Chemotherapy decision

Hi folks

Well I am 2 weeks into the first cycle of chemo.  I agreed 3 with the oncologist but see on my form he has me down for 4!  All the research I did seems to point to the fact that there is no difference between 6 cycles or 3 in the terms of improving the odds, so I shall have further discussion tomorrow when I meet up with him.

So far the chemo has been as expected sometimes felt slightly sick toast seems to be the go to food and wearing my travel sickness bands, I have had pins and needles from time to time headaches, tiredness a slight catching of breath and have now developed a cough but very slight when I talk too much or take in a big breath!  The most painful thing was when I had the infusion towards the end it made my forearm really sore which I believe can happen and they rushed around with  a hot pack for me but 2 weeks on this soreness is still there and if anything is getting worse.  Is this NORMAL??  Would be grateful for any help on this has anyone else had a similar problem and what helps to get rid of it?

Hi . Yes I got a very sore arm but it did wear off over the following few days. My second infusion was even more painful though and I was close to tears when they took the sticky tape off. I couldn’t bear clothes touching my arm for several days afterwards and resorted to cutting the toes off a pop sock and pulling it over my arm before putting my jacket on. I found a warm wheat bag helped at home but my saving grace was having a picc line fitted. This is a permanent line which is put in your arm for the duration of your chemo and they use it for the infusion and blood tests. There was a 3 weeks waiting list for a fitting in my local health authority but as I was down for having 9 sessions then it was worth doing. 

You could have a chat with the chemo unit about it but they might think it not worth doing if you’re only having 3 sessions. Another option would be to have the iv run over a longer period of time? Perhaps you could give the unit a ring before your next session is due and see what they suggest.

Hope you are able to get something sorted

Take care

Karen x

Thanks Karen

Thats what I thought it should wear off but the pain seems to have become more intense and this week has been really bad affecting shoulder and neck as well.  I am due to see oncologist tomorrow and will see what he suggests, but I am not sure this is a normal reaction, They did have an awful job finding a vein and I ended up with the line going in at the base of my thumb just above the wrist and had to hold my arm quite still as everytime I moved it stopped running!  I am beginning to wonder if the great universe is telling me that I am not meant to carry on with this!!

Hi Anken50, I had 4 cycles of Capox and the first round they used a big fat juicy vein that I have in the crook of the elbow in my right arm. The 2nd round they told me they prefer to use a vein in the wrist because it's easier to keep straight (they didn't want me bending my arm with the cannula in the elbow). I suffered quite bad vein pain, even though they used a heat pad. For the next 2 cycles I asked them to use the elbow and I didn't have any further problems. Maybe if you have a juicy vein they might be able to use it rather than one in your wrist.

I hope they can come up with a solution for you and that your treatment goes well.

My mum had to switch to the other arm to let it settle . She also took antibiotics just to make sure no infection was present . Her veins are hideous now after two years of chemo but it only happened the once but lasted for a few weeks .

take care ,

Court 

Thank you Reetpetite

I asked them thst ladt time when they had already tried and failed to find a vein in the back of each hand before going in at the base of the thumb! Its 4.15 in the morning day 1 of week 3 of first cyvle and I am crying with the pain that has woken me up all ip my arm into my shoukder neck and head. Will discuss with oncologist when I meet with him today but at the moment ready to chuck the towel in and all my friends and family will tell you I am no quitter but this pain is something else! 

Hi . Oh you poor thing - I’m looking at the base of my thumb and shuddering at the memories that it’s brought back. This neck and shoulder pain does not sound right at all so I’m glad you’re seeing the oncologist today. Would just capecitabine tablets be a compromise with there being no lymph nodes affected?

Please don’t think of yourself as a quitter - if the 5% improvemt in reoccurrence odds is having such a detrimental effect on you then it begs the question if it really is worth it and I know you were already in 2 minds about having chemo anyway.

Hope you’ve managed to get a bit of sleep and please let us know how you get on

Take care

Karen x

Karen your support has been amazing and I can't thank you enough. I  am wondering if I can just do the tablets or rely on the ongoing monitoring to pick anything else up early.  Your story is incredible and you are obviously a strong and positive woman (as I thought I was before the wee small hours today) but I shall look on it as a minor set back have the conversation with oncologist today and let you know how it goes. Thank you again for yiur encouraging words. 

Hi . Thankyou for such lovely words. I’m far from medically trained but I was under the impression from reading posts over the years that vascular invasion tended to be just the capecitabine and oxaliplatin was also given when there were lymph nodes affected. At the end of the day it is the belt and braces so you might find that the oncologist is not unduly concerned if you don’t feel like you want to continue.

You are still a strong and positive woman and we all have wobbles from time to time (like my 3 year review coming up in a couple of weeks!) but, as you say, view it as a minor set back and look forward to getting back on with your life. 

Take care

Karen x

Hi Karen and Court  

Just back from the hospital and things to mull over during the weekend. Cycle 2 due to start next Wednesday so need to let them know my decision on Monday.  Seems I have 3 or 4 options even - continue as I have been (isn't going to happen no one is coming near my veins again)! Take an extra week off to see if things improve and then continue as before - don't really want to extend, option 3 is to just take the capecitabine but over a 6 month period instead of 3 or say enough is enough and grab my life back now!  The tablets only is an option but I am disappointed it will need to be over a longer timescale.  In the meantime ibrupofen and paracetamol for my painful arm before I go  to bed tonight - will be a change to take 4 white tablets instead of 4 pink!  Then will see how things feel over the next few days before I have to contact them with my decision on Monday.  Good luck with your 3 year review Karen I will be sending positive thoughts over the ether to you xx