Radiotherapy and chemo together

[JayneP]

Hello - I was diagnosed with inoperable PC in July 2020. Was extremely angry to be diagnosed at 52 and being a healthy eater, energetic and watching my weight. I was a size 6-8, hovering around 49kg and 5ft2. It’s inoperable due to its location near to blood vessels.

I was doubly upset about the diagnosis as my Dad died of PC on Christmas Day 2010, 6 months after diagnosis. Apparently it’s not hereditary so I was told - just bad luck - bit insensitive.

I have just finished 6 months of FOLFIRINOX chemo in February.

First cycle put me in hospital for 11 days - my weight dropped to 37 kg and I couldn’t eat or drink without being sick.

Admitted to hospital and put on drips for those 11 days. I came out feeling pretty weak and could hardly get upstairs. I had a little break to gain a bit of weight and carried on with the rest of my chemo reduced by 80%. This was tolerable but the pattern over the rest of the chemo cycles was ill for 10 days - sometimes ok for 4 days and then treatment again, and so it went on.

At the half way CT scan - the tumour had shrunk by just over 1/3. Not spread anywhere else.

Just had my CT scan results from my Oncologist on Friday, and it has shrunk a bit more- I am now getting to the point of my post!

So my next round of treatment is to be radiotherapy and chemotherapy. My Oncologist is going to send me some information and I will be meeting her face to face for the first time in 2 weeks to the her what my decision is on the chemo side.

The radiotherapy will be Monday to Friday for 5 weeks 10-15 minutes per session. The chemo would be tablet or through my PICC line. I am totally fed up with my PICC line having had it for 8 months- but I know side effects aren’t good via the tablets. Have any of you been through this stage and what did you decide on?

Sorry for the long one!

[Vasil]

Hello. I am sorry to hear about your diagnosis you are so young. What does PICC line mean? My father is just finishing his radiation treatment but he had no concurrent chemo, radiation only for 15 minutes a day. There have been no side effects with this but maybe it's individual.

[JayneP]

Thank you for your reply.

My PICC line is a thin tube inserted into my arm just above my inner elbow and goes through the vein near to my heart. All the chemo treatments are done through this line. It’s like a permanent cannula in a way.

[PCUK Nurse Lisa]

Dear JayneP,

My name is Lisa ad I am one of the Specialist Nurses working at the Charity. As well as providing support on the phone line and by email, we also moderate the Discussion Forum, so I hope you find this community a great support to you too. If you would like to speak with the nurses, then I will put our details at the bottom of this post.

JayneP you have fought admirably through some really tough treatment, which sounds as if it has been truly exhausting, to say the least. I am sure the thought of more treatment doesn't thrill you with excitement and you are not alone in being fed up with your PICC line.

In my experience, more centres offer the oral tablet chemo to go with the radiotherapy and maybe this is your chance to have some 'line-free' time. If I may offer some advice - make sure your oncologist gives you some data about the different chemo agents she is offering you - both about their side-effects and also their benefits and risks. There are some studies which have compared these and as you have struggled with significant side-effects with your FOLFIRINOX, I think a detailed discussion would be valuable.

Hopefully someone else from the Forum Community will share their experiences with you too.

Best wishes,

Lisa

Pancreatic Cancer Nurse Specialist

Pancreatic Cancer UK Support Line: Freephone 0808 801 0707

email: nurse@pancreaticcancer.org.uk

[Sukicat]

Hi Jayne P sorry I can't answer your question but your post was helpful as my husband has inoperable PC due to blood vessel involvement with a surgical review if tumour shrinks. He has his first cycle of folfirinox recently and had awful nausea and vomiting so his second has been delayed until it s sorted. The symptoms control team are on board now and vomiting has stopped with slight nausea. Diarrhoea is his main problem now which has been since diagnosis despite creon and hes lost around 41/2 stone. This hopefully will be addressed too when he has a telephone consultation with gastrologist on Sunday as it may be due to bile acid malabsorption. Its reassuring to read after your ordeal with first cycle that you managed to go on to have 6 cycles and the tumour has shrunk. That's wonderful and I hope someone will be able to help you with your way forward. Any tips would be gratefully recieved Thanks