A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
mogs
Posts: 27
Joined: Wed Feb 26, 2014 9:45 am

Re: Feeling Alone

Postby mogs » Thu Feb 27, 2014 7:07 pm

What a frustrating afternoon! I feel like we are going around in circles. Finally met with my mums consultant who basically didnt want to tell us anything but kept saying 'You're better off asking the Oncologist on Monday!' He apologised for the way she had been treated so far and basically blamed the specialist hospital for taking so long! When I asked why someone hadnt spoken to us or why one of the specialist team werent with us this afternoon i was told 'Well they cant do anything so they dont want to see her'.All he has told us is that she will need chemo. When i asked about any nurses to help us with my mums pain relief (as we still dont have this under control) again i was told, they will sort that out next week. I just feel that we are alone dealing with this at the moment and constantly being made to wait. So sorry to rant but feeling very frustrated. I just want to help her as much as i am able to. Thank you so much for asking
Cara x

janem
Posts: 29
Joined: Fri Nov 01, 2013 10:45 pm

Re: Feeling Alone

Postby janem » Thu Feb 27, 2014 7:15 pm

I'm sorry to hear your news I remember when my dad was diagnosed we felt so alone and it seemed to be a long time between appointment. I just want to say good luck and you have come to the right place for support. I thinking of you
Nikki xx

mogs
Posts: 27
Joined: Wed Feb 26, 2014 9:45 am

Re: Feeling Alone

Postby mogs » Thu Feb 27, 2014 7:47 pm

Thanks Nikki. It's comforting to know that this wait is 'normal'. X

Fifi

Re: Feeling Alone

Postby Fifi » Thu Feb 27, 2014 9:32 pm

Unfortunately Cara, that doesn't shock me anymore. No one seems to put out all the stops, no one seems to want to go that extra mile.
I feel frustrated for you. I know Monday seems such a long way away.

What are you seeing the oncologist for? Has your mum had tests that she is getting results for?

As for the pain, I can't understand why no one is helping there. Does she have any pain relief at all?

Leila xx

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Feeling Alone

Postby Cathy » Thu Feb 27, 2014 10:30 pm

Hi Cara

I am sure that the wait will feel like an eternity. Sometimes not knowing is the hardest thing.

I wonder if there is anything you can do in the meantime to help with pain control. It might be worth a call to her GP tomorrow morning to ask for a prescription if they would do that - when my Jonathan was fist diagnosed he managed pain control with codeine and paracetomol.

Best of luck

Cathy xx

mogs
Posts: 27
Joined: Wed Feb 26, 2014 9:45 am

Re: Feeling Alone

Postby mogs » Fri Feb 28, 2014 8:36 am

My mum has been given MST and oramorph to take. She also has an anti sickness tablet but I'm not sure of the name. At the moment she is still feeling very sick in the mornings (which means she's not eating) and then in pain during the night. She is only sleeping for a few hours before waking in pain and having to take more medicine. She's also had a few funny episodes where she is sweaty and shaking and feels as if she is going to pass out!
All her test results are now back. Her blood is 'abnormal' and we know the cancer is inoperable and has spread. They've said that she will need chemo and the meeting on Monday is to discuss her treatment (I hope) and hopefully refer her to a community nurse. I'm finding the waiting so frustrating but feeling calmer today.
Cara x

mogs
Posts: 27
Joined: Wed Feb 26, 2014 9:45 am

Re: Feeling Alone

Postby mogs » Tue Mar 04, 2014 5:19 pm

We met with my mams doctor from the cancer hospital yesterday who was baffled as to why she hadnt had a biopsy - especially when the specialist team requested one on Feb 18th. I told him i had spoken to her consultant's secretary (the week previously) to chase this up but was told 'She doesnt need a biopsy. I dont know where you are getting your information from!' We decided to go ahead with the chemo without the biopsy as they are pretty certain it is cancer and we've already been waiting too long. Was this the right thing to do??
Also, we didnt ask/he didnt tell us how long she would have the chemo for. (Cant believe we didnt ask this - I even had it written down!!)They didnt really give her hope yesterday but they didnt really tell her how bad the prognosis was either -which I had been nervous about. We have looked into purchasing Abraxane and are waiting for a quote. The doctor expalined that the benefits are good but the side effects are worse. She wants to try it if possible but im so worried that she's doing so in not realising how how quickly this illness could take effect. I'm really feeling guilty/torn that we may be putting her through all this/make her ill without her realising the prognosis but i dont want to take any hope from her at the moment as she's determined to fight this. Is it normal to feel this way as its constantly going round and round in my head?? Sorry for all the questions x

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Feeling Alone

Postby MSH » Tue Mar 04, 2014 7:33 pm

Hi Mogs,

It's always best to get a biopsy but not always possible. They looked at two biopsies plus the stent brushings in my case without being able to get a tissue diagnosis. If the tumour is in the body of the pancreas it might be difficult to access, but in your Mum's case could they take the biopsy from the ovary? At least that would confirm that this was metastatic disease and hence inoperable or is there other evidence of spread, for example into lymph nodes?

As far as chemotherapy is concerned the best results are from a combination of drugs known as Folfirinox. This is quite a tough regime and isn't for everyone but is usually given fortnightly for a total of twelve courses, though most people can't tolerate the full course of treatment. I'm not quite sure why you're looking at purchasing Abraxane privately, to do so you would need a private prescription. The US authorities have allowed a combination of Gemcitabine and Abraxane but the initial studies show this to be less effective than Folfirinox. The prognosis for metastatic pancreatic cancer is awful with average survival of 11.1 months with Folfirinox and 8.5 months with Gem/Abraxane. These are average responses and of course individual responses do differ.

