Experiences of those who are using Avastin as Maintenance

[crazymotherof8]

I am a New to this site and the care giver to my 49 yr old husband who was dx 3/11 stage iv w/liver and lung mets. I wrote our story in the thread titled "Wives of husbands with Stage IV Colon Freaking Cancer". My husband is on round 7 of 12 of Folfox + Avastin. He is doing well with CEA dropping from 85 - 1.3, biopsy of colon showing no more evidence of cancer, and ct showing 1/3 reduction of liver and lung mets. I was surprised though when the Onc told us that there would be no surgery for colon or liver, just Avastin for as long as he can handle it and then onto Erbitux. Thinking about doing some type of chemo treatment for the rest of his life is very daunting. I was hoping to hear from some of you who are doing the same thing. Are you experiencing many side effects? Right now Matt is having the usual side effects but is mostly able to deal with them. His new side effect is a runny nose and tickle which causes a cough, which keeps him awake at night. This is really bugging him! We got him on some cough suppressants which have helped a some. It is hard for him to go to work when he is already fatigued from the chemo and cancer and then add not getting a good nights rest. Anyways, back to the questions.....side effects? how long have you been on the Avastin alone? I know that it is strong stuff and has a lot of dangerous side effects, but really if we want more time what choice do we have?? Realistically how long can a person stay on Avastin without it becoming ineffective?
We have 8 children with our youngest being 11. This really really really wasn't in our life plan!! So glad to have found this forum! It makes it easier when you can read about others who are going through the very same things and facing the very same challenges. Thank you all!

[Monique]

Hello,

I'm sorry to meet you under these circumstances, but I'm happy that you found this forum (it's a wonderful resource!). I don't have the answers to many of your questions (however, I think that the outcomes of various treatments varies widely from person to person), but I'm bumping this post in the hopes that others might chime in.

Warm wishes,
Monique

[Kathleen808]

Hi Niki,

I know with maintenance there are so many different combinations of drugs that doctors use. I'm not sure if I've heard of anyone only on Avastin. I know of a friend on another site who has been on Erbitux for years. Maybe people on maintenance or chemo for life can share what combo of drugs they are on and how often.

Best to you and Matt and your kids.

Aloha,
Kathleen

[betsydoglover]

Hi -

At first I was reluctant to reply since my situation is apparently rather different from yours. Nevertheless I have experience wth 2 years of Avastin.

See my signature. I had lung surgery for a recurrence in 4/09. We decided to do 6 cycles of Xeloda + Avastin, followed by Avastin only. Understand that I was NED following the lung surgery, so the situation is different.

I was one treatment short of 2 years on Avastin on 5/15 when I was admitted to the hospital with what turned out to be a minor upper GI bleed - probably small intestine but we aren't sure (had every test in the book and more!). Could have been caused by Naprosyn (for my arthritis) or Avastin. In any event, I am off Avastin now and only rarely taking Naprosyn.

My only Avastin side effect prior to this was nasal congestion and some minor bleeding. It was unpleasant and I am feeling better in this regard.

In a NY minute I'd go back on Avastin if I have to - my onc doesn't preclude it, but we aren't going to do it for "maintenance" any more. If (when?) a recurrence happens, then Avastin will still be on the table.

Good luck,

[Kathryn in MN]

I hate to say it, but I think you need to speak to the oncologist and make sure you consider the current plan. If he still has active tumors (to the point that no one will do surgery for colon resection, or liver or lung mets), I highly doubt he can go on Avastin alone. The only people I know that have done only Avastin are those who have been stage IV but get to a point of showing no active disease, but know that most likely it will come back.

I was on maintenance of 5-FU and Avastin when I hit a point where my mets (distant lymph nodes only) had shrunk to normal size, and had only a little activity. It didn't work for me - I progressed pretty quickly. So I went back on FOLFIRI and Avastin until things started looking better. I am currently on Irinotecan and Avastin only, which is keeping my cancer under control, but hasn't gotten me back to NED yet. If I do hit that point, I will go to Irinotecan and Avastin every 3 weeks, instead of every 2 and see how that goes. If I ever hit a point where that works and I stay NED for a few months, then I may go to Avastin only. (Highly unlikely for me to see that point.)

Runny and bloody noses are a side affect of Avastin. My nose runs all the time - especially in the morning, and any time I eat or drink anything. I just live with it. The other side affects of chemo are a heck of a lot worse, so I don't let that one get to me.

And something to keep in mind - just because he is not operable right now, does NOT mean that chemo won't get him to the point where he might be. One step at a time, and know that situations change all the time.

[crazymotherof8]

So, if I understand what those of you have posted so far, Avastin alone is used as a maintenance drug usually when you are NED? If you are not NED but responding well to current chemo treatment is it usual to continue on that treatment until it either no longer works or you become NED?? Was the "12 rounds of chemo" the onc mentioned just a guideline??
If platelets are up we go back for round 7 tomorrow. I have written a list of questions, including the ones above, for Matt's onc, Any suggestions of other questions to ask??? Thank you all so much for your replies!
Niki/Crazy Mother of 8
PS: Any suggestions how to get the platelets to go up or to not drop so drastically?? Matt's treatments have moved from every other week to every 3 weeks, and then last time and probably this time it will be 4 weeks in between. The onc said every three weeks is doable but every 4 weeks is not. He reduced the chemo but platelets still dropped quite a bit.

[Kathryn in MN]

For most people that have white counts drop drastically, they get either Neupogen or Neulasta shots to help get the counts back up to stay on schedule for chemo. WIth FOLFOX I had to get Neupogen shots on day 5, 6 and 7. Eventually I was able to back of to day 5 and 6 only. On FOLFORI I had to get Neulasta, which was just one shot on day 4. When I got the shots, it kept me on schedule. We discovered the bolus of 5-FU given right before pump hook-up was way too hard on me, so it was removed. You might ask the oncologist about that for your husband since he is having trouble with blood counts - it did really help me to have the bolus removed (and the shots helped too).

Twelve treatments is the standard for stage III patients. It is kind of the "starting ground" for everyone else too. When I had to go back on chemo, the goal was to do 12 rounds of FOLFiRI and Avastin and then reassess. This may be his oncologist's plan too. I was doing quite well in less than 12 rounds, so we tried to go to maintenance of 5-FU and Avastin (didn't work out well for me).

Due to neuropathy from Oxaliplatin, not a lot of people tolerate it for too many rounds. But some do. Normally stage IV patients stay on chemo that is working until they become surgical candidates, or are NED, or until that cocktail quits working. But if your husband has a lot of trouble with Oxaliplatin, he could be switched to FOLFIRI and Avastin at some point, even if the FOLFOX is still working. If everything seems stable or shrinking, and he needs a break at some point, they might give just Avastin for a short time, or just 5-FU and Avastin to see if that will keep him stable.