No Avastin for me

Patrusha · August 2006

I just heard from my oncologist and I have been randomized into Arm A of the study that provides the 6 months bi-weekly regimen of Folfox but does not add on the Avastin. That would be Arm B.

I had told my onc that I hoped to be in Arm B and he held up his hand and said, "don't say that. When we did the tumor testing you said you wanted to be in the low-risk group and you wound up in the high-risk group."

So this morning, when he told me I was placed in Arm A and not Arm B he said "see, you shouldn't have told me what you wanted." To which I replied:

"God puts me where he wants me and where I need to be, not where I want to be or where I think I need to be, So I'm good."

Chemo starts on Friday and I'm calling my primary doc to order me some of the EMLA cream. My oncologist told me they don't normally use any numbing agent at the cancer center. WHAT?!!! I'll be changing that, too, I guess!

Hugs to all...

lfondots63 · August 2006

Hey Patrusha,

Will be thinking of you on Friday. OUCH that they don't use ANY numbing agents. Mine also had a spray that didn't do much but sting. The EMLA cream is great. You will need big bandaids to put over the area after you put it on your skin. This is to keep it on there until they stick your port. Make sure they place the tubing under your shirt after you are done and before putting on the pump. This way you can hide it like it is a fanny pack you are carrying around with long shirts. Just a few tips of the trade. HUGS and take care!

Lisa F

AuthorUnknown · August 2006

Hi Patrusha,

The thought of something being random generally makes me feel very uncomfortable. Especially when it concerns health. So, my opinion is that the your treatment should be what is the best for you and not what just has been randomly picked up for you. I would ask your doctor the best recommendation for a drug and get it.

Best wishes for the treatment.

God Bless, Eleonora

Betsydoglover · August 2006

Hi Patrusha -

Remember you are "only" Stage II - not trivializing it, but you'll probably be just fine without Avastin, and no standard treatment would provide you with Avastin, so if I were you I would not worry too much about this.

Glad you are getting started - you can't finish until you start.

Good luck,
Betsy

vinny3 · August 2006

My oncologist put me on Avastin with the Folfox because she wanted to be as aggressive as possible as long as I agreed to do the chemo. However the other oncologist I consulted with recommended that I don't have the Avastin-I think because that would be used if the cancer recurred. You should be fine. I haven't had anything used to numb the area over the port and it is not a problem. I am just in the middle of my fifth cycle and tolerating it (but not liking it) so far. Everytime I start a new cycle my brain thinks that the cancer is coming back. I have to get rid of those negative thoughts.

Hope it goes well for you.
****

Patrusha · August 2006

Betsydoglover said:
Hi Patrusha -

Remember you are "only" Stage II - not trivializing it, but you'll probably be just fine without Avastin, and no standard treatment would provide you with Avastin, so if I were you I would not worry too much about this.

Glad you are getting started - you can't finish until you start.

Good luck,
Betsy

I understand completely, Betsy. Actually Arm B also includes the Folfox for six months. Its just that they add the Avastin and then carry the Avastin for six months beyond that. I feel OK where I am...

Patrusha · August 2006

lfondots63 said:
Hey Patrusha,

Will be thinking of you on Friday. OUCH that they don't use ANY numbing agents. Mine also had a spray that didn't do much but sting. The EMLA cream is great. You will need big bandaids to put over the area after you put it on your skin. This is to keep it on there until they stick your port. Make sure they place the tubing under your shirt after you are done and before putting on the pump. This way you can hide it like it is a fanny pack you are carrying around with long shirts. Just a few tips of the trade. HUGS and take care!

Lisa F

THanks for the tips, Lisa! I am definitely trying to get my hands on that cream (and some bandaids!).

Patrusha · August 2006

AuthorUnknown said:
Hi Patrusha,

The thought of something being random generally makes me feel very uncomfortable. Especially when it concerns health. So, my opinion is that the your treatment should be what is the best for you and not what just has been randomly picked up for you. I would ask your doctor the best recommendation for a drug and get it.

Best wishes for the treatment.

