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FOLFOX and Avastin - anyone on these?

sallyjoy
Posts: 102
Joined: Apr 2004

Hi all...Just wondering about these chemo drugs. Hubby starts on this on Friday (april 30) and wondering how others have done on these drugs? side effects? We are a little nervous about it. He's stage 4 with a met to the liver. DR wants to do chemo 1st, then surgery on liver, then more chemo. Hubby's a roofer - out in the sun... one of the drugs says to be careful of the cold..like AC, cold drinks, etc. I worry that he'll get so hot in the sun and not have a way to cool down... any info appreciated ... thanks!
Sallyjoy

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scouty
Posts: 1973
Joined: Apr 2004

sallyjoy,

there are several different "flavors" of folfox..I am on folfox 6 with avastin.....don't want to confuse you so let me know if hubby will be on folfox 6 in particular...have only had 2 treatments, but will be happy to share my good news. To whet your appetite...my side effects have been minor!!!!!

sallyjoy
Posts: 102
Joined: Apr 2004

Thanks for responding... I don't know what he will be on -they just said FOLFOX and Avastin as far as I know. He starts this fri. I know he'll be there for about 4 hrs. the 1st time..some drugs will drip and some will be push (???) and then he'll come home with a pump of continuous 5FU for 2 days. He had a mediport placed last mon.... I guess I'll have to ask the onc. about the FOLFOX. I know it has the 5 FU with Lev., and Oxaloplatin. Do you have a port too? Do you have to bring the chemo home? If so do you have any advice ... if not how does your therapy work... what is the stage of your cancer? Did you have surgery? Thanks for any help...

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scouty
Posts: 1973
Joined: Apr 2004

The drugs you listed are folfox 6 so we are the same. I too am stage IV with mets to the liver and one spot on my lung. I got my port-a-cath the same day as my first chemo treatment. Here is my day there. After sitting down, a nurse takes blood (they did not have to do that the first time). They hook up a needle and tubing from the port to the IV pump (has not hurt either time). Next are 6 anti-nausea pills by mouth. They take 30 minutes before they hook up the first chemo drugs. Oxaplatin and Lev at the same time for 2 hours. Next is the Avastin for an hour and a half. Then a push (a syringe with 5FU that only take a few minutes for the nurse to give). Then they hook up to a "fanny pack". There is a pump with it and the chemo IV bag fits nicely in it. You can wear it as a fanny pack or over your shoulder. It weighs about as much as a normal purse does (unless it is my mother's "beach bag" purse). A nurse comes to my house 46 hours later and unhooks me and checks everything out. I have found that as long as I eat solid foods (I changed to a 5 smaller meal regime after my surgery last fall). I had a perforated colon that became severe perintonitis last November. Durn near died then, but it wasn't my time. My old doctor could not find the cause of the perforation so I got a temp. colostomy bag then. He then found my colorectal tumor the end of February by accident. I have since changed doctors. Where are you located? I am in North Carolina and going to the UNC School of Medicine. Tell hubby to wear a button down shirt to his treatments...I didn't my first time and got to wear the same blouse for 2 solid days (I smelled lovely). Drink lots of water the 24-36 hours before the chemo. Eat the day of it also. Food in my tummy is why I think I have not felt any nausea so far. I drink lukewarm water like a camel the 3-4 days after the treatment (you can't have anything cold to eat of drink after the oxaloplatin for 5 days). I took food with me this last time. I take books to read and a pad of paper to write on. They have water and other drinks at my chemo center as well as peanut butter crackers and cups of soup. There are places close by to pick up lunch too but I liked taking my own. Some sleep and listen to cds with their headphones while there too. My side effects have been minor thus far. The cold stuff gets old, wearing gloves to get something out of the refridgerator of freezer really works but looks silly. I even took a glove to my grocery store with me yesterday. I exercised more right after my chemo this time (mostly walking and mowing my yard some). I think the "keeping the blood flowing" full of as much water as I can helps. I have a hard time going the sleep the first few nights after chemo so I sleep later. I get up when I am ready. I have slept until noon a few times over the weekends right after. I take the day off for chemo and only work a half day the day after. Then I have a weekend and back to full time the following Monday so far. I do tire much quicker. Chemo brain is alive and well too....forgeting a sentence midstream, etc. I now have another excuse to go with age. I am 49 and was healthy until all of this, just had a few very stressful years that got me (I think). I have short burst of headaches but think that is because I am kicking caffeine and sugar (thanks to our resident nutritionist, Emily!!!). Emily recommened the book "Beating Cancer With Nutrition" by Dr. Patrick Quillin. It is an awesome resource. He is the Nutrition Director for the Cancer Centers of America and has been for 10 years.

