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Dr said maint. chemo for life- need input please

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Dr said maint. chemo for life- need input please

Postby mcgivarenfaith » Wed Apr 06, 2011 1:09 pm

Well, everything is goin great so far. My husband was DX May 2010 Colorectal Stage IV. had 6 months chemo, liver resection in Dec 2010, they removed 8 lesions & did an ablation on 2 tumors. Started back on chemo plus radiation everyday for 6 weeks. Finished that on Feb 28, 2011. we have met with colon surgeon & he is scheduled to remove primary tumor later this month.

Petscan from March said no cancer in body. He is in remission.
My question is , our Onc said he will likely be on chemo for life. Has anybody had similar circumstances?
He has done so well with treatment thus far & i am wanting him to be around for a long time... Im not really sure about survival rates on patients who has been able to have the resections. Any info would be awesome.
Thanks,
Jennifer
Wife of Matt, DX Stage IV colorectal cancer May 2010
6 mths Folfox
Liver resection Dec 2010
6 weeks of Chemo/radation therapy
Colon surgery & temp ileostomy April2011
NED since June 2011
back on chemo(Onc says maint chemo)
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Re: Dr said maint. chemo for life- need input please

Postby Bev G » Wed Apr 06, 2011 2:56 pm

Hi:

I was stage IV when I was diagnosed almost 18 months ago (wow, time flies). Had large tumor at sigmoid-rectal junction (removed within days) and very large tumor in posterior caudate lobe of my liver (removed in April of last year), 2/22 nodes positive. The liver resection was done with CURATIVE INTENT (wonder why I can never type that without putting in it caps? :) ?) I had 3 rounds of FOLFIRI pre-op and 7 rounds of 5FU post-op, and have had 4 negative CT/PETS since liver resection, currently placing me in NED status. With that info, I would certainly question my onc if she wanted me on continuous chemo and I don't think I'd do it unless she had truly excellent reasons. I fully expect to be back on chemo at some point, but I'll wait til any little suckers come back. YMMV.

Best wishes to you, sounds like it's been going very, very well.

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now
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Re: Dr said maint. chemo for life- need input please

Postby Terry » Wed Apr 06, 2011 3:20 pm

My onc. discussed putting me on maintenance which he said would be Xeloda. I tolerated Xeloda very well but it did make me tired. I believe he said it would be at a lower dose. At this point he's not talking about it since it seems at this point that we were able to nuke everything with radiation and I didn't have anything new for over a year.

I think there are some people on here on maintenance, hopefully they'll see this a post. Try and keep it up at the top for a few days.

Congratulations on the clear scan, that's great news!
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!
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Re: Dr said maint. chemo for life- need input please

Postby dianne052506 » Wed Apr 06, 2011 7:33 pm

Jennifer,

Is the onc talking about starting your husband on maintenance chemo now, while he is clear, or is he saying that the odds of recurrence are high, and if it comes back, then to expect more chemo? There's a big difference.
I'm been on the life-long plan since my recurrence in Oct 07, but my recurrence came in the form of multiple nodules in each lung, too many and too scattered to remove by surgery or radiation. Chemo is my only way of keeping them in check. I went back on FOLFOX/Avastin and did 21 additional rounds before I had an allergic reaction, then dropped back to just Xeloda for three months. A CT scan showed progression over that time, so I started on XELIRI/Avastin. That was in Feb 2010, and (knock, knock), so far, things are holding again.

Chemo-for-life is a balancing act between enough chemo to hold things off, and maintaining a decent quality of life. We've made dose adjustments, and schedule adjustments that aren't typical of treatment plans for the newly diagnosed. I still have fatigue issues, and have finally learned to manage the GI problems that come with irinotecan, but so far, life is still very good, at least 2 weeks out of 3, and rough, but not awful, the other week.

Again, though, I went on this plan when I had visible disease that was inoperable. I don't know if I would have done that if I had been NED. If your husband's onc is talking about maintenance now, is it possible that he means just Avastin? My onc discussed that option if we were to ever get to the position where we had knocked everything back completely, but we haven't been able to do that.

If your onc is talking about starting on maintenance even while your husband is in remission, I think I would try to get a second opinion, even if your current doc is someone you really trust. I would try to get with a cancer center and ask for an opinion from them. MDAnderson has been wonderful working with my local onc to develop a maintenance plan.

