My mum - Stage 4 PC with liver mets

[Dee123]

Hi everyone,

I am new here but I have been reading for a while. I thought I would log my Mum's journey on here because I have spent hours reading absolutely everything I can about Pancreatic Cancer and I know how helpful it is to find people with similar stories, even though I know that everyone is different.

My mum is age 66. Here is her timeline:

April 2018 - stomach pain that won't go away, above the naval and just under the ribs.

May 2018 - doctors suspect a stomach ulcer but request a gastroscopy to make sure.

Early June 2018 - during the gastroscopy, the doctor says it is definitely not a stomach ulcer but he has identified tumours in the duodenum which he believes are metastatic. He takes a biopsy and refers her for a CT scan.

Mid June 2018 - CT scan showed something on the head of the pancreas and on the liver. Liver biopsy booked in.

Early July 2018 - Liver biopsy.

9 July 2018 - diagnosed with Stage 4 Metastatic Pancreatic Adenocarcinoma which includes a tumour on the head of the pancreas that is pushing on the duodenum (hence why the doctor saw it during the gastroscopy) with liver mets. Confirmed Stage 4 terminal with no option for surgery. Treatment will only extend life. No cure.

10 July 2018 - signed up for a clinical trial (HALO pegph20) but they need to check she has the right tumour markers to be eligible - they use the liver biopsy cells to check - results take 3 weeks.

3 August 2018 - Biopsy results for clinical trial are inconclusive, another biopsy required. Time is ticking away. Doctor recommends starting chemotherapy instead.

It was decided that, as she has ulcerative colitis, Gemcitabane and paclitaxel albumin (Abraxane) is to be used rather than Folfirinox and she will start the chemotheraphy next week. We received a phonecall today that the chemotheraphy is to be brought forward a couple of days due to NHS guidelines that state a patient must be treated within 62 days of GP urgent suspected cancer referral. The 62 days are up on Monday so that is when it has to start.

I will keep you updated. Has anyone got experience with this type of chemotherapy?

Any support/help/tips would be appreciated.

Sending everyone reading this lots of love and hugs because we all need it!

Dee x

[Veema]

Hi Dee, so sorry to hear about your mum, but you've come to the right place for support.

I just wanted to make sure you are away that your mum can claim attendance allowance, which is not means tested. She may not feel she needs this, but it's something she is entitled to and will help with parking costs, maybe someone to help out in the garden or the house etc. She will also be entitled to a blue badge.

I would also make sure she is referred to the palliative care team, whether thats Macmillan or whatever...it was our hospice that provided palliative care in the community. Again, even if she doesn't feel like she needs this now, its best to have the referral in place if and when she does. Things can change pretty quickly with this disease and it's best to have everything you can at your disposal. They're a great help liaising with other medical professionals and at chasing things up. We didn't find out about this until it was too late for us.

My husband had folfirinox, so can't help with the regime your mum is going to have, but abraxane is supposed to work well. You can only see how she tolerates it...hopefully it won't be too hard for her.

Keep posting, it helps.

Vx

[toodotty]

Hi Dee,

Sorry to hear about your mum, as you have found there is little in the way of good news when it comes to Pancreatic Cancer. It is really important that your mum does not give up HOPE, despite what the medics say. There are people who live successfully for 2, 3 or 4 years with this cancer but she will have to be determined, stubborn and sometimes bloody minded to get the treatment that will help her. With regard the chemo regime, some Oncologists prefer to start with Gemcitabane but may move onto a combo of other drugs as part of a maintenance regime. Folfirinox isn't for everyone, it only works in about 30% of people and is very aggressive, so often is not appropriate.

Saying that the chemo starting working for me from the first round, and I feel better now than I have in months. Keep positive!

Sending virtual hugs to you both,

toodotty

[Dee123]

Thanks for your messages. They are a great help. We will look into the attendance allowance and the palliative care team and we will not give up hope. I have been researching all the success stories. I am glad you are feeling better toodotty!

