Is it normal for the oxaliplatin to be an issue so soon?

Ruthmomto4
Ruthmomto4 Member Posts: 708 Member
in Colorectal Cancer #1

my husband has had only had 3 treatments with it and he is on day 11 from disconnect and still having numbness and tingling in his hands and problems with cold. He keeps saying he isn't going to tell them because he thinks it's too soon to cut it down. It did seem most people get to at least treatment 8-10 before it stays so long. He gets hooked up again Thursday. I keep telling him it could be permanent and not to mess around but he is worried cutting it down so soon won't make his chemo so effective. He is getting Folfox+ Avastin. He was also getting irinotecan but he had a severe reaction to it so it's gone.  

Comments

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    edited November 2017 #2
    Mine started by then, 2-3

    Mine started by then, 2-3 treatments in, and I did 12 without major lasting effects. It was straight Folfox, but it is the Oxi that really gets you. The cold stuff went away fairly soon after finishing the rounds, but the tingling and numbness stretched out for about a year and a half. I'm with your hubby about toughing it out some more, getting the effects isn't a harbinger of whether they'll go away, or not, at least it wasn't for me.........................Dave

  • SophDan2
    SophDan2 Member Posts: 150 Member
    #3
    they are different

    Make sure to differentiate between neuropathy vs. cold sensitivity.

    Throughout my treatment, I continued to ask my doctor "there is a difference between neuropathy vs. cold sensitivity right?" I did so, because the cold sensitivity was pretty intense within 1 hour of being hooked up for my treatment. my doctor assured me that there is a difference and recommended continueing with the Oxy.

    I hope that your husband chooses to do what is best for him.

     

    The part that I DO disagree with, is not telling your doctor what you're feeling throughout the treatment process. TELL THE DOCTOR EVERYTHING!

    Good luck!

     

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #4
    He is still having

    neuropathy AND cold sensitivity it has not gone away since the last treatment which started on the 2nd. He uses his hands for work so I am a tiny bit worried. Of course I know it's up to him, i was just wondering if it was normal for it to stick around from treatment to treatment so soon.  

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #5
    Ruthmomto4 said:

    He is still having

    neuropathy AND cold sensitivity it has not gone away since the last treatment which started on the 2nd. He uses his hands for work so I am a tiny bit worried. Of course I know it's up to him, i was just wondering if it was normal for it to stick around from treatment to treatment so soon.  

    I don't recall it ever

    I don't recall it ever leaving between treatments, but I can be a bit thick about those things, so I'd go with more recent experience as a guide.........................................Dave

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #6
    A late starter

    My neutopathy came on late but has not gone away, though it is not as bad as it was to start with. 

    My fingertips do not work, and I drop allot of things. My hands have lost their streght, which is also a nerve issue. I can squeeze and squeeze and squeeze and think I'm doing a good job, when in fact, I'm barely making a difference. It is a weird and disturbing side effect. 

    I agree with Dan, it is important to tell the Onc EVERYTHING. Let him make the decision. 

    Tru

  • NewHere
    NewHere Member Posts: 1,429 Member
    #7
    Mine Started A Bit In

    About 3-4 treatments, but would resolve before next treatment.  When it did not (my 9th treatment overall, 8th with Oxi) before the 10th, it was cut out.  Make sure you mentioned everything at every visit, take notes to bring.  My wife rememberd and observed what was happening to me more than I did, so listen to input.  We all probably compensate more than we realize.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #8
    Make a Statement

    Mine started happening around round 4 and at 5 couldn't get from one round to the other without complications and she (my oncologist) told me it was just a nuisance.  Well that nuisance turned into permanent. Make sure you're husband tell's the doctor about this.  I'm on medication for life now and it is almost 9 years later - PLEASE say something.  This drug is nothing to fool with.  Some can handle it and other's can't.  Wishing you and your husband the best.

    Kim

  • Woodytele
    Woodytele Member Posts: 163
    #9
    Oxi

    the Oxi is a pretty tough drug, one of my first infusions caused my mouth to basically become paralyzed and I couldn’t talk very well.  Cold sensitivity started pretty soon, almost immediately for me, and I still have neuropathy since stopping the Oxi a few months ago. You have to realize how powerful these drugs are, the symptoms you discussed are pretty typical. I got through 12 infusions, but they cut the dose on the last two due to neuropothy.  It ain’t easy. 

