Hi there...need more advice! I just got back from a 2 day hospital stay and I need some info from people who have been there. I have had 3 treatments of folfox and started having numbness in my right arm down to my hand on Monday. Then Tuesday it was worse...grabbed a pickle jar and my hand froze up and I could not move it for about a minute. The numbness continued through the day then around 7:30 at night I was having a lot of numbness, hand was very cold and then my hand turned dark blue/purple. I called the on call doc and they made me go straight to the ER to rule out a blood clot (I am on estrogen from hysterectomy and have a port on the same side as the numbness). They kept me in the ER for 24 hours before I got a room. They put me on a heperin drip and then they did a chest x ray, ekg, chest ct scan, ultrasound and then an MRI. There was no evidence of a blood clot. At the ER I also got numbness (felt like I'd been shot w/novicane that wasn't quite worn off) on my left cheek, arm/hand, and leg/foot. The thing that was unusual (though certainly not unheard of) about it was that it was the entire arm and leg, not just figertips and toes.

I was insisting that it was just chemo, but then they call in neurology and they were not convinced. I finally saw the on call oncologist and they think it is a bad case of neuropathy... THEN the neurologist comes in and disagrees with oncology. They want to do an MRI of my brain and an EEG bubble test (?).

So what do I do? We have to decide...do we decrease the dose of the oaxipalatin? Do we stop it altogether? Do I go ahead with the tests that the neurologists wants to do? (I only have weakness in my right hand...otherwise just numbness that is irritating but not painful.) Are there any homeopathic things we don't know about? Will it get better? worse? Should I be worried about metasis? (what cancer patient doesn't worry about this, I suppose??)

ANY advice or insight is GREATLY appreciated.

Thanks a million,
Cats :confused:

I can't give you any advice,but want to send love and prayers your way. :angel:

I don't know what to suggest on whether or not to do the tests, but my husband has had most of the same side effects. He just had treatment #6. For the last few weeks his legs (both of them, and the entire leg) have been going numb. Keeping them warm seems to make it go away faster. Several weeks ago, he was doing something completely normal and his finger started hurting BAD and turned dark purple for about a week. The color has faded but it still hurts some. We showed the nurses and they thought it was a sprain. (Even though he didn't do anything that would have sprained it.) After reading your note, I think it may have been the chemo. Very early on, he had a cramp in his arm and couldn't move his hand for about a minute. It scared us both, but hasn't happened since. After this treatment, he is having pain in his toes. He said it feels like he stubbed them badly, but hasn't and it's on both feet. When he has touched cold stuff, his arm hurts for a long time if we don't get it warm fast. One guy in the clinic said his hands, feet, and lips were numb.

Keeping warm seems to be the only thing that has any good effect.

Since you have access to a neurologist, ask him what can help protect your nerves from permanent damage. If you hear about anything that will help, please let us know!

Please share anything useful they tell you - my husband is going through almost the same thing!

We found an interesting tidbit. Seach the internet for "grothey folfox oxaliplatin" without the quotes. Read the Folfox versus Flox section.

There is also another drug - irinocetan (sp?) that is used instead of Ox that does not have such a strong neuropathy side effect. (I don't know what stage you are.)

Good luck and please share what you find!

Thank you for your response. I feel relieved and pretty confindent that this is all due to the Ox. My oncologist called me and he is going to hold off on the ox tomorrow...just to the Luk and 5FU and see if I improve. The numbness is better, but definitly gets worse in the cold (and it has been VERY cold here lately). Even just running to the car triggers it. I have numbness in my right arm and hand, left cheek, arm and leg, and my tongue and lips. My throat is better...I can drink cool beverages now, which is great.

Of course my concern is about stopping the Ox. I do not have any mets that I know of, so this folfox treatment is sort of my insurance policy. I am trying to weigh the risks and benefits of stopping treatment...maybe just staying on the 5fu or even trying to decrease the dose of the ox. If you go to the drug eloxatin's web page you will find detailed information about the different grades of neuropathy. It is interesting...

What was confusing for me was that it seemed like the neurologist did not buy that this was from chemo. His concern was that I had chemo on a Wednesday and did not experience numbness until Monday and then worse on Tuesday. He thinks the Ox would have caused immediate numbess that would improve over time. I think I might go for the brain MRI for peace of mind since now I worry about something going on in the brain...even though the logical side of my mind thinks it is just from the chemo. Cancer has made me a tad paranoid, I suppose.

Anyway, I hope your hubby is doing OK. I hope you are finding a way to take care of yourself too. I recently came across as study that showed caregivers are under tremendous stress that can effect their own health. Try to find time to do something for yourself, if you can.

I'll let you know if I learn anything new after tomorrow's appointment. Good luck to you!