Has your Mum got the pain issues sorted out? The focus should probably be on her quality of life.

I hope she responds well to her treatment.

Mark

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Feeling Alone

Postby Didge » Tue Mar 04, 2014 8:02 pm

My bf didn't have a biopsy. we were told that the radiologist could tell it was an adenocarcinoma from the scan. But it was operable (just) so they confirmed that afterwards and tested for aggressiveness. I suppose what I'm saying is that it doesn't always need a biopsy to confirm and biopsy results can be misleading anyway. How and what to tell people who aren't asking the questions themselves is a minefield. Like all these decisions you just have to tell yourself that you are making the best decisions you can at the time in very difficult circumstances and try to remember that later on! I think with PC they are tentative about dishing out the statistics unless they are requested. I know with us, the oncologist asked if we were aware of the statistics and we said we were and they just directed us to the Cancer Research UK website if we needed 'accurate' information! I am wishing you luck and am thinking of you in what is always a terrible time.
Didge x

mogs
Posts: 27
Joined: Wed Feb 26, 2014 9:45 am

Re: Feeling Alone

Postby mogs » Tue Mar 04, 2014 8:26 pm

Thank you both for for taking the time to reply. The doctor mentioned the other drug but said that he personally doesn't like it as it's too toxic. I'm just worried about what he's not telling us because she hasn't asked and I don't feel that I can ask when she's there. He's only offered her chemo and without a biopsy. Its in the body of the pancreas, her ovary and there are deposits in her peritoneum as well. He asked if he had her permission to go ahead with the chemo as he/my mum didnt want to delay things any further. However he did tell me to google folfirinox and I will read more on it. I naively thought abraxane would have given her a better chance. It has to be her decision and I will support her in whatever she decides to do but just want her to know all her options. Thank you again both x

mogs
Posts: 27
Joined: Wed Feb 26, 2014 9:45 am

Re: Feeling Alone

Postby mogs » Tue Mar 04, 2014 8:47 pm

She also saw a pain relief doctor today. They've now increased her MST and changed her sickness tablets which is great x

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Feeling Alone

Postby RLF » Tue Mar 04, 2014 8:54 pm

I know the feeling of wanting to ask lots of questions but not knowing if you are allowed to. Ask your mum if she minds you asking questions or if she would rather not know things and if she says she doesn't want to know then you have to accept it and just help her as she needs. The nurses on here will be able to answer a lot of your questions in a broad way, nobody is the same and they won't have every piece of info in front of them but they'll be honest.

The Folforinox chemo seems to be again different for each person, so hopefully she'll be one of those who don't suffer too much. It seems to work quite well for people though, but sadly isn't a cure. You're never alone though, any time you feel it just think there are lots of us out there feeling the same way. People are willing to help in their own ways, and the Macmillan centers are great to drop in at and have a chat (or spontaneous cry if you are me) when you need them. There are lots of things to help if you want to use them :)

Hope things move forward more smoothly for you,
Rob
x

mogs
Posts: 27
Joined: Wed Feb 26, 2014 9:45 am

Re: Feeling Alone

Postby mogs » Tue Mar 04, 2014 9:44 pm

Thank you Rob. That's so kind and helpful. I wanted to change the title of my post to 'feeling calmer' but don't know how to!! I honestly think she doesn't want to know and I have to respect that. It's so hard accepting that there's nothing we can do. I thought I was coping well until I had to return a parcel in a store at the weekend and found myself crying in the changing room as everyone seemed to be out shopping with their mums! They must have thought I was mad!! I can't believe the strength of the people on his site and the continued support that you give whilst we are all going through a horrendous time. It really does teach you to appreciate the little and important things in life x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Feeling Alone

Postby Cathy » Wed Mar 05, 2014 2:27 pm

Hi Cara

I know you feel that you can't do anything and ultimately with the diagnosis you may not be able to but your advocating for your Mum as you are will make a huge difference to her. I have often said that I wonder how people manage to navigate their way with this disease without loved ones fighting for the very best for them so keep on keeping on!

Cathy xx

PCUK Nurse Jeni
Posts: 1063
Joined: Mon Jun 14, 2010 1:30 pm

Re: Feeling Alone

Postby PCUK Nurse Jeni » Wed Mar 05, 2014 2:59 pm

Hi Cara,

Sorry to hear of the roller-coaster you are going through.

Just a few things to clear up - Mark is right about not always being able to do a biopsy. When a person is known to be operable, then you don't have to have a biopsy, but go straight to surgery. However, it is NOT possible to tell what type of tumour a person has by doing a scan. This can only be told by taking some tissue,and examining it under a microscope, and by staining it with different things to check what reacts. They also slice the tumour down into very microscopic pieces to examine on slides, and only then can they say 100% what TYPE it is. However, 90% of pancreatic tumours are mainly of one type - adenocarcinomas. You can possibly crudely determine if it is a different type by the persons symptoms, and by doing blood tests. But, tissue must be examined for a histological diagnosis.

Chemo - I would doubt that your mum would be able for Folfirinox chemotherapy. Chemo is given based on a performance status scale, and the person needs to be very fit to have this triple combination. But, that's not to say that other forms of chemo are not effective - Gemcitabine has been the only drug around for many years - it is only in the past 2-2.5 years that Folfirinox came into clinical practice in the UK. And chemo can work well, especially on the symptoms of the disease, so don't lose hope at all. Chemo is usually given for 6 months, with a scan half way to determine if it is working. If it is, they carry onto 6, if not, they may well give another drug.

I hope this helps?

Jeni, Support Team.