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Thread: Hives after FOLFIRINOX

  1. #1
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    Hives after FOLFIRINOX

    I've had five chemo infusions to date (started early May 2019). My treatments are every 14 days. I've never had hives before after treatments.

    6 days after the last treatment, I started to get hives. They started in small patches here and there, mostly on my upper body. Then a day later they covered probably 30-40% of my body. They got so bad (kind of felt like how a reaction to poison ivy feels) that my wife took me to the ER.

    In the ER, the hives got a little better after IV drugs (benedryl, dexamethasone, pepcid), but they didn't go away completely. (Important note - at no time did I have trouble breathing. However, my pulse and BP stayed much higher than normal.)

    The following day at home, after taking oral drugs (benedryl, prednisone, pepcid), the hives didn't seem to respond. They persisted.

    Later in the day, I took a long shower and used an oil-free cleanser. I followed that with a heavy coating of water based lotion all over my skin. And then I covered up with long sleeves and pants (I'm in Houston, so it's really hot and I normally wear tshirts and shorts).

    The hives really calmed down after that! By the next day I was free of hives.

    Getting to a question - Do you think the hives are a response to the chemo drugs? I've read a lot of info online about a small percentage of patients having significant allergic reactions to Oxaliplatin.

    I don't get along well with Oxaliplatin. During infusion, I develop muscle twitches and almost a numbness in my tongue. I sound drunk when I try to speak. After I get home, I usually sneeze a lot for several days and also have some nasal congestion.

    Alternatively, could it be possible that since my immune system is so low that I'm not able to fight off the stuff I'm normally allergic too? I'm pretty allergic to dust mites, pet dander, and molds, and we have plenty of that stuff around home.
    Apr. '19 - Diagnosed Stage IV with many liver mets, CA 19-9 500,000
    May. '19 - Started chemo - FOLFIRINOX
    Jul. '19 - CA 19-9 100,000
    Aug. '19 - CA 19-9 77,000 CT scan shows shrinkage in tumors
    Sep. '19 - CA 19-9 52,000 (continuing chemo)
    Houston,TX

  2. #2
    Super Moderator Top User ddessert's Avatar
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    6 days is a pretty long delay onset for the hives to be due to one of the chemo drugs. Although it might be that many days before your WBC rebounds enough to even cause that type of reaction. Look at your WBC numbers over the last few cycles to see if anything new is happening.

    Being in Houston in the summer can also bring on sun/heat related issues. I know some chemo drugs make people more sensitive to sunlight and your description seems to fit that.

    Also, it is not unheard of to develop a new reaction to something after being exposed to it several times. I developed an allergic reaction to CT contrast dye after a dozen CT scans, but that is well treated with steroids. Yours does not seem to be helped by steroids (plus the 6 days before onset).
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

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    Right, same thought here. The 6 day delay seems a little strange. It is hard not to get hot here. I try to stay indoors as much as possible, but I do occasionally have to get outside to go on errands or do something quick around the house.

    My WBC has slowly decreased since chemo started in early May. (it may fluctuate some, but my blood tests are always done on the day before chemo) The last count was 3.7. I think the normal low end is 4.5.

    Do you think a drug like Neulasta would help? I was given Neulasta a day after my first chemo treatment ended, but my doctor hasn't prescribed it since and seems resistant to give it again.

    I have a hard time with steroids. They make me very jittery and anxious, and I cannot sleep. My doctor's answer to a lot of symptoms so far has been Benadryl and steroids.
    Apr. '19 - Diagnosed Stage IV with many liver mets, CA 19-9 500,000
    May. '19 - Started chemo - FOLFIRINOX
    Jul. '19 - CA 19-9 100,000
    Aug. '19 - CA 19-9 77,000 CT scan shows shrinkage in tumors
    Sep. '19 - CA 19-9 52,000 (continuing chemo)
    Houston,TX

  4. #4
    Super Moderator Top User ddessert's Avatar
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    Neulasta really only increases the neutrophil counts, not the other kinds of white or red blood cells. I’m not sure if that is the problem - nor it seems is anyone else.

  5. #5
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    Quote Originally Posted by ddessert View Post
    Neulasta really only increases the neutrophil counts, not the other kinds of white or red blood cells. I’m not sure if that is the problem - nor it seems is anyone else.
    I saw my oncologist Tuesday, and she didn't have any answers regarding the hives. My blood test Tuesday showed my neutrophil count around 1, so my dr. postponed my chemo (that was scheduled for Wed.) by a week.
    Apr. '19 - Diagnosed Stage IV with many liver mets, CA 19-9 500,000
    May. '19 - Started chemo - FOLFIRINOX
    Jul. '19 - CA 19-9 100,000
    Aug. '19 - CA 19-9 77,000 CT scan shows shrinkage in tumors
    Sep. '19 - CA 19-9 52,000 (continuing chemo)
    Houston,TX

  6. #6
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    Quote Originally Posted by legodude View Post
    I saw my oncologist Tuesday, and she didn't have any answers regarding the hives. My blood test Tuesday showed my neutrophil count around 1, so my dr. postponed my chemo (that was scheduled for Wed.) by a week.

