Oxaliplatin side effects

[JoG]

I started my first of 8 rounds of Xelox chemo treatments on the 13th and the Oxaliplatin IV was a bit of a nightmare. Within a few minutes of the line being flushed after the IV was finished, my lips went numb, I couldn't swallow and felt like I was choking, my vision went blurry, I got an instant headache and felt dizzy, nausea, unable to walk unassisted, a weird rash appeared at the site of the IV, and I had 'pins and needles' (more like daggers and machetes, though) in my IV arm. The only thing that took away the pain in my arm was boiling hot heat packs. I also couldn't ingest anything that wasn't hot. This lasted for 3-4 days and has slowly subsided over the last 2 weeks, although occasionally mildly flares up again when I take the capecitabine tablets. I'm wondering if anyone else has had a reaction like mine and if it's gonna happen every time I have an IV? Is this a normal reaction? Or maybe just my body getting used to the chemo? I'm a little anxious about going through another 7 rounds like that! I kind of feel a little ripped off as I've been told by the medical team around me on numerous occasions that the chemo I'm on is mild/gentle and I should be able to just live my normal life...so far, that has not been the case! Any thoughts/advice/tips to get me through would be most appreciated

[Jacques]

Yes, there are people here who have had this kind of reaction when on Xelox. Maybe some of them will check in and leave some comments.

Here is some information on oxaliplatin desensitization:

Hypersensitivity Reactions to Oxaliplatin and the Application of a Desensitization Protocol
http://theoncologist.alphamedpress.org/content/9/5/546.full.pdf+html
Oxaliplatin desensitization questions
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=35164#p246839
Allergic reaction to Oxi
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43093#p304849
Desensitization protocol for oxaliplatin
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57906&p=456018#p456018

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[[Ana & Alex]]

Dear JoG,

I had a very scary reaction to oxaliplatin in my first cycle as well. I felt like i was going to die, instant neuropathy, terrible nausea, obstipation, headaches, cold sensitivity, weekness, unable to walk alone, spasms on hand and feet, jaw pain - very similar to your description. And from day 2 until day 6 it was at its worst, but living the pause week at the moment, some symptoms are still lurking in.

I've talk to my oncologist and this is our game plan for this next Wednesday:

Pre medication: Antihystaminic (Benadryl), Steroid (Dexametason), Nausea (Zofran).
Oxaliplatin: full dosis running in a 5 hour period.

For me, controlling nausea was the hardest. A combination of Steroids, Zofran and Haloperidol (5 drops 3x a day) was what helped me best.

If this doesn't work, we are reducing the dosis to 80% and I'm asking for Desensitization for round three.

I really felt like dying after Oxi. I'm already anxious that I have to make it AGAIN. Is the most horrible feeling I had in my life... but I'm thinking, I will do at least a couple more and if it keeps getting worse I will try the ADAPT Protocol with Xeloda monotherapy and Celecoxib or something similar.

It's really horrible, I know.
Trying to keep strong....

Good luck, and know that you are not alone,
Ana

[ashima2016]

Within a few minutes of the line being flushed after the IV was finished, my lips went numb, I couldn't swallow and felt like I was choking, my vision went blurry, I got an instant headache and felt dizzy, nausea, unable to walk unassisted, a weird rash appeared at the site of the IV, and I had 'pins and needles' (more like daggers and machetes, though) in my IV arm.

This could be allergic reaction to Oxi. My hubby had reaction at treatment #5. Luckily he didn't need an EpiPen and things got under control. Make sure you let nurses know as soon as the reaction shows.

