I had capox/xelox which is oxaliplatin into the vein and capecitabine in tablet form.
Do you feel like a pin cushion because of having a canula in or because of the pins and needles side effect that some of the chemos cause? My veins were pretty wrecked by the time I started chemo so I had a picc line put in which stayed in my upper arm throughout my treatment and was so much easier for having bloods taken and the chemo put through. If it’s the pins and needles in the hands and feet then have a word with the nurses as you may need your doseage lowering - this can cause permanent damage and can get worse after stopping treatment so keep an eye on things. Keep your hands and feet well moisturised- my nurses recommended Aveeno with Shea Butter which you can usually get for a fiver at one of the supermarkets, Superdrug etc.
Pin cushion due to bloods then cannula, though they can from now just take blood before treatment as they don't need results before, as they did for the first 4 weeks.
Also 'tingling' in feet, sometimes hands, not something that is supposed to happen with 5fu. I have the folinic acid as well.
How long was your picc line in for? Don't really like the sound of it, even more side effects! But not looking forward to another 25 weeks of cannula jabs. Is the picc suitable for living on a smallholding?
Seems strange that this is a common regime for rectal cancer, but there is nothing on it. Like how severe the side effects get after 10, 20, 30 weeks etc so can plan some sort of life. Most cycles are individually longer but fewer of them it seems.
I had my picc line in for about 12 weeks I think. I had fortnightly chemo sessions and couldn’t even bear to have clothes touching my skin afterwards as my arm was so sore. Removing the tape that had held the cannula in reduced me to tears and, at that point, they suggested a picc line.
Mine was on the inside of my upper arm as that is where they found the ‘juiciest’ vein and took a couple of hours to fit. They basically nick your arm, push the line through until it goes into a larger vein above your heart then send you for an X-ray to check it’s in the right place. Doesn’t sound that great now I’m typing it but it was completely painless.
I suppose the downsides would be
You have a permanent cannula in your arm which can be covered with a stretchy bandage but is still noticeable when wearing short sleeves.
You can’t get it wet so no swimming and you have to get a waterproof sleeve from the chemist to protect it when showering
You cannot swing your arm about so no tennis, golf or any activity that would simulate something similar
The line needs flushing once a week although that wouldn’t be an issue if you were on weekly chemo.
The trouble with chemo is that everyone reacts differently so it’s hard to predict what side effects kick in when. I personally found that the tingly feet got worse as my treatment went on and they wouldn’t do my last one as my feet were looking red and they actually got quite a bit worse after stopping and I’ve still got hot, numb, tingly feet now 2 years down the line.
Well you’re 20% of the way through now and I hope things carry on ok for you
Hmm, I think I will keep a cannula for as long as possible, at least until the school term finishes as don't fancy going to work with a picc line! Would be difficult to work at home as well (I work for myself most of the time).
I accept that come September I may have to review whether I can go into school, due to the side effects, mainly tiredness, as not good to use machinery, I am a DT technician.
Thanks for your description though, nice to get a real account. Still not keen on one though. Difficult to manage in my situation.
Yes I’m doing ok thanks. Still got hot tingly feet but have reflexology every few weeks which helps a bit. Had a 2 year clear scan back in March and I think the surgeon will sign me off in July and I’ll be under the Colorectal nurses for the next couple of years after that.
It’s a tough journey and there’s no right or wrong way of dealing with it so you just have to do what’s best for you. Keep ticking off those sessions and make sure you have lots of treats along the way
I’m on the same 5FU and I’m half way through, had to stop to give birth in between as this is a low dose of chemo I started in when pregnant. I’ve found I’ve suffered minimum symptoms such as dry skin which they prescribed Aveno , really bad headaches that somethings last 3 days not good when having a newborn. Occasionally get a itchy rash on my arms which I’ve now been given an allergy medication to stop the itching. I’m not good with needles so have to look away and keep breathing when they put in the cannula. They sometimes put a heat pads on my hands to bring my veins up so it’s easier to get the cannula in but lucky as I’m only there about an hour when I see others been there for over 6 hours. I did also had a collapse vein on one hand which bruised the vein all the way up my arm which was strange looking it’s slightly come back but still bruised after weeks.
