Can I get some comparison for my sanity?

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Joined: Wed Jan 08, 2020 6:15 pm

Can I get some comparison for my sanity?

Postby Monimom » Tue Jul 28, 2020 9:02 am

Hi again,

I am just looking for comparison, and opinion from more seasoned chemo patients here, as I have posted previously my Hub has had now I believe 16 treatments , the majority was the standard 5FU, Avastin & Oxaliplatin... but after so many Oxali tx's he has neuropathy, so no more of that. he's been getting infusions every other week, of the 5FU and Avastin only for 4-5 of the last visits. his cancer has very minimal shrinkage, but because hes handling it well Onc wants to continue , he is on maintenance/ palliative according to Onc. I have asked if he is on maintenance why so much treatment, and can't he have lower dose? My fear is the cumulative effects are going to catch up, she said that he must continue this or cancer will begin to grow, and no lower dose... so .. we discussed switching to Xeloda so he can attempt to be employed, going to Dr every other week and disconnect three days later do not agree with employment.. he is trying to find a new job, and is NOT telling his employer of his diagnosis.

So, my question is, what is the deal with chemo? I mean whats the difference between maintenance and regular chemo treatments ? it sounds as though he's getting "reguar" (aggressive?) treatments but shes calling it maintenance... (sorry im feeling bitter about all of this today)

also, how rough is xeloda? she said its harder on people... any advice on that ??? how do they administer the Avastin with that ? (we will be finding out next appt)

We have not "shopped" around for dr.'s we have just stuck with this one, I still want to contact Dr. Kemeni but the fact we are facing uncertainty about our insurance has been a road block mentally,

We praise God he is doing so well, he feels great, he looks good, his labs are not "alarming" ... I have a fear of rocking the boat.......

Thanks for your time & any input you have

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

Posts: 341
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Can I get some comparison for my sanity?

Postby Rikimaroo » Tue Jul 28, 2020 10:38 am

Hi Moni,

I am currently doing FOLFIRI, I did FOLFOX at the beginning of my journey about 12 rounds. My neuropathy has cleared up in my hands, but I get it in my feet and shin still, usually during bedtime. I feel numb or tingly. My Doctor's plan is to do FOLFIRI for 4-6 rounds (I have my 4th round tomorrow) to beat up the cancer as much as possible and lower my CEA as low as possible. This is not maintenance chemo, this is hard core kick your ass chemo. Just like FOLFOX, FOLFIRI is tough, albeit both have different side effects. I have more nausea, hair loss with FOLFIRI, FOLFOX I had cold sensitivity, first bite syndrome (jaw pain on first bite) and neuropathy, never nauseous or lost hair, maybe thinning of hair.

Maintenance chemo is basically simpler and less to no side effects. Xeloda is not harder at all, I did it and the only side effect I had was my hands and feet got darker, Hyper Pigmentation its called. I am brown so I don't know how it affects someone that is White. Along with Xeloda you would get Avastin at the infusion center, which is 30 minutes and your done. Avastin has really no side affect other then maybe feeling a little dizzy after infusion but goes away quickly.

I hope this helps. Glad your husband is well and everything is good so far. FOLFOX does suck so does FOLFIRI.

All the Best,
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.

Posts: 109
Joined: Sun Jan 12, 2020 8:46 pm

Re: Can I get some comparison for my sanity?

Postby roadrunner » Tue Jul 28, 2020 11:05 am

I have done a lot of both FOLFOX and Xeloda, and Xeloda was basically like a chemo break in comparison. FOLFOX is much tougher. That said, everyone is different, and Xeloda is still a serious drug. I cannot comment on the likely efficacy of Xeloda vs. the harder core treatments.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

Posts: 59
Joined: Fri Oct 04, 2019 11:32 am

Re: Can I get some comparison for my sanity?

Postby rachelfromnyc » Tue Jul 28, 2020 12:58 pm

Hi Monimom,

My treatments are also palliative in nature so sharing with you my experience. My doctor hasn't referred to it as "maintenance" but the idea is to stretch out the amount of time that the chemo is working and as long as disease is stable/not growing or tumors are shrinking, she'll keep the same treatment. I started out with six rounds of Folfox at full dose with zero problems but after a CT scan, two new tumors in the liver showed up. At that point, I switched to Folrifi and Avastin and have been on it since October of last year. The effects are definitely cumulative as the toxicities build up and although it seems I have the nausea/vomitting under control for now, I just can't shake the fatigue and general feeling of being off. For example, I disconnected from my 25th overall treatment on Sunday and am just starting to feel better today. I've had three dose reductions while on Folfiri which my doctor and I agreed on when the side effects were becoming too difficult.

Last thing is I'm very sorry about your insurance situation. But I think it's important to get at minimum, a consult. I do this myself. I tend to consult another oncologist (and in one case, a third oncologist) after scans to check the treatment plan I'm being prescribed. Hope this helps and good luck to you!

Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

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