New Oxaliplatin Victi... err.. Patient

BillO60
BillO60 Member Posts: 72
in Colorectal Cancer #1

I just did a quick scan looking for others who've had issues with Oxaliplatin and one post answered about 3 of my questions.

I went for first treatment today and tolerated it well.  The doctors and nurses have been upfront about the neuralgia so when the infusion site and a space of about 10 inches above the site started tingling (minor pin prick type).  The infusion went for about 2 hours and the sensation didn't start until about 90 minutes into it.  They had given me some type of cortisone med and an anti-nausea med IV before giving me the chemo. 

I'd asked the nurse how long the sensation in my arm would last and she said it would probably last until I was no long receiving the Oxaliplatin.  I'd understood that for most people the neuralgia goes away sometime after the chemo is completed but was surprised that since I'm getting the infusions every 3 weeks that the symptoms stayed on in between treatments.  Sitting here and typing this now, it's been about 7 hours since I received the Oxaliplatin and the area that was prickly now just feels sore, kind of like the skin had a mild sunburn that's only noticeable when something touches it.

Other than the above, I've had sensitivity to cold when pulling something from the refrigerator or freezer.  Kind of a prickly sensation in my fingertips that goes away as soon as I quit touching the item.   As an experiment (and because I've lost 10 more pounds in the last 2 weeks and figured I deserved it) I went and bought an ice cream cone. The sensation wasn't too bad, just some tingling on the front of my tongue and as someone else described it, a "fizzy" sensation on my tongue when I ate the ice cream.

Plus, when I first start chewing something my jaw hurts for about 5 seconds.  I'm glad someone else mentioned that one because or I might have missed the connection.

Since I get stuck each time I go in for the infusion I was wondering if I should try to have them start the I.V. in the same arm and in roughly the same place so that I only have one arm that's getting the brunt of the tingling, numbness, etc. which, according to the nurse, will likely get progressively worse as I proceed with the treatments.

Also, is there anyone that's been on IV Oxaliplatin and oral Capecitabine that has an ileostomy and did they notice any change or problems controlling output?  I'm on Lomotil and Immodium and really haven't found that either of those have been all that effective. My ileostomy tends to have a mind of its own already in regards to when, how much, and how quickly it decides to fill up a bag. Just wondering if this chemo will create more of a problem.

Thank you -

Bill

 

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2
    No port?

    I am surprised that you do not have a port. Is there a reason for this? 

    Because of the port, I cannot comment on the neuralgia. Neuralgia is actually a nerve pain, so I am not too sure what is happening to you. Did the Doctor's say it was neuralgia or are you maybe thinking neuropathy, which is what most of us on Oxi get. 

    Be careful eating and drinking the cold stuff, especially right after infusion. As the treatments progress, it could get worse. The tightness in the throat can be quite frightening.

    The 'electric shock' feeling on the first bite of food is an interesting one. It didn't last throughout my treatment, only the first three or so. 

    The 'shock' when touching cold things, can also increase. And again, for me, didn't go on throughout treatment. 

    I didn't do oral at all, but went home with the 5FU hook-up. 

    My list of side effects wtih Oxaliplatin was quite extensive. If you're interested here is a post from my past. Not for the faint hearted. http://csn.cancer.org/node/292593

    Sue - Trubrit

     

  • abrub
    abrub Member Posts: 2,174 Member
    #3
    With oxaliplatin, ask for a port.

    you don't want that seeping around an IV.  ask if they'll give you a port.

    Yes, I  had First Bite pain that felt like lightening bolts to my face (a form of trigeminal neuralgia.) Mine lasted 30+ seconds.

    Alice

  • BillO60
    BillO60 Member Posts: 72
    #4
    abrub said:

    With oxaliplatin, ask for a port.

    you don't want that seeping around an IV.  ask if they'll give you a port.

    Yes, I  had First Bite pain that felt like lightening bolts to my face (a form of trigeminal neuralgia.) Mine lasted 30+ seconds.

    Alice

    Might get a PICC line if it becomes a problem

    During my hospital stay they I couldn't eat for almost 3 weeks so they started a PICC line to give me Total Parenteral Nutrition.  Since I knew I'd be getting some kind of an infusion chemo after I was discharged I'd asked the surgical team to check with oncology about leaving it in once I was discharged. Whoever they spoke to felt that it was an infection risk so they removed the PICC line the day I was discharged.  When I went for my first infusion I asked about a port and they said they'd only do it if I wasn't able to tolerate the treatments.

