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Sorry Ive been off the board so long!!

mark440's picture
mark440
Posts: 63
Joined: Jan 2010

I had my last rd. of Oxi- 5fu-lucevorin 18 days ago... That was #8 of 12... still have numbness in fingers and toes, cant eat or drink anything colder than room temp. going in for rd.#9 tomorrow, I am dropping the oxailplatinum.... I cant live in the cold northern Michigan where it is cold All the time!!
My question is... Ive done 8 oxi does it make that big of a difference than doing the whole 12?? Dont want to lessen my chances of recovery but I cant deal with the "first bite" "jaw spasms" and numbness in the fingers and toes... Sorry again for being gone so long!!! LIVESTRONG!! Mark

geotina's picture
geotina
Posts: 2120
Joined: Oct 2009

Welcome back.

As far as dropping the Oxy, personal opinion, if your onc wants you to do all 12 then do all 12. Don't quit against doc's advise and then second guess yourself. Sometimes they will lower the dosage to help with side effects. You have come this far so what is a few more if the doc wants you to continue. Now, if your doc is fine with your stopping at this point, then by all means do so. I guess a lot will depend on what your scan shows when they do scan you. If memory serves you are a Stage 3 so most likely when this chemo ends you will be through (hopefully forever).

Take care - Tina

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coloCan
Posts: 1956
Joined: Oct 2009

postop in FOLFOX (did 5 rounds preop, with Xeloda and radiation)I think had I continued with it this past Dec I don't think I would have survived considering some of what it put me thru. I had asked onc if she could re-add the oxi on my last two treatments but she said I was done with it. Tho she disagreed, I felt remaining doses couldnot have been as effective without the oxi but with it-I wasn't effective at all......Only time will tell, I guess.....I can't second guess this decision......steve

Lifeisajourney
Posts: 217
Joined: Apr 2010

I felt pretty good after colon surgery on way to chemo, scared but ready to do it. I did pretty good till about session 4/5 and the cumulative effects must have kicked in. Short version after session 7 and cat scan of brain/abdomen, I was hospitilized for 10 days, they thought from cat scans that cancer was spreading,but everything came back negative, liver biopsy, spinal tap, etc., it was the chemo. The oncol said it was too toxic for me to continue, worse he had seen in years. He made the decision of no more, initally I was happy but worried about what next and he said he had other things available if needed, just go home and recover, which took quite awhile. Still have numbness in feet/hands and that has been since 5/09. Have been ned since then. I was told by more than one dr. that folfox was fairly easy, but most of my reactions were pertaining to nerve damage,falling,walking,talking. My thoughts are if the onc. says no more, I would listen. I was Stage3 with 3 nodes positive. I wss 66 at that time and thought maybe age was a factor. But so far so good, see onc. 7/30 for three month. I had that cold issues, but never the jaw problem, it amazes me how different we all react but then we all have diffrent dr, nurses and doses, sometimes it is like comparing apples/oranges. It would be nice to have a thread about state/facility/dr where treated. Good luck with decision.Pat

abrub's picture
abrub
Posts: 2131
Joined: Mar 2010

My drs dropped the oxali after round 6 - too difficult, and my drs felt that the level of side effects was not worth it. I, too, had severe jaw spasms and terrible neuropathy.

Ask your dr. There are plenty of people who do fine without oxaliplatin.

Take care. Alice

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

with your Onc Dr about reducing the dosage instead of discontinuing? My Onc Dr stated to me (2006) that it was not uncommon to reduce the dosage.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Mark. It's good to hear from you.

Nudgie brings up a good point. You should talk to you Dr. about reducing the dosage. My Dr. reduced the Oxy after 7 treatments. It made all the difference for me. I know you feel like crap but hang in there. The neuropathy lasts, but all the other crappiness goes away.
Stay strong. Roger

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

About dang time you got your butt back on the board!! :o)

I made it to round 7 and about 20 minutes into the infusion, I had an allergic reaction. My onc wouldn't budge on lowering the dose or longer infusion times. He told me that my body's had enough and that was it. I haven't had oxi since. I didn't miss it at all, either. :o)

Doing the 5-FU and the leucovorin was a walk in the park compared to adding oxi to the mix. I've also heard that the efficacy was just as good as having all 12 doses. I wouldn't take my word for that though. I'd talk to my onc about having it reduced or a longer infusion time to not make it so bad. I have a friend that had his infusion time lengthened and he said he tolerated the oxi so much better.

Good luck to you, friend. Always thinking of people here on the board, and you're actually doing very well! We've missed you. Looking forward to reading more posts from you!!

Love and Hugs,

Holly

RickMurtagh's picture
RickMurtagh
Posts: 586
Joined: Feb 2010

statistics would state something like, "there is no significant measurable effect of Oxaliplatin past eight sessions." However, most programs prescribe twelve sessions to compliment the 5FU. There is a slight reduction in measurable (statistical) effect with fewer than eight sessions. There are web sites you can look up that will tell you. My onc even showed me a researcher site that you could program in your protocol and make changes for what-ifs.

I have often said the quality of life a person enjoys is more often measured by the acceptance of the treatment decided upon more so than the outcome of the treatment.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

At the beginning, (first two) and now (the 7th) chemo all I have been on is the oxaliplatin and xeloda. Avastin was given with round 3, 4, 5 and 6. Avastin was discontinued at round 7, because the tumors have shrank and some are gone, so the onc is thinking surgery is now an option, thus minus the Avastin to prepare. I have gone from over cea 2007 down to cea 591 after 3 rounds cea 58 after 5 rounds and cea 31 after the 6th round. I'm hoping to find it's gone down more after the 7th round. So it's got to be the oxi or the xeloda or the combo that's working so well for me. I go for the 8th round the 29th of this month.
So for me, the inconvenience of these poor fingers and toes in the cold, and the inability to drink cold things for a week are so are manageable and worth it.
I just hope the numbers keep going down, that's what is keeping me on these chemo's.

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