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Good news and bad news today at chemo

Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

I feel like I was ran over by a Mac truck, and I'm fading fast. Here is the short version. The long version is on my CaringBridge page.

After 3 tx of FOLFIRI and Irinotecan, my CEA is in normal range!!!! 2.7 yesterday.

Bad news - port wouldn't work, took 2 hours, over 20 salines, 2 heparins, lay back, cough, breathe deep, move the arms, sit forward, stand up, the clean-out solution, a new nurse, and re-accessing with 3 separate needles. 2nd nurse, 3rd needle worked.

After just over 50% of Irinotecan, allergic reaction. Didn't get the rest of the drug. Home with 5-FU infusor now.

BP hit 165/89 or 98 - can't remember which. The highest ever in my lifetime. Yesterday at onc appt it was 110/60, which is normal for me. Came down a bit after Solumedrol and Benadryl.


msccolon's picture
Posts: 1956
Joined: Oct 2004

I sure hope your days ahead are less stressful than your infusion was! That's really scary! Keep fighting!

Lori-S's picture
Posts: 1286
Joined: Sep 2010

You've really had some problems with those ports. I'm so sorry to hear it. UGH on the allergic reactioon too. I'm hoping you feel better soon,

Sundanceh's picture
Posts: 4408
Joined: Jun 2009


I'm thinking they are going to have lower the strength of your dosage with Folfiri if you are to continue with this. From what I can see, this type of thing does not suddenly get better.

I did 2 treatments of Folfiri - then we suspeneded - and started the radiation and 5fu pump portion of the treatment. In December, I'm scheduled to resume Folfiri again.

My onc currently has me on 75% strength of the dosage and said as long as I tolerate that, we'll stay with it. But, I am ready to adjust as needed.

Drugs are no good if our bodies will not tolerate the dosage. Chemo is serious business, just like radiation. This won't be the time to force it.

I'm sorry for the reactions you are having - it makes me think if I will experience similar things as we march towards #12. I'm already pretty beat up, and alot of times wonder how I'll make it through April and May 2011, when I'm scheduled to wrap up.

You really have had a bad time with ports. I hope all is clear sailing in that regard. And I hope we can both withstand the regiment we are on.

Watching and cheering for you.


pepebcn's picture
Posts: 6352
Joined: Aug 2010

after radiation?

Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

I have an appointment Friday for us to discuss where we go from here.

I have my PET/CT later in the day. With my CEA back to normal, I have a feeling my scan will be clear. Then the question becomes how long to stay on chemo, and what cocktail? No answers yet, just more questions.

The good news is this cycle is easier to tolerate than the last one, by far! Of course I got a lot less poison in my body this time. My chemo nurse called me today to check on me and see how I was doing. That was so sweet of her. She was really concerned Friday. She mentioned how sad it was to see me go from bubbly and talkative to looking like I'd been run over by a truck and barely able to speak. I think I scared her. My disconnect nurse on Sunday said my BP was approaching stroke stage. She was concerned about my slight fever, but I always go up and down between 97 and 100 for about a week during chemo. That doesn't scare me. The BP spike sure did.

We'd reduced the Irinotecan by 10% and dropped the 5-FU bolus and reduced the 5-FU by a good chunk too. But since I only got just over 1/2 the Irinotecan bag, I'd say we reduced it by 50$ Friday. I'm not sure if they can slow the infusion and reduce the dosage even more? Or will that be so little that it isn't worth it? I do NOT want to go back on FOLFOX. I'd be back to desensitization and 10 hour days in the infusion room - not to mention my neuropathy in my feet is still awful.

Maybe the Avastin is making the big difference, not the Irinotecan. That is what I am hoping! I hope you do ok on 75% dosage when you resume.

PGLGreg's picture
Posts: 741
Joined: Jul 2006

BP 165 doesn't sound that awful, to me (mine was higher before I started taking the blood pressure medication Benicar). CEA in the normal range sounds really good. I hope I'm not being premature in congratulating you on the good result.


Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

double post, sorry

Posts: 3692
Joined: Oct 2009

Good news regarding the CEA - Yay! I am sorry for the other problems you had.

KathiM's picture
Posts: 8077
Joined: Aug 2005

They threatened to insert directly into my arm...I said "Are you kidding me????"...

They worked a bit longer...5FU came home with me, too...

I'm dancing for your CEA level!!!!

Hang in there, dearheart...we are all pulling for you!!!

Hugs, Kathi

tootsie1's picture
Posts: 5065
Joined: Feb 2008

Love the CEA number, but the rest of your story is the pits. You need to have a regular old visit at the doctor's office one time. No drama of any kind!


Crow71's picture
Posts: 681
Joined: Jan 2010

I hate this. Why do ports dislike you so much?! You are such a likable person.

Great to hear about the CEA.

Will you stay on Irinotecan?


pepebcn's picture
Posts: 6352
Joined: Aug 2010

so I thing all the unforeseens are worth it dond you think?

coolvdub's picture
Posts: 410
Joined: Aug 2009


I like the fact your CEA is in the normal range, yay for you. It sounds like that port has been nothing but trouble. Would be nice if things would just settle down and go smoothly for you. Keep up the fight as best you can, just rest and regroup mentally, so you can win the battle.


Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

I don't know what the plan is until after appt with the onc this Friday.

As for ports, I don't know what the issue is. But I said third times a charm and I'm keeping this one for life. I hope it doesn't act up again.

Annabelle41415's picture
Posts: 6722
Joined: Feb 2009

So sorry that the treatments have been so hard on you. Hoping that it will get easier and you can get something to help you feel better.


Posts: 88
Joined: Apr 2009

I feel your pain with the ports! I had three of them until I finally got a picc line in my left arm and it's heaven compared to those damn ports. After the nurses poked and prodded my port, I ended up with a pulmonary embolism and sepsis! ICU is no fun. Look into the picc line if they're having that much trouble with your port. I keep an ace bandage wrapped around my upper arm but I've had it for over a year and I'm used to it now. No more pain with them accessing that darn port! The only pain is that I have to flush the lines with saline and heparin every day but that's nothing compared to the port.

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