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rough scan results

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Got scan results back today and they were a mixed bag. The good is that the tumors in the colon and liver are stable but the ones in the lungs continue to multiply. There were 10 new ones since the last scan in late March. Since surgery is out the plan is do do 5fu pump 24/7 for eight weeks and then do scans again. The options are getting more limited. Over the past month I've have 2 really bad reactions to Oxiplantin (sp?) so that was stopped. Last treatment I had Avaxtin 5fu and lukavoran but that kicked my butt. So now we are going to try this. I've been doing chemo every two weeks or three since June 09. Has anyone else done the pump with 5fu like this. I usually have the pump for a few day then they take it off. It seems pretty harsh. I'm getting pretty worried about all this. Praying for all of us everyday. Jeff

scareddaughter24
Posts: 68
Joined: Nov 2011

Just remember amongst that news the tumors in the colon are stable... I have heard that the 5FU is really effective and just think 24/7 for 8 weeks sounds like the lung tumors will have no chance!!!!

danker
Posts: 1269
Joined: Apr 2012

I had 5fu with a chemo pump for the 5 weeks I was getting radiation. To presumably shrink the tumor prior to resection. Was given a 2 month rest before the surgery. Only side effect was galloping diarrhea during week 4,5,&6. It must have worked-2 yrs later I am NED.
Hope you get NED as well. Good luck!

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I'm so sorry to hear this...you're a tough guy to keep swallowing that stuff non-stop...I tip my hat to you.

It sounds to me like the onc wants to try this to see if you can tolerate this treatment, since it appears that you are having issues with the other combinations.

I did 5fu by itself for six straight weeks, 24/7...but it was in combination with radiation.

I hope for the best here...and hopefully the new growths will at least stabilize for the interim with this treatment. You've done alot of the things there are to do.

Have you been KRAS tested? If you're 'wild' you would be a candidate for Erbitux or Vecitibix, which many people are having success with. If you're 'mutant' that means that you would not be eligible for this, as this treatment would not have the response you would be looking for and the toxicity involved would negate any benefit, if at all.

But, it's worth knowing...cause wild opens up another door for you.

I know you're worried, who wouldn't be? I worried that if Folfir failed me at some point, then I'm down to the other two you mentioned, and maybe that new one being touted.

It's worrisome alright...but we're pulling for you. That pump can really be a drag carrying it all the time for so long...mostly you can ignore it, but other times it lets you know it's there.

Keep trying, Jeff!

-Craig

janderson1964
Posts: 2215
Joined: Oct 2011

I am so sorry to hear about the news. Keep fighting.

steved
Posts: 835
Joined: Apr 2004

I did the pump back in 2004 before we had xeloda and really it is no different than taking xeloda each day apart from the inconvenience of wearing the pump. I am not sure why you simply don't use xeloda though which is basically the same drug as a tablet (though accept may be issues of cost and access).

I tend to tolerate it fairly well and don't remember major problems from being on the pump for 5 weeks. It is individual but is certainly for me a well tolerated drug compared to oxaliplatin,

Hope things go well for you,
steve

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

one day at a time..
WOW.. I hope and pray for the best for you.. i know you must be so dissapointed..
keep on fighting babe.
It isn't easy but you will get there-- there was some positives in that report so hang on to them and find some peach there..
take care and keep us posted..

janie1
Posts: 753
Joined: Apr 2011

Jeff, you didn't mention Irinotecan either. Have you been on that before?
How was the 24-hour urine test? OK?
I know it's concerning, but maybe the 5FU 24/7 won't be so bad, I assume it will be at a reduced strength, but for a longer period of time.
Wonder if you could stay on the Avastin, but get some different pre-meds to help. Were you mostly fatigued?
I will pray for you every day, as I am doing for everyone here.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Its great hearing from you all. I tried erbitux but was Iras mutant so had to stop. My urine was high protein so giving a break from that. Seeing a urologist Friday not looking forward because of the test they have to do. The scan sheer a cyst and they want to have a closer look. Thanks again. Jeff

Cathleen Mary
Posts: 827
Joined: May 2011

Jeff,

You have been thru so much. There are so many setbacks in this journey. Know you have a lot of support, prayers, and hope here...we're rooting for you.

Cathleen Mary

smokeyjoe
Posts: 1428
Joined: Feb 2011

Like Steve I'm wondering why not the pills?? My onc. didn't offer them, I asked for them...he said they're less effective than the folfiri though, so he didn't understand why I wanted to give this a try. Best of luck to you, I feel for you...I hate that friggen pump.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Praying for you , have a big hug!

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Nothing to add to all of this good advice except some more support.
Big hugs~
Tommycat

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