The Colon Club

I noticed in the days after my first infusion that whenever my hands got the slightest bit chilled, they would freeze up. They didn't hurt but I had to use my other hand to curl or uncurl my fingers. A blast of cold wind hit me in the face the other day and my eyelids stopped working. I literally couldn't see for a few minutes because I couldn't get my eyes to open back up.

I was fully expecting the tingling fingertips, cold sensitivity and first bite pain, but the paralysis was a bit of a surprise. Fortunately, at 5 days post-infusion it now seems to be significantly better. Did anyone else have symptoms like this early on? Were you able to continue with the full Oxilaplatin regimen? Any lasting ill effects?

FYI, I'm doing XELOX, so apparently my dosage for each infusion is a bit higher than it would be with FOLFOX.

Yes that all can happen. It has odd neurological effects. Normal but still unpleasant.

I distinctly remember that my first episode of neuropathy happened during my initial treatment. I went to an evening meeting and it was cold outside. I stood around in the parking lot after the meeting to chat with a friend for 5 minutes before we got in our cars, and I had barely shut my car door when my fingers began to tingle. So yes, it's not unusual for these symptoms to show up almost immediately. I hope you don't have to spend much time out in the cold. I found that keeping a pair of winter gloves on the counter next to the refrigerator reminded me to use them whenever I opened the refrigerator. I learned to wear gloves when grocery shopping, too, even in the summer, in order to safely handle frozen products.

Mine never completly quit working but did have that slight affect. One thing I also had was the face/mouth numbness, like when you are in freezing Temps for a long time and you can't talk right. Also, have twitching eyes right after especially in the cold.

I had many of what you are describing and more after just one infusion. I was also on XELOX and my oxi side effects hadn't diminished much or gone away three weeks later....particularly the facial side effects. Talk to your onc, keep track of how quickly they begin (mine started within ~30 minutes of the infusion and make sure to tell your onc when they go away. I had the horrible tightening in the throat, even with room temp water in the infusion room.
When I went back for my second infusion and told the onc (I had called the nurse the week before and talked with her about it) about my prolonged side effects, he emphatically said NO MORE.

I had a two hour car ride and then a ferry ride home after each infusion. The first one was in November and colder than normal. I touched the car door outside while waiting for the ferry and the pain was terrible. All the way home on the ferry I kept swallowing because I felt like my throat was closing up. At home I touched my granite cabinets inside and the pain was again terrible. I did OXI for 8 rounds of Folfox out of 12. The symptoms disappeared after a day the first time, but they did get progressively worse and last longer till my onc felt the harm outweighed the benefit.

Lois

For me, the cold sensitivity was immediate...what I called the hand "spasm/lockup" still shows itself with certain movements, and I haven't had oxi for years now. It is a totally different type of pain than arthritis, which I also have a bit of in a couple finger joints. Anyway, I found keeping a couple of different sized heating pads useful when my hands or feet acted up due to the oxi, warming seems to relieve some of the symptoms....oxi is annoying, but effective. They make usb rechargeable hand warmers now also (if you work with computers)....didn't have those in 2008

Connie K.

Beware of facial side effects, particularly ones that swell up your mouth, nose and throat so much that you are not able to breathe properly.

To prepare for this possibility, you may want to ask your doctor for a one-time prescription for something like EpiPen, which is an epinephrine-based product designed to open up blocked airways in an emergency situation. If you manage to get a prescription for this, then keep the EpiPen product with you at all times, and if you ever need to use it in an emergency situation, then it will open up your airways long enough for you to get to the ER. This is a product that is to be used only in case of emergency, and only long enough to get you to the nearest ER. It is definitely not for chronic use.

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.
Reference: https://www.epipen.com/

I had Similar issues with hand spasms. After about 3rd folfox I also had my legs go numb!!
Oncologist said oxaliplatin can cause muscular in addition to neuro side effects. My dose was dropped and the muscular effects went away. Still had cold sensitivity and neuropathy but at least I got my legs and hands back.

Hi

I did my chemo and radiation in 2013. But I remember clear as day my first treatment. After the several hrs of chemo when I went to leave and grab the door I had no feeling in my hands. They told me I was very sensitive to the chemo for that to happen so quickly. My onc immediately reduced that drug. It helped but thru out my 6 months I would loose a good part of feeling. I got those cloth gloves for going in the fridge. After about 5 days I would get feeling back in fingers.
However still today I will at times have problems to sign a check etc. but for the most part I have no issues with hands or toes. Wishing you the best

I got what I've seen referred to as "claw hand", and I got that right away. The tingling as well, but I wouldn't describe it as neuropothy, because the neuropothy I have now (which didn't come on until after I finished chemo) is very different. I also had a lot of muscle spasms. My "claw hand" would last for one to three days or so if I remember. Driving was interesting and texting was almost impossible.

The only issue I had with my eyes was with crying, wow did that hurt.

As said above, keep track of your symptoms and tell your Oncologist. After my 5th infusion he cut me off because of a reaction I had with cool air.

Good luck.

I had similar reactions to oxi. My hands would curl up and I would have to pry them open after my second infusion. I had to wear gloves in the house if the a/c was running and whenever I went to get something out of the frig. I had trouble speaking - slurring my words badly. Of course, the chemo brain really kicked in too. I had pain in my jaws - front teeth, tops and bottoms, and still do today. I think the worst was the shooting pain that would run up and down the insides of my legs and arms - it was agonizing pain and felt hot and I could not move a muscle when it was happening. My oxi was cut back after the 2nd infusion, and every infusion after up to the 5th or 6th (I forget) and was then totally discontinued. The onc said he had never seen a person with side effects as bad as mine, lucky me, but I am sure there are many who suffered the same way I did. I have lasting side effects to this day but am grateful that they are nothing like what I had when I was on chemo.

My husband has finished his 4th cycle with oxi. Each time he gets the tingling/pain in his hands and feet from the cold. He states it subsides about 5 days after the pump comes off. We keep his beverages at room temp and he wears gloves before he reaches into fridge. When it first happened he was nervous, but now he expects it and we try to plan ahead. Good luck in your journey. Take care.

Mary
(I don't know how to do the signature)
Dx 10-31-14 Stage IV 45yr old
mets to liver,adrenal gland,lung

Mary - sent you a PM on how to do your signature.

I have had that claw hand, too (only two rounds so far.) It had been so darn cold here, that no matter what I wear out of infusion, I have tingling fingertips jst from the steering wheel on the way home. We just talked about side effects at my follow up - he told me that he wants all symptoms gone by the next treatment, and that if I have them the morning of treatment, we will drop the oxi that treatment. I'm trying to get in 6, but he said he wants to balance improving my odds with leaving me unable to type (and therefore unable to work as effectively). I'm going ahead with number three tomorrow, so we'll see how it goes.