The Colon Club

I am going in to talk to my oncologist about my mop up chemo, which will be the XELOX regime.

One of the questions he asked last time was about a port - I had just finished my APR and wasn't looking for any more surgeries, so I said I didn't need one. However, in searching this board, I found a lot of people saying infusions without the port are terrible.

Is that the general consensus? What're the things that make the infusions without the port bad? Is it pain, or something else?

Thanks in advance!

Hey there Sinewave,

My husband had 6 cycles of Xelox last year. For the first one, he didn't have a port and got the Oxaliplatin directly infused into his left arm. It was pure torture, so he got a port implanted for the next 5, which made the process a lot less traumatic! Basically during the infusion his arm grew extremely painful (and he's not super sensitive to pain), and it remained so for several weeks afterwards. Based on his experience I'd say get a port!

The chemo through a IV (PICC line) is supposed to be terrible on the blood vessels. My husband wrestled with the idea of a port. He really did not like the idea of it, made it feel like he was a cancer patient, and at that time he was having a hard time accepting the reality. So many people recommended against doing the chemo through IV/PICC line, fellow cancer patients and medical providers alike, that he went with the port. It was the right decision, I believe.

I did six rounds of Xelox without a port. I also didn't want another procedure. After my resection 4 weeks later was in the hospital with a bowel blockage and had to have surgery to remove scar tissue and also had my ileo reversed at the same time. I was in the hospital for 3 1/2 weeks so I asked my oncologist if I could try without a port. I figured it was only 6 rounds and if it was horrible I could get a port. The infusions on Xelox are every 3 weeks so you do have an extra week for your veins to recover, whereas folfox is every 2 weeks I believe. I did fine, just be sure you stay hydrated as it does make it easier to access your veins.

I would choose a port, if given the choice. There are different kinds of ports. Some can be used also for other purposes, like blood draws for blood tests, or for antibiotic administration, or for infusions for Total Parenteral Nutrition (TPN) whenever necessary. Ask what kinds of ports they have available at your hospital:

https://www.mskcc.org/cancer-care/patient-education/your-implanted-port

Good luck on your infusions and your Xelox regimen! Xelox is not easy -- that's for sure -- but it's doable.

If you're on the fence, maybe go without a port for the first infusion and see how it goes? Like Susie0915 said, you get 3 weeks between infusions, which is enough time to get a port inserted should you react strongly to direct vain infusion.

I did six rounds without a port. I did not have any issue at all. I did it in my arm at inside the elbow joint.

Cynthia

Jack&KatiesMommy wrote:I did six rounds without a port. I did not have any issue at all. I did it in my arm at inside the elbow joint. Cynthia

Same here. Found it very doable, switching arms/elbows each cycle. I believe the hot packs that the nurses diligently applied may have made the difference. Keeping the receiving arm warm, was to keep the veins wide open, they said, allowing the Xelox to disperse quickly

.

I have lousy veins, and every IV is a torture. I can't imagine having gotten through 12 rounds of FOLFOX and now Keytruda every three weeks, not to mention countless blood draws, without my port. I love my port. I get my scans done at a place where they can't access my port, and thus have to have an IV. The latest was last week. Nasty, painful, and took 2 tries. Reminded me of how much I appreciate the port.

ETA: if I thought I were only going to have, say, 6 infusions, 3 weeks apart, I *might* have chosen not to have a port. But I've heard that oxy does a number on your veins, and the degree of certainty regarding ongoing treatment varies, naturally.

LeonW wrote:

Jack&KatiesMommy wrote:I did six rounds without a port. I did not have any issue at all. I did it in my arm at inside the elbow joint. Cynthia

Same here. Found it very doable, switching arms/elbows each cycle. I believe the hot packs that the nurses diligently applied may have made the difference. Keeping the receiving arm warm, was to keep the veins wide open, they said, allowing the Xelox to disperse quickly

.

I did six rounds without a port also. The first infusion in my hand was painful but we moved the infusion site up to my elbow joint for subsequent rounds and it wasn't a problem after that. We alternated arms and kept heat on before and during infusion. The oncology nurses were all so great.
Best of luck whichever you choose.
Margie

Seems like everyone has different experiences with this - I did two rounds of FOLFOX without a port, and it was pretty rough. My veins did NOT like it at all, and my arm looked like a roadmap for a couple of months after. I actually think the long 5-FU infusion was tougher than the oxi - it’s just such a long exposure to a mildly corrosive drug. I also think I may have had some mild extravasation on the first cycle. I ended up having the port replaced just to finish the last 2 treatments of neoadjuvant chemo.

Having a port really is no big deal for me; I rarely notice it now.

That said, there’s definitely things you can do to make peripheral more tolerable - be well hydrated, choose a big vein (ideally higher up the arm - we ended up doing bicep), a big cannula, keep the site warm the whole time (heat pack); and as you’ve seen other folk seem to have had no issues.

Good luck

Thank you for the feedback everyone!

This board is such a great resource and I appreciate you sharing your experiences.

I didn't even think they would do it without a port. The surgery for putting on in is very simple. A port is the way to go in my opinion!

I had several rounds of oxaliplatin through my arm and would not recommend it. It's nasty stuff which will chemically burn the veins in your arm. With a port it goes in a much larger blood vessel and so is diluted much quicker avoiding this damage. Any error in placing the iv or if it withdraws during the infusion can have serious consequences - may need skin grafts.

I have a port for my second go round, wish I'd had it back then.

For what its worth - I would be a strong proponent for a port as well. It made the infusions so much easier and less uncomfortable (and you need all the less uncomfortable as you can get).

The procedure to implant it was as easy as pie - I don't think it took longer than thirty minutes or so. It was just a little incision with a steri-strip over it. They used propofol to knock me out like a colonoscopy and then poof I was back in recovery.

In addition you get a cool bracelet to wear and card that shows you are in the club.

The removal was also a breeze - in the surgeons office with a little local. We chatted about things the whole time. It was a bit weird feeling when he pulled the catheter out.

Now that I have to go through this for the second time I will for sure get another one installed...

-Andy