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2nd Opinion from M D Anderson

TLH 48
Posts: 16
Joined: Apr 2010

Just returned from M D Anderson in Orlando for a 2nd opinion for mets on the liver and lung. The liver will never be resectable so they recommended Avastin and Xeloda with a follow up CT every three months. Has anyone used this combination with success. I see an oncologist this Friday for the recommended dosage from which M D Anderson will prescribe. The 1st opinion recommended Folfiri for six months with CT Scans every two months. M D Anderson also told me not to pay attention to statistics as I was told by at my 1st opinion to look at 24 months. Pretty scary. I would appreciate some response as I was more encouraged by Anderson's approach and their encouragement for hope. They mentioned a survivor with the same diagnoses surviving for seven years and quality of life using this combination.

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

I did Avastin and Xeloda to finish up my chemo treatments after I could no longer do the Oxy. I had RFA on the liver and 11 months of follow-up chemo.

Liver RFA was in Dec2007 - they told me it was "highly unlikely" I would see another Christmas. And the surgeon and liver specialist both told me that even with surgery, I would absolutely get cancer back in the liver within ONE year - guaranteed it even:)

It's April 2010 - some two and a half years later and I'm still doing pretty good. I'd say that things were successful for me, so far.

I know MD Anderson comes highly acclaimed - sounds like you did the right thing by going for a 2nd - just keep going and never stop.

One of my favorite lines comes from one of our valued members, Kimby - she said, "When you're in He11, don't stop, put your foot on the gas!"

If they can't resect the liver, I'm wondering if they could do RFA - radio frequency ablation - that's what I had done, with great success.

Did they talk about Folfox? That's the cocktail with Oxaliplatin/Elotaxin in it?

I was just wondering if they recommended that at all - it seems like your 1st, they wanted Folfiri, but again did not mention Folfox, hmmm?

Usually, Avastin and Xeloda are combined with either Folfox or Folfiri and they once those drugs are taken, they can finish up with Avastin and Xeloda - that's what happened to me.

These are at least some questions that you can ask your onc for your next appt.

Easier said than done, but stay with it - don't give up - keep asking questions.

-Craig

TLH 48
Posts: 16
Joined: Apr 2010

Craig, thanks for your response and I did have folfox with oxy four years ago right after I was diagnosed with CRC. I developed neuropathy in my feet and my belief is they did not want to engage in this treatment because of that. Nevertheless, I am going to keep up my faith and take it a day at a time. I don't start my treatment for another month as they said I could wait till after my daughters wedding. I do like the fact that it is oral and I was told the Avastin takes approximately 30 minutes to administer. Did you have many side affect from the two drugs? Again Craig, thanks for chatting and I hope we can talk again after my treatment starts.

Terry

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

Hi Terry

Glad to put a name with your handle. Let me tell you about a couple of things since you asked.

XELODA
5fu in a pill. Normally tolerated pretty well by most folks. It can be hard on the stomach though after you have taken it for awhile. Nausea meds can help with this condition. Your fingetips will get red and might hurt some. But your feet - Ouch - we need to get ahead of this right away - here's what you can do. I used a product called Bag Balm - it's a greasy emollient found in CVS or Walgreen's or your local pharmacy. What you do here is start slathering that all over your feet 3x a day - morning, noon and night. Then, put socks on over your feet after you apply it - will hold the moisture in your feet and help moisture them. Without this or this type of cream, your feet will begin to split and crack open and be very painful, even to stand much less walk. By jumping on it right when you start, you are going to be way ahead of the game and it will lessen your effects.

Also, you don't mention what dosing and what schedule you will be on. Typically is it s 14/7 program @ 4000 mgs a day. Over time, my onc lowered the dosage to 3000 mgs a day and we went to a 7/7 program - that will save you an extra Rx per month, so your wallet will thank you. I mean start out strong, but after awhile the toxicity builds up in your system, so adjusting the dose and schedule, can keep you on it longer.

AVASTIN
Your 1st infusion of this should last 90-minutes. The 2nd infusion should last you 60-minutes. All future infusions will be given in 30-minutes if you tolerate the first two. They try and step you down slowly - so keep this in mind going forward. It seems pretty good, it does choke off blood supply to the tumor, so that's a good thing. One word of caution though, I read the white paper from the pharmaceutical company - it states that "long-term" use of Avastin can lead to congestive heart failure - but it does not mention how long that could be.

I did Avastin for about 8-months and I noticed that my heart began skipping a beat and still does. A small price to pay, I suppose. Most folks have had no reaction to it, but me. I'm the lone wolf it seems, so I think it's only right to tell you about my experience with it - probably would not be yours - but I like to tell folks about it.

Well, if I have not fried your circuits, I'd be glad to help you as you go forward.

Nice talking to you, Terry - go get 'em!

-Craig

patsy1954's picture
patsy1954
Posts: 85
Joined: Sep 2009

I was on Xeloda and Avastin but for only 3 months when the ct scan showed tumor gowth. I have, however, been on Avastin since May of last yr. Biggest side effect for me was increase in blood pressure. As a nurse I was more concerned about the B/P then the oncologist. They will also check your urine to make sure that you don't have kidney issues. Not on Avastin now, took me off two weeks ago I am now on Erbitus, which is like Avastin, targeted therapy.

Pat

krf's picture
krf
Posts: 99
Joined: Dec 2009

Hi Terry-
My husband was also told his liver would not be resectable. After 6 months of chemo, it was! Ignore the nevers!
Good luck!
Kim

zenmonk
Posts: 198
Joined: Nov 2009

I had great success on these chemo agents. Went from inoperable liver lesions to operable after the chemo did its thing. Now I am ned after being given 9 months to live.

TLH 48
Posts: 16
Joined: Apr 2010

Hi, I am concerned as the Onc where I'll have my treatment has added another drug called Irinotecan to the mix. The Onc down at M D Anderson if I'm not mistaken just mentioned Avastin and Zeloda. This third drug has huge side affects and I'm wondering if it is all necessary having this other drug. I am going to call down to M D Anderson tomorrow and see if my hearing was wrong! Did you have just the two drugs? I would very interested in knowing as I do not want a ton of chemo if it is not necessary. Please let me know. Thanks. Terry

Brenda3.16
Posts: 211
Joined: May 2009

Hi Terry,

I have been on only Xeloda and Avastin since Feb. I am having my first scan in Mid may since I have been on this combination.

I was DX in March of 2009 with mets to liver and lung. I did Folfox from March to Sept 09,great respose to this, then from Sept 09 to Jan 09 I was on just Xeloda, this kept things stable. I have felt good. Working full time. I was told surgery was not an option, at this point. I have been for lots of opinions, Sloan, Fox Chase and University of Penn.

Brenda

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