Mum with advanced inoperable - please help me

[Wendy]

Hi all. My mum went into hospital two weeks ago with 'shadows on the lungs' after a chest infection. two days ago she was told she had inoperable PC, with metastes on her lungs, liver and lymph nodes. We met the oncologist yesterday, I was horrified initially as he offered no treatment, just palliative care until I started to talk about Gemzar and Teciva. I am 7 weeks pregnant with her first and only grandchild and she is very motivated to meet him/her. The oncologist seemed to wake up a bit then (I got the strong impression he thought she should just shuffle off and die). Tomorrow consequently she is having a biopsy of a lymph gland and a mammogram as there is a very outside chance the primary is not in the pancreas but in the breast as her PC markers are low, and she has no jaundice or diabetes.

What can I do to help her? With Gemzar she may have 6 months, without she has 1-2 months, not long enough to see the baby. Is there anything else I can push for? I can pay for her Teceva and have told the oncologist this. She is on a 25mg Fentanyl patch with 10ml Oramorph every six hours. They started her on an anti inflammatory yesterday beginning with dextro....what is this for? What troubles her most is she keeps choking and gasping for breath - is there anything that can help her here that I can insist on?

I feel I have to fight for her as I have some medical knowledge, her husband is being passive and mum is too weak to fight. ANY help is much appreciated, as this is all so new to me. Thank you so much.

[Julie]

While i cannot give you any advise, i just wanted you to know that i am thinking of you and your mum, and will add her to my prayers.

best wishes julie

[Wendy]

Julie - believe me, it is much appreciated. Thank you so much.

[Wendy]

Sorry: in my first post I said I was 7 weeks pregnant. I am actually 33 weeks pregnant, 7 weeks from my due date.

[Wendy]

Hi Penny

All this is really useful. I have just heard from mum and I think the dexamethasone is already working as she has eaten more. I am really sorry about your husband but it is useful for me to hear about differing symptoms. When I first thought of PC before the CT scan, I discounted it as mum didn't have diabetes, jaundice, never smoked etc etc.

I hadn't heard of Televac so I am off to research it now.

She is going to get a Macmillan nurse tomorrow I think, so thank you for telling me that they might be able to help with the breathing.

In fact, thank you for everything!

[rosieh]

Wendy - I'm sorry to hear about your mum. I hope you can find some way of helping her. Be sure to get as much support as you can from your Macmillan Nurse.

I can't really offer much advice, but my dad has PC and he hasn't had any jaundice either (or pain, thank goodness).

He was diagnosed with metastatic PC in early March (has spread to his omentum) and he wasn't offered treatment either - although he says he doesn't want any.

Best wishes.

Jan

[Wendy]

Dear Jan

My mum hasn't decided yet whether she wants to go for any form of chemo. Of course I want her to, to try to improve her odds, but if she says no, I won't nag her. How did you cope with your dad rejecting treatment? The thing keeping me going at the moment is research into trials and chemo!

Wendy

[rosieh]

Wendy - the Consultant told my dad that his PC was inoperable and had spread, but that "if he picked up a bit" (he'd lost a lot of weight and was very weak) then they might be able to offer palliative chemotherapy. It was always very clear that this was to extend his life and not cure his cancer. Dad never saw an oncologist as he was discharged from hospital after diagnosis and never called back - probably because he said he didn't want treatment.

Dad is 68 (and I do think the doctors felt this was "old" in terms of how much treatment they would offer). His instant reaction to his diagnosis was "well I hope that this is quick because I don't want it dragging on". I think this relates to both his quality of life (which is badly impaired due to him being bedbound) and also him not wanting it to "drag on" for mum and the family.

I told him he should find out more about what might be offered and what it could do for him, and that he should think about himself and not family, but he was adamant all along that he has reconciled himself to dying and will refuse any treatment that prolongs things.

I guess everybody is different. Part of me wonders if I should have pushed more, got more facts and figures, etc. etc. But then I have battled with Dad just to take his meds properly, so the chances of me getting him to consider chemo would have been slight!

Your situation is very different of course, with the baby due. My dad says he has no "unfinished business" on this earth, and that's probably why he feels the way he does.

I hope you find something that helps. The Johns Hopkins site seems to be full of info (there is a forum there, too). I know it's American based (where most PC patients seem to be offered treatment) but you might find some useful things there.

http://pathology.jhu.edu/Pancreas_chat/

[Wendy]

Jan - if there was no baby my mum would feel exactly the same way as your dad. She has a dread of being sick and feeling fatigued. I got the same impression as you - Mum is 66 - that the onco thought that was 'old'. My mum sounds in a similar state to your father in that she is very weak and has lost a lot of weight, however her appetite is showing signs of increasing.

I shall check out the Hopkins site, many thanks.

I think you have been very unselfish by NOT pressurising your dad to have treatment. Some people would do it to make themselves feel better (I know that there is an element of that in me). I guess we are trying to parent our parents through this!

[Guest]

Hi Wendy .... My Mom (71 years old) was diagnosed with inoperable PC March 7, 2007 and is in the same situation as Jan's Dad. They also happen to live in the same town as each other (Widnes, Cheshire), and I am here from Canada looking after my Mom.

My Mom is under Professor XX who is based out of the XX at XX . They are running the Telovac Trial which opened in October. My Mom was initially offered it but after having to have a stent put in for bile duct blockage resulting in jaundice, it was determined that she was too weak for the trial. The second chemotherapy capesitebene (sp), is a very aggressive chemo and has significant side effects which she could not have handled.

You kind find lots of info about Professor XX on this website under "Spotlight on the Experts" section, and at www.liv.ac.uk/Surgery/JPN.html

My heart goes out to you. You have so much to deal with at this time with your first baby soon to be born and now to be faced with this. My prayers are with you and your Mom and I hope for you both that she can fight the beast long enough to see her first grandchild born. I am fast learning that the mind is a very powerful thing and your Mom may well reach that goal.

Barb