Folfox #5 didn't go well at all

okthen
okthen Member Posts: 232
edited March 2014 in Colorectal Cancer #1
Jack went in yesterday and had lab, platelets in 160's. Onc said he could have chemo today, and he decreased the Oxal for the 2nd time.
Couldn't get a blood return on his port so he had to go have an xray before they would start treatment, that worked out okay. I left him to get lunch, then sat with him for about 30 minutes. Left to come home and check on our daughter...hadn't been home 30 minutes, get a call from the Onc nurse, Jack was having a reaction..told her I was on my way. Thank god our center is only 5 blocks from home..couldn't get there fast enough.
When I got there he was shaking, red, short of breath, burning in his rectum. I could tell that he was shy about telling the nurses what he was feeling. Sometimes it sucks that there is no privacy during chemo, and sometimes it's wonderful to visit with the other patients...anyway..they had already given him benedryl and albuterol by the time I got there. His b/p was 180's over 100..he complained of chest pain. Onc came in to check on him and sent him to ER.
In the ER he got Epi shot and EKG. Radiology came in to take chest xray...told them he had just had one an hour ago..oh..okay, never mind then. Nurse came in with 4 baby aspirin...she used to babysit my kids and knew I was a nurse so she didn't give too much attitude when I pointed out the chemo crashes his platelets and he is not to take aspitin.. AT ALL. ER doc didn't realize and also kept pronouncing Oxaliplatin wrong. I know, shouldn't have an attitude, but I also know I'll be getting a bill for 2000.00...want to get my moneys worth. (o:
Stayed in ER for 3 hours, dismissed to home with him feeling okay. He told me NO MORE CHEMO. I let him vent, but boy my stomach hurts when he starts talking like that.
Walked over to Cancer Center before he was dismissed, talked with Onc, he said no more Oxal. He will visit with Jack next Tuesday...he told me to let him talk with him next week and try not to be upset or try to talk him into anything..that sounds wrong writing it out, but it was comforting when he said it.
I hate this so much, no one deserves this crap, he's pretty shaken up. I just want this all to go away.

Comments

  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #2
    AWW!
    I am sorry Jack (+ you) had this to go through. That must have been pretty scary. I think the onc is taking a good approach, + it gives him a chance to come up with a plan, + also Jack has time to recover from this.
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #3
    That sucks!
    I'm so sorry you both had to go through all of this. It truly sucks when things don't go right and/or there is any kind of suffering that you weren't expecting... when, there shouldn't be. I think what makes it worse is when the professionals (nurses, doctors, technicians, etc) either don't know what's going on and it "appears" to be because they just aren't paying attention. "Oh, you've already had a chest xray? Oh, nevermind" Uh ya... not only is a second one within an hour not necessary, both from a radiation point of view, but also from a cost perspective... but why didn't they already know this?? Where is the communication around the patient??

    Drives me insane, but if it's any consolation... it's a universal problem. It happens EVERYWHERE and I just don't understand why.

    I think your onc is being very smart. You know, when anyone is upset, no matter what it's about or who is at fault, the last thing you should ever do is expect them to be reasonable and rational when at the moment, they are upset, pissed off, scared and just plain angry because nothing is going right and they don't have control over it. In a week, he may still be feeling he's had it and he's not going to have anymore chemo... on the other hand, when he talks to the oncologist, if he tells him that because of the reaction from the oxal, then let's remove that from the situation and then perhaps he will find the rest of the treatments go much better with no side affects. If that happens, then it's very worthwhile to continue them. Imagine taking chemo that is working on the cancer AND there are no side affects? Can't argue with that!

    I feel for both of you... and I really hope that things will settle down. Please keep us posted!

    Cheryl
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #4
    Hi Chriss
    I was wondering how you 2 were doing. I am so sorry for Jack's reaction and all the ER hoopla. It's good that you are an RN and can help stay on top of things. Being medically trained can be both a blessing and a curse when you are a caregiver. Sommetimes we worry because we really do know what things mean when others can go forward without the same worries when they don't have a clue. But, it's times like these when having the background is the best patient advocate practice. I'm glad that you told them not to be giving him aspirin.

