My mum - Stage 4 PC with liver mets

[J9pkr]

Hi Dee,

We get Mum’s first scan results tomorrow so we are all anxious tonight. Your post was the first I read after Mum was diagnosed and I remember it giving me some hope as your Mum has just got her first scan results and they were so positive.

So pleased she seems to still be doing well.

Hope the Lymph node treatment is successful.

Janine

[Dee123]

Hi Janine, how did the results go?

[J9pkr]

Hi Dee,

We have had amazing news. The tumour on the Pancreas has shrunk so it is barely visible on the scan and the tumours in her liver have halved in size and some have even shrunk completely.

We were given the option of coming off the Abraxane but Mum decided to continue with the dual Gemcitabine and Abraxane for now but may take some more time between doses. We could not have hoped for better news. Thank you for asking xx

[Theresa Upton]

That is brilliant news.

[PCUK Nurse Jeni]

Hello Janine,

Thanks for sharing this very good news! How fantastic!

And well done to your mum!

Long may this continue.

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[kate2101]

Hi Janine,

So happy to hear your good news, love to you and your mum. xx

[Dee123]

Hi Janine, that is great news! Gemcitabine and Abraxane seems to work really well in the cases that I have seen. It must be such a relief for you both. Hopefully the next batch will help even more! Xx

[Dee123]

Just a quick update.

My mum last had chemo on 17th January and since then, although her lymph nodes had increased in size slightly, the cancer was stable. So she was given a break from chemo. Throughout this break she had pressure/pain in her abdomen/under her ribs so she wasn't symptom free but it was manageable with pain killers however it got worse as time went on so we knew the next scan would show something.

The cancer has now increased in size on her pancreas and there are a few lesions on her lungs. However the liver and lymph nodes have remained stable.

She is starting chemo again next week, she has been offered Gemcitabane and Capecitabine (GemCap) which they think she would tolerate better than Folfirinox.

I will let you know how it goes.

I hope everyone is doing ok xx

[Dee123]

My mum was meant to start chemo again but started having dark urine and pale stools and then her skin and eyes turned yellow and she couldn't hold down any food or drink. She suddenly developed jaundice. It was so quick over a few days and she was rushed to hospital. Watch out for jaundice everyone!

She has just returned from 2 weeks in hospital after having a bile duct stent and then a duodenal stent.

Chemo is now due to start in a few days.

[Dee123]

My mum hasn't started her second-line chemo yet because she was taken into hospital with sepsis (symptoms were fever, increased heart rate, very spaced out/confused and dizzy) but we caught it early and the hospital gave her IV antibiotics and fluids.

She also had another CT scan this week and there is more cancer spread to the liver so they said she needs chemo asap but it depends if she is strong enough.

She has lost so much weight (down to 6 stone) but the doctors said they will adjust the dosage to match her size so it doesn't overwhelm her.

Chemo is due to start next week now.

[J9pkr]

Hi Dee,

I was so sad to hear that your Mum has developed these complications as if our poor Mum’s don’t have enough going on. I hope that she recovers her strength and will be well enough to start treatment again soon.

Janine xx

[Dee123]

Thanks for your message Janine, how is your mum doing?

My mum started treatment last week but this week had a sudden onset of breathlessness. She could only walk a few steps before stopping to catch her breath.

So we called the hospital and she had a blood test and her haemoglobin levels had dropped by 50% from a few days ago so she was low on oxygen. She had a CT scan and chest X-ray. They found a blood clot on her lung.

She is having a blood transfusion today and then she is on blood thinning injections Tinzaparin everyday for the next 6 months.

They said she should be able to carry on with chemo next week so we will see how it goes.

I hope that by logging my mum's journey anyone reading this can look out for the signs that something is wrong and it may help someone in the future xx

[J9pkr]

Hi Dee,

Mum is currently in our local hospice due to on going nausea and discomfort which we are not managing at home. They are reviewing her sickness meds for a few days and then she is hoping to come home. They are lovely but she is not happy about being in there! She has also had issues with water retention including fluid around her lungs and heart which has made her breathless. However it is the nausea and the fatigue that has been the most debilitating. Emotionally she is very low but we have persuaded her to have some therapy to give her some coping mechanisms. However I am confident that if we can control the nausea she will feel brighter in herself. We are on a chemo break at the moment and 6 weeks in. I had all these dreams that we may be able to head off for a couple of days but sadly she has not been well enough.

Hope things get better for your Mum and you can continue with the treatment and you get some positive results.

Janine xx

[Dee123]

Hi Janine,

Sorry to hear your mum is not feeling well at the moment. Hopefully the hospice will sort out her sickness medication soon. It takes a few different types to work out which one is best and once they have found it she should feel a lot better.

Therapy is a good idea. There are times when my mum feels low, she just wants to feel like her normal self again. It must be hard. Our mums are so strong to be going through everything they are going through.

We had dreams of going away on holiday too during the chemo break, but my mum wasn't well enough either.