I didn't go back and read your old messages, but this one sounds like things are going well. I hope I've given you some encouragement.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again
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Re: Dr said maint. chemo for life- need input please

Postby SkiFletch » Wed Apr 06, 2011 9:12 pm

This is a very patient-individual topic, everybody is going to have different answers, and every patient is different. I was told I might be on chemo for life over a year and a half ago... Haven't had a treatment since June 15th 2010. My oncologist thought my cancer would definitely recur, despite my inital surgery and chemo. Well, when the HIPEC procedure turned up no active disease and even proof that the chemo had done it's job, my onc agreed it would be wiser to scan frequently and wait. Plans can change, heck the plan always changes eventually with stage IV cancer...

Either way, this is only a decision you guys and your doctor can make. Weigh the plusses and minuses, listen to your oncologist, ask for his experience in this matter. How many similar patients has he dealt with, why did he make the reccomendations he made? What chemos? How often? For what purpose? At what point do we say enough is enough? These are all important questions to ask your onc.

Good luck
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D

"Can any one of you by worrying add a single hour to your life."
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Re: Dr said maint. chemo for life- need input please

Postby KarMel » Thu Apr 07, 2011 6:54 am

I think the Oncologists of the world are still debating this issue...sailing in uncharted waters, so to speak.

My local oncologist, someone who I think of very highly, initially told me maintenance for life. AFter Folfox/avastin, I'd be on 5FU, leukovorin, and avastin every other week. That lasted almost 6 months.

My Big University Medical Center oncologist, who my local oncologist regularly consults with, thought I should go off after 6 months. He is NOT a believer in maintenance chemo. So, I went off maintenance chemo.

When I went off maintenance chemo last May, I was stable. Since then, I have had a slow progression of my tumors, in spite of starting up another trial of chemo last November thru this past March.

I often wonder if I had stayed on maintenace if the tumors would have stayed stable longer. Both oncologist are convinced that the cancer would have eventually progressed, it was just a matter of time.

Peace
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"
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Re: Dr said maint. chemo for life- need input please

Postby hannahw » Thu Apr 07, 2011 2:07 pm

Personally, I wouldn't take input from any of us because it's a personal decision that should be based both on the specific circumstances of your husband's disease and on his personal values with respect to balancing the +/- of treatment options.

Some people are willing to do whatever the doctor says without question. Other people want info and to provide input on treatment plans. Neither option is right or wrong, just different. It sounds like you guys want info and input. If that's the case, ask your oncologist to explain the pros and cons of each option and then decide for yourselves. You have to know what you might be signing up for, either way.
Daughter of Dad with Stage IV CC
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Re: Dr said maint. chemo for life- need input please

Postby Jewells » Thu Apr 07, 2011 3:25 pm

After my recurrance and chemo, they put me on maint treatments. I am currently on Avastin until at least October. It is definitely a personal choice if you have this type of treatment or not. It works well for some and not so much for others.
Dx 3/08
Stage 2
Resection & Chemo
Recurrance 3/10
Stage 4
6 months of Chemo
1 year Avastin
Recurrance 10/11
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Re: Dr said maint. chemo for life- need input please

Postby vancouver eve » Sun Apr 10, 2011 7:45 pm

I have been on maint. chemo for two years. I take avastin and xeloda once a month. I take a 1000 mg. xeloda in the morning and the same amount at night. So far I have been stable. I do have two tiny spots in my lungs. I will be given a PET scan soon and the results may enable me to become NED. The Onc. stated that if that is the only cancer I have in my body, I will have it removed by vats surgery. I did have vats surgery two years ago and the surgeon aborted the operation because he found a small 2mm nodule that was cancer, The small nodule was on the outside of the pleura of the lung. The Surgeon believed I had a worse cancer than I have. The Surgeon did remove one nodule though and the 2mm nodule. I visited the Surgeon last week and I will see him again in June. If the surgery goes ahead and I become NED, I will still have to make a decision whether to stay on maint., or quit and be monitored.
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Re: Dr said maint. chemo for life- need input please

Postby mcgivarenaith » Tue Apr 12, 2011 11:55 am

Thank you all for your answers. I will investiage all avenues. Matt surgery is scheduled for April 27 to remove the colon area.
Prayers to you all:))
mcgivarenaith
 


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