My mum had her first day of chemo yesterday. Today she is very tired and nauseous and has hardly eaten anything.

She has anti sickness injected with the chemo and she has anti sickness medicine which she has been told to have with food.

Does anyone have any tips for what helps with nausea?

Also I have read a lot of people talking about Creon. When does this get prescribed? I think it would really help my mum. She has lost (and is losing) weight.

Hopefully she will feel slightly better tomorrow. The doctors recommended for her to keep moving/exercise but she hasn't felt like it today.

We are taking it day by day and hope for a better tomorrow. I hope everyone reading this is feeling ok. Tomorrow is a new day.

Dee x

[Mrshappy]

Hi Dee,

So sorry to hear about your mum. My dad is 68 with stage 3 locally advanced pc (so also inoperable). He was on folfirinox but only had 2 rounds before deciding it was just too aggressive (ended up in hospital both times with neurotrophic sepsis). He is now waiting to start gemcitabine in a few weeks....

As to nausea please do ask for different anti sickness meds. We really had to push to get stronger ones for my dad after he was so nauseous he became dehydrated and we ended up in a&e. There are many different ones out there and some will be more effective. Does your mum have a specialist nurse you can contact? Or a chemo helpline??

As to creon my dad was given it straight away as pc affects the enzymes usually used to digest food. His main symptom was diarrhea and taking more creon with his food has almost got rid of this. I am not sure if it depends where the pc is (head or tail of the pancreas) but again, something else to ask the nurses. Do use the helpline on here too as the nurses on here are amazing.

I hope your mum feels a little better from the chemo soon. It's an incredibly rough journey so I hope she gets some relief soon.

Sending strength and love,

Claire x

[Veema]

Yes, Dee, she will definitely need creon as the tumour is in the head of the pancreas. This is the area that deals with digestive enzyme production and it is likely that will be compromised, creon is a replacement for this. Ask the GP or her specialist for a prescription.

Vx

[Marmalade]

As veema says but would also speak to the nurses on here about both topics. Most doctors and the nutritionalist we spoke to did not know the correct dose of Creon (you can't overdose) and under prescribed it which resulted in bad tummy pain and indigestion. My husband had cancer in the tail and still needed Creon.

M xx

[PCUK Nurse Dianne]

Good morning Dee,

Welcome to the forum, and as we find, the great forum family are already responding to you. Dee we can give you some information about the chemotherapy treatments, and also managing symptoms, and of course the pancreatic enzymes.

Please feel free to touch base with us today if it is convenient. Alternatively we can email you separately to the forum with some information before the end of the day.

Kind regards,

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer Uk

Support line: 0808 801 0707

Email: nurse@pancreaticcancer.org.uk

[toodotty]

Hi Dee,

Your mum will definitely need Creon and you will need to experiment with the amount. Don't be scared of it, the worse that is likely to happen is that she will get an itchy anus if using too much. She also will need more with fats and meat, don't be scared of 80,000. She shouldn't need it for fruit, I start the day with a bowl of cherries to kick start the digestion, sets me up for second breakfast. She may also need a PPI (proton pump inhibitor - controls acid levels in stomach - Omeprazole is what I have), this works with CREON and helped with controlling the swing from diarrhoea to constipation that I struggled with.

Re nausea, there should be meds to help with this. If she cannot eat then ask for build up drinks instead to keep her going whilst she gets used to the chemo.

Good luck,

toodotty

[Dee123]

Thank you for all your replies so far.

Quick update:

My mum has had 3 weeks worth of Gemcitabane and Abraxane so far and now has 1 week off (Her treatment is 3 weeks on, 1 week off for 12 weeks)

She has managed to control her nausea better. She rests for 2 days after Chemo whilst taking her anti sickness meds and after that she is more active with more of an appetite.

She has finally been offered Creon (during week 3) and has been given tablets of Creon 25000 but she hasn't been told how many to take/when so we are researching that at the moment!

