Looking for opinions or advice I guess.. (maybe just support)

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Monimom
Posts: 35
Joined: Wed Jan 08, 2020 6:15 pm

Looking for opinions or advice I guess.. (maybe just support)

Postby Monimom » Wed Jan 08, 2020 7:18 pm

My 56 y.o husband and I went to urgent care for a backache he had that wasn't going away, he does construction so we assumed it was work related, we left urgent care several hours later with the worst news, colonic mass with multiple liver lesions seen on CT scan
He was later sent for a PET scan that confirmed and then a liver biopsy to again confirm lesions were colon …and to do genetic testing, he does not have the kras mutation so he's eligible for other treatment types (I am just learning about ALL of this so if I say something incorrect i'm unaware, sorry)
He was told by the Hem/Oc Dr. he is inoperable due to the size and amounts of the liver lesions ...both lobes are involved and aside from many small both lobes have large lesions, one being 9cm..
his colon has what they referred to as an "apple core" type mass on his sigmoid colon I don't remember if they told us a size , he's not completely restricted and is still able to have bowel movements, not like he used to , but at least he's not blocked.
They said it doesn't appear to have spread elsewhere. So the game plan is to do chemo with hopes of shrinking tumors … maybe surgery if that happens otherwise chemo for life..(he said no way)
He has had the port put in his chest, and chemo has been started, we sit for 5 hours and then he wears a pump for 2 days , then it gets removed and in 2 weeks we do it again (im sure you're all familiar)
his first treatment went well, small amount of cold sensitivity from the Oxi that didn't last, and small tiredness .. they give him Decadron & Zofran then they start the treatment
it is the Folfox regimen with Oxaliplatin / Leucovorin (5fu ??)..
His second treatment (just finished today) they added Avastin to the mix.. he's had more of a stomach ache than before , don't know if its carry over hes had it off and on for a while ..or if the Avastin is adding to it, I am aware of the side affects of possible perforated bowel from Avastin so I am staying on top of his pain level temp/ etc..
we live in a small town , larger hopitals are an hour away, but they have all these satellite offices ..if that makes a difference is left to be seen.
So … a question for you would be.... does this all sound "typical?" as far as the way this is being managed ?
also for anyone with knowledge of the administration of Avastin... I have a question about dosage and infusion for the first time...message me if you do I wont waste space or time asking in this post.
Thank you if you read my post , I look forward to hearing back
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged

AmyG
Posts: 350
Joined: Tue Dec 25, 2018 8:08 pm

Re: Looking for opinions or advice I guess.. (maybe just support)

Postby AmyG » Thu Jan 09, 2020 11:16 am

That sounds pretty typical, FOLFOX/Avastin mix for liver involvement.

For myself, I had my primary tumor removed first, then started chemo after I delivered my baby. I only had one liver met but responded wonderfully to the drugs.

Good luck with his treatment, I lost all my hair, eyebrows and lashes. Have pretty bad nerve damage in my hands and feet but I'm alive and cancer free!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Claudine
Posts: 397
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Looking for opinions or advice I guess.. (maybe just support)

Postby Claudine » Thu Jan 09, 2020 11:35 am

Welcome to the forum, it is a wonderful source of information and support! My husband just finished 18 rounds of Folfiri + Avastin (same protocol as yours, with the heavy infusion followed by 46 hours chemo pump). His situation is different (no liver involvement) but the goal was also tumor control (adrenal gland metastasis).
The main side effects of Avastin were digestive issues (really bad heart burn) and high blood pressure, so he's taking Omeprazole and blood pressure medication (I can't remember which). And since it's an anticoagulant, a little nosebleed (but not bad) - and he hasn't been able to get his teeth cleaned, but that's a pretty minor inconvenience!
Good luck to you and your husband, many folks on this forum who were inoperable at first had great responses to chemo and went on to having successful liver resections.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20


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