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Nelsmum
Posts: 19
Joined: Mon Apr 14, 2014 11:09 am

Re: Mum's diagnosis

Postby Nelsmum » Wed Jun 11, 2014 10:57 am

Hello Sue, obviously I don’t know your Mum but she may well be In shock, I know I was when I found out, I couldn’t tell anyone, didn’t want to speak about it. And I didn’t want to see anyone. Partly because of the reactions from other people, they were so sad and I felt guilty, weird I know, but that is how it felt, John, my husband told everyone except people at work which I did have to do. She may well feel better after seeing the oncologist and discussing options, I know I did but I was also lucky I did not have to wait as long as you and your Mum have. I sincerely hope it goes well for you and your Mum on Thursday.

Jane C

Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: Mum's diagnosis

Postby Dollysdaughter » Wed Jun 11, 2014 11:57 am

Hi Sue, hope things start looking up a bit for you and your mum once some positive intervention/treatment happens. I am in a similar situation with my mum but a bit further down the line. Try to keep calm and take some time for yourself as well as your mum but I do know how hard that is,
Sara x

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

Re: Mum's diagnosis

Postby Cathy » Wed Jun 11, 2014 6:36 pm

Hi Sue

Best of luck with the oncologist.

I suggest going armed with a list of questions you might want to ask, a list of symptoms and a little book to make notes in.

Hope things are a bit clearer for you afterwards about a way forwards

Cathy xx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Thu Jun 12, 2014 10:20 pm

The oncologist was very nice and very knowledgable didn't really have to ask many questions as he covered everything. Before the appointment I gave myself a good talking to and told myself I was there to support my mum and stepdad and keep it together! So what do I do break down in the consulting room! My mum and stepdad held it together well! The oncologist explained everything and then asked if she had been given a prognosis... Which is 8 - 12 months! He then went on to say it is different for all patients and he has a man who has had chemo for 3 years and they are keeping it at bay! Stay positive he said!
The oncologist decided she is fit enough to try Folfrifnox every 2 weeks at a slightly reduced 20% dose! He explained it is a toxic chemo. She has lost nearly 2 stone in weight and is very tired so I am hoping she will be ok with this chemo as it is her best chance.
I asked if they would scan her before treatment but he said no they will do that in 3 months and compare with her diagnosis scan then! Is that normal? What if it has spread?
My mum was great saying that this chemo would shrink it and then she would have it operated on and removed and then it would be gone! I am glad she thinks like that.
I am sure she is in for a rough time and I hope she can get through it.
Has anyone else experience of Folfrifnox? Is it ok?

Thankyou everyone for your replies I really appreciate it. Sue x

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

Re: Mum's diagnosis

Postby MSH » Fri Jun 13, 2014 12:49 am

Hi Sue,

Just to clarify, your Mum's Folfirinox has presumably been reduced by 20%, so she'll be on 80% every two weeks which is still a very tough regimen: the initial study used a cut off point of 76 years or older.

http://www.nejm.org/doi/full/10.1056/NE ... Type=Print&

The side effects can be very variable and individual, so you'll just have to see how she gets on, though I would suggest caution about the stent. One of the more common effects of the chemo is to reduce the white cells which protect the body against infection. Having a stent provides a common focus for infection, so much so that some authorities routinely give an injection such as Neulasta to boost the neutrophil count. You might want to ask your oncologist about this.

From what you say about your mother Folfirinox is the best treatment she could have, whether it has spread or not, and it is reasonable to have a scan at 3 months which is usually halfway through the treatment. She is right to hope that the chemo will allow surgery, this has happened in up to 24% of cases, and gives hope of a cure.

http://www.ncbi.nlm.nih.gov/pubmed/23955427

I hope she responds well to the treatment.

