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"maintenance" chemo

serrana
Posts: 163
Joined: Apr 2009

Hi folks....who has had ( or is having) "maintenance chemo"?
Would you share your experiences? I am stage IV and my onc says I have 'systemic" advanced disease...yikes that sounds nasty, huh? Does this mean we stay on chemo forever????????

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi Serrana,

I am also stage IV and have reached the point where I will be starting maintenance chemo. I've already done Folfox for 6 months and most recently after a recurrence in my lungs, I did irinotecan, Avastin, and Xeloda. My recent scans show the major stuff is gone, but I do still have multiple nodules in my lungs. These nodules, however, are all under 1 cm and haven't grown in the past several months. They also don't light up on the PET scan- so it means they're not metabolically active, although they had been in the past.

To keep things where they're at and keep anything else from starting to grow, I'll be starting maintenance. I actually have the appt. with my onc to discuss the details of it tomorrow afternoon. From what he said before, it sounds like I'll be taking Xeloda pills ( not sure yet what the maintenance dosage will be) and infusions of Avastin once every three weeks. I'm not sure how long this will go on. Studies have been done on the Avastin as maintenance for up to 12 months, so not sure about after that, but one step at a time, here!

Have you taken other chemo already? With you being a stage IV, where has your cancer spread to? I'd be interested in more of your info, if you're wanting to share it.

Blessings,
Lisa

serrana
Posts: 163
Joined: Apr 2009

Dear Lisa Wow are you an answer to prayer.I read your bio; I'm new to this site and havent posted all my info yet. I too am a Christian and live in North County ( San Diego area)I have been trying to get connected w/ Moores for 3 years and they just seem to be so disorganized( lost scans, screwed up appointments etc) so I have been up at USC Norris w/ Lenz. It is too far to drive on a regular basis Now I am asking the Lord to make a way for me to have tx closer.
My story: 2007 low rectal tumor discovered on routine colo with two tiny lymph nodes right next to it that were in question but they didn't biopsy because of the proximity to the tumor, went to UCI for neoadjuvant radiation/xeloda 6 weeks, j-pouch surgery 6/07, surgeon said there were no tumor cells found,complete response praise God, post surg chemo 4 months Folfox Oxy at USC because of the questionable nodes.
I thought I was all done and then a small lung node lit up on post chemoPET/CT scan in May 08 I had a thoracotomy w/ clear margins and no nodes involved at UCSD Thorton ( Perricone) 8/08, post surgical FOLFIRI/Avastin 10/08 to 3/09.
Now here comes the problem.....The issue is complicated by the fact that on a pre chemo PET in 8/08 right after the thoracotomy there was a "diffuse hilar area" that lit up.( Apparently having a PET that close to lung surgery is not appropriate) Perricone/UCSD/insists that this is post surgical healing and no chemo is appropriate for that. My onc Lenz/USC insists that it is a new met which doesn't make sense since it appeared suddenly right after the surgery. THe literature says this is a common thing. Lenz is not budging and says that since the 12/0 8 scan showed 50% reduction in this area it was a met;

Perricone says it is reduced because it is a healing area from the surgery So anyway on April 20 I will be
rescanned. Lenz says I will need more "maintenance" chemo if it lites up. I have appointments

w/ Caruthers at UCSD and Perricone at UCSD to discuss the next scan. So that is the story.

I would love your input on navigating Moores, who your onc is, what you think about this and maybe we need to just have a cup of tea somewhere if you are local and up to it.

taraHK
Posts: 1961
Joined: Aug 2003

I'm currently on maintenance chemo.

My situation: dx Stage III rectal 6 years ago. I have had three recurrences, all about 2 years apart. Each time a solitary lung met, treated surgically with "mop up" chemo. So, I am currently NED, but having maintenance chemo to ?prevent/reduce chances of another recurrence --or at the least postpone the time interval till the next recurrence.

I'm on Xeloda only. Two weeks on, two weeks off. 4 pills am, 4 pm when I'm on (500 mg pills). So far the side effects are minimal/manageable. I am on this indefinitely but of course we'll monitor the side effects. My oncologist has several pts on this regime and so far no relapses (yea) -- including one guy who has been on for 3 yrs.

I am looking at my situation as a 'chronic health condition'. Like someone who takes medicine for high blood pressure every day (kinda!). And I'm planning to outrun this beast!

Happy to give more info eg on my side effects on xeloda, if you wish.

Best wishes to you,

Tara

serrana
Posts: 163
Joined: Apr 2009

Thanks Tara It is reassuring that you have had such a good outcome. I need a cheerleader at this point. When I was on Xeloda and radiation for 6 weeks I ended up w/ massive weight loss, major lactose intolerance,terrible digestive disorder symptoms etc but maybe that was from the radiation not the Xeloda. Would you tell me more about your original surgery? Your Xeloda side effects? Where are you being treated? How often do you have scans? Information is really important in making these decisions as I worry that continuing chemo will not be worth it but then...... I appreciate you and Lisa answering my question.
Gratefully
Serrana

serrana
Posts: 163
Joined: Apr 2009

PS to Tara
You mean you take 2,000mg in the am and 2,000mg in the pm????????That seems like a hefty dose. I weigh 105 pounds....would that be near your weight? I don't want to get personal and ask you how much you weigh, hee hee.