I hope your mum starts to feel better soon and she gets to enjoy the break more xx

[J9pkr]

Sadly my poor Mum has suffered a Stroke on top of everything else. She was getting more and more confused over the last week and the hospice put this down to fecal impaction which she was treated for in hospital on Wednesday. However we think she suffered a stroke on Friday and of course is now very poorly. It’s a nightmare but she does not seem to be suffering and is effectively asleep. I am desperate for her not to suffer through this and fingers crossed she does not know too much about this. J x

[PCUK Nurse Jeni]

Dear Janine,

We are so sorry to read about your mum having had a stroke. It is so difficult watching her suffer I am sure. Blood clots, which cause strokes, can be a symptom of pancreatic cancer, unfortunately.

Has she had a CT scan of her head, or are they leaving her to keep her comfortable at the hospice?

How are you Janine, and do you have any support for yourself also?

Its good to hear that she seems peaceful, so to speak. Certainly, she will still be able to hear you all, so do continue to speak with her and share any news you have with her.

You are in our thoughts.

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[J9pkr]

My darling, wonderful and amazingly brave Mum has died she never woke up from the stroke. I am devastated. She was doing so well and the chemo had great results but she was feeling more nauseous and more unwell. It is kinder this way as the stroke was so severe she would not have known much about it, but it does not hurt any less.

Dee- your original message regarding your Mum gave me so much hope from the outset as your Mum was about 3 months ahead of mine. I pray she is on the mend and can receive the treatment she was hoping for.

My journey is over, I have found this forum helpful and have sought comfort over the last 10 months since diagnosis. I wish everyone using this forum the best of luck whether you are diagnosed or are caring for a loved one like me, share your thoughts and your experiences as it does help and give comfort and hope to others. Janine xx

[PCUK Nurse Nicola]

Hi Janine,

Its Nicci here, one of the nurses from the support line.

Janine I am so sorry to hear about your lovely Mum. I do hope that her final days were peaceful and she was comfortable at the time of her passing.

Even if a loved one has been quite poorly, it doesn’t take away the shock and devastation you feel when that time comes Janine. My heart goes out to you and I do hope that you have good support around you at this difficult time. If you wish to talk things through at any point please do call us on 0808 801 0707.

From myself, Jeni and all of us here at the charity please accept our condolences, we are thinking of you and your family Janine and sending love to you all.

Kindest Regards

Nicci

Nicci Murphy

Pancreatic specialist nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Dee123]

Hi Janine,

I am so sorry to hear about your mum. Both of our mums have followed a similar journey so thank you for sharing her story, I am sure it will help others in future and hopefully one day we will find a cure for this horrible cancer. I know I will be in your situation soon and I will understand exactly what you are going through. Sending love to you and your family at this sad time xx

[J9pkr]

Thanks Dee, I am weirdly at peace at the moment. Maybe the relief that she is no longer nauseous or in pain. Please keep me posted posted on your lovely Mum too as I do think about you both.

Janine xx

[Dee123]

Hi all,

Just thought I would share a positive update while I can.

In summary, after my mum's chemo break back in February 2019, the cancer increased on her pancreas and moved to the lungs whilst still being visible on the liver and lymph nodes. Before she could start further treatment, she developed Jaundice, had 2 stents fitted (bile duct + duodenal) and had another stint in hospital with sepsis then she developed 3 blood clots on her lungs and had a blood transfusion. 

Despite needing blood thinning injections everyday, dropping under 6 stone and in a lot of pain which requires regular morphine, she has been on GemCap chemo since 18th June 2019 and experienced very little additional side effects (other than tiredness and sometimes diarrhoea)

She has a CT scan next week to see whether the chemo is working.

I just wanted to let you know that yesterday (nearly 14 months after stage 4 terminal diagnosis) she was able to attend my brother's wedding, her only son and the first of us to get married. It was just amazing and we did not imagine this would be possible when we received the diagnosis back in July 2018. 

I know that everyone is different and this cancer relies on early diagnosis but if you have received a similar diagnosis try not to give up hope, take every day as it comes and make the most of every moment you have. We really do only live once. 

Sending love to anyone reading this xx

[Borobi]

That’s lovely to hear.

[J9pkr]

That’s lovely news Dee. You must have been so proud of her for making it. Janine xx

[Theresa Upton]

That is such good news. I hope your mum enjoyed the wedding and continues to make progress

[Dee123]

The CT scan results came back and the cancer is stable so my mum will continue with GemCap chemo for another 12 weeks.

I have included a timeline below:

July 2018 - Diagnosed Stage 4 Metastatic Pancreatic Adenocarcinoma = tumour on the head of the pancreas with liver mets

August 2018 - Starts Chemo = Gemcitabane and paclitaxel albumin (Abraxane) for 12 weeks

November 2018 - CT scan shows tumour on pancreas has shrunk. The spots on liver have also shrunk. Lungs are clear.

November-February 2019 - Gemcitabane and paclitaxel albumin (Abraxane) for 12 more weeks

February 2019 - The pancreas tumour and liver mets stable. Chemo break.

Early May 2019 - Cancer increased on pancreas and there are a few lesions on lungs.

Mid May 2019 - Jaundice = Bile duct stent + duodenal stent. 2 weeks in hospital.

Early June 2019 - Sepsis. 1 week in hospital.

Mid June 2019 - New chemo - Gemcitabane and Capecitabine (GemCap) for 12 weeks

Late June 2019 - 3 blood clots found on lungs. Blood thinning injections required everyday.

September 2019 - CT scan results - cancer stable. Chemo continues for another 12 weeks.