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Round 2 mostly a bust

afretiredky's picture
Posts: 28
Joined: Jul 2009

Yesterday was interesting and I was wondering if anyone has experienced this. Once I finished the Oxy and was signing the slip for my home supplies, I noticed that my hands were turning into claws. I could barely write my name and my thumbs kept drawing into my palms. I got up to go to the restroom and I could barely walk. My feet were turning inward and my muscles just didn't want to cooperate. The nurse and my husband had to help me walk the short distance. The strange sensation in my hands seemed to be traveling up my arms and I could tell it was in the muscles, same with my feet and legs. They took my blood pressure and it was 179 over something and at that point they got the nurse practitioner to come in. They finally decided I was having a reaction to something, but the NP wanted to say it was the Folfox, which I hadn't even had yet...took me awhile to convince them of that. I got Benadryl and Pepcid IV and they decided to have me skip the Folfox this time. Once I sat there getting DW5 for about a half hour, my BP came down to 124/82 and they let me go home.

This morning I can still tell I'm having trouble with my muscles, as it's taken me a while to get this typed, but not as bad as yesterday. When I walk, there is a 'hitch in my get along'...meaning I walk funny too.

Has anyone else experienced this or am I just weird?


dianetavegia's picture
Posts: 1953
Joined: Mar 2009

My lips drew up! Weird! Once my left hand wouldn't work. Anyhow, it's the Oxi.

Folfox is all the drugs combined. I think you mean you hadn't been given the 5-FU which is the bolus and fanny pack portion of Folfox.

Curious here, Terry. You said in another post that you are Stage III but had a cc tumor also on your kidney. Any 'met' is an automatic Stage IV, or so I thought. What was the reason given by your onc for your staging?

afretiredky's picture
Posts: 28
Joined: Jul 2009

That's the interesting part Diane. The kidney tumor was a primary. No mets. My colorectal doctor told me that usually mets doesn't go to the kidney. So I had two primaries. The silver lining the doctor said. If I hadn't had the CT to see what was going on in the pelvic region prior to the colon surgery, they wouldn't have known about the kidney tumor, which was actually bigger than the colon mass. God works in mysterious ways, eh?

They did end up giving me the bolus of the Folfox, but decided against sending me home with the fanny pack. They said that we would just skip it this time.

Today I'm having trouble with my first finger and thumb on my right hand freezing in position. Weird, very weird. I have to manually manipulate them. The muscles in my arms and calves also feel very strange.

On the good side, no nausea today!! Still have the eating thing too, where I bite in and have horrible pain for a few seconds and my oncologist told me that wasn't normal. My husband told him it was because I wasn't a normal person anyway. :-)

Can't wait for round 3...ha!

Mchapp's picture
Posts: 96
Joined: Jul 2009

I went for round 2 of Oxi/leu/5-FU...same side effects as #1 - jaw discompfort when eating/drinking...the new side effect is left hand thumb and pinky are numb with reaction to cold - just those 2 fingers....nothing else - just a LONG day for treatment - they tell you 2 hours - but 4 hours later you are still there! ERGH! I know it is a journey - and not a race - but it would be nice to be out in a reasonable hour!

afretiredky's picture
Posts: 28
Joined: Jul 2009

Oh and I was at the office from 9:15 to 5:15. Partly because they were running so far behind as two nurses didn't come in and they had 10 patients added on. They finally got me started around 1230 (because we had to wait on the blood work) and then finished at 3:30. The rest of it was trying to figure out what was wrong with my muscles and what caused it.

I told my husband to just drop me off next time and I'd call him when I was done. No point in both of us sitting there for who knows how long.

Annabelle41415's picture
Posts: 6652
Joined: Feb 2009

Sorry that you are going through that already. I know my second treatment was a kicker for me but not to that extent. Only one time did I get my hand to freeze up, it was so weird as I couldn't type or do anything. It was like it was locked in place. I hope that doesn't happen to you next time.


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