She is losing her hair in huge clumps so she has decided to shave her head this week.

She has a new side effect of numb/tingling/cold hands and feet.

She has experienced a reduction in the number of painkillers that she needs so I think that is a good sign!

She has also put on 3 pounds since last week so that is good news!

Overall she looks well and is staying positive and we will never give up hope.

She is due to have a scan in November so we are hoping for good news.

Dee x

[KeithKerry]

I hope your Mum gets the good news she deserves Dee.

My daughter is on the same treatment. She also lost her hair and had some very mild neuropathy on occasion. She too had very mild nausea from time to time.

But like your mum she has remained positive and determined and if you didn't know her you would not believe she was ill in any way. She has been on this treatment since April and the two patches of pancreatic cancer in her liver have now died off and been replaced with scar tissue. She also had quite a few tiny nodules of the cancer in various layers of her liver and they too have been replaced with scar tissue. The primary tumour on her pancreas is much less dense and has shrunk quite a bit as well.

I hope your mum gets a similar reaction to it. I have everything crossed for her.

[toodotty]

Hi Dee123,

So glad that your mum is feeling better, the chemo, though hideous at the time, can make a real difference. Re cold fingers and toes, make sure that she wears thick gloves and socks to prevent this from happening. It can cause long lasting damage if you don't keep it in check at this stage. Again she may see this improves as she goes through chemo and her own condition improves. So pleased that you both have positive news.

toodotty

[PCUK Nurse Dianne]

Thanks Dee for your post,

I thought it might be helpful to explain about the numbness/tingling/cold hands and feet as this is not always explained to patients having chemotherapy. Many patients are aware of it, with Folfirinox chemotherapy it may take longer to recover - it is a side effect of the Oxaliplatin - one of the components of this regime.

These symptoms are also a side effect of the Abraxane used in the combination treatment of Gemcitabine/Abraxane. With this treatment regime, the side effects do tend to resolve after completion of the treatment.

Wearing warm socks and gloves as the weather cools down may help and hopefully the symptoms will not be so troublesome after treatment.

Creon doses - will vary patient to patient on the foods and amounts they are eating. The suggesting starting doses in the UK are 25,000 - 50,000 units for a snack (of course this will vary between patients ie a biscuit has less requirement than a ham and cheese sandwich). Also be aware that most of the supplemental drinks that are prescribed will require 50,000 units of enzymes.

Main meals, again depends on content, a suggested starting dose is 50,000 - 75,000 units, and then build up.

We are able to discuss this with anyone who needs any support or guidance on managing the enzymes and nutrition, as we know it does make such a huge difference.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support line: 0808 801 0707

email: nurse@pancreaticcancer.org.uk

[Dee123]

KeithKerry wrote:

> I hope your Mum gets the good news she deserves Dee.

>

> My daughter is on the same treatment. She also lost her hair and had some

> very mild neuropathy on occasion. She too had very mild nausea from time to

> time.

>

> But like your mum she has remained positive and determined and if you

> didn't know her you would not believe she was ill in any way. She has been

> on this treatment since April and the two patches of pancreatic cancer in

> her liver have now died off and been replaced with scar tissue. She also

> had quite a few tiny nodules of the cancer in various layers of her liver

> and they too have been replaced with scar tissue. The primary tumour on her

> pancreas is much less dense and has shrunk quite a bit as well.

>

> I hope your mum gets a similar reaction to it. I have everything crossed

> for her.

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.

[Dee123]

Thank you for your replies regarding neuropathy and Creon.

The next side effect is sensitive teeth - has anyone got any tips on how to deal with this?

My mum will ask her doctor next week. In the meantime I am going to research the best sensitive toothpaste and mouthwash for her to use!

I hope everyone is doing ok.

Dee xx

[KeithKerry]

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]

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]

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]

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.

Erika

[kate2101]

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]

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]

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]

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]

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]

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