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Stage lll now stage IV, looking for guidance

Posted: Mon Dec 06, 2021 12:23 pm
by Adp0909
First, you all are the bravest people I know and as a daily lurker you have given me so much support and information over the last year.

This is my first time posting as caretaker for my 38yo husband. Everything at stage 3 seemed to the book and we had so much hope and dare I say confidence as soon as treatment wrapped. Sadly it’s back. After signatera test and scans moved up we are looking at 3 small liver Mets. Needless to say we are in shock and frankly devastated. (but holding it together for our sweet 2yr old gal).

While we seek a broader opinions this time around - we are in the Bay Area, CA so feel blessed to have options around us - I wanted to help set him up for this next round. My capacity is also a bit different this time, I’m 6+ months pregnant due with a boy in March, stakes seem so high. We desperately want to get this gone keep it away and have him around for our young family for a long time.

Here are a few initial questions.

- Plan is 2-3 rounds of Folfori/Avastin then rescan and plan for resection. What do I need to prepare for with this chemo? Any tips? How different is it from Folfox? Onc said it would be harder and supports time off work this time (he never missed a day on folfox but it was hard)

- also I feel we need mental/emotional support this time around. He is still in a curative place but for the first time his Onc seems worried. Maybe bc it came back so fast? Can we get past this? Sorry just so scared and dealing with many sleepless nights at this point. Would love any similar stories of support and hope.

Thank you!!

Re: Stage lll now stage IV, looking for guidance

Posted: Tue Dec 07, 2021 2:59 am
by Rock_Robster
Hi there, I’m sorry to hear the news, but great that the oncologist is optimistic about getting surgery. This is very good news. Has he had a consult with a liver surgeon directly yet? They may also want to be involved in the chemo planning as this can impact surgery too (for example, my oncologist withheld Avastin from the last cycle so as not to further delay surgery; and the surgeon didn’t want me doing more than 4-5 cycles to avoid risk of liver injury before resection).

Depending on surgical opinion, you may also want to consider a consult with a radiation oncologist as a Plan B, in case for some reason the surgeon isn’t able to resect/ablate everything.

Have they done genomic/biomarker testing to confirm any mutations, MSS status etc., and hence most appropriate next line of chemo treatment?

Personally I found FOLFIRI easier than FOLFOX, and Avastin doesn’t add much for many folk in terms of side effects. Hope your experience is the same. The hallmark of FOLFIRI is diarrhea, so keep some Imodium on hand and watch out carefully for dehydration. I did find my fatigue was greater, but that may also be because I had done more chemo overall.

Cheers,
Rob

Re: Stage lll now stage IV, looking for guidance

Posted: Tue Dec 07, 2021 6:21 am
by Rob in PA
I concur with what Rock Robster said....get a liver surgeon involved ASAP. The surgeon may offer suggestions that an onc may not have considered, for example, surgery first and then follow up with chemo. That's if the margins for surgery are okay now.

Liver is the next step for progression so its not that untypical and hopefully you'll find an experienced surgeon.

Best to you and your husband.
Rob in PA

Re: Stage lll now stage IV, looking for guidance

Posted: Tue Dec 07, 2021 5:17 pm
by Adp0909
Thank you so much for your replies, it helps a great deal. Pleased to know for the most part we might know what to expect for the Folfiri stage based on his experience with folfox. We do have 1 of 2 liver surgeon conversations booked tomorrow following MRI and biopsy today. Hoping they concur after todays results that surgery is the way forward.

Also curious how they determine how long to do chemo post surgery. Is this a forever thing or if we get clean margins maybe it’s considered mop up again?

Rock Robster- he is MSI and I’d have to look back at additional initial tests for any mutation information - I don’t recall any.

Impressed with your journey Rob in PA - can only pray for the same.

Thank you, thank you.

Re: Stage lll now stage IV, looking for guidance

Posted: Wed Dec 08, 2021 7:01 am
by radnyc
Your husband’s situation sounds very much like mine. I’d definitely look into HAI treatment, hepatic arterial infusion, I had it done in NYC at Memorial Sloan Kettering, they’re the leaders in this treatment. They cured me, I’m 11 years out. I’m not sure if there’s a hospital in the Bay Area doing this, but I would definitely consider it. Best of luck.

Re: Stage lll now stage IV, looking for guidance

Posted: Wed Dec 08, 2021 1:54 pm
by claudine
Onc said it would be harder and supports time off work this time (he never missed a day on folfox but it was hard)


Welcome to the forum, I'm so sorry about the recurrence, but the liver has one advantage over other sites - it can be chopped off and it'll regrow!
Re. Folfiri/Avastin, that's interesting the onc said that; my husband suffered a lot more while on Xelox (and now has permanent neuropathy from it). By comparison, his 18 cycles of F/A were a breeze; and he did not take any time off (for either chemo). Hopefully in 11 years you can post an update like radnyc :)

Re: Stage lll now stage IV, looking for guidance

Posted: Wed Dec 08, 2021 6:24 pm
by roadrunner
When you state: “He’s MSI,” that’s potentially a very important point. It may open up significant therapeutic options that many of us can’t access, e.g. immunotherapies. You should definitely have a discussion with your oncologist about the implications of that.

Re: Stage lll now stage IV, looking for guidance

Posted: Fri Dec 10, 2021 2:50 pm
by boxhill
I'm assuming that the MSI was a typo and you meant MSS, otherwise there is no way they'd be fooling around with chemo with a person with mets. He'd be going straight to immunotherapy.

Re: Stage lll now stage IV, looking for guidance

Posted: Fri Dec 10, 2021 3:49 pm
by roadrunner
Well, it’s worth clarifying, since it’s also in the signature. You never know.

Re: Stage lll now stage IV, looking for guidance

Posted: Sat Dec 11, 2021 10:31 am
by Adp0909
You’re probably right. Will update information as we get it back from this larger round of tests for clarity.

For now - we had a positive meeting with a surgeon who can resect this now but does see some benefit in a couple rounds of Folfiri/Avastin to check response of Mets before surgery so that we know it’s “working” post surgery.

Thank you again for all input on chemo tips for this round.

Re: Stage lll now stage IV, looking for guidance

Posted: Sun Jan 02, 2022 6:59 pm
by jens22
Please Have MSK ) Memorial Sloane Kettering Consult. HAI Liver Pump has been very successful for those with mets to the Liver. You can call them and they will tell you what you need to send to them.

Re: Stage lll now stage IV, looking for guidance

Posted: Mon Jan 03, 2022 8:02 pm
by Adp0909
Thank you jens22. Based on the several comments here suggesting the same thing I did call. They are unfortunately only doing consults in person so we are thinking through that given I am 8 weeks from my due date and DH doesn’t really want to travel by air during this Covid surge and on his own. I did however find two cancer centers that offer HAI pump in CA so I have reached out to ensure that we should continue down the path of resection this month with continued systemic treatment vs. the addition of the pump. Assuming it’s still recommended even if you’ve had successful resection?

Thanks again!