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KeithKerry
Posts: 33
Joined: Fri Apr 13, 2018 8:44 pm

Re: My mum - Stage 4 PC with liver mets

Postby KeithKerry » Sat Sep 29, 2018 2:32 pm

Dee123 wrote:

> That is good news about your daughter and her scan results. Is she continuing with
> chemotherapy after the scan results or does she get a break in between? The doctor's
> haven't mentioned what the plan is for my mum after the scan in November. Although
> the doctor originally said she can continue on the treatment indefinitely. I hope
> your daughter is continuing to do so well and we hear even more good news in the
> future.

Hi Dee123

At the moment we're not quite sure what is happening next. At the last Oncologist appointment a couple of weeks ago there was talk of a possible treatment break. My Daughter has finished the last cycle and had a staging scan earlier this week. We have learned during this last few months that a new cycle does not start until we've had an appointment with an Oncologist to see how well she is coping with the treatment. When there is a staging scan involved as well a 'break' from chemotherapy can be 2-3 weeks instead of the usual 1 week whilst the imaging report comes back and a follow-up appointment is set up.

This time things are little off kilter as these last two scans have been quite close together in terms of time. So, we're back in the land of 'scanxiety', and even though common sense dictates that given the results of the previous scan on top of tumour markers which were essentially still normal 2 weeks ago, that little worm of fear and doubt that I guess we all have tucked away in the corner of our minds is having none of it.

I hope things go well with your Mum Dee. As a family we're still relatively new to all this (started in March this year) but we have learned a lot and if I can help in any way by relating our experiences to you then I will do so with great willingness.

Onward and upward

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: My mum - Stage 4 PC with liver mets

Postby Dandygal76 » Thu Oct 04, 2018 12:45 am

Hey Dee, I am signing off now but do not give up any nausea / sickness until you try the expensive and elusive Emend (the nausea may increase as chemo carries on). They will do everything else first (naturally) but when I said to dad's trial.. time for Emend the doctor actually smiled and then prescribed it. It was a game changer. You will not get there though until you try the rest but you may be able to accelerate it with knowledge. DG

Dee123
Posts: 7
Joined: Wed Aug 08, 2018 8:21 pm

Re: My mum - Stage 4 PC with liver mets

Postby Dee123 » Wed Nov 07, 2018 1:53 pm

Just thought I would provide an update. My mum was diagnosed in July 2018 and has had 12 weeks of Gemcitabane and paclitaxel albumin (Abraxane) chemotherapy.

We have just been given the results of her first CT scan (since the one before chemo) and the tumour on her pancreas has shrunk. The spots on her liver have also shrunk, the doctor said they are "dying out" and her lungs are clear.

She will now continue for another 3 months with the same chemotherapy.

She is no longer having to take any painkillers (she was on a lot of pain killers before chemotherapy) and her symptoms have reduced. I think the main aches/pains now are chemotherapy related. She has improved so much since diagnosis with this chemotherapy.

We are so glad the chemotherapy is working and hope it continues to work for a long time!

I hope everyone is doing ok. Sending my love to you all xx

toodotty
Posts: 129
Joined: Sat Jun 09, 2018 4:17 pm

Re: My mum - Stage 4 PC with liver mets

Postby toodotty » Wed Nov 07, 2018 5:28 pm

Dee123,
That is indeed fantastic news I am so pleased for you both. Not being in pain will make a big difference as well, my pain went after about 4 cycles of Folfirinox and I have been feeling pretty well most of the time (got a stinky cold at the moment so today not so good!). Tell your mum to keep positive and let's hope that the next round nails the PC tumour. When I am in chemo I visualise myself pick-axing it to death, somehow the Pacman eating it just didn't hit the right level of anger for me.
Fingers crossed for lots of further improvement. :D

Erika :D

kate2101
Posts: 61
Joined: Fri Jun 15, 2018 4:20 pm

Re: My mum - Stage 4 PC with liver mets

Postby kate2101 » Wed Nov 07, 2018 8:31 pm

Hi Dee

Brilliant news about your mum, really pleased her pain is so much better too.

I have number 8 chemo tomorrow (Folfirinox), delayed a week because of low platelets. Like Erika I visualise my tumours, my scenario is red hot smouldering tumours that get hotter and hotter and burn themselves out and turn into ash. Something works as my CT scan showed all tumours have shrunk and my CA19-9 level has dropped from the original off the scale 500,000+ (that’s right, half a million!) to 220. Sure it’s down to the chemo rather than my visualisations but who knows, the mind is a powerful thing!

Best wishes to your mum, hope she continues to improve.

Kate x

J9pkr
Posts: 2
Joined: Wed Sep 26, 2018 8:35 am

Re: My mum - Stage 4 PC with liver mets

Postby J9pkr » Fri Nov 09, 2018 5:30 pm

I am new to this and reading Dee’s first post could be me. My Mum 72 has PC in the tail of the Pancreas and it is spread to her liver. We are a month post diagnosis and we are all still in shock and devastated. She is not very symptomatic but feels nauseous almost constantly and has some pain which is under control.
She starts her chemo on Friday and has opted for Gemcitabine and Abraxane. Reading your posts has given me some hope.

J

Dee123
Posts: 7
Joined: Wed Aug 08, 2018 8:21 pm

Re: My mum - Stage 4 PC with liver mets

Postby Dee123 » Sat Nov 10, 2018 3:26 pm

J9pkr wrote:
> I am new to this and reading Dee’s first post could be me. My Mum 72 has PC
> in the tail of the Pancreas and it is spread to her liver. We are a month
> post diagnosis and we are all still in shock and devastated. She is not
> very symptomatic but feels nauseous almost constantly and has some pain
> which is under control.
> She starts her chemo on Friday and has opted for Gemcitabine and Abraxane.
> Reading your posts has given me some hope.
>
> J

Hi J, welcome to the forum, sorry that you had to join in these circumstances.

It is a great place for information and everyone is very supportive here. I find that reading about others with similar diagnosis and treatment helps a lot! Sounds like your mum is in a similar position to mine but 3 months apart in terms of chemotherapy. There is so much information to take in during the first few months. If you have any questions feel free to post them or ask the nurses here.

Stay positive, ignore the stats about PC and research into all the success stories because there are a lot of them. Never lose hope!

J9pkr
Posts: 2
Joined: Wed Sep 26, 2018 8:35 am

Re: My mum - Stage 4 PC with liver mets

Postby J9pkr » Thu Nov 15, 2018 7:15 am

Thank you for your reply. Mum starts her chemo today at Guys. It is all very nerve wracking but we are trying to be positive. Mum has opted for Cold Cap to try and retain her hair and we are just keeping everything crossed that the side effects are manageable.
I wish everyone on this thread very best wishes on Pancreatic Cancer Day.
J