Chemo side effects and the unknown

Hi trejb44, sorry you find yourself here.  Your story is exactly the same as mine although I am 5 months ahead now.  Im 46 and was diagnosed with bowel cancel with extensive spread to the liver.  At the time I was inoperable and one of the nurses said that an operation was unlikely.  However, my Oncologist is treating me with a view that I will be able to have surgery.  The same as you, the liver is the priority.   I have had 12 cycles of Folforinox and have had Cetuximob added for the last 3.  I have a scan after every 4 and the latest scan shows that the tumours are shrinking but one of the tumours is attached to the main vein on the liver so at present, still inoperable.

The main side effects I have experienced are tingling hands with anything cold, mouth ulcers, indigestion and acid reflux.  You should have a pre-chemo tel call before your next treatment, make a note of any side effects you experience and they will be able to suggest or prescribe something to help.  I totally understand what you mean about overthinking, once you get into the routine of the treatment you will know what is normal for you.

Make sure you stay hydrated, I don’t fancy drinking my usual amount of fluids during the first few days but I always make sure I have a drink next to me and take sips.  It’s very easy to become dehydrated.

I must say this forum has been a great help, I don’t post very often but I do pop on and read people’s stories which are inspirational and uplifting.  Don’t google!

Wishing you all the best on this journey, and hope you get good shrinkage.  One day at a time.

Michelle

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/folfirinox

Hi ,

I have copied a leaflet that covers most of the chemo agents you have . Another leaflet only covering Folfox did make reference to headaches and did suggest you contact your dr to get pain relief.

Our helpline staff 0808 808 0000 are really experienced at working through these sort of issues either to give you reassurance or to suggest if it is something that needs attention . Although it might not be anything like a blood clot your team will take all the side effects into consideration to get a clear picture of the correct dose for you for the next cycle . My mum had chemo for two years , the first she was a bit frightened of the consequences of feeding back her symptoms. Either that she would get pulled back into hospital for further tests or it be stopped . The second year she was more confident and more willing to get the balance right for her own well being and quality of life . Her team were able to reassure her over the phone as they know the symptoms of serious issues compared to mild things that still need help but not life threatening. They were able to assess things better and get on top of them before they developed into bigger things .

So I do think having a chat with someone on your team would help but not because it necessarily means anything is wrong just that it will help get it right for you over the long haul ! Their reassurance on things actually really helped !

They will know the difference between a mild headache and more serious side effects . Honestly ! The other person on your team is your GP they are also great at a quick phone call to clarify things ! My mum’s has been amazing over her treatment ! 

The other aspect that springs to mind ! Are you managing to stay hydrated? 
That was a full time job for my mum ! 

You sound as though you have managed the first round well ! Here’s to significant shrinkage in the liver and the bowel will hopefully be doing the same .

Take care ,

Court 

Michelle

Thank you for your reply, and i am too sorry you are having to go through this as well.

Yes my oncologist is the same as yours in that the liver is inoperatable now but the aim is 6 cycles every 2 weeks then rescan and if shrinkage is good re assess re liver op or if it is going well then they may give me another 6 I presume their thinking is if its working well then try an get rid of more before op. This is all guessing as only one round done.

I have noticed the dehydration as did not drink enough yesterday and felt it. Had the indigestion and reflux.

I have defo not googled as I know that is bad.

Michelle as you said one day at a time and wishing you all the best and hope you will be having the op soon.

Trev

Court

Thank you for the information and reading your experience with your mum has made me feel alot better. I will ring the helpline number if and when I need for any non urgent stuff.

Thanks again

Trev