ONC says chemo for life.. really?

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musicluvr
Posts: 91
Joined: Fri Feb 21, 2014 8:07 pm
Location: Grand Rapids MI

ONC says chemo for life.. really?

Postby musicluvr » Tue Sep 15, 2015 3:11 pm

I was thinking I would be doing the FOLFIRI +Erbitux for 6 months then have a break? Apparently not. Onc said this chemo for about a year until it no longer works, then change to Avastin and do that until it no longer works. What then? Don't I ever get a break? Scans every 2-3 months no matter what...

Need to hear from other Stage IV with lung mets! Need reassurance.
58 yo female
Dx CRC 2/17/14
perm colostomy 3/14
12 rounds 5FU
Small bowel obstruction 8/14
Multiple nodules both lungs 6/15
FOLFIRI + ERBITUX started 8/11/15
Irinotecan reduced 40% , October
12/15 NED, holiday next 2 treatments, then 5FU only
Mets are back 3/16
Erbitux + Irinotecan only; dropping 5FU
CT Scan 6/16 shows mets still there
5/17 been on Erbitux only
chemo break for 3 months
5 mets now on CT Scan. Back to Erbitux
1/18 lung Mets all increased slightly
Adding Irinotecan back

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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: ONC says chemo for life.. really?

Postby GrouseMan » Tue Sep 15, 2015 5:21 pm

Have you gone for a second opinion anywhere? Have you come over to UoM Medical or Karmano's over here on this side of the state? Perhaps take a trip to Houston (MDA) or NYC (MSKCC). If they get some control over your lung Mets with Chemo perhaps you will become a candidate for surgical resection of your lung nodes. You never can tell. Since we ar snot doctors and don't know all the facts concerning your case. No one here can really make any other recommendation than that you get a second or even a third opinion. However be prepared, that even if you do, you may still not like the answer. The grass is not always greener on the other side. Its usually the same old same old.

Sorry you are on Chemo for life. My wife is as well at this point, though she tolerates it pretty well. She goes in for a CT scan tomorrow. We hope for things to remain stable or at best see further shrinkage/calcification of her liver. Mets. Good luck in your search.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: ONC says chemo for life.. really?

Postby jhocno197 » Tue Sep 15, 2015 6:19 pm

Some people can take a break & be ok, some can't.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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Mastan
Posts: 433
Joined: Sat Feb 19, 2011 11:12 am
Location: Albuquerque, NM

Re: ONC says chemo for life.. really?

Postby Mastan » Tue Sep 15, 2015 10:06 pm

musicluvr wrote:I was thinking I would be doing the FOLFIRI +Erbitux for 6 months then have a break? Apparently not. Onc said this chemo for about a year until it no longer works, then change to Avastin and do that until it no longer works. What then? Don't I ever get a break? Scans every 2-3 months no matter what...

Need to hear from other Stage IV with lung mets! Need reassurance.


There is no good news for this situation. There is always hope for a breakthrough but at present the situation is not very favorable. I am on my 27th FOLFIRI/avastin cycle. 5 of the days of the 14 day cycle I feel motivated to put a cap in my head because of the side effects. How long I put up with this S#*% is TBD. There is no better example than this of being between a rock and a hard place.

Mark
Dx 6/2010 rectal CA

Nik Colon

Re: ONC says chemo for life.. really?

Postby Nik Colon » Wed Sep 16, 2015 12:22 am

So sorry to hear :( I hope things change for the better, best wishes

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Mastan
Posts: 433
Joined: Sat Feb 19, 2011 11:12 am
Location: Albuquerque, NM

Re: ONC says chemo for life.. really?

Postby Mastan » Wed Sep 16, 2015 8:48 am

ritz75 wrote:So sorry to hear :( I hope things change for the better, best wishes


Thanks for the words of support. I am just getting pissed off because the side effects are interfering with my ability to do my job. My job is very important to my well being. If I can no longer do my job well then the reason for getting up each day is severely diminished.

Mark
Dx 6/2010 rectal CA

jalusa
Posts: 221
Joined: Thu Apr 02, 2015 9:26 am

Re: ONC says chemo for life.. really?

Postby jalusa » Wed Sep 16, 2015 10:24 am

I was told chemo for life by Mayo. That still may be how I end up, I hope not.

I then went to Memorial Sloan Kettering and they offered the HAI Pump to try and get me to liver resection. I have my first scans since starting the pump chemo tomorrow. Fingers crossed.

I have learned that some practices are conservative in their treatment, some more aggressive. Sloan is aggressive.
Hoping to get to resection with HAI pump.
Failed PVE - Searching for options
Chemo for life

Nik Colon

Re: ONC says chemo for life.. really?

