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second trip with Folfox and not liking it one bit

jillpls's picture
jillpls
Posts: 241
Joined: Mar 2008

HI I am just finishing up my first round of folfox for the second time. I was DX in 06 and had 4 months of folfox in 07. Was clear until 08 then went on Folfiri. Clear for most of 09 but now back on Folfox. I don't know if I just don't remember it being so hard or it's just gotten harder on me, but I'm sick most the time. I will ask the dr for Amend because I've tried everything else to get through. I even wake up getting sick. Not so much fun. Have others been put back on Folfox and had a harder time with it??
Also, my port didn't work right. That scared me. I have to go in for a dye test to find out if it's clogged or broken. Then still used it but they couldn't draw blood out, only put drugs in. Strange.

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

i wa not put back on folfox. i have done chemo three times and I have to say oxy was the worst. Mean, dirty, creepy little drug...I was sick a lot!

good luck with your port and hang in

mags

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I has to raise my arms above my head for blood to be drawn from my port. Don't know why but it always worked.

I had my port taken out, and don't look forwarded to having it put back. BTW, the incision is a lot bigger with the port coming out then going in.

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Hi
It is not uncommon for a port not to work both ways. Mine only gave blood the first few times then quit. The most important is that it is working for the chemo to go in. I saw people at chemo that had to turn one way or the other, even lay way back with their head lower than their bodies in the recliner to get theirs to give blood. We tried every which way but mine never would give blood again. I was just glad it kept working for the chemo.
Best wishes
Pam

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I'm not liking it one bit either... #4 tomorrow.

Emend really helped me a lot. I get Emend, then Decadron and Aloxi. Before the rest of the chemo drugs. Then one pill for day #2 and one pill for day #3. (I still have nausea, but I'm not near as bad as without the Emend.)

My port hasn't worked for blood draws a couple times. But then they put in this stuff to clean it out two weeks ago (TPA or something like that - can't remember the name for sure). It worked great after that two weeks ago. We'll see how it works tomorrow. I've had fluids go in when blood wouldn't come out. They told me that is common. Think of a strawberry shake. You suck it up a straw and a chunk of strawberry blocks the end of the straw. But if you blow into the straw, it pushes the strawberry out of the way, so you can get things in, even if you can't get them out. And blood is thicker than the liquids they put in. And if you get any little crystals or things near the opening to partially block, it can be hard to get the blood up even if you can get fluids in.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Mine never can open or get blood through it unless I have that apolexi? which is stronger then the Heparin, since the heparin never works either, but the nurse has the apolexi sit connected to the tube doe awile, checking every 10 minutes or so , and the blood comes right out with that.

I've had to do all that as well, sitting in the recliner all the way back. Raising arms above my head, putting my head to the right, and making me cough. The port just never works right away, mine sucks, and it's a power port. They have to keep doing this everytime I go there!

Hugsss!
~Donna

Annabelle41415's picture
Annabelle41415
Posts: 6517
Joined: Feb 2009

I had a Power Port too and it never gave me problems. I didn't have blood taken too much from that as I had to pay for the hyper needle and administration costs which I didn't think was fair so I would just get it out of my arm. But when I did have blood taken it was never an issue and when they hooked me up to infusion they always checked for a good blood line, or back up blood and it worked perfectly. Sorry you have to go through all that.

Kim

Annabelle41415's picture
Annabelle41415
Posts: 6517
Joined: Feb 2009

I'm so sorry you are back on the Folfox. I know it was hard on me for the time I was on it. I ended treatment in September and am still finding that neuropathy has taken over big time since I quit. I'm also sorry to hear about your port. I can't complain about mine as it worked very well and everytime it was needed. Hope you get some relief and if you don't, please talk to your oncologist, they might want to change your meds.

Kim

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