Cats

The only side effect that hits my husband instantly is the cold sensitivity (touch & taste). Everything else kicks in ~3 days after the Ox.

The numbers they gave us for non-recurrence (stage III) were ~78 with folfox vs. ~72 with just 5fu/Leuc. (I may have the #s wrong, but it was a 6 point difference.) My husband is still having pain in his toes and is thinking about reducing the dose or stopping the Ox on the next one. He was thinking about stopping at 8 anyway.

We saw the surgeon (great Dr) yesterday. He answered all our questions, with good answers. :) We asked his opinion on the chemo since he specializes in colorectal stuff and our oncologist doesn't - he said they don't know where the optimal dose is and our guess was probably as good as anyone's.

It would be interesting to get the neurologist's opinion - our oncologist is concerned with the chemo and nothing else. If you're worrying about it, I'd say go ahead with the test. Peace of mind is a good thing...

I'm mostly ok now - haven't always been.

Thanks!

Hi,

Hope you and your hubby are doing well. I just got all test results back and everything is good...(MRI of brain and neck, echocardiogram w/bubble test). Yeah...that is a relief.

Looks like I will not be getting any more oxaliplatin. Hopefully I will do OK with just the 5FU and Leukovorian. I am not going to worry about it too much.

Hope that things are going well for you. Four more treatments to go for me! Yahoo! Then we are going on a vacation! Can't wait!

All the best,
Cats

Hi cats, I just came across some info about using calcium/magnesium infusions to reduce the side effectss of oxiplatn.. It is being used in clinical trials with much success. I only came across it last night after returning from the cancer center where my husband had his 7th treatment. Only 5 more to go yippie :bouncing: I plan to mention it to his DR. next visit, even though his side effects are much less severe than yours. We were told that he may need to start having weekly shots to combat aniemia next time around. Tommorow I will be removing his chemo puump and flushing his port.
How do you manage with your treatments and having a preschooler? My husband is totally exhausted and very foogy headed :yawn:
Ant way s if you want to check out about the clinical trials this link should bring you there ( if I can figure out how to put ot on here :rolleyes: http://clincancerres.aacrjournals.org/cgi/content/full/10/12/4055 (http://)
Best Wishes, Larbo's wife

Larbo's Wife,

Thank you for your response and for the information. I did have the magnesium and calcium infusion before my last oxaliplatin and it didn't work for me, but I know it works for some. I am also taking vitamin B6 - 50 mg three times daily, which some say helps. Maybe without it, it would have been even more severe?? Who knows?

Hope you are holding up OK. Chemo and a 2 and 4 year old don't really match well. I am VERY lucky to have an extremely supportive husband, who picks up my slack, and I am extremely lucky to have my mom here. She has moved in and not only cares for my kids, but cleans my house way better than I ever do!! I can't imagine going through this alone...

Happy "unhooking" day! I know he will be exhausted and feel terrible for a few days, but then, somehow you start to feel better...until the next time.

Oh, I too have the shots to help bring my crit up. I forget the name but it stings like a bee and I get it every other week. It beats a blood transfusion, though, which I had during my pre-op treatment.

All the best to you and your hubby,
Cats

Gocats and Larbo, one thought that got me through chemo was from my wife's cousin who had chemo about 7 years ago for breast cancer. She kept telling me "there is life after chemo". It's true-it is a good goal to work toward. Yes, fatigue is one of those side effects. I remember sitting in a chair one day and wondering how I would ever have the strength to get up. Do you know if you are getting shots for your red cells or white? The white (neulasta) has the side effect of bone marrow pain. There have been ads on tv-they say one of the side effects can be some bone pain. Yeah, some bone pain is putting it mildly. I don't think I ever felt pain like that in my life. Oh well, the pain quickly went away with Tylenol, and it brought up my white counts. Just remember you are working toward a goal.

I think it is for the red blood cells. He doesnt need it yet but may by the next cycle. I think the name of the shot starts with a P(untill I see a name in writing I can never remember) :rolleyes: and he will get it weekly once he starts. They can give the shot in our local hospital on his off week for chemo and save us a trip out of town. :) He has been having dizzy spells and fatigue, but apparently levels hadn't dropped enough to start the shots. :confused: ,Larbo's wife

Cats - I'm glad to hear all the tests came back good.

They reduced my husband's Ox dose this time. If the side effects don't improve within the next 2 weeks, he won't get any more. (but will continue with 5fu/Leuc)

Is your hand better? My husband's purple finger finally turned to a more normal color, but he says it still hurts as bad.

I think the anemia shot is procrit. They talked about giving it to him, but it looks like he may escape it now.

We're looking forward to life after chemo!

Enjoy your vacation! We haven't had one of those in a while.