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KeithKerry
Posts: 36
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: 761
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: 14
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: 147
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: 65
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: 6
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: 14
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: 6
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

J9pkr
Posts: 6
Joined: Wed Sep 26, 2018 8:35 am

Re: My mum - Stage 4 PC with liver mets

Postby J9pkr » Sat Nov 17, 2018 7:01 pm

Does anyone have any experience of an increased sense of smell? Mum is becoming increasingly nauseous but has a heightened sense of smell which is making the sickness worse. She had the first chemo on Thursday but has picked up a virus (we believe on Wednesday) which is making her feel worse. If we could stave off the nausea I think she would feel better. She has been prescribed Domperidone which seemed to be controlling it better than the other drug she was taking but the virus has knocked her for six.
Any help/ thoughts would be appreciated. J

Dee123
Posts: 14
Joined: Wed Aug 08, 2018 8:21 pm

Re: My mum - Stage 4 PC with liver mets

Postby Dee123 » Sun Nov 18, 2018 8:47 am

Hi J, yes my mum has a heightened sense of smell which affects her nausea. For example we received a magazine in the post which had plastic wrapping and she could smell a plastic smell from the other end of the room (no one else could smell it) and we had to throw it away. She is the same with candles and flowers etc. Everything smells too strong. This affects her mainly in the few days after chemo.

The anti nausea medicine is hit and miss and it takes a while to find the right one. My mum kept asking for something stronger every week. She has found one that works better now.

Sorry to hear your mum has picked up a virus which is making everything worse - the first chemo is hard enough! I hope she feels better in a few days time and her nausea also gets better.

Dee x

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: My mum - Stage 4 PC with liver mets

Postby toodotty » Sun Nov 18, 2018 5:48 pm

Hi Dee123,
Try your mum on Milk Thistle, this can diminish some of the side effects. I also am more nauseous around chemo time and need to stay away from any diary products at all for at least a week. This time I felt sick before I even started chemo, what is that all about? Herbal tea such as camomile or lemon & ginger can also just calm the stomach down a bit. Erika.

J9pkr
Posts: 6
Joined: Wed Sep 26, 2018 8:35 am

Re: My mum - Stage 4 PC with liver mets

Postby J9pkr » Mon Nov 19, 2018 11:44 am

Thank you for your ideas, it is greatly appreciated. I will certainly try the Milk Thistle. Just hoping that she can get over the virus so we know what is side effects of the chemo and try and deal with those.
J x

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: My mum - Stage 4 PC with liver mets

Postby toodotty » Tue Nov 20, 2018 11:36 am

Hi J9pkr,
It will get easier, make sure you keep a diary of symptoms at the start, your mum will quickly learn about her good days and not so good days. Also things will change a bit which each cycle, generally for the better. I do find that having chemo is sometimes a bit like the early stages of pregnancy and I do suffer the "morning sickness" feeling some of the time but my biggest issue is the sudden onset of cravings. Thankfully food items rather than coal; for instance, I have found cherries, black or red grapes absolutely essential for breakfast, it just kick starts my day and I don't need Creon for it.

Erika

J9pkr
Posts: 6
Joined: Wed Sep 26, 2018 8:35 am

Re: My mum - Stage 4 PC with liver mets

Postby J9pkr » Tue Nov 20, 2018 9:32 pm

Hi Erika,

Thanks for your kind words. I hope it gets better, she is still so poorly with the virus. I hope that like you she finds some food that she fancies as she is really struggling at the moment. Just hoping she will be well enough to continue with her chemo. Best of luck with your treatment.

J x

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: My mum - Stage 4 PC with liver mets

Postby Dandygal76 » Tue Nov 20, 2018 10:59 pm

I am on catch up... Dee, has your mum got onto Emend yet? Also, if your mum is 'thinking' sickness then speak to the nurses. We had a big problem with dad called 'anticipatory sickness'.. he just associated a situation in his head and was very nausea's or sick. It is very well documented and you should explore it because there are easy solutions to it that are not anti sickness tablets.When the PCUK nurses recognised this and suggested alternative treatment it changed dad's wellbeing massively so give them a call. x