Mark

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Fri Jun 13, 2014 1:30 pm

Thank you Mark I have read the links. My mum is 76 so has just made it! I am really worried though that she may not be strong enough! She is very weak and being very sick(vomiting) at present. The weight is dropping off her.
This is just all so dreadful. Sue x

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

Re: Mum's diagnosis

Postby Cathy » Fri Jun 13, 2014 6:36 pm

Hi Sue

If you do a search on here you will find a lot about folfironox - a few of us have experience of it and, as Mark says, the scan being taken at 3 months is normal. Your Mum will have regular meets with the oncologist to see how she is feeling and may adjust the drugs accordingly as well as prescribe, if needed, any drugs to help with side effects.

I suggest that she keeps a diary (or someone on her behalf) any side effects she gets as that will be very helpful meeting the oncologist.

The main side effects my partner had was tingling (neuropathy) in fingers and feet (gloves might help) and fatigue. He also had a sore mouth (Niflam is good) and I gave him a chap stick for his lips. His appetite varied but generally was very good (steroids will help) and he put on weight over the course of his treatment.

Best of luck

Cathy xx

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: Mum's diagnosis

Postby LMD » Sun Jun 15, 2014 9:05 pm

Hello Sue
Pleased to read the meeting with your mum's oncologist went ok and good to know that he is positive! Hope your mum is feeling better having met with him and you now know what the 'next step' is. I don't have any experience of the chemo your mum is going to have but there's lots on here about it ...
Thinking of you and hope you're ok x

PCUK Nurse Jeni
Posts: 1111
Joined: Mon Jun 14, 2010 1:30 pm

Re: Mum's diagnosis

Postby PCUK Nurse Jeni » Mon Jun 16, 2014 12:20 pm

Hi Sue,

Is your mum taking the pancreatic enzymes now (creon)?

If not, she really needs to take these as otherwise, she will continue to lose weight rapidly.

Email us at support@pancreaticcancer.org.uk for more comprehensive information on these.

Kind regards,

Jeni, Support Team.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Mum's diagnosis

Postby Slewis7313 » Mon Jun 16, 2014 2:55 pm

Cathy, where did you get Niflam from? My mouth is becoming tender and the stuff I have is disgusting!

Steve

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

Re: Mum's diagnosis

Postby Cathy » Mon Jun 16, 2014 5:20 pm

Hi Steve

We got a prescription (it's prescription only) - I think it was from the oncologist but your GP can also prescribe.

So he took Nifflam oral rinse for mouth ulcers and a sore mouth and Nystan when he got oral thrush one time. Both were helpful. I also bought him some mouth ulcer pastels from Superdrug that he quite liked and bonjela.

I think it was the steroids that might have caused the oral thrush - a common side effect I think. You may not have that but it's something to be aware of - if your mouth and throat are sore and your mouth looks like it has white irregular spots in it this might be oral thrush. The Nystan did help.

He had a sore mouth for part of each cycle. Maybe for 2 - 4 days if memory serves me right.

Hope this helps

Cathy xx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Mon Jun 16, 2014 6:11 pm

Hi Jeni the dietician explained to her how to take them so she has been since last Thursday. She is eating a little bit more each day and actually looked a little bit better today! She was moaning at her husband so that is a good sign!!

Thankyou for your support.
Sue

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Mum's diagnosis

Postby J_T » Tue Jun 17, 2014 12:18 am

We got Difflam given to us when Ray went for chemo.

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Mon Jun 23, 2014 10:18 pm

Just a quick update on our progress. Mum is taking the creons regularly now and they are definitely helping. She has her consultation on the 2nd July, line being put in on 3rd and first chemo session on 4th.
Am I allowed to ask if anyone else on here attends {name removed - moderator} cancer unit in ? Does anyone know if they have a support group?
Sue x

Nelsmum
Posts: 19
Joined: Mon Apr 14, 2014 11:09 am

Re: Mum's diagnosis

Postby Nelsmum » Tue Jun 24, 2014 12:07 am

That is good news Sue, hopefully with the creon her confidence will build up and she will be able to eat more, or more often. You can't underestimate the pyschological trauma not being able to eat has when you know you need to. Onward and upward for you Mum. John says to me 'well done' when I eat a biggish meal, like a kid, it is encouraging!