Good news and bad news today at chemo

Kathryn_in_MN
Kathryn_in_MN Member Posts: 1,252 Member
edited March 2014 in Colorectal Cancer #1
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.

http://www.caringbridge.org/visit/kathrynblume

Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
    praying for you!
    I sure hope your days ahead are less stressful than your infusion was! That's really scary! Keep fighting!
    mary
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Boy Kathryn
    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
    Sundanceh Member Posts: 4,392 Member
    K-n-M
    Kathryn

    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.

    -Craig
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Kathryn
    Good news regarding the CEA - Yay! I am sorry for the other problems you had.
  • KathiM
    KathiM Member Posts: 8,028 Member
    Darn! I remember my port acting up, too...
    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
    tootsie1 Member Posts: 5,044 Member
    Girl!
    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!

    *hugs*
    Gail
  • Crow71
    Crow71 Member Posts: 679 Member
    I hate this. Why do ports
    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?

    Roger
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Crow71 said:

    I hate this. Why do ports
    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?

    Roger

    Kath jut get concentrate in the good news ! CEA is normal!
    so I thing all the unforeseens are worth it dond you think?
    Hugs!
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Sundanceh said:

    K-n-M
    Kathryn

    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.

    -Craig

    So Craig wich is the plan
    after radiation?
    Hugs!
  • coolvdub
    coolvdub Member Posts: 408 Member
    pepebcn said:

    Kath jut get concentrate in the good news ! CEA is normal!
    so I thing all the unforeseens are worth it dond you think?
    Hugs!

    Hoping you a feeling better
    Kathryn,

    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.

    Don
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Treatments
    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.

    Kim
  • Wenchie
    Wenchie Member Posts: 88
    Kathryn
    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.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    Sundanceh said:

    K-n-M
    Kathryn

    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.

    -Craig

    Appointment Friday
    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.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    Sundanceh said:

    K-n-M
    Kathryn

    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.

    -Craig

    double post, sorry
    double post, sorry
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    Crow71 said:

    I hate this. Why do ports
    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?

    Roger

    Don't know
    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.
  • PGLGreg
    PGLGreg Member Posts: 731

    Appointment Friday
    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.

    BP 165 doesn't sound that
    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.

    --Greg