[Maia]

JoG,

If oxaliplatin is unbearable, doctors can prescribe Folfiri instead of Folfox.
Also, I see you have 8 sessions planned; I don't know if this applies to your case, but to bring to your doctor's attention, recent news from ASCO indicates that 3 months --6 cycles-- of Folfox are as good as 6 months --12 cycles-- of Folfox for certain Stage III patients. In fact, they are better because the lesser neurophaty. viewtopic.php?f=1&t=58091

[PainInTheAss]

I started my first of 8 rounds of Xelox chemo treatments on the 13th and the Oxaliplatin IV was a bit of a nightmare. Within a few minutes of the line being flushed after the IV was finished, my lips went numb, I couldn't swallow and felt like I was choking, my vision went blurry, I got an instant headache and felt dizzy, nausea, unable to walk unassisted, a weird rash appeared at the site of the IV, and I had 'pins and needles' (more like daggers and machetes, though) in my IV arm. The only thing that took away the pain in my arm was boiling hot heat packs. I also couldn't ingest anything that wasn't hot. This lasted for 3-4 days and has slowly subsided over the last 2 weeks, although occasionally mildly flares up again when I take the capecitabine tablets. I'm wondering if anyone else has had a reaction like mine and if it's gonna happen every time I have an IV? Is this a normal reaction? Or maybe just my body getting used to the chemo? I'm a little anxious about going through another 7 rounds like that! I kind of feel a little ripped off as I've been told by the medical team around me on numerous occasions that the chemo I'm on is mild/gentle and I should be able to just live my normal life...so far, that has not been the case! Any thoughts/advice/tips to get me through would be most appreciated

This is not the same thing as an allergic reaction. I had the same thing happen on my second or third infusion (except for the rash) and the nurses had to keep running to look up each thing to see if it was a reaction or side effect. They are all normal, but kind of rarish side effects. I mentioned all of this to my Oncologist and, surprisingly, he recommended Ativan. They did an IV of Ativan the next infusion and it greatly reduced all of these side effects. After that, he prescribed Ativan pills and I took some an hour before each infusion and for a few days after. It helped a lot, so you should ask your Onc about that. I never had to reduce my dosage. I don't know about that rash, though.

The cold sensitivity happens to just about everyone, though. For me, it kept lasting a little longer with each infusion. My last infusion, I only had one day of being able to eat cold things before my next infusion. Also, many foods, like ketchup, taste weird. Mashed potatoes and pickles taste great on Oxi, for some reason. I've never heard anyone say Oxi is "mild and gentle." It's tough, but not as harsh as some chemos are for other types of cancer. I usually had two tough days, and then it would slowly get better until the next infusion. I could function fairly normally after those two days other than being really tired. Two days after the infusion, I would sleep for 24 hours. My teen daughter would say she would lose me to the "sleep monster" for a full day. A lot of people plan for this and have that second day land on a weekend, so infusion Thursday or Friday so it hits hardest Saturday or Sunday, but those initial side effects like blurry vision and locking muscles would usually be less severe later that evening. I stopped driving home on infusion day after the first time. It was too scary with my vision so blurry, but I could drive in the evening.

[JoG]

Thanks for your replies. I've spoken to my oncologist who is adamant that what I went through is a normal reaction and won't give me anything else to counteract the severity of the symptoms other than to move the IV line. I'm not happy at all considering I just spent 2 weeks bed-ridden with various side effects. Once the oxaliplatin side effects subsided, in kicked the nausea etc. from the capecitabine. To make matters worse, the drugs I was given for the capecitabine side effects didn't reduce the severity of them at all, gave me a burning pain in my left kidney and kept me up until dawn so I stopped taking them and just slept my way through the side effects (kidney pain also went away). I've also had a previous drug reaction in May post surgery to opioids which I have been told to never take again. I just don't feel that my concerns are being heard by my oncologist at all and am considering taking things into my own hands regarding taking something to try and lessen the side effects before I start my next round. I'm anxious and desperate at this point as I can't go through all that pain again.....

[Jacques]

Thanks for your replies. I've spoken to my oncologist who is adamant that what I went through is a normal reaction and won't give me anything else to counteract the severity of the symptoms other than to move the IV line....