Postby Nik Colon » Thu Sep 17, 2015 2:31 am

jalusa wrote:I was told chemo for life by Mayo. That still may be how I end up, I hope not.

I then went to Memorial Sloan Kettering and they offered the HAI Pump to try and get me to liver resection. I have my first scans since starting the pump chemo tomorrow. Fingers crossed.

I have learned that some practices are conservative in their treatment, some more aggressive. Sloan is aggressive.

I'm surprised mayo doesn't offer hai, I would think they would or should soon since they are #3 for cancer and #1 on many other things. They need to catch up!

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: ONC says chemo for life.. really?

Postby midlifemom » Thu Sep 17, 2015 6:03 am

jalusa wrote:I was told chemo for life by Mayo. That still may be how I end up, I hope not.

I then went to Memorial Sloan Kettering and they offered the HAI Pump to try and get me to liver resection. I have my first scans since starting the pump chemo tomorrow. Fingers crossed.

I have learned that some practices are conservative in their treatment, some more aggressive. Sloan is aggressive.


Hoping for a great scan for you today. Let us know once you get your results.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: ONC says chemo for life.. really?

Postby Lee » Thu Sep 17, 2015 10:03 am

ritz75 wrote:
jalusa wrote:I was told chemo for life by Mayo. That still may be how I end up, I hope not.

I then went to Memorial Sloan Kettering and they offered the HAI Pump to try and get me to liver resection. I have my first scans since starting the pump chemo tomorrow. Fingers crossed.

I have learned that some practices are conservative in their treatment, some more aggressive. Sloan is aggressive.

I'm surprised mayo doesn't offer hai, I would think they would or should soon since they are #3 for cancer and #1 on many other things. They need to catch up!


I think it depends on which Mayo location. I believe the one in Minnesota is one of the top in the nation. We have one here in Phoenix, have heard of a few not good reports. Our insurance dropped them a few years ago.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: ONC says chemo for life.. really?

Postby Lee » Thu Sep 17, 2015 10:05 am

jalusa wrote:
I have my first scans since starting the pump chemo tomorrow. Fingers crossed.



I'm swinging chickens for good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Nik Colon

Re: ONC says chemo for life.. really?

Postby Nik Colon » Thu Sep 17, 2015 6:50 pm

Lee wrote:
ritz75 wrote:
jalusa wrote:I was told chemo for life by Mayo. That still may be how I end up, I hope not.

I then went to Memorial Sloan Kettering and they offered the HAI Pump to try and get me to liver resection. I have my first scans since starting the pump chemo tomorrow. Fingers crossed.

I have learned that some practices are conservative in their treatment, some more aggressive. Sloan is aggressive.

I'm surprised mayo doesn't offer hai, I would think they would or should soon since they are #3 for cancer and #1 on many other things. They need to catch up!


I think it depends on which Mayo location. I believe the one in Minnesota is one of the top in the nation. We have one here in Phoenix, have heard of a few not good reports. Our insurance dropped them a few years ago.

Lee

That's the one I'm talking about, we both live in MN

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: ONC says chemo for life.. really?

Postby Steph20021 » Thu Sep 17, 2015 7:54 pm

My personal opinion is that cancer is so unpredictable never say never. Maybe if things shrink or you become stable you may become a surgical candidate or get a chemo break. I was chemo for life and then by second opinion got surgery- no lung mets though. And after my surgery they told me no more chemo until I have a bad scan. I miss the safety of having chemo bi weekly keeping things stable. The devil you know kind of thing.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: ONC says chemo for life.. really?

Postby Cb75 » Thu Sep 17, 2015 8:53 pm

I'm in your boat. Stage IV with lung mets. I had a great response to folfiri and avastin. Everything gone but one spot. After 14 months straight, my oncologist suggested a break. My last scan, two and a half months into the break, I have fluid in my plura that needed to be drained and a large mass growing off an ovary. It "may" not be cancer, but it's likely it is. Where I know others who take breaks every six months and seem ok. It's a risk. Who knows??!

Not to scare you....it's unpredictable.

Cb <3
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: ONC says chemo for life.. really?

Postby Lee » Thu Sep 17, 2015 9:15 pm

[
I think it depends on which Mayo location. I believe the one in Minnesota is one of the top in the nation. We have one here in Phoenix, have heard of a few not good reports. Our insurance dropped them a few years ago.

Lee[/quote]
That's the one I'm talking about, we both live in MN[/quote]

I live in Phoenix Arizona, You live in Minnesota. Your place has a high reputation. Here in Phoenix, it's ok. BUTT I know too many people who were miss diagnosed. Now Cancer Treatment Center of America has a better reputation. AND I believe MD Anderson/Banner Hopital has a pretty good reputation too. Remember here in Phoenix, it's retirement village/city, at least for 6 months out of the year.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!


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