Chemo Fear

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Hello everyone,

I just wanted to reach out and ask for some advice/guidance. 

I currently have 2 small cancerous cysts on my liver. I am due to start Chemo in 3 weeks time which I am dreading. 

Has anyone had any experience with Folfirinox? The cold cap?

Also how bad is it getting a Picc line? Nauseated face

Thank you so much

  • Hi 

    Welcome to the forum.

    Following for interest. I have breast cancer and have oncology appointment next week to discuss chemo. Not sure how quickly after appointment it will start. Or what is all involved 

    Good luck with your treatments xx

  • Hi  I’ve not had Folfirinox but if you type it into the search box at the top of the screen then you should be able to see previous posts? I’m going to tag  to see if he can offer any advice

    i did have a picc line and it was a godsend - no painful searching for veins and chemo in and bloods out. I do not like needles but the fitting was nothing to worry about. It’s a while ago now but from what I remember they numb a small area of your arm then make a tiny cut to put the line in. The cannula is attached and then everything is taped down and nice and secure. The nurses redress it after every session but it usually has to be flushed through every 7-10 days. You cannot play tennis or golf and you cannot get it wet. I was given a prescription for a limbo arm cover which is a waterproof sleeve with a rubber seal at each end that you wear over the line when you shower. 

    Chemo can be tough but sometimes it’s reputation is worse than the actual experience. It’s worth keeping a diary as you may find that the first few days after the infusion are the worse and the days towards the end of the cycle are better so you can plan something nice for those days and it also acts as a reminder when the nurses ask if you’ve had any problems 

    Hope this helps

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi Karen, thanks for replying. I'm a needle phobe and hate getting cannulas/blood tests but anxious about getting that line in. Just makes me feel squeamish. Do you feel it when it is in?

    Thanks

    Corrina 

  • Hi  I’m the same -still can’t watch a blood test! No you can’t feel it when it’s in and it’s well taped down so all you can really see is the canula taped to your arm. I used to wear a small piece of elasticated bandage pulled up over mine too for comfort and stop people asking questions! I found the oxaliplatin made my arm so sore I could barely touch it so the picc line was brilliant x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi SiCoTo

    having been on oxcap for quite some time for my bowel cancer I switched to FOLFIRINOX 2 months ago so have had 4 treatments. I have a portacath rather than a PICC which is better for me as I play a lot of golf. Bit more involved procedure than PICC but very convenient for treatment.

    As far as side effects concerned, no hair loss so no need for cold cap, just a bit of thinning. Others are same as previous treatment, except slightly more severe. Mainly peripheral neuropathy in hands and feet (mainly numbness this time of year, stingy in winter) but main and most annoying is loss of taste buds especially as I am a bit of a foodie! Has also made my teeth a bit more sensitive to the cold.

    Assume you will have 48 hour pump as well, bit of a pain but manageable.

    Side effects are very individual so you may fare better/worse than others, but if my experience is anything to go by you will get great support from your oncology team plus the people on here. I was also very anxious when I first started my chemo but overall it hasn’t been as bad as I had imagined.

    My wife keeps a diary and Kareno62 is right, side effects wear off a bit towards the end of your gap between treatments so I always save restaurant trips to then so I can taste the food I’ve bought!

    Good luck!

  • Hi SiCoTo

    I can't bear blood tests, always make me dizzy so my PICC line was a godsend! Local anaesthetic so you don't feel it being inserted and then blood tests are a breeze. The nurses will clean it for you and change the bandages every week. A limbo arm from Amazon is a must to keep it dry in the shower. During the day and night you will have an sleeve bandage to cover it. I had FOLFOX, be aware of peripheral neuropathy, fingers, toes and throat - cold tingles/extra sensitivity. You may also have a 2 day pump attached after treatment. My cycles were once a fortnight and the middle of the fortnight was my weakest time. 

    Good luck, wishing you all the best.

    KJD

  • Hello SiCoTo,

    Please don't worry about the needles; these days they are as clean, sharp and fine as can be. I have been Type 1 diabetic since 1964 and reckon to have self-administered about 50 000 injections and can remember blunt needles used over and over again. That said, I can't bear to look when anyone is taking a blood sample or inserting a cannula on me and find it easier to deal with, so perhaps don't look and remember the whole point (pardon the pun) is to make you better.

    Dulac

  • Thanks for your reply x

  • Thanks for your reply! 

  • Really no hair loss? Oncologist said I would? I have had Oxiplatin before and it was horrible. I'm guessing it's more of the same with the Folfirinox?

    Thanks for your reply