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Question ??????

lilpep1972's picture
lilpep1972
Posts: 80
Joined: Dec 2014

Hello all

hope all is well an everyone has tried to smile or laugh a little today.. It is a new day an we are all still here :) :)

i've been doing chemo for two months now. I get a. Cocktail mix of Oxiplantain and then a 48hr pump of folfox.

so my Dr said back when we stared that after 6 treatments(the half way point) that he would stop the OXI and I would just get the folfox for last 6. I'm in waiting room now and just saw the DR, he asked how the neurotrophy was and if it's tolerable he would like to extend the OXI another 2 treatments ... Is this a bad sign??  Or is this normal??  Has anyone had this happen to them.. feeling sooooo down now :( :(  

Chris 

Lovekitties's picture
Lovekitties
Posts: 3333
Joined: Jan 2010

Best way to get the right answer as to why extend the oxi is to ask your onc.

It may be that if you are not having severe side effects, he feels that continuing for another 2 treatments is a good thing.

If you really don't want to, you have to speak up.

We are each our own best advocate when it comes to our health care.

Marie who loves kitties

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I actually skipped one course because it was REALLY impacting my living ability....I asked, my onc said "We are trying to do as much as we can to reduce the possibility of recurrance.  But we are not trying to kill the patient in the process!"

 

But, as a 2 time cancer patient/warrior/survivor, I can say that when you are dealing with a terrorist, as cancer is, the best course is to nail it as much as possible!

 

Hugs, Kathi

Trubrit's picture
Trubrit
Posts: 4952
Joined: Jan 2013

I've heard that most people get or try to get twelve treatments of Oxi & 5FU, and some Oncs like to do nine. I had nine as my Onc thought that was sufficient. 

Every Oncologist seems to have their own little way.

As for changing things, as Marie said, ask him why.  If its a sign that something is bad? Probably not. And should you be down? Its hard when things change on you, so you're allowed a bit of a downer, but only for a tinsy winsy amount of time Laughing.

Good luck, and keep us informed.

Sue - Trubrit

janderson1964
Posts: 2215
Joined: Oct 2011

I did 12 treatments of FOLFOX but that was 9 years ago. I think the doctors nowadays are concerned about permanant nueropathy so some take it 6 treatments at a time as in you case to see how well you are tolerating it. In my case my oncologist just said 12 treatments and if scans are clear I would stop after 12, as a result I have permanant nueropathy on the bottoms of my feet which really isn't that big of a deal. But I have read of folks with worse nueropathy than me.

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

10 and 1/2 rounds of Oxy out of a planned 12. They tied mine to my white blood cell count and took me off of it when it got too low. There are studies that suggest 6 or 9 are as effective as 12, but does anyone really know for sure?  I now have permanent neuropathy but I can live with it. At the time I wanted to kill the cancer cells! I think your doctor just wants to hammer the cancer as much as possible, adding another couple of rounds is not a bad sign of anything. Good luck to you.

Easyflip/Richard

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I had eight out of the twelve planned for me. I had really bad neuropathy and had started to get superficial blood clots and was planning on telling my onc that I was done with the chemo at my appt that was booked for a couple of days after I ended up with the blood clot that went to my lung and came very close to ending my life. She spoke to my husband about it afterwards and said no more chemo for me. I had no problems with the chemo I had before the surgery but it didn't have the oxyplatin in it.

I wouldn't worry if you're doing okay with it. Your onc probably wanted the full course with it but was holding back because so many people have a tough time with the oxy on top of the chemo.  

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

When I was first diagnosed in 2007, I did 12 rounds of FOLFOX (5-FU with Oxiliplatin), that was the game plan.  My neuropathy was tolerable during the entire 6 months, although I still have neuropathy issues today (had 14 more rounds in 2009).  I think the onc was only suggesting 6 rounds with oxiliplatin to save you from the long-term neuropathy, but I would check with him to see why he's extending it.  It may have to do with the good response you're having to chemo, in that it's killing those suckers.  Who knows until you ask.  If the oxiliplatin is really bothering you and you want to stop, then say so.  Good luck, Traci

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

my doctor's preference was that I complete all of the cycles with the oxi included, but he was willing to stop it early if needed.

I'm not sure why your doc would have changed his mind about things tho...did you just get a scan that showed concerning results?  If not, then i wouldn't worry about it.  I think having the oxi every time is standard protocol, so maybe he just decided to stick with that rather than fooling around with what is known to work.