  • mozart13
    mozart13 Member Posts: 118
    #10
    Excellent response!

    Same thing happen to me, my oncologist told me that I had excellent response, dropped my dose of oxy, symptoms went away, started to criple back at dose number 6, after number 8th was permanent, so oxy had to be dropped out of the picture.

    3 months after oxy, neuropathy is still there, might last for years.

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #11
    Supplement Help

    I actually had a reaction to the oxy during treatment 3 of this round but this is my third time battling cancer and the neuropathy hit me every time. My chemo nurse told me to try Nature Made Vitamin B Complex daily to help and it has all but eliminated my neuropathy problems. She said the Nature Made brand worked the best.

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    edited November 2017 #12
    Phoenix_66 said:

    Supplement Help

    I actually had a reaction to the oxy during treatment 3 of this round but this is my third time battling cancer and the neuropathy hit me every time. My chemo nurse told me to try Nature Made Vitamin B Complex daily to help and it has all but eliminated my neuropathy problems. She said the Nature Made brand worked the best.

    I remembered this!

    i started him on it Saturday! I saw you post it one other and it stayed in my mind, thank you! Hoping it helps him soon.

  • abrub
    abrub Member Posts: 2,174 Member
    #13
    My problems started with the first infusion

    Do not withhold any info from your dr regarding side effects. They know what the body can tolerate,  and there is no "too soon".

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    #14
    Definitely have your husband

    Definitely have your husband to mention every side effects to his oncologist. They can adjust the dosage according to his reaction from it. 

  • aoccc2015
    aoccc2015 Member Posts: 37
    #15
    See if you can push your doc

    See if you can push your doc to do as many scans as you can during the treatments..mine was strong and it worked quickly. Maybe I could have done many less or lower doses if i would have had more scans but i just kept pushing. Now that i need it again, my hands and feet are still a bit numb when pressing them but they still wont let me use it again yet.

  • NewHere
    NewHere Member Posts: 1,429 Member
    #16
    Try Not To Beat Yourself Up On Scans

    The what ifs though in all this is always tough.  If we went for a test earlier to find it...urgh. 

    But try not to beat yourself up about getting more scans for a few reasons aoccc2015.  I had a series of scans over a year (starting 3 months after I started chemo) where it was unclear on size changes due to being possible timing of contrast and other factors.  Another thing is that the chemo is also being used to knock out things that may not be seen - cells that are out and about and tumors too small to see.  

    I guess a doctor could possibly stop treatment if they saw a radical positive change, but I would guess they would complete the treatment cycle.  (This is a good subject that I may look up to see if studies on.  There are so many out there. )  

    Best thing is to make sure to mention everything to the oncologist, reactions as going along are going to affect changes in treatment, especially with mop-up chemo (where usually 12 treaments, once every other week for 6 months) after surgery I would guess.  Longer term constant chemo may be a bit different where there may be breaks.  Going to look around for more information on this also.  (It looks like I heading back to chemo myself due to having inoperable spot come back.  Watching scans to see when it grows.)

     

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    edited November 2017 #17
    He did tell them

    They said as long as it comes and goes it's not an issue. They said when it stays and never lets up then it's a problem, I am thinking by then it's too late but for now they made no changes. His blood pressure was high when he got there but after the treatment was almost over  it came way down so they gave him avastin. They tried to give him irinotecan again but he refused it.  the reaction he had the first treatment was awful and turned into pancreatitis so not doing again thank you. 

  • aelathali
    aelathali Member Posts: 1
    #18
    Treated with Oxy

    I started the Oxaliplatin/5-FU/Avastin/Leucovorin regimen in June 2015 and was on all four until December that year.  Your husband's timing for neuropathy and cold sensitivity matches mine.  I was getting treated every 2 weeks, and it would be around the midpoint between treatments before my cold sensitivity stopped.  The neuropathy gradually increased until it didn't go away between treatments, and now 2 years later is permanent in all four extremities.  Not always the case, but that's where I am.

    Please don't keep things from the doctor - they are the professionals.  

    Keep fighting like hell!

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