question chemo for lifers

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jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

question chemo for lifers

Postby jillbugs4110 » Sat Sep 19, 2015 11:39 am

Hi

For those of you who have done multiple rounds are you on 5fu...? I had a complete response first round ned...it's back in liver so I start again in oct...5th just wanted peeps experience....tx

Thanks
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

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Jack&KatiesMommy
Posts: 633
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: question chemo for lifers

Postby Jack&KatiesMommy » Sat Sep 19, 2015 2:23 pm

I was always working toward a liver resection (which I was able to have after getting the HAU pump.). Is the liver tumor(s) resectable?

Cynthia
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: question chemo for lifers

Postby BrownBagger » Sat Sep 19, 2015 2:25 pm

I'm on Xeloda. Have been for years. I also get bi-weekly infusions of Erbitux and Iriontecan.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: question chemo for lifers

Postby jillbugs4110 » Sat Sep 19, 2015 2:37 pm

[quote="Jack&KatiesMommy"]I was always working toward a liver resection (which I was able to have after getting the HAU pump.). Is the liver tumor(s) resectable?

Cynthia[/quote

Hi I have had them go in they where gonna cut out what they saw in may and I was NED so they closed me up now they will not even say it is a possibility I wanted the hai...and I had micro peri on dx wanted hipec and they just keep telling me chemo works right now so no go I got that in oregon and wa. So sad cause I know I could take aggressive treatment I am in good health.
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

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GrouseMan
Posts: 854
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: question chemo for lifers

Postby GrouseMan » Sat Sep 19, 2015 3:22 pm

My wife started her chemo two years ago on FOLFOX and after two rounds of that added Avastin. After completing the 12 rounds of FOLFOX, she continued on 5-FU, Leucovorin, and Avastin, every other week for 12 weeks, then from then on afterwards its been every three weeks, maintenance therapy. She is stable as far as anyone can tell via CT scan. Monday when she goes in for her Avastin Infusion and get her 5-FU pump she will meet with her oncologist to go over her CT results from Wednesday. We don't expect anything will have changed. Tumors on her liver have calcified, the one on her spleen they can't see anymore, and they suspect the small spots showing on her lungs are not Mets, as they haven't changed in two years.

My wife tolerates this treatment very well, and if you didn't know any better you would not likely even suspect she was fighting Stage IVb cancer. Her oncologist after her last CT scan mentioned, that he was going to talk to the other members of the practice/tumor board, and see what they might think about some possibility of ablation or surgery to further reduce those calcified liver Mets. The jury is still out on that as the liver surgeon and interventional radiologist, will have to review everything. He may have more to say about that Monday.

So - you never know. For my wife, this 5-FU/Avastin is working well long term. Its not debilitating, she works and plays much the same as before, with the exception that she can't really train for trail runs, as the treatment week, results in a back slide for any endurance work. That was too frustrating for her so she has pretty much given up running. Still she works her dogs in the field, rides horses, and judges field trial events.

Hopefully, you can find a formula/Plan that will work for you, and that it can hold things together/at bay until we have more and better options such as immunotherapy, new drugs to keep thing "STABLE". We will take Stable any day of the week, though of course it would be nice to be NED or god forbid, Cured!

Best regards,
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

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: question chemo for lifers

Postby jillbugs4110 » Sat Sep 19, 2015 3:36 pm

Wow thank you for the encouragement.....I pray this will happen for me
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: question chemo for lifers

Postby canadiandaughter » Sat Sep 19, 2015 4:00 pm

Not really long timer, but dad has had a full year of folfiri, He had a ct scan on Friday, hopefully results on Monday at his appt. He last scan showed everything was still shrinking except the liver, so I am a bit anxious about these results. I know a year is not that long in the scheme of things, but guessing he will be a chemo for life candidate to so this topic is of interest to me.
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

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

Re: question chemo for lifers

Postby musicluvr » Sat Sep 19, 2015 6:57 pm

Just found out I will have the chemo for life, until it stops working. Mets on both lung, hoping for RFA determination next month, but it is doubtful. Would love to hear responses on this thread.
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

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: question chemo for lifers

Postby jillbugs4110 » Sat Sep 19, 2015 7:24 pm

Sorry frustrating to hear
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

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trapbear
Posts: 74
Joined: Mon May 10, 2010 12:53 pm
Facebook Username: bill manning

Re: question chemo for lifers

Postby trapbear » Sat Sep 19, 2015 8:39 pm

My sweet husband did chemo for life for a lost 7 years. He had a good quality of life until the last 6 months when chemo stopped working. There are lots of new immunotherapies so keep fighting.
Hugs
Bill
Husband Dx with Stage 3 CC in Dec 07
Xelox Jan-July 08
Lung mets Jan 09
Folfiri plus Avastin Mar-May 10
5FU plus Avastin May 10-current
2 liver mets March 13, continue 5 FU & Avastin
liver RFA Oct 13, hospice June 14, at peace Sept 2, 2014

sjring
Posts: 181
Joined: Mon Jun 30, 2014 3:16 pm
Location: Philadelphia, PA

Re: question chemo for lifers

Postby sjring » Sun Sep 20, 2015 6:28 pm

Hi Jillbugs,

Similar to GrouseMan's wife, I did 15 rounds of FOLFOX 14 of them with Avastin. From there went to every other week maintenance of Avastin and 5-FU, continued to see liver met shrinkage on the maintenance. When the liver was clear, we went to every three weeks and then started to see some progression, so back on the Oxili. Did 4 rounds of that and just scanned this past Thursday and waiting on the report. If all is good, we'll likely go back to the every other week maintenance, if not we head to the as yet to be determined "Plan B". The positive is that the recurrence was not in the liver.

Now after all of these MRI's over the past two years if I could just get my nose to stop pointing to magnetic north.
50 YO Husband & father of 2 teenagers.
DX 9/9/13 Stage 4 cc (at age 48)
16 Rounds FOLFOX + Avastin (Oct-13 to May-14)
Maintenance chemo - Avastin & 5-FU infusions (Jun-14 to Jul-15)
Jul-15: Mets to lymph nodes, resuming FOLFOX
Sep-15: MRI showed stability, back to maintenance chemo.

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: question chemo for lifers

Postby jillbugs4110 » Sun Sep 20, 2015 7:30 pm

Thank you for all the kind encouragement I an gonna get my big girl panties on and fight to the death or the immunotherapy lol...I have two small kids....I have to for them.
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.


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