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Update and questions about FOLFORI with Avastin

charelaine
Posts: 36
Joined: Mar 2006

I posted a little bit ago about my story, but here is a quick update. Dx 2006 stage IIIC colon cancer. Resection done, colostomy hooked up, 6 mos. FOLFOX, 6 weeks radiation to sigmoid colon.

2010- went for 6 month check-- CEA up to 10. Did a CT-- found suspicious area in abdomen. PET scan lit up nodes in abdomen and neck, right breast.
Mammogram and ultrasound picked up same spot. Core biopsy done yesterday.

Now the results... no breast cancer (yay!)but positive for colon cancer. The doctor wants to start FOLFORI with Avastin on April 2.

What questions should I ask at my first appointment as a stage IV patient?

How does this regiment treat you? Is it more difficult than the FOLFOX?

Will I always have chemo now, or what?

Any advice?

Thanks. You guys were a great help when I was worrying the past few weeks.

AnneCan
Posts: 3692
Joined: Oct 2009

Hi Charelaine,

I am sorry that you have to go through this. I am on folfiri + avastin (I just had treatment# 12 yesterday) + for the most part I am tolerating it well. It is also working well on my tumours - it actually shrunk my 2 colorectal tumours (without surgery) to the point where they are not detectable + liver tumours are shrinking as well. I was on folfox + had radiation previously - they found the radiation helped to shrink the cancer in the colon but they switched me to folfiri + avastin when they determined that I had the liver tumours. Everyone has different experiences with each chemo cocktail. Here is what I have experienced with folfiri + avastin: fatigue, usually on the day of chemo, then for a couple of days after my "disconnect" from the pump which I come home with. As well, I lost most of my hair but it is actually starting to grow back - it started coming back after treatment # 9, I think. When my hair started to come back, in February, my oldest daughter cut my remaiing hair to the same length; now I have a spiky kind of funky do. My hair, which was always fine + soft is growing back super-soft. When my oncolgist first told me I might lose my hair, she recommended I get a wig, which I did, but I usually wear a scarf or hat. It is nice to have the wig, just in case. Sometimes I expereince diarrhea, but immodium takes care of that. I want to wish you good luck as you begin your treatment + please let me know if you have any questions. With regards to questions for your onc, I would ask what side-effects to expect, sorry I am sort of of blanking out here, someone else will chime in with more. Take good care!

bigCrandy
Posts: 75
Joined: Sep 2008

hi charelaine, sorry to hear you still need chemo. i had 6 months of folfox after surgery and all was great for 9 months. then the cancer came back in abdominal lymph nodes so i did 6 more months of folfiri + avastin, still needed 3 more months but it finally worked. i've been on avastin only for last 9 months but it's back again in lymph nodes and now lungs. i start xeloda plus avastin next week. we will see what happens. anyway, i liked the folfiri a whole lot more than the folfox. they use irinotecan instead of oxiliplatin but everything else is the same. you don't get the neuropathy in hands and feet like folfox but you do have to deal with the diarrhea. i got atropene shots just before the irinotecan dose and that knocked it out right away. imodium AD works fine too. may God Bless you and your family and hang in there, you can beat this thing, it's only a disease.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I am Stage 4 cc with mets to my liver. I been on Folfiri with Avastin for since Feb 09 but there were breaks between my treatments because of complications with the avastin (well onc doesn't think it was that, the surgeon did though) it led me on my 4th treatment a couple days later to having a perforated colon...I had to have an emergency colonostomy, and now have a temporary bag, which is ok, I didn't find it a huge thing, it was like having my butt elsewhere on my left side, hey, no more hemorrhoids and I don't have to worry about finding a rest stop somewhere lol...

Anyways, just like Anne, I lost some hair, it thinned alot (I had clumps coming off my head and would sit there and bawl) this happened on like my 6th treatment, but then by the 9th treatment, it had stopped! my hair was waist length, and thick, I actually had my 14 year old cut it to my shoulders, since I thought maybe it would help it from falling out, all that weight of it may have been really pulling it out, and now, my hair has grown back, alittle past my shoulders now, it's growin in spikes before it starts falling to the sides and blend in when they should, never had to wear a wig or scarf, my kids don't like the scarfs, they would rather me be bald wearing a wig, but that's ok, I know it would just scare them. I actually just went into a store called "Hot Topic" and "Icicles" that had some really cool hats!! I had to fight my girls when I wanted to wear them, they wanted them too LOL..

The Fatigue sucks! You're fine until you get disconnected, then for about 3-4 days, it feels like you can barely do anything, just lay there, and thats ok...make sure you rest that body, it's going through alot now, but after a few days, you will feel yourself bouncing back to your old self, and then soon as you're feeling good, BOOM!!! You have to go for another treatment...BOOOOO!!! it's like a cycle, you feel ok, you feel like crap, as soon as you feel good, you go back for more...but you can do it, if I can, you can!!

The nausea is the worse, omg, they gave me just zofran and compazine for my 1st treatment....DIDN"T work! I laid in bed the whole time I was hooked up, couldn't eat or drink, the home health was so worried, she told me to not waste away, and tell those nurses to pull out the better stuff next time, I thought "if there is a next time, if the cancer don't kill me, the chemo will!" the chemo nurses called me to check up on me, and told me I would not feel like that next time, so the 2nd time I went, they gave me a 3 day supply of EMEMD which is awesome, I take it in the day of treatment, and the 2 once a day in the mornings, with 3 dexamethasones, ativan, a shot of zofran that lasts 4 days, compazine, which you must eat before taking, all of them, and though I may feel just a bit queasy at times, some good ole maryjane does help work faster then the pills, I can eat and drink also, the big guns made a huge difference. Stay on top of the nausea, take it even if you don't feel sick, don't wait, once you get sick, it's hard to get back in control, so every few hours, take the nausea pills, even if it says every 6 hours, take it every 3 hours, the worse feeling in the world is feeling sick!!!

So when you ask the doctor questions, you want the best nausea meds, exercise if you can for the fatigue, I do some leg exercises in bed, I feel the more you lay there the more reason a clot can form, and you don't want that, so always try to move a little

Try Ensure, eat alot of veggies and fruits, and nuts, fiber is important, some miralax to stay regular, I put that in juice daily, a capful, but make sure you stay hydrated, you don't want to get dehydrated and end up in the hospital with them getting you hydrated,

If he can do Folfox, he can do this, this regimen is supposed to be more tolerable then the folfox. No neuropathy, nothing major to me except for a few blockages I did have, but I had a new colonostopy, and was just getting used to a newer way of digesting, and thank god haven't been in a hospital since September 09, my whole year almost of 09 was spent in the hospital, but not because of the chemo ;)

Best wishes to you, you will be fine!

Hugsss!
~Donna

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