8 th. In the meantime we have to wait for a date for insertion of the PICC line...
Dan is in more or less constant pain despite 40mg zomorph twice daily with oramorph for breakthrough pain. Also on gabapentin, lansoprazole, cyclizine and creon. He has lost 3 stones in 2 months and hasn't eaten anything for a week. He does take supplements.. When he can stomach them.
No real point to this post other than for me to offload and tell our story so far.
Thanks for reading x Ann x

Sandiemac
Posts: 69
Joined: Tue May 10, 2016 11:27 am

Re: My husband Dan

Postby Sandiemac » Tue Jan 01, 2019 3:53 pm

You're not alone, Ann. There are a lot of people on here who have gone through the same scenario and have experienced the same shock and disbelief. I found just coming on here and offloading to those people was a real help as they just 'get it'. The nurses are also very supportive so don't hesitate to contact them. Despite your own nursing knowledge I bet you still have lots of questions.
We are here when you need us.
Sandie x

Undyddarytro
Posts: 19
Joined: Fri Nov 23, 2018 9:29 pm

Re: My husband Dan

Postby Undyddarytro » Tue Jan 01, 2019 6:37 pm

Everything you have said takes me back to July 2017 when my husband had the same diagnosis and had lost a lot of weight etc. Within two months of starting the chemo treatment, he became more or less his old self. No pain, could eat and gained back all and more of the weight lost. It took a bit of getting used to which tablets to take re diarrhoea and constipation etc. We fed him anything and everything and added cream and calories to everything. He has tolerated 24 rounds of Folfox and 15 5fu treatments and has been very well until this month when he started chemo radiation. Something happened and his whole digestive system shut down and we have spent the last ten days over Christmas in hospital. Despite this he has not missed a single radiation treatment and we go back tomorrow. Keep being ready for the worst and hoping for the best. There are some people who survive for years.It does help to know that others are suffering the same anguish not that it makes it any easier.

Annabelle
Posts: 9
Joined: Wed Aug 29, 2018 8:56 pm

Re: My husband Dan

Postby Annabelle » Tue Jan 01, 2019 10:57 pm

Sending you love and positive vibes Ann, my husband was diagnosed with Pancreatic Cancer in June 2018 our lives were turned upside down, we waited four and a half months for treatment, he is now having folfirinox chemo which he is tolerating reasonably well (just had 5th cycle) There are lots of people on here who can offer support so hope they can help you (and me) on this roller coaster journey. Love and hugs ((xx))

drtzzr1100
Posts: 7
Joined: Fri Dec 07, 2018 6:20 pm

Re: My husband Dan

Postby drtzzr1100 » Wed Jan 02, 2019 2:17 pm

So sorry to hear this my husband is 58 and was told on 1st October this year he had stage 4 metastatic P.C. devastating news for all and he has now been given 2-4 weeks to live. I truly hope your husbands journey is more positive there are some good news stories around and I pray for you and your family to give you the strength to get through this x

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: My husband Dan

Postby Justamo » Fri Jan 04, 2019 10:59 am

"No real point to this post other than for me to offload and tell our story so far."

There is every point to your post Fernie. You need to talk; probably not best to discuss your very real fears with your husband, family are sometimes not the best listeners, so this forum will offer you exactly what you need - a friendly and helpful ear, at almost any time of the day or night. There's always somebody logging in - sometimes from the other side of the world - so time of day doesn't really matter.

Our nurses are experts in their field, there is probably nothing in your story that somebody else hasn't experienced, and despite their own misery everybody is anxious to help.

Just be aware that there are no strangers on this forum, just friends you haven't met yet.
Love and prayers and comforting vibes.
Mo

Fernack45
Posts: 15
Joined: Mon Dec 03, 2018 6:26 am

Re: My husband Dan

Postby Fernack45 » Fri Jan 11, 2019 5:52 pm

Had first round of folfirinox on Tuesday. Vomited everyday since and terrible hiccups for hours on end. Anyone else had this? Thank you.

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: My husband Dan

Postby Justamo » Fri Jan 11, 2019 7:49 pm

Peter experienced non-stop hiccups too. We found that tiny sips of iced water helped while he was awake, but it didn't prevent him hiccuping in his sleep. Good luck with the chemo.

