MSK Liver Surgeon and FOLFIRI question

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Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: MSK Liver Surgeon and FOLFIRI question

Postby Green Tea » Thu Mar 25, 2021 11:05 am

krs029 wrote: ... she didn't recommend any specific surgeon at MSK. Is there a recommended surgeon? I thought there was a post about this but couldn't find it....

MSK liver surgeons:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65247&p=507453#p507453
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44065&p=316042#p316042

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: MSK Liver Surgeon and FOLFIRI question

Postby claudine » Thu Mar 25, 2021 11:32 am

Welcome to the forum krs029. hopefully you can get answers to your questions here :)
He's been doing FOLFIRI + avastin for over 9 months now

My husband did 18 cycles and like you describe, it got a bit harder towards the end. He got a break between cycle 17 and 18 because they thought he was getting ready for surgery, but it got delayed a bit so his onc decided to treat again. Well, it's amazing what a 6-weeks break did, he tolerated the 18th cycle so much better! So maybe your husband can get a little break before resuming treatment?
Fingers crossed he's a candidate for surgery!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: MSK Liver Surgeon and FOLFIRI question

Postby catstaff » Thu Mar 25, 2021 2:17 pm

My DH starts on Monday. He really cannot afford to lose weight again, we've barely built him back up from the radiation/folfox/surgery to a low-normal BMI. (He has always been thin.) At this point I think the plan is a minimum of 12 cycles.

This is just vanity, but how common is hair loss? Thinking of asking for one of those ice caps. Those are usually given to women and I don't want him to be embarrassed. :)
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-

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: MSK Liver Surgeon and FOLFIRI question

Postby claudine » Thu Mar 25, 2021 2:26 pm

Catstaff, we were told that DH would lose his hair pretty soon after the first infusion, and he did, but he never got completely bald - just a lot of thinning, especially his beard; funnily he ran into someone he hadn't seen in a while and who didn't know about his cancer, and that person said "wow you look great, I love the short hair and beard"!!!
It stabilized after 5-6 infusions I think, and it all grew back rather quickly after he stopped treatment.
Also he did not lose weight (the opposite actually, to his dismay, because he exercised less).
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: MSK Liver Surgeon and FOLFIRI question

Postby kandj » Fri Mar 26, 2021 6:51 am

krs029 wrote:
Second question, how long can someone stay on FOLFIRI before the side effects become too much? He's been doing FOLFIRI + avastin for over 9 months now. He's able to continue working (though he generally works from home during the treatment period) and function fairly normally. But lately he seems more tired than normal, has to run to the bathroom much more often, doesn't have a great appetite, and nothing sounds good to eat (even now which is his off week). He's lost about 13 lbs in the last month. His labs have generally been fine except that his Alk Phos has always been high and his bilirubin has been on occasion slightly elevated. CEA hasn't been an indicator for him -- it was 2.8 at diagnosis. I don't know if this is all due to FOLFIRI or something else going on?


My husband has been on and off chemo (mostly on) for 5.5 years. As of Wednesday he has had 100 rounds of chemo In Some form or another. From FOLFOX to Folfiri to Xeloda to a xeloda/Irinotecan combo. That doesn’t include the FUDR put into his hepatic pump he has had since Dec 2015. DH has Mets to every lobe of his liver (and multiple Mets in some lobes) when diagnosed. He did get a liver resection at MSK. He’s had a few recurrences: in his liver, lungs, adrenal gland, liver again, and a node near his pancreas. They have treated them all like whackamole and either cut them out or done radiation. I would definitely seek a second opinion at MSK


And for the hair loss question: DH lost no hair on FOLFOX, hair thinned first round of FOLFIRI, and for some reason now, 100 rounds of chemo later, it’s majorly thinning on Irinotecan. It’s weird
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: MSK Liver Surgeon and FOLFIRI question

Postby catstaff » Fri Mar 26, 2021 8:34 am

It seems plausible that long-term chemo will wear one down, but it does appear that FOLFIRI is feasible over the (relatively) long term, which isn't the case for all chemos.

Kandj, I assume your husband is wild-type for KRAS and BRAF, is that correct? His endurance sounds amazing.

Irinotecan is the cause of any hair loss. Perhaps it's used at a higher dose when it's combined with Xeloda as compared to FOLFIRI. 5FU/Xeloda/capecitabine causes little to no hair loss by itself.
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-

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: MSK Liver Surgeon and FOLFIRI question

Postby claudine » Fri Mar 26, 2021 10:21 am

and a node near his pancreas


Interesting - your husband is one of the only one I know to have had an adrenal gland met, like mine, and my husband has "a persistent subtle somewhat oval-shaped hypodensity adjacent to the tail of the pancreas measuring approximately 2 cm in maximum dimension". It didn't light up on PET last year and has not changed since, so who knows what it is!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24


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