God Bless, Eleonora

I hear what you're saying, Eleonora. The only thing that would be offered to me outside of this study was the Folfox treatment (which is exactly what I am getting in Arm A). The addition of Avastin in Arm B is to see if that helps Stage II survivors. Nobody really knows at this point, and it isn't offered to Stage II patients. Perhaps after this study, it will be if it proves effective.

So I don't feel like I am suffering because I wound up in Arm A. I only wanted Arm B because 20 years ago, when I was newspaper editor, I made fun of the medical reporter for submitting a story on "monoclonal antibodies." I said, "who cares?" and he said, and I quote, "You'll care in 20 years when they start using them to cure things like Cancer..." Of course he had no idea that 20 years later I would be dealing with colon cancer. He himself is a 15-year survivor and his mother died in her 40s from CC, hence his interest in monoclonal antibodies.

Avastin is a monoclonal antibody!

Patrusha · August 2006

vinny3 said:
My oncologist put me on Avastin with the Folfox because she wanted to be as aggressive as possible as long as I agreed to do the chemo. However the other oncologist I consulted with recommended that I don't have the Avastin-I think because that would be used if the cancer recurred. You should be fine. I haven't had anything used to numb the area over the port and it is not a problem. I am just in the middle of my fifth cycle and tolerating it (but not liking it) so far. Everytime I start a new cycle my brain thinks that the cancer is coming back. I have to get rid of those negative thoughts.

Hope it goes well for you.
****

You actually start thinking the cancer is coming back when you do a cycle, ****? Is it the chemo making your thoughts negative in that way? I had somebody tell me to "visualize" the chemo going in, seeking out those nasty C cells, and obliterating them. Maybe you could try that to combat the negatives. (But don't start making machine gun noises or they might cart you away!) LOL!!! I'm usually pretty good with needles, too, but the port area is still so sore. I can barely poke it with my finger, let alone let them at it with a needle! Not yet...

vinny3 · August 2006

Patrusha said:
You actually start thinking the cancer is coming back when you do a cycle, ****? Is it the chemo making your thoughts negative in that way? I had somebody tell me to "visualize" the chemo going in, seeking out those nasty C cells, and obliterating them. Maybe you could try that to combat the negatives. (But don't start making machine gun noises or they might cart you away!) LOL!!! I'm usually pretty good with needles, too, but the port area is still so sore. I can barely poke it with my finger, let alone let them at it with a needle! Not yet...

The thoughts don't last long but I just worry a little that the cancer is still present even though I have had no evidence. After the chemo I am fine and even when I think that I still carry on normally. Good luck on your treatment. I will carry positive thoughts for that.
****

CAMaura · August 2006

Patrusha said:
I hear what you're saying, Eleonora. The only thing that would be offered to me outside of this study was the Folfox treatment (which is exactly what I am getting in Arm A). The addition of Avastin in Arm B is to see if that helps Stage II survivors. Nobody really knows at this point, and it isn't offered to Stage II patients. Perhaps after this study, it will be if it proves effective.

So I don't feel like I am suffering because I wound up in Arm A. I only wanted Arm B because 20 years ago, when I was newspaper editor, I made fun of the medical reporter for submitting a story on "monoclonal antibodies." I said, "who cares?" and he said, and I quote, "You'll care in 20 years when they start using them to cure things like Cancer..." Of course he had no idea that 20 years later I would be dealing with colon cancer. He himself is a 15-year survivor and his mother died in her 40s from CC, hence his interest in monoclonal antibodies.

Avastin is a monoclonal antibody!

So is the drug which they used for my Nausea (monoclonal antibody) on FOLFOX...Damn, I must have erased it from my mind, but it is made by Merck and it was MUCH needed -- by me. Please do ask about it...'Cuz you will most likely want it! Hey, remembered it: EMEND!!! Had to take it with a steriod for maximum performance (yuck) but better than the Emergency Room!
My very honest thought for a stage II survivors: Get chemo if you want it, and then eat VERY healthy....Juice and take out refined white sugars and white flours when ppssible and keep cancer at bay...
All the best to you and keep us posted - Maura

No Avastin for me

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