Steve444
Posts: 105
Joined: Sep 2014

As everyone says, I think the docs try to give it to you as long as your body can tolerate it. it geberally works well, but eventually causes you trouble at which point they stop it.  My doc kept it going until the neuropathy moved from my feet to my hands, my brain got screwed up, my lack of balance became a problem, etc...  I wouldn't take it as a bad sign that they want to keep it going, instead a good sign that they feel the benefit still outweighs the side effects.  Hang in there.

lilpep1972's picture
lilpep1972
Posts: 80
Joined: Dec 2014

Thank you to all for your feedback.

i don't always post a lot but I do read posts almost daily. I'm so thankful an blessed I found this site.

trying to keep my head up and be as normal as possible. The every other week chemo treatments screw with my head sometimes

just as I'm feeling better here comes another gut punch.. It's been getting harder to get back up but I can honestly say this forum reaches out and helps pick you back up.. Thank you all and may God help ya smile and laugh a little bit each an every day. :) 

chris

NewHere's picture
NewHere
Posts: 1128
Joined: Feb 2015

Exactly how it feels.  But each one down is one step closer to being done.  My #5 hook-up is Monday, And the semi-bumming starts just when I start feeling better from last round and realize the next one is about to happen.  Hang in there.  How many you have left?  Are we both about the same spot?

trying to keep my head up and be as normal as possible. The every other week chemo treatments screw with my head sometimes

just as I'm feeling better here comes another gut punch.

 

 

lilpep1972's picture
lilpep1972
Posts: 80
Joined: Dec 2014

I have 4 left from today.. I have another crazy question??  I've had 8 treatments of which 6 I was given the OXI, for some reason I feel WORSE without the OXI.. my stomach is absolutely a mess an the neurothopy in my feet is WORSE than when I get the OXI.. This time and also #6 my platelets were below 70k so they just did the 5FU... i was up and actually playing in a softball game the next day.. I receive my treatments on Thurs an unhook myself on Sat aftanoons.. i play on a Sun softball team an the 2x's without OXI I couldn't play..  The 4x's with it I was up playin.. I don't get ..... in every post I read it seems to be the opposite??  Just my luck..lmao... Anywhoooo enough being Debbie the downer.. Tommorow I get up an I force myself to gym and sweat out this crap they pump in my body.. I WILL NOT BE DEFEATED BY THIS ****!!   NO WAY 

hope everyone had a chance to smile an laugh a lil bit today and HAPPY MOMS DAY TO ALL YOU BEAUTIFUL MOMS.. 

Chris

NewHere's picture
NewHere
Posts: 1128
Joined: Feb 2015

4 more, you are almost there.  Not sure why it is worse, could be luck of the draw in all this.  Or perhaps they use different steroids?  Also sounds like it is inconsistent for you?  (Like all of us.  :) )  Just the 5FU and you were playing softball, very cool for #6.  Then not so cool later.  

You are heading to the finish line for sure, 4 more.  I am jealous ;)  No way are you a Debbie Downer.  In fact you are making me want to do more in this.  Seriously.

NewHere's picture
NewHere
Posts: 1128
Joined: Feb 2015

My Oncoloist said 9 will have the Oxi since the marginal different with respect to treating the cancer for the extra three (to get to 12) is outweighed by the risk of neuropathy for long term (when doing over 9).  I will be doing a total of 12 treatments, the 5FU and Folinic Acid in all 12.  My first treatment only had the 5FU and Folinic Acid to see if I had any reactions there.  Treatment 2-10 with all, then last 2 5FU and Folinic Acid.  

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

That was exactly how I felt. Neuropathy until a day or two before another treatment at two week intervals. I'd get very depressed a few days ahead of the next one knowing that I'd be miserable for another couple of weeks.

DD3's picture
DD3
Posts: 132
Joined: May 2013

did 10 of 12 treatments of FOLFOX with Oxy.  Nueropathy got bad and the oncologist stopped it.  Good news the last two treatments with 5FU only was amazing.  Took off the pump on Friday and she was up and about Saturday ready to go.  Unlike when she was treated with Oxy she laid in bed all weekend.  I fully understood that tho.  As everyone knows... everyone is different.  Oh, yes my wife has permanent nueropathy.  Tolerable (with meds) but never goes away. 

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