    I hope that a little rest and then you consult with the onc will help things settle down and get some things cleared up for you. Give Jack a big hug and take care of yourself too! HUGS
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #5
    poor jack lucky he is got your support
    I also had my 5th folfox today.

    I am so sorry that Jack had such a severe reaction. it really frightens me.
    I appreciate my kind folfox ride sofar even more. I am thanking God as we speak.
    I don't take my reasonable good days for granted.
    I had my folfox today and it went well, touch wood.

    I got a bill of 2000 as well from my icu doctor. maybe they went to the same seminar or its an international conspiracy. When things settle , maybe ONC and you and Jack can have a chat about a new plan in a peaceful environment. If oxali is to blame, get this cler at the start and say its off the table and at least let the ONc give you the best options going forward.

    goodluck Pete
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #6
    I'm sorry there was such a
    I'm sorry there was such a hard time with the treatment. I hope he feels better over the weekend and you two can take this time to think up questions for your onc new plan of action. I'm sure he will have one.

    Best of luck, wishes, and prayers to you both

    Gail
  • geotina
    geotina Member Posts: 2,111 Member
    #7
    Geez
    I'm sorry Jack had such a rough experience, it can be pretty scary. When he sees the onc next Tuesday hopefully they can get a new game plan going.

    It is tough as a caregiver to watch your loved one going thru this stuff, you want to fix it, make it go away and you can't and it hurts and is scary to watch knowing there is nothing you can do but being as supportive and encouraging and loving as you can.

    Take care - Tina
  • okthen
    okthen Member Posts: 232
    #8
    Ya'll always say the right thing!
    Thanks guys for the support!
    Pete, I am so happy for you that treatments are going well! Very happy!
    Jack started folfox about the same time lou and lori...he was skating along pretty good until number 5, other than postponements for platelets, his side effects were minimum. Or he knew I would worry more and he just didn't let on...anyway, bottom line, no more Oxal.

    Be well,
    Chriss
  • tr71068
    tr71068 Member Posts: 26
    #9
    So Sorry
    So sorry to hear he is having a bad time, I can totally understand what he is going thru I have bad reactions everytime. They just keep changing it up. I hope he feels better and my thoughts and prayers are with both of you.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #10
    Awful
    It's awful that he is going through this but can understand his frustration. You should wait until next week with his doctor appointment and go over everything that is going to happen in the future. Maybe no more of that one drug is a good thing as that can be so devestating on one's system. Tell him that he is being thought of.

    Kim
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #11
    What a hard day for you both
    I am glad that they were able to get the reaction symptoms under control. He had a significant scare.

    Your Jack is so lucky to have you as his advocate and his wife.

    Sounds to me like chemo patients need to have medical alert bracelets. For those not fortunate enough to have their advocate close at hand it might save their life.

    Hope that by the time of the next doc visit that Jack is feeling less threatened by the chemo.

    Hugs,

    Marie who loves kitties
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #12
    sorry
    Wow- I'm sorry you and Jack have been through all this! I know about the oxy reaction- had it too. They kept me on it for a while w/ benadryl and steroids, but I trust when his onc says "no more" it's probably for the best. I had my reaction the first time, went on to be able to have 9 treatments, then reacted on the 10th treatment again even with the benadryl and steroids- it definitely is scary.
    Hopefully Jack will hear about and realize that not all chemos are like oxaliplatin. He can switch to Folfiri (main agent irinotecan- also called CPT-11 and Camptosar) & the allergy thing should not be a problem. I've heard of so many people have allergic reactions to the oxy lately- sheesh!

    You take care and I will pray that Jack is alright and will see that there are other chemos he can/should still take.

    Hugs,
    Lisa

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