There's another option that could be considered, namely spreading out the infusion time ovrr a longer period of time. This would give you the same amount of oxaliplatin but would reduce its toxic effect:

* ...The feeling of difficulty swallowing, shortness of breath, jaw spasm, abnormal tongue sensation and feeling of chest pressure. This has been reported rarely (<5%). It generally starts within hours of Oxaliplatin infusion and often occurs upon exposure to cold. Avoiding exposure to cold (see self care tips below) helps to prevent this adverse reaction. Future Oxaliplatin infusions may be given over a longer time frame to help reduce the incidence.
http://chemocare.com/chemotherapy/drug-info/Oxaliplatin.aspx

[JoG]

There's another option that could be considered, namely spreading out the infusion time ovrr a longer period of time

...Yep, I asked for that too...and she won't do it!! She refuses to change anything other than the location of the IV and the nausea drugs which won't help with the nerve pain.

[Jacques]

There's another option that could be considered, namely spreading out the infusion time ovrr a longer period of time

...Yep, I asked for that too...and she won't do it!! She refuses to change anything other than the location of the IV and the nausea drugs which won't help with the nerve pain.

I don't know what to think. I don't understand your doctor's position. It looks to me like you are in the 5% of patients who have very serious reactions to oxaliplatin, and it seems to me that there should be some sort of contingency plan in place at your hospital to handle such situations.

In my hospital, the allergy physician there told me that I could get a prescription for an Epi-Pen emergency kit to keep with me at all times in case I had another bad delayed reaction affecting my ability to breathe.

Indications
EpiPen® (epinephrine) 0.3 mg and EpiPen Jr® (epinephrine) 0.15 mg Auto-Injectors are for the emergency treatment of life-threatening allergic reactions (anaphylaxis) caused by allergens, exercise, or unknown triggers; and for people who are at increased risk for these reactions. EpiPen and EpiPen Jr are intended for immediate self administration as emergency supportive therapy only. Seek immediate emergency medical treatment after use.
https://www.epipen.com/

Epinephrine (Epipen) 0.3 mg IM prn allergic reaction
• If the patient develops a moderate to severe reaction, such as acute dyspnea or angioedema, and/or acute hypotension, stop protocol, follow ACLS guidelines to treat, use Epinephrine (Epipen) 0.3 mg IM for hypotension or glottic edema, and nebulized albuterol for bronchospasm. Discuss the event with the attending allergy physician on call. When the patient is stable, the protocol may be resumed (with allergist's guidance regarding the rate at which to restart and with revisions if necessary).
https://hemonc.org/wiki/Example_orders_for_Oxaliplatin_(Eloxatin)_desensitization_protocol

[chemo sabe]

Now you know why people get a "port". It only took me one IV of that crap and I got a port. Why do you want to do this to yourself?? But the side effects of oxaliplatin are what they are and some do not go away. I still have neuropathy in my hands and feet and this is going to be with me the rest of my life.

[JoG]

Now you know why people get a "port". It only took me one IV of that crap and I got a port. Why do you want to do this to yourself??

...??? What are you talking about? I never said I wasn't going to allow the IV to be moved as per the medical advice from the oncologist, I'm just looking to see what else I can do to make sure that I don't incur the same reaction as last time! I live 40 minutes from a hospital and if something goes wrong and I'm not prepared, I'm toast!

[kellywin]

The lip numbness happened to me, the not swallowing happened to me twice (not counting the 2 times I accidentally drank something not room temp or warmer), the last time was in the infusion room walking out of my 5th infusion, I took a breath in and my throat seized. Told my Onc later and he cancelled my last infusion.

As far as the infusion in the arm, you absolutely have to keep a heating pad or hot blankets wrapped around your arm during the entire infusion or it's not going to be pretty (and it sounds like for some it's just flat out not pretty anyway). My 5th infusion my vein was really red and angry, they slowed down the drip quite a bit and it was better. For me, the vein was doable, but I was I scheduled for more than 6 infusions,I'd go with a port cause it's not necessarily a picnic in the vein.