Maintenance Chemo Questions

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Nor Cal
Posts: 38
Joined: Sun Dec 06, 2020 8:18 pm

Maintenance Chemo Questions

Postby Nor Cal » Wed Sep 22, 2021 12:34 pm

Hi all - any insight here would be much appreciated.

To summarize, I've been through 20 cycles of chemo and have had 3 liver directed therapies. My original scan showed something like 20 tumors in my liver, with the largest being 14.5 cm. The good news is that the response to therapy has been fantastic, and although I'm not NED, there's very little to see on my MRI/CT scans aside from scar tissue and random spots of that look fuzzy on the images where they can't completely rule out recurrent or residual disease. My CEA when I began chemo was 120, and for the past year it's bounced around between 2.25 and 3.25.

The bad news is that I'm pretty beat up from all the treatments (I'm currently on FOLFIRI+Avastin). I'm showing early signs of portal hypertension, have to receive Neulasta and Nplate to keep my counts up, and the side effects from bi-weekly chemo are getting more difficult to deal with.

I've been chatting with my oncologist and nurses about potentially switching to maintenance chemo. I'm wondering from others experience:
1. Is there an ideal time to make that switch (ie, coinciding with a scan to know exactly where I'm at)?
2. How tolerable was the maintenance chemo? I believe our first choice is daily xeloda.
3. Anything else that would help me make an informed decision?
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120
July 2020 - October 2021 21 cycles chemo (FOLFOXIRI x9, FOLFIRI x10, 5-FU x2) + Avastin
December 2020 - February 2021 Radioembolization, Chemoembolization x2

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GrouseMan
Posts: 868
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Maintenance Chemo Questions

Postby GrouseMan » Wed Sep 22, 2021 1:24 pm

There was a period where my wife's Oncologist dropped the 5-FU from Folfiri + Avastin. My wife thought that was a piece of cake. It was the 5-FU that gave her the most problem. She was taking Irinotecan, Erbitux and (probably Avastin - it was a trial w and - without she was pretty sure she was getting the Avastin). I think that worked well for her and kept all but the Peri mets in check for about 9 months or so she was on that trial. Unfortunately Peri Mets are not easy to treat with anything and she had to go on another trial of another drug and was taken off that mix for the new trial. Unfortunately the new trial didn't help and her CEA went up. At about the same time she started to have issues with a very difficult tumor to visualize on CT that was pushing on the outside of her colon and was therefore responsible for blocking it. She wasted away after that as intervention (attempted Colostomy) and stomach tube didn't allow any absorption of nutrition. She was riding her horse and doing things that she enjoyed up until the last 4 weeks of her life. She deteriorated very rapidly at the end.

My advice would be to do what you can with maintenance to manage the tumor burden and slow it down while looking perhaps for a clinical trial you can participate in. But you also want to maintain a good quality of life as well. Do the things you want to do. Enjoy what ever time you may have left. My wife's blood work was always good in terms of function. She never had to really take a break, though the Oxaliplatin dose was reduced twice I think because of neuropathy. But she remained active. Drove herself to her chemo infusions then on to work afterwards She was a civil engineer often on construction sites. Never really let up all that much or let Cancer get her down. Most people were surprised when they learned about her illness that last month as it was hard to hide by then. She got almost 4 years from the date of diagnosis from palliative care /maintenance.

Good Luck.

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

rp1954
Posts: 1582
Joined: Mon Jun 13, 2011 1:13 am

Re: Maintenance Chemo Questions

Postby rp1954 » Wed Sep 22, 2021 1:51 pm

The difficulty is achieving good chemo sensitivity post Folfiri with Xeloda alone. Even the ADAPT formula, Xeloda with Celebrex added had difficulty with successful post Folfiri application for a percentage of patients.

I do believe that there are a number of things that you could do to try to make Xeloda useful post Folfiri.
1. Chronomodulated xeloda may comfortably allow a higher daily dose, and an even higher peak dose and effect each day.
2. IV vitamin C is considered a possible adjunct for Kras mutant, and may combine synergistically with 5FU drugs and other mild chemistry and nutraceuticals. IVC did combine well for us, based on preclinical data, personal lab data for cytocidal tx of excised tissue, and then blood marker series.
IV vitamin C also has the potential benefit of elimination/reduction of Xeloda's Hand Foot Syndrome, a common limit to Xeloda tx.
3. The continuous maintenance of Xeloda, celecoxib and other residuals during chronomodulated tx may stop or slow met spread with 24 x 365 coverage with superior QoL.
4. We found that variations in immunochemo formula would cause lesions to dissolve or die in different places over time.
5. Nutraceuticals help the body recover from chemo; some can be inhibitory adjuncts in a cocktail.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

henny-crc
Posts: 17
Joined: Mon Sep 14, 2020 6:09 pm

Re: Maintenance Chemo Questions

Postby henny-crc » Thu Sep 23, 2021 2:25 am

1)Order a PET scan to see where you at right now
2)Ask your oncologist about braftovi+mektovi targeted therapy, i believe its a lot easier to manage than chemo
Dx 06/20
23 yo
Stage 3A
T1N2a

