Inoperable PC

Hi Decaf and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that you've been diagnosed with inoperable pancreatic cancer and it's natural to want to seek out other people's views and experiences regarding treatment, etc.

I'm not a member of this group, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be more easily seen.

When you feel up to it, it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Thanks so much Latchbrook. I’ll update my profile with the little info I have. Most kind of you Hope you’re doing well. X

Hi Decaf. I'm just gonna send you a big hug. It's free, renewable and transferable. Please use it as often as needed xxx

Hello, must be a big shock for you.  We are all shocked by my fathered diagnosis. Same as you inoperable.  He doesn’t want any treatment. Just wants to enjoy what time he has left and be kept comfortable and deal with symptoms as they arise. He just wants palliative care

Dear Susanne, 

I really appreciatethe huge hug. Thank you so much. I am so glad I found this support group. You too take care,xx

It is indeed a big shock to me and my family. I would love to know how your dad copes with his decision and how good the palliative care is for him.

I am meeting with the oncologist next week and hope to get the full treatment plan they are going to offer me, though they have told me it is terminal and the treatment will extend my life rather than cure it. 

Thanks for responding Bossyboots. I do hope we keep in touch. I wish your dad all the best. Lots of love to you and your family.

Hi Decaf.

I am so sorry to hear of your diagnosis.

My Mum is 84 and was diagnosed with inoperable, terminal PC in April. It's confined to her pancreas and because she was fit and strong and healthy, she opted for palliative chemo. She had 6 rounds of it and it has really taken a toll to be honest. She reacted quite badly after each session, and most recently ended up in hospital after a fall - diagnosed with diabetes and resulting nerve damage in her feet as a result of extremely high blood sugar levels. In the six months, she has aged quite a lot.

Mum has decided not to have any more sessions. She's investigating radiotherapy and will decide if that's practical and desirable.

Hindsight is a fantastic thing, but my brother and I wish she hadn't opted for chemo. But she was so very strong at the time, her oncologist was confident that it would help. And it has shrunck the cancer by around 20%, which is great. But I am so very pleased she's not having any more sessions.

Other palliative care for her at the moment is a bit sparse. I don't know whether that's because her local authority is particularly stretched, or whether she doesn't need anything. But my Mum, Dad, my brother and I are all staying in touch and talking regularly. It really has brought us closer together - though we have always been pretty close.

I don't know if this helpful at all, but I am happy to share my experience of my Mum's treatment to date if you like. But everyone is different, aren't they? Emotionally, physically....

I hope your meeting with your oncologuist goes/went well. If you haven't been yet, do take someone with you to help ask questions and to make notes. I was there with Mum and there is a lot to take in. We supported each other!

Much love and hugs.

Peppersmum

Hello Peppersmum, I hope it’s ok to ask this on decaf’s post but I personally would appreciate knowing a bit more of your experiences and your mum’s treatment.I think it might help me - and others, too. Thank you. 

Hi Decaf,  I’m sorry I have not seen your message till now.  Been busy with Dad.  He’s been doing quite well.  Drs were wanting to try him on chemotherapy, but yes 82 ( but was an excellent 82 before his diagnosis).He told them why do I want to go through all that, just keep je comfortable,  He’s had his analgesia increased steadily over past weeks.  He was also put on Prednisolone high dose for a week ( he was like a different man!). More energy, eating, drinking etc.  it was like getting Dad back.  He’s now been put on Dexamethasone ( steroid) often used in palliative care.  Dose will be lowered next week and he’ll have a maintenance dose of 5 mg.    It’s enable us to take him to Glencoe to be amongst the mountains.  He was desperate to go there.  Few weeks ago I was to family -  we may not be able to make it, or he’ll be semi conscious.  However on the steroids he’s been great and he’s loved it all.   I believe good palliative care can be achieved, and we are trying to ensure reasonably good quality of life, and a dignified peaceful end.  My father wants this. 
I hope you are well enough to enjoy each day too

Depending on your age I can see how palliative chemo can extend life, but for my Dad it would be too much and at 82 he s happy to just enjoy what time he has left   I hope you and your family are all coping with your diagnosis.  It’s really hard. I come from a large family as Dad married twice.  So we are all rallying round and he’s loving all the support and love around him.  He says I’ve had the best weeks of my life now.  Life is strange.  Sending you lots of love xx