    I had hives once after my 2nd session of gem/abrax...also no breathing issues. THey went away by next infusion.
    When i was on Folirinox i experienced the same muscle twitches (they would last several hours) and my speech would slur (numb tongue) THe nurses responded like they had never heard of this...at first thought it was a reaction and gave me bendryl....which made it worse. I continued those symptoms throught my infusions and just knew they were coming and would brace for it.
    Hopefully the hives were a fluke!
    +++++++++++++++++++++++++++++
    53 yrs old
    3/8/18 went to ER w/what i thought to be gall bladder issues...CT and MRI found 1.5 cm spot on body/neck of pancreas
    3/10/18 Followed up with endoscopic u/s and biopsy. No mets/contained
    3/20/18 started 4 cycles of Gem/Abrax followed by distal pancreatomy.
    5/15/18 CT scan showed tumor shrinkage .97cm
    7/11/18 Pre surgery CT scan shows slight tumor growth (1.2cm) could be necrosis.
    8/3/18 distal pancreatomy/splenectomy-open procedure. No mets, no lymph node involvement.
    9/26/18 CA19 33 NORMAL
    10/10/18 CA19 up to 53. Time to go back to treatment!
    10/10/18 Starting 3 mos Folfirinox adjuvant therapy.
    5/12/19 CT scan shows enlarged lymph node at surgical site. EUS biopsy determines cancer. Local and contained.
    6/22-26 Begin radiation. SBRT 5 day regimen.

  7. #7
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    Steroids: I was awake with no sleep for 2 days following chemo and asked the Dr to cut them back. He gave me half the usual dose which let me get the sleep i needed - you might ask re a smaller dose. No ideas about the hives. Loved your description of chemotherapy in your first post, so apt!
    Mar. '18 - Diagnosed Stage IV with liver mets CA-19 124,000
    Apr. '18 - Started chemo - Gem, Abrx, Cis
    July and Sept '18 - Ct scan - all tumors shrinking
    Oct. '18 - CA-19 - 1,495
    Oct. '18 - Started Gem, Abrx 1/2 dose

  8. #8
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    I got chemo yesterday. 30 min into the Oxaliplatin infusion I got to feeling really bad. Nausea, vertigo, and hives.

    They paused the infusion for about 30 min. and gave me benadryl and steroids. I felt a little better after that.

    Then the Oxaliplatin was restarted but at half the rate. I did fine after that. The hives went away. I was able to complete the chemo treatment.

    Quote Originally Posted by susanmac View Post
    I had hives once after my 2nd session of gem/abrax...also no breathing issues. THey went away by next infusion.
    When i was on Folirinox i experienced the same muscle twitches (they would last several hours) and my speech would slur (numb tongue) THe nurses responded like they had never heard of this...at first thought it was a reaction and gave me bendryl....which made it worse. I continued those symptoms throught my infusions and just knew they were coming and would brace for it.
    Hopefully the hives were a fluke!
    I hate the numb tongue. I sound like I'm drunk (without the benefit of alcohol

    Same thing with me regarding the nurses during my first treatment. They didn't know what to do and were checking me for symptoms of a stroke. I told them to look at the literature they'd given me that morning. It clearly states that neurotoxic effects are possible. Twitches, spasms, etc.

    Quote Originally Posted by jamiepat View Post
    Steroids: I was awake with no sleep for 2 days following chemo and asked the Dr to cut them back. He gave me half the usual dose which let me get the sleep i needed - you might ask re a smaller dose. No ideas about the hives. Loved your description of chemotherapy in your first post, so apt!
    I hate the steroids. And I got pumped full of them yesterday.

    I got my dr. to prescribe Ambien to help me sleep. I hate to fight drugs with drugs, but enough is enough. Not getting sleep is the worst.
    Apr. '19 - Diagnosed Stage IV with many liver mets, CA 19-9 500,000
    May. '19 - Started chemo - FOLFIRINOX
    Jul. '19 - CA 19-9 100,000
    Aug. '19 - CA 19-9 77,000 CT scan shows shrinkage in tumors
    Sep. '19 - CA 19-9 52,000 (continuing chemo)
    Houston,TX

  9. #9
    Moderator Senior User BrigitteM's Avatar
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    I hate steroids too! Many patients are told to take it in the morning, but, with my oncologist's blessing, my preference is to take it mid-afternoon. By doing this, I have less trouble with sleeping. I may wake up earlier than usual, but at least I'm able to fall asleep.

    When I do have a problem with sleep, I take an Ativan pill, but this doesn't happen too often.

    I also use a facial spring water atomizer (from Avene) to calm down the flush on my cheeks, another cortisone side effet.
    __________________________________________________ ___________________
    1/12/2016 No symptoms except ongoing fatigue; blood test revealed elevated liver enzymes
    1/18/2016 Liver ultrasound, then MRI confirmed enlarged bile duct
    1/21/2016 ERCP and placement of a temporary stent
    1/28/2016 CT-Scan showed a lesion on the head of pancreas
    2/09/2016 2nd ERCP + EUS + FNA
    2/12/2016 DX Borderline resectable pancreas ductal adenocarcinoma - Stage 3 @ 61
    2/24/2016 FOLFIRINOX 3 cycles (6 infusions)
    5/12/2016 CYBER-KNIFE Stereotactic Radiation 3 sessions
    6/16/2016 WHIPPLE + portal vein and right hepatic artery reconstructions - 0/19 nodes pos - no mets. Restaged to 1A
    8/31/2016 FOLFOX for 3 cycles (6 infusions)
    Sept 2016 Know Your Tumor - PANCAN.org
    11/4/2016 CT Scan clear - NED
    May 2017 Liver lesion - DX mild fatty liver disease - NED
    Aug 2017 Several small lung nodules - slow growth - NED until August 2018
    Aug 2018 Pancreatic metastasis confirmed by biopsy.
    Sept 2018 Starting clinical trial with RX-3117 and Abraxane (NCT03189914)
    March 2019 Lung nodules are stable

 

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