Can not believe how I have rambled on....will stop for now but am here for you and hubby...hope his experience is as good as mine or even better. You both are in my fondest thoughts.

Lisa P.

sallyjoy
Posts: 102
Joined: Apr 2004

Lisa, Thanks so much for all the info! I'm sure it will be very helpful. I am on my way right now for a checkup with my husband. He's been having some chest wall pain, but thank God it is not a pulmanary embolism...they just checked him out in the ER. I have printed this out so I can discuss this with him I'd like to keep in touch with you and know how you are doing. I will try to check back with you later this evening as I am at work right now waiting for hubby to pick me up to go to the DR. I will have to look more inroo the Sugar thjing - I think I read emily's web page where it said cancer feeds on sugar.. Does that mean you eat nothing with sugar at all or what about sugar substitutes??? Thanks again and I'll check back with you.

Sally Jo

scouty's picture
scouty
Posts: 1973
Joined: Apr 2004

sent you an email... hope you get it, if not, let me know. keep being you, but also take care of you as I said in my email. expect mostly good days but there will be a few bad. most of all, keep your sense of humor and your belief in things none of us can control.

lisa p.

sallyjoy
Posts: 102
Joined: Apr 2004

Did you get my email???

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

Hi sally: I'm on Folfox 6 protocal-5fu/Leucovorin/
Oxaliplatin (without Avastin) I am also given a number of antinausea drugs-(Decadron & Aloxi) I just finished round six of eight, and have had problems with constipation and nausea. They have made several changes in dose and type of anti-nausea meds without complete success. Each person is different, and your hubby will have to
wait to see if he has any or none of these effects. One thing that helped somewhat was the addition of a hydration (saline) pump to the 2 day
5fu infusion. Dehydration is your worst enemy; it will add to the constipation/nausea. You might want to go to drugs.com and search each drug by name- you will get more information than you want, but it will give you the possible side-effects for each drug. I know they warn against sun exposure while on 5fu. I have recurrent rectal cancer -(mets to lungs. Bud

sallyjoy
Posts: 102
Joined: Apr 2004

Bud, thanks for responding, I've added you to my buddy list, please keep in touch and let me know how you are doing. Thanks for any advice. Tomorrow is the big day and hubby is nervous. I keep telling him to drink more water, etc. we've invested in sunscreen and I am going out tonight to buy bottled water that is not refrigerated. Do you have problems with the COLD?

carmen07
Posts: 120
Joined: Apr 2004

Hi Sally
My Husband just completed 8 rounds of oxiplatin and 5fudr. I believe the folfox stands for the combination therapy (oxiplatin/fudr)
My husband is 50. He did not get nausea. He is sensitive to cold temperature. He has to drink all beverages at room temperature. He was given anti nauseu medication for home and he does not take it. He had two lesions that mestasize to the liver.
He had a Cat Scan and a Pet Scan. The good news is that one lesion can not be seen and the other is barely visible on the films. We met with a oncologist surgeon to discuss the removal of the right section of his liver.
I am nervous about this, but I will tell you they use the word cure. They are coming out with so many new drugs today and I know Avastin is one of them. He may get this after surgery. Just two more treatments.
We receive the drug for two hours at the hospital and than go home with a port. A nurse comes in 46 hours later to remove the pump.
You need to buy your husband an electric shaver. should not shave with razor. He has had no mouth sores. We were good in the begginning and made baking soda solution.
I will keep you posted. His last CEA was a 2.5.
I was really scared the first few times. Has not been easy. I hope you will experience the same as us and not have bad side effects. Best of luck to you. I will write you soon. I just joined.It has been really hard finding support to talk too. We live on the East Coast and are going to a large Cancer Center. My local hopital did the Tumor removal of Colon. His lymph nodes were reported free of cancer from the Oatholgy from our local hopital, and found that one was positive in the Large cancer center. I did not know they could make mistakes on Pathology reports. Best of luck, I know what your going through. Will write you soon.

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