Fernack45
Posts: 15
Joined: Mon Dec 03, 2018 6:26 am

Re: My husband Dan

Postby Fernack45 » Fri Jan 18, 2019 9:30 pm

So yesterday we attended oncologist for pre treatment appoin tment before 2nd round of Folfirinox. Dan has not really been well since first treatment. Nausea, vomiting after eating anything and diarrhoea. Whilst waiting to see oncologist he vomited all over the floor in the waiting room. Oncologist admitted him to rule out gastric outlet obstruction rather than side effects of chemo. He had a Abdominal Xray which showed no evidence of obstruction and a CT today, still waiting for results. I am strangely hoping it is an obstruction as then he will get a duodenal stent and start feeling better and be able to eat. Lost another stone in past month, that's 4 in total in about 3 or 4 months. Dan has convinced himself that the cancer has spread. Also, not having the planned chemo on Tuesday. Keep fighting everyone... Xx

Fernack45
Posts: 15
Joined: Mon Dec 03, 2018 6:26 am

Re: My husband Dan

Postby Fernack45 » Sat Jan 26, 2019 12:26 pm

Dan was discharged from hospital last Monday and generally felt better. Only vomited once, out of the blue, not after eating or anything. He's has managed a slice of toast nearly every day but that's it.

We saw oncologist again yesterday. He's concerned that Dan has lost another stone since end of December. We are going ahead with the second cycle of chemo on Friday but minus the irinocetan in hope of less toxicity. The thing that concerned me was that oncologist did say that he would question the benefits of the chemo if Dan had side effects again. CT scan showed stable disease and no gastric outlet obstruction.
Keep fighting xx ♥️

toodotty
Posts: 165
Joined: Sat Jun 09, 2018 4:17 pm

Re: My husband Dan

Postby toodotty » Sun Jan 27, 2019 4:07 pm

Hi Fernack45,
The first couple of rounds are the worst, it is a big shock to the body all those toxins. Your Oncologist knows what he/she is doing if they are dropping one of the chemos, (irinocetan, I call liquid flu, it makes me feel absolutely dreadful and I missed it out on 2 cycles as well). Your Oncologist will tailor each round dependant on how you feel and the effect it has on your bloods, we are all different so it isn't an exact science.

I too was in a lot of pain before I started chemo, I had a pulsating alien sat below my ribcage bleeding the life out of me. By round 4 the pain and the pulse had stopped and I started to feel much better. I know at Stage IV PC that there is no cure for me, but I have had a really good six months and should now be going back into "maintenance" chemo. I regained the weight I lost during early treatment and rebuilt my fitness so this doesn't have to be the end just yet.


Keep hope,


Erika

PCUK Nurse Jeni
Posts: 1050
Joined: Mon Jun 14, 2010 1:30 pm

Re: My husband Dan

Postby PCUK Nurse Jeni » Tue Jan 29, 2019 10:12 am

Hi Fernack,

So sorry to read all of this - the weight loss is of course a concern.

Its understandable that the oncologist would be thinking about therapeutic benefit versus quality of life - its a difficult decision to make, but having such severe side effects is also very debilitating. Perhaps as Erika said, it will be better minus the Irinotecan, as this is really a tough drug to tolerate.

Meanwhile, has Dan seen a dietitian? And if there is a need for it, has he been started on Creon? (apologies, I am not sure where in his pancreas the tumour is). Or, alternatively, has he been checked for diabetes? I am assuming his glucose levels have been checked if he has been on Folfirinox and dexamethasone as a take home drug?

Has there been any discussion about a feeding tube at all with such ongoing weight loss, to enhance his oral intake - which is not much as you have written? Such as naso-gastric feeding? Is this something which can be explored perhaps? Maybe you could ask the oncologist? Or, the dietitian?

The only other thing is that maybe he could be started on a different, less toxic chemo regime if he has a similar problem after the next cycle of chemo - this is something which can be discussed also. However, it might be wise to give him a few weeks off chemo totally, to see if he regains his appetite and any weight, and stops vomiting - if he does, then you would know it was chemo related.

Please do email us or call us if we can help further Fernack.

Kind regards,

Jeni.


Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707