impactzone's picture
impactzone
Posts: 433
Joined: Aug 2006

Hello,
Stage 4 here. dx 9/06 with colon and liver met. colon surgery, chemo (folfox), liver resection, chemo, clear scnas until 11/07 when 2 lung mets showed up. Lung thoracotomy 11/07 clean scans until 2/ 09 when another lung met showed up. I had surgery 3/30/09 adn am recovering at home. All my stuff has been at Stanford. I am in Santa Ynez Ca. After the 11/07 lung resection, they did not follow up chemo - onc is well known Dr Fisher as CEA was below 1 and there was NED. I do not know what will happen now after this last met. I took Xeloda and it wasn't too bad... for me erbitux and oxyplatin were the tougher drugs. I am a 50 year old high school teacher, father and coach and was able to work through most of this. You hang in there and fight.
Chip

serrana
Posts: 163
Joined: Apr 2009

Hi Chip
Still on the trail of the maintenance chemo issue. I re read your post and bio and wonder if you would write about the kinds of chemo you have and and when. It looks like you didn't have mop up chemo after your lung surgeries.
You are having more lung surgeries this month, yes? What are the outcomes and is chemo on the horizon now? It is lung mets that I am having CT/PET/CTs done this week and expect my onc to want to do more chemo no matter what the outcome as he sees Stage IV as a "systemic" disease.
I am reluctant to do chemo that might be unnecessary as chemo itself has got to be bad for the bod. It is like being between a rock and a hard place. I'd appreciate any info you have about maintenance chemo and long term effects of chemo. You are at NCI Stanford? I am at NCI USC Norris. Both good places. I wonder if they agree w/ each other.
Thanks for your example of courage and determination.
Serrana

impactzone's picture
impactzone
Posts: 433
Joined: Aug 2006

I had Folfox and erbitux from 10/06 to 2/07 when I had liver surgery. After Liver surgery from 4/07 to 6/07 I had folfox and avastin. I had a terrible rash with erbitux. I did not have any chemo after lung surgery in 11/07. I asked for it but my onc basically said, your CEA is below 1 (was at 17, there is NED and giving chemo without any way to track was not a good thing. After my second recurrance in 3/09, I have a mtg with him (Dr Fisher) on 4/30 to go over possibilities. The one I would or could try is Folfiri. The problem is that there is mixed results with adjuvant chemo given for lung mets. It seems that chemo helps with liver mets but weither it is pre or post surgery is unknown.I am just as frustrated as well with the randomness. I do not want to use the folfiri if I might need it later, cells will develop tolerances to the chemo and then I am out of options. Some people use just Xeloda (which I had and worked well with minimal side effects) and avastin as a maintenance. Right now I am just on a 3 month CT scan list and we'll see what he says on the 30th
Chip

serrana
Posts: 163
Joined: Apr 2009

Thanks Chip
What info do you have that adjuvant chemo is "iffy" for post lung mets?
I just finished 12 rounds of FOLFIRI and Avastin ( not alot of side effects except the usual fatigue and hair thinning but I was also in acupuncture so that might have helped a bit)
Let me know what your onc says when you see him. I see mine next Thursday re the scans I'll have this week. Sounds like you and I are in a similar situation.
Keep courage
Serrana

taraHK
Posts: 1961
Joined: Aug 2003

Yes, that's my dosage. It is, of course, based on body weight. I'm currently about 135 lbs (10 lbs heavier than I'd like to be! Go figure -- while on chemo!). But also maybe other factors. I started on a 2 week on, 1 week off regime, with 3 pills each time. Now I'm on 2 weeks on 2 weeks off (yea!! Love that second week off!), with a slightly higher dosage -- so I guess that's another factor.

Tara

taraHK
Posts: 1961
Joined: Aug 2003

It's hard to separate out side effects when you are doing more than one thing at at time (like radiation and Xeloda). And of course we all have different side effects to a specific drug.

I had a really rough time with radiation so I am hoping (?!) most of your side effects were due to that....My original surgery was APR (abdominal perineal resection), resulting in a permanent colostomy (my tumour was VERY low).

For me, the side effects for Xeloda alone seem to be: 1. mild fatigue (I HAVE to have a nap every day -- but I work, exercise, have a social life). 2. mild (?) hand-foot syndrome. My hands are very very mild (sensitive, bit dry). My feet are more sensitive, peely, some blistering. I still walk a couple of times a week (my prefered exercise) but it has limited my walking and I have to be quite careful of my feet. 3. Very mild digestive stuff. I get mild stomach cramps for a few days. I usually have diarrhea for 1-2 days per cycle. 4. some skin "splotches" (can't really complain about those. I'm freckling anyway and get "sun spots" (age spots) anyway....but some of my new splotches are definitely related to the xeloda (says my oncologist).

I have some sort of scan about every 3 mos. Sometimes just an xray but usually CT or MRI. My oncologist wants to limit radiation exposure so I am having more MRIs these days (every 6 months maximum). I'm lucky my insurance covers this. I live overseas (in Hong Kong) and that's where I am receiving my treatment.

I do want to add that my treatment is somewhat controversial -- I know many centres/doctors would not be recommending chemo for someone who is NED! My oncologist and I have a very open relationship. I have made it clear that I prefer to err on the aggressive side. I figure: I'm relatively young (50!), relatively fit (I think!), and if my body can take it, I want to take the chance. I have two kids (now teenagers) and they are a huge motivation for me. But, it is a very personal decision and I certainly support others who have taken a different route.

All the best to you as you face/make your decisions....

Tara

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi again Serrana,

Boy, we have a lot we can talk about! I'm going to send you a private message with my contact info- we can talk on the phone or even in person since we're so close to each other.
So you know, though, my regular onc isn't at UCSD/Moores- I see another oncologist by Tri City Hospital. I have seen Dr. Fanta at Moores, though, & he's continued to give me consultant advice, which has been really nice. The only drs. I've dealt with for treatment at Moores are Dr. Ramamoorthy, rectal surgeon (appts/exams- never had the surgery)& Dr. Lowy, who did my liver resection (I really like him a lot). I've thought of consulting Dr. Perricone for the lungs, but haven't yet. I'll send you the private message and we'll talk soon.
Take care,
Lisa

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