    I definitely agree that I wouldn't want oxaliplatin seeping around the IV but I keep a very close eye on the infusion site and would clamp it off at the first sign of it leaking.

     

    Bill

  • BillO60
    BillO60 Member Posts: 72
    #5
    Trubrit said:

    No port?

    I am surprised that you do not have a port. Is there a reason for this? 

    Because of the port, I cannot comment on the neuralgia. Neuralgia is actually a nerve pain, so I am not too sure what is happening to you. Did the Doctor's say it was neuralgia or are you maybe thinking neuropathy, which is what most of us on Oxi get. 

    Be careful eating and drinking the cold stuff, especially right after infusion. As the treatments progress, it could get worse. The tightness in the throat can be quite frightening.

    The 'electric shock' feeling on the first bite of food is an interesting one. It didn't last throughout my treatment, only the first three or so. 

    The 'shock' when touching cold things, can also increase. And again, for me, didn't go on throughout treatment. 

    I didn't do oral at all, but went home with the 5FU hook-up. 

    My list of side effects wtih Oxaliplatin was quite extensive. If you're interested here is a post from my past. Not for the faint hearted. http://csn.cancer.org/node/292593

    Sue - Trubrit

     

    That's Quite a List

    I read the list of side effects you experienced and yikes!  I've only had one dose so I'm sure things could get worse over time or new side effects will pop-up.  Since I haven't been on any infusion chemo I'm of course analyzing everything that's going on with me so your list and the other posts are helpful so I at least have something to compare with any symptoms I might have.

    I normally drink about 3 quarts of room temperature Gatorade a day to stay hydrated and for the small amount of potassium it provides. I hadn't drank any soda in a couple of years but bought a bottle of diet 7-Up before I'd gone for the chemo just for some variety.  I noticed today that if I drank it when it was cold my throat didn't exactly close but it did feel odd like I was having trouble swallowing.  Once I let it go to room temperature that sensation went away. Lesson learned, I'm only drinking hot or room temperature drinks.

    Other than feeling tired today (which is most days anyway so I'm not sure I can blame the chemo) the other symptoms like the "sunburn" sensation in my arm and the cold shocks when I pull something from the refrigerator have pretty much gone away.

    You're correct, it's neuropathy not neuralgia. Sometimes my fingers type faster than my brain works. I'm going to blame that on brain fog and the chemo.Foot in Mouth

    I'm only making an assumption but I'm guessing they didn't start me out with a port because I'm only receiving an infusion every 3 weeks.  They've said they'd only put one in if I had trouble tolerating the treatments.  So a port could still be in my future.

    Bill

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #6
    BillO60 said:

    That's Quite a List

    I read the list of side effects you experienced and yikes!  I've only had one dose so I'm sure things could get worse over time or new side effects will pop-up.  Since I haven't been on any infusion chemo I'm of course analyzing everything that's going on with me so your list and the other posts are helpful so I at least have something to compare with any symptoms I might have.

    I normally drink about 3 quarts of room temperature Gatorade a day to stay hydrated and for the small amount of potassium it provides. I hadn't drank any soda in a couple of years but bought a bottle of diet 7-Up before I'd gone for the chemo just for some variety.  I noticed today that if I drank it when it was cold my throat didn't exactly close but it did feel odd like I was having trouble swallowing.  Once I let it go to room temperature that sensation went away. Lesson learned, I'm only drinking hot or room temperature drinks.

    Other than feeling tired today (which is most days anyway so I'm not sure I can blame the chemo) the other symptoms like the "sunburn" sensation in my arm and the cold shocks when I pull something from the refrigerator have pretty much gone away.

    You're correct, it's neuropathy not neuralgia. Sometimes my fingers type faster than my brain works. I'm going to blame that on brain fog and the chemo.Foot in Mouth

    I'm only making an assumption but I'm guessing they didn't start me out with a port because I'm only receiving an infusion every 3 weeks.  They've said they'd only put one in if I had trouble tolerating the treatments.  So a port could still be in my future.

    Bill

    ACK!

    Soda is bad enough, but diet soda is awful. I'm not here to tell you what to do but DO NOT DRINK DIET SODA!  See, I didn't tell you what to do, I told you what not to do. HA! 

    OK! Sorry about that little outburst. 

    I would want a port, even if the chemo was three weeks apart. When they work properly, they are wonderful. 

    Whatever you do (and whatever you drink), know that we are here to support you and help you through it. 

    Also, know that my list of side effects is pretty extreme, and most people don't suffer quite so much. 

    I didn't post a list for my Radiation. That would just be far too frightening. Way worse than the Chemo list. 

    Sue - Trubrit

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