Renaming chemo

Hi, I am in a similar situation, round 1 was brutal and I felt I could not carry on. I went for round 2 last Monday but it didn’t go ahead (decided after the cannula went in unfortunately)due to my extreme side effects they have decided to reduce the dose by 20% so back to try that on Monday. Fingers crossed 

Hi Lobs and a warm welcome to the board. The oxaliplatin side used to be ‘affectionately’ called poxy oxy until someone objected on the bowel cancer uk board and said we should view chemo as our friend? How many sessions are you having? If it’s 4 then you’re already 1/4 of the way through. I always found the iv oxaliplatin the toughest so used to tick those off then pretend the capecitabine were vitamins. Try and plan some nice treats for your week off the tablets and after your next iv you’ll be halfway?

Try to re-find your positivity and focus on the end goal - you’ve got this!

Take care

Karen x

Thank you Sue. I have a feeling mine may say the same as my side effects are still ongoing. Good luck. Please let me know how you do.  X

Hi Karen!

Thank you for this. I am 1/8! I suspect the board person has never  had to have bug busting! Pretty condescending. Let's see! I can call it bug busting!

Thank you again.

Lynda  x

Hi Lobs, I have had hypnotherapy for sleep problems and it helped,

Eddie

Hi Lobs.
I've just done my 6th and final one for me.  I agree that you look at each future infusion with dread, but you just have to try and be positive, think nice things, and have a list of questions to take in with you as well as recording how you are each day, because there are things the team can do to help you out.   I needed senna for the first 6 days then imodian after that. 

This won't be forever and we need to do this, so find that inner strength.  I thought it was a shame that there was no opportunity to speak to other people having chemo as I could see those on their 1st one and I could see things that would have helped them (like the heat pad) but there was no chance to share any experience - and of course we are all different. 

Number 3 was the worst for me and I was told it was often the worst one.  My dose got reduced by 20% after number 3.  
 
Make sure you get a heat pad for the vein you are getting the infusion into and if possible your own one to use on the journey home and for the next few hours.  It really helps with the vein pain which can be excruciating - no one tells you about that, I have 6 ruined veins now!     I found that I couldn't walk after my latter infusions, but once home I went to bed straight away, electric blanket on to keep everything warm/hot and stay in bed as long as you need to -  I used to spend at least the first 3 days in bed and then longer as I went through the cycles. 
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Get to grips with taking the anti sickness drugs even if you think you don't need them.  I had domperidone and they worked for me once I'd worked out I need to take 3 at regularly spaced intervals and on an empty stomach.   Have the imodian to hand, capecitabine is a terror for upsets, but you will learn to manage it and if the imodian doesn't work for you anymore, they can give you codeine, which I found  a game changer. Gaviscon also helped at times too.  Dioralyte is good to have on hand if you get bad runs (I'm being polite here, mine was a realy shit show at number 4, dioralyte really helps with rehydration as I was finding drinking water wasn't even touching it, it was just coming out again).  The rehydration sachets are game changers for helping, otherwise I imagine I would have been admitted to hospital as it was getting extreme - survived it though!   

Just write everything down from day to day, tell your team any probs before the infusion starts, try and find that inner strength.   I will be rooting for you, you can do this!  More important, remember the Helpline, you can call them at any time with any concerns and I did and it was either the reassurance I needed or on one occasion a chat with a Dr. 

PS I've been on capcitabine for 6 months and finished 2 weeks ago -  that was a milestone, but I somehow survived! 

Good luck Lobs :) Hope some of this is useful even if it is just buying some dyoralyte! 

Hi Lobs,

I have just started my 3rd cycle of capox. My first was definitely the worst. I don't think I was fully prepared for the side effects. My second cycle was far far better though so don't think you can't do it. 

As others have said keep your arm warm after and have  gloves and scarf to look after your hands and throat.

I have i cycles as well so it's daunting at the start but it does get better. If you need advice on anything specific please post.

Brenda