Nor Cal
Posts: 38
Joined: Sun Dec 06, 2020 8:18 pm

Re: Maintenance Chemo Questions

Postby Nor Cal » Thu Sep 23, 2021 5:44 pm

Thanks everyone for the replies. I've talked to my cancer team and family about this, but it's very valuable to get perspective from the patients/caregivers.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120
July 2020 - October 2021 21 cycles chemo (FOLFOXIRI x9, FOLFIRI x10, 5-FU x2) + Avastin
December 2020 - February 2021 Radioembolization, Chemoembolization x2

catstaff
Posts: 163
Joined: Wed Mar 03, 2021 11:37 am

Re: Maintenance Chemo Questions

Postby catstaff » Thu Sep 23, 2021 6:18 pm

Did they have you on Folfiri+bev while your CEA was 2.5-3.5? May not be NED but seems pretty close to it. The BEACON regimen mentioned may be a viable option, but you may also want to reserve that for later. PET may be a good idea also.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Rikimaroo
Posts: 361
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Maintenance Chemo Questions

Postby Rikimaroo » Thu Sep 23, 2021 7:56 pm

With that CEA i would ask for a break and keep and eye on things. I am on maintenance which is 5fu and Avastin. pulled out the Irinotecan. It's still tough. My last cea check was 21, but next one hopefully is down more. Getting CT scan this week, but I thing are stable so far.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Nor Cal
Posts: 38
Joined: Sun Dec 06, 2020 8:18 pm

Re: Maintenance Chemo Questions

Postby Nor Cal » Fri Sep 24, 2021 10:30 am

catstaff wrote:Did they have you on Folfiri+bev while your CEA was 2.5-3.5? May not be NED but seems pretty close to it. The BEACON regimen mentioned may be a viable option, but you may also want to reserve that for later. PET may be a good idea also.


Yes, I've been on that regimen for a while. Did a couple solo 5-FUs when my blood counts were lower. BEACON is definitely on the list, though we are reserving it for later. My next round of scans are set for early Nov.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120
July 2020 - October 2021 21 cycles chemo (FOLFOXIRI x9, FOLFIRI x10, 5-FU x2) + Avastin
December 2020 - February 2021 Radioembolization, Chemoembolization x2

Nor Cal
Posts: 38
Joined: Sun Dec 06, 2020 8:18 pm

Re: Maintenance Chemo Questions

Postby Nor Cal » Fri Sep 24, 2021 10:32 am

Rikimaroo wrote:With that CEA i would ask for a break and keep and eye on things. I am on maintenance which is 5fu and Avastin. pulled out the Irinotecan. It's still tough. My last cea check was 21, but next one hopefully is down more. Getting CT scan this week, but I thing are stable so far.


I talked to my oncologist yesterday, and he wants to do scans in early Nov and then proceed depending on the scans. I figure I can deal with 3 more cycles, and then hopefully switch to maintenance.

Good luck on your CT.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120
July 2020 - October 2021 21 cycles chemo (FOLFOXIRI x9, FOLFIRI x10, 5-FU x2) + Avastin
December 2020 - February 2021 Radioembolization, Chemoembolization x2

catstaff
Posts: 163
Joined: Wed Mar 03, 2021 11:37 am

Re: Maintenance Chemo Questions

Postby catstaff » Fri Sep 24, 2021 12:44 pm

Is that three more cycles after already 20? Seems like a lot if it's gotten your CEA so low (congratulations, by the way). My DH has done 12 and it's beaten him up, mostly due to anemia. He has two more scheduled, including one Monday. His CEA is still dropping though at a much slower rate than initially.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Nor Cal
Posts: 38
Joined: Sun Dec 06, 2020 8:18 pm

Re: Maintenance Chemo Questions

Postby Nor Cal » Fri Sep 24, 2021 10:18 pm

catstaff wrote:Is that three more cycles after already 20? Seems like a lot if it's gotten your CEA so low (congratulations, by the way). My DH has done 12 and it's beaten him up, mostly due to anemia. He has two more scheduled, including one Monday. His CEA is still dropping though at a much slower rate than initially.


Yep, 3 more. Because my diagnosis was so severe, we decided to be as aggressive as possible and let the chips fall where they may. My oncologist would probably be okay with 5-FU alone if I argued for it. But for now I just want to get to the scan and then shift treatment gears.

I sympathize with your DH. These regimens can be brutal, and anemia makes it hard to stay mentally focused on the end goal. Hang in there.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120
July 2020 - October 2021 21 cycles chemo (FOLFOXIRI x9, FOLFIRI x10, 5-FU x2) + Avastin
December 2020 - February 2021 Radioembolization, Chemoembolization x2


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