Update on my dad - gemcitabine chemo

[Mrshappy]

Hi everyone

We saw my dad's consultant yesterday who agreed definitely no more folfirinox. However she was happy for him to go ahead and try gemcitabine in a few weeks once he has recovered more from his last bout of neutropenic sepsis. I just hope he tolerates this much better and obviously it can control the cancer as long as possible.

I did talk to the consultant about progression briefly and she was very vague which I do understand - it really is a 'how long is a piece of string' question. However while my dad is currently ok - no pain, eating ok and just a little tired - it's actually sometimes hard to believe how ill he is....

Would anyone mind sharing stories of how their pc or that of their loved one did progress especially if it was stage 3 locally advanced? I am aware this in reality tells me nothing and is possibly even slightly morbid but I am really struggling with the uncertainty and, as I say, while he currently seems 'well' I just can't believe he will actually deteriorate if that makes sense?

On a different note dad has started talking about things he wants to do like hire a classic car for the day and take the grandkids to center parcs for a short break and I am really urging him to do all that while he does feel as well as he does. Has anyone else done this - had a bucket list type thing - and has it helped do you think??

Thanks as ever for the support and guidance.

Claire x

[Marmalade]

I suggest you look at some of the threads, especially those from 2016 in the carers and family section. You will see that no two journeys are the same, they get progressively weaker, some slowly and some with alarming speed.

My advice would be not to wait, (why would you?) do as many of the things on the bucket list as you can while your Dad can enjoy them, make them as easy as possible for him with lots of time and rests.

Marmalade

[sandraW]

Hi Mrshappy,

We did just that, when my husband was on his chemo break we had 2 weeks in Gran Canaria with our best friends, then a month later we took our 15 year old grandson to London for 4 days then took our 2 granddaughters to Disneyland Paris for 4 days. That was the August my husband died the following April, it made some wonderful memories for us all, they children were aware granddad would never get better, and it was a very special time for us all. take care sandrax xx

[toodotty]

oWith Stage III cancer he should have a much better outlook and life expectancy than those of us with Stage IV. The weakness will be partly due to the sepsis but maybe diet related as well. I was really feeble at one stage because I just couldn't eat anything. Keep his strength up and his morale. Don't let me right him off so soon, he could still have several years ahead. I think that there is a Nanoknife clinical trial for Stage III patients, it might be worth looking at this? It may give you other options and a second opinion.

toodotty

[dmschampion]

Hello Claire. As everyone says each journey is different. You may remember we exchanged posts a few weeks ago and I told you my husband was Stage 3 and had struggled with Folfirinox so moved onto Gemcitabine and his tumour had even shrunk by 25%.

I’m now sorry to tell you that he was admitted to hospital with an infection which turned out to be i his bile duct stent. It led to sepsis and then kidney failure, and after a brief spell in ICU passed away last Monday. His ending, unlike that he may have had by going all the way through the cancer journey, was peaceful and painless so I have to be grateful for that.

From being ill in November he managed a total of 8 months from diagnosis in January - a terribly short time even for this dreadful disease ...

I know that’s a different ending to what you are hoping for but I take comfort from the fact that he is no longer suffering and I am forever grateful for the passionate care he was given particularly in his last week

Nicola x

[Mrshappy]

Thank you everyone for taking the time to reply.

Nicola - I am so very sorry to read about your husband. It really is a terribly cruel and unpredictable disease. I am glad you have found some comfort - my dad's worst fear is to die in pain so I completely agree with what you are saying. Much love and strength to you over the coming weeks and months.

Claire xxx

[toodotty]

Hi dmschampion, I am so sorry to hear about your husband, it is shocking that he died as a result of a blocked bile stent and as you say, such a short period of time.

Sending you a virtual huge,

toodotty

xxx

[dmschampion]

Thank you both. His funeral was yesterday and we are all still shocked

[PCUK Nurse Rachel R]

Dear dmschampion

I also wanted to offer heartfelt condolences for the loss of your Husband from the Nurses here. Our thoughts are with you as you grieve your brave Husband. It was lovely to hear that he was at peace towards the end and that he received such good care. We are here to talk if ever you wish.

With kindest wishes,

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707