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Second Infustion Yesterday

Sunriver's picture
Posts: 50
Joined: Sep 2006

I posted on here two weeks ago when I had my first FOLFOX infusion.

In case you missed it, I was diagnosed in August 2006, had a resection and was staged at 2a NO/MO. After a brief hiccup due to a lower bowel blockage which sent me back to the hospital for a week and an introduction to the NG tube very special experience), my recovery has been very good. I do not have any incision pain and have been exercising including swimming and kayaking (flat water), running and playing tennis. My bowel movements have returned to normal.

Currently I am taking a liquid multi-vitamin, Super B-Complex, Coenzyme Q10 and Glutamine (all onc approved).

when I went in for my first chemo infusion they attempted to take blood from my new port with no luck. After some trying they moved to a longer needle (1”) with still no luck. They ended up taking my blood work out of my arm. I was told that I would get premeds of calcium and magnesium (before and after the infusion) and decadron before. The infusion itself was to consist of /leucovorin and oxaliplatin followed up by a dose of 5fu and then a pump with 46 hours of 5fu. They consider what I get to be between folfox4 and folfox6.

Yesterday they were once again unable to get blood from mhy port. So now when they take the pump off in a couple of days they are going to once again put some stuff in it to desolve clots and it has to stay in for 24 hours to I have to go back the next day to have it taken out and see if in works - again. In the mean time my onc is putting my on a mild blood thinner and a baby aspirin to see if that will help get a blood return from my port.

As far as side effects this time around I have increased jaw pain when I initially try and chew something. After a few chews it goes away but if quite painful for a few seconds. Yesterday I had some cold sinsitivity in my hands but seems to be less today. Afer my infution yesterday I had an acupuncture treatment for nausea which helped. I had some nausea the evening of my previous infusion but not last night. Other than that no other side effects.

KathiM's picture
Posts: 8077
Joined: Aug 2005

WOW! What a great report! I am discounting the port stuff, it sounds like me a little...one time, the onc nurse felt a clot, and then just decided to keep PUSHING fluid till it cleared. I asked her, with as much restraint as possible, "Do you think that NEXT time you could try DISOLVING the clot, instead of pushing it aside?"....idiot!

Hugs, Kathi

lfondots63's picture
Posts: 822
Joined: Jan 2006


It sounds like you are doing good so far. I wish I had known about the L-Glutamine for the neuropathy before I was done chemo. Oh well, can't go back in time. I also did accupuncture and Reiki for chemo effects. I think it helps too. My nausea wasn't too bad. I just had problems with my taste buds and not being hungry. I had the port problem once or twice too. Had to turn my head sideways, move my arms all kinds of stuff. I must have look great doing this. Glad my nurse was nicer then Kathi's. I might have hit her. LOL. HUGS.

Lisa F

spongebob's picture
Posts: 2598
Joined: Apr 2003

Sunriver -

Sounds like you are doing really well - except for the port issues. I used to have port issues, but I switched over to white wine. It isn't as sweet as port though...

Anyway, keep up the good work!

jerseysue's picture
Posts: 626
Joined: Oct 2005

With my port I need to be lying back before they can get a return. If I sit up during chemo it beeps with an occlusion. Try lying back a bit if you haven't tried that yet?

chynabear's picture
Posts: 483
Joined: Jul 2005

Just out of curiousity, are they putting in... what's that stuff called?... heprine or something? Anyway, it is clear and put in after each treatment and stays in the port to keep clots from forming until your next visit.

I would assume they are, but if not, you might want to ask.

Sunriver's picture
Posts: 50
Joined: Sep 2006


The "stuff" is activace (not sure of the spelling. It's more super duper than the normal heprine that they always put it.

Limey's picture
Posts: 447
Joined: Mar 2004

my first try at getting a return took 12 tubes of saline and allot of arm flapping. I remember having to pee really bad arterwords (due to all the saline I drank. overall it sounds like your tollerating the Folfox well. the port issues will resolve. keep up a positive attitude. there is a CD put ot by health journeys. www.healthjourneys.com that is supposed to be really helpful to listen to during infusions (i listen to on on dealing with pain and it helps)
Keep up the good work. I disagree with Spongebob - I think port is more bitter than white.

Sunriver's picture
Posts: 50
Joined: Sep 2006

Yeh, they've had me turn my head, lay down, caugh, raise my arms - the whole deal - no blood though.

I started listening to music to calm my nerves on airplanes and so I purchased my first MP3 player for my infusions. I used it this time for the first time and it was geat. All my favorite songs. A nice way to relax and not think about the drugs going in.

jams67's picture
Posts: 927
Joined: May 2006

I had the same problems you are having with my port. They tried the gymnastics and drugs in the port but were never able to draw blood out, always able to put in drugs. I was on a blood thinner, etc. It turned out to be a blocked blood vessal and that caused swelling in my face, neck, and chest. Only a lucky few have this so yours will probably resolve itself, but just so that you are aware that it could occur. My regular doc was not familiar with it, nor was my allergist. The onc finally realized what was happening. That is when I started on the blood thinners which did not work. After chemo March 06, I had the port removed, June 06. There is very little swelling left, but it took about 4 mo. to go down. This is called Superior Vena Cava Syndrone if you want to look it up SVCS. http://www.acor.org/cnet/62844.html
I can't get this website to copy, but you might try the acor.org site. Hope this helps. I had stage 4 and the port was as much trouble for me as the cancer. Would I have a port inserted again if I had to have chemo? Probably, because the infusion is much easier with it, and the SVCS is a rare occurance. Sorry to write a book, but if you are like me you want to know all of the information so that you have some idea of what is happening to your body. jams

vinny3's picture
Posts: 933
Joined: Jun 2006

You might ask one of your doctors to take an x-ray. They can see if the port line doubles back or is kinked with that. Otherwise once they get it clear they will probably keep heparin in it. The jaw sensation is the "first bite syndrome". That usually, at least for me, was the first few days. The cold liquid and finger intolerance lasted for a few days longer at first and then gradually got to last longer each time. It sounds like you are tolerating it well.


jams67's picture
Posts: 927
Joined: May 2006

I'm remembering that first bite! Wow! I can't believe that I forgot that and its only been since March. Try, I know this sounds gross, licking the first bite until that sensation passes. jams

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