Xelox - what to expect...????

[Vol]

I see the head of Oncology for colon cancer at Vanderbilt tomorrow just to have an expert second opinion on the treatment plan I got from my local Oncologist. The plan is 8 cycles of XELOX starting next Monday (each cycle being 3 weeks). I already have some neuropathy from Diabetes, but nothing compared to what it looks like the Oxi does. Is the neuropathy seen by all oxi consumers or just some? I'm an IT guy and typing is a big part of what I do - anybody have experience with this and being able to type?

I would appreciate any advice on Oxi side effects people have had and what you did to deal with them? any advice on how to avoid them?

I have to work, and my cycles will end in February. Looks like cold really makes Oxi neuropathy worse, anybody go through Oxi in the winter and have advice on what to do? One thing I read said not to even put ice in drinks...

Thanks in advance for your thoughts and advice!!

One last question - probably nothing. I'm 16 days after my resection (7 in incision to remove 12" of colon and the appendix). I'm still getting drainage from my bellybutton. Does not smell, is not yellow - no pain. does not seem to be lessening... Should i exercise more? Am I doing too much? See the surgeon again middle of next week. May be nothing...

Vol

[midlifemom]

Hi Vol,

My first few treatments with full oxi gave me muscle spasms. My hand would seize up, fingers straight but pulled in to the palm. I could usually use the other hand to straighten out the affected hand. Butt, then I had problems with my leg muscles, that's when the oxi dose was dropped and the claw hand didn't happen again.

Only suggestion for oxi in winter is to put a scarf over your mouth when going outside to warm the air before it hits your lungs.

Good luck.

[lpas]

I just completed 8 cycles of XELOX and definitely have some neuropathy. It didn't really set in for me until right around the last treatment. Unfortunately, since finishing in July it's been getting worse. Typing is still possible, but I'm a little slower and clumsier than I used to be. It also hurts my fingertips a little. The keyboard always feels cold to me now. What I've noticed more is that I have trouble buttoning my daughter's buttons and picking up small things like pills or coins. Everyone seems to be different though.

Good luck to you!

[cathy123]

I only had 4 xelox (and Oxi was reduced from the start) so no neuropathy. But I did want to mention that the cold sensitivity, muscle spasms etc are different from neuropathy. Those I had right from the start (I think they may have been worst the first few cycles) but they go away after a week or so. Cold weather will not be fun - I was lucky to start in April but even then chilly mornings made me cramp up, and the freezer aisle at the grocery store was painful. And definitely no cold drinks. But again all this is temporary.

My onc said if the symptoms were not gone by the next cycle that was when he would cut the dose further. But he also warned that neuropathy can peak after treatment.

[horizon]

I did 6 months of Xelox. You have to remember that every reacts differently. I had some mild neuropathy and hand/foot syndrome. I never had problems typing the whole time. I would get Oxi on Wednesday, work from home on Thu/Fri and be back in the office/gym on Monday. The cold sensitivity sucked and I eventually started microwaving drinking water.

It's important that you tell them of all symptoms so that they can lower your dosage if needed. Drink tons of water on the infusion day. I also put Udderly Smooth lotion on my hands/feet before I went to bed to try and help with the hand/foot syndrome.

[PainInTheAss]

I only had 4 xelox (and Oxi was reduced from the start) so no neuropathy. But I did want to mention that the cold sensitivity, muscle spasms etc are different from neuropathy. Those I had right from the start (I think they may have been worst the first few cycles) but they go away after a week or so. Cold weather will not be fun - I was lucky to start in April but even then chilly mornings made me cramp up, and the freezer aisle at the grocery store was painful. And definitely no cold drinks. But again all this is temporary.

My onc said if the symptoms were not gone by the next cycle that was when he would cut the dose further. But he also warned that neuropathy can peak after treatment.

Yes, this is a very important distinction. Cold sensitivity hits right away and wears off before the next infusion and usually doesn't really get worse. Neuropathy can start and worsen at any point in treatment and up to 3 months after the last infusion. It can then 1) quickly disappear, 2) gradually get better over about 2 years but remain mild or 3) 1% of patients develop permanent grade 3 neuropathy. There's no way of knowing what will happen to you but my Onc told me that people with diabetes are usually affected the most.

Because of this, there have been trials with fewer rounds of oxi that show the same effectiveness. I would seek several opinions, especially from a cancer center. You can always tell your current oncologist you want to do fewer rounds if it's recommended by several other doctors. They are usually pretty flexible since treatment is ultimately voluntary. I am stage IIIc and I only did 6 last year. Some patients recently have posted that their Onc had them do 5 and even 4 rounds. More rounds may not be more effective but definitely can increase your chances of having some level of permanent neuropathy. If you have diabetes, you are at greater risk.

[Vol]

Got the Oxaliplatin yesterday. Not too bad, do have the sensitivity to cold, so glad I had the advice from these messages. Can only drink room temp water, cold water on my hands when washing leaves them tingling like crazy. I few squirts of hot water and they are good again. Only strange thing I've had, is the wrist that I got the infusion has "pins and needles" from the wrist UP to the elbow. ...hands are fine if they are warm... This seems to be getting better with time.

Just wanted to thank everyone (Cathy123, Horizon, Midlifemom, Ipas, PainInTheAss) for the info...

Pain - your advice was very good. The second opinion doctor had a hard data study that Vandy will release in January that says 4 cycles is as effective of 8 for the Oxali - with the Xeloda... My Rx is 4 cycles of Oxali and 8 of Xeloda now!!

Thanks all!!!! This is such a wonderful place for knowledge, data and support!

Vol

[cathy123]

I had the numbness / pins and needles in my arm after infusion also. Sometimes it was worse than others - I think it depended where the IV was and if any nerves were close by. It went away by a week or so.

Glad the first one went well. That is awesome you only need 4 with oxi. After that xeloda only will be a piece of cake! Keep up the liquids and the lotion on your hands and feet.

[horizon]

Something else 'fun' you might encounter is what's called 'first bite pain'. Your jaws hurt when you take your first bite of a meal. Really weird and would have freaked me out if this forum hadn't informed me about it. Not a big deal but annoying.

[Nik Colon]

My side effects you can see on the first page of my link in my sig. The first few posts mainly. I only had 3 with oxi because of se. Last one my disco nurse had me go to er thinking I had a stroke, all was fine but they took me off to be safe, I'm sure it was the oxi, my face and arm still had numbness which is why nurse was concerned and thought maybe stroke. Winter, blanket and cover face/mouth. Hospital actually let me take their blanket home. I had folfox not xelox, but pretty much the same thing.