FOLFOX rechallengers?

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Knittygurl
Posts: 3
Joined: Wed Apr 14, 2021 2:42 pm

FOLFOX rechallengers?

Postby Knittygurl » Sat Aug 31, 2024 5:12 pm

Long time lurker, sometime poster here. I’ve gotten so much good info here and really appreciate the community even though I haven’t been a great participant. Long story short ( I believe my signature has more dets), husband diagnosed with RC over 6 years ago, stage 4 about 3.5 years ago. All things considered, he has done well. His lung Mets have been fairly stable this whole time and we were actually going to get some ablation done this month when a PET scan (done before ablation) showed a few bone and spine Mets. It was a gut punch since we’ve been living with stable lung mets for awhile. Oncologist took DH off of folfiri and gave us the option of trying FOLFOX again. He had this as “mop up” chemo after LAR surgery when he had no metastasis and handled it ok.

My question is, has anyone rechallenged with FOLFOX with new Mets? Is it worth it? Is it that different from Folfiri and Xeloda? I feel like he has been on the 5FU regimen forever and wonder if he’s going through a tough chemo with no benefit.

My understanding is that bone Mets are a whole different beast and that prognosis is poor. It’s hard to wrap my head around since we are both working full time and leading relatively high quality lives…. besides a little shoulder pain that he is getting radiation for this week. Do bone Mets explode once you get them? Seems like we’ve been lucky with slow growing lung thingies.

Any insights appreciated:)
my DH diagnosed 11/18 stage 1 RC, 51yo
KRAS, Q61, MSS
5-6 rounds radiation
LAR surgery 5/19
8 rounds mop up FOLFOX
NED almost 2 years, lung Mets 3/21
Xeloda 2 years
Clinical trial, fail
Folfiri + Avastin… 4 rounds???
Summer chemo break and then bone Mets 8/24
8/24 FOLFOX again

User avatar
Green Tea
Posts: 545
Joined: Mon Oct 24, 2016 10:48 am

Re: FOLFOX rechallengers?

Postby Green Tea » Sun Sep 01, 2024 10:07 pm


Markdale
Posts: 117
Joined: Wed Dec 02, 2020 4:45 pm

Re: FOLFOX rechallengers?

Postby Markdale » Tue Sep 03, 2024 8:32 am

I’ve got a bone met in the acromion/scapula spine on my right shoulder. I read that bone Mets are a poor prognostic factor. I had radiation to the area the area twice the 1st time the pain went away but came back within 3 months. I got a second lot of radiation which fixed the pain again but now I’m doing folfiri to try to help reduce it and deal with the other Mets too.
I think I had the bone met for about a year before a pet scan picked it up, then in the last few months I’ve had quite a few Mets pop up in different locations . I think doing folfox for a few months is worth doing until the next scan, Bone Mets can become very painful. If I didn’t have the bone met I’m not sure if I would go back on the chemo
09/20:Diagnosed colonoscopy
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed
3/24 radiation to acromion bone met + chest lymph nodex
8/24 new pet positive lesions in lung and neck lymph nodes. Begin Folfiri.

Bianca10
Posts: 131
Joined: Thu Jun 29, 2023 4:46 pm

Re: FOLFOX rechallengers?

Postby Bianca10 » Tue Sep 03, 2024 8:53 am

Markdale wrote:I’ve got a bone met in the acromion/scapula spine on my right shoulder. I read that bone Mets are a poor prognostic factor. I had radiation to the area the area twice the 1st time the pain went away but came back within 3 months. I got a second lot of radiation which fixed the pain again but now I’m doing folfiri to try to help reduce it and deal with the other Mets too.
I think I had the bone met for about a year before a pet scan picked it up, then in the last few months I’ve had quite a few Mets pop up in different locations . I think doing folfox for a few months is worth doing until the next scan, Bone Mets can become very painful. If I didn’t have the bone met I’m not sure if I would go back on the chemo


Hey mark, did you also have radio to chest lymph
Nodes, were there quite a few? Just trying to gauge how much to advocate for us if radio is an option for multiple nets such as distant lymph nodes and bone mets.
Hope you’re doing as ok as can be!

claudine
Posts: 822
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: FOLFOX rechallengers?

Postby claudine » Tue Sep 03, 2024 4:47 pm

Hi Knitty gurl,
My husband has had bone mets (lumbar spine) since the beginning over 6 years ago (that's how he was diagnosed, extreme back pain). He's had a lot of radiation, which unfortunately has resulted in loss of nerve function to his quadriceps, but he's still here, quality of life ok; things have been stable in his back for the past couple of years (he's been on maintenance Xeloda since January).
How many spine mets does your husband have? If few, he may be a candidate for radiation such as SBRT. I would recommend it, especially once (more than once and it can lead to spinal nerve degeneration, as has happened to my husband - but it's not like we had a lot of choice). Spinal mets aren't great, because of course you can't resect a vertebrae like you can liver, but they do not mean the end of the road either! When I first read about them I panicked, yet here we are, still enjoying life together 6 years later :D
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

Markdale
Posts: 117
Joined: Wed Dec 02, 2020 4:45 pm

Re: FOLFOX rechallengers?

Postby Markdale » Tue Sep 03, 2024 8:43 pm

Bianca10 wrote:
Markdale wrote:I’ve got a bone met in the acromion/scapula spine on my right shoulder. I read that bone Mets are a poor prognostic factor. I had radiation to the area the area twice the 1st time the pain went away but came back within 3 months. I got a second lot of radiation which fixed the pain again but now I’m doing folfiri to try to help reduce it and deal with the other Mets too.
I think I had the bone met for about a year before a pet scan picked it up, then in the last few months I’ve had quite a few Mets pop up in different locations . I think doing folfox for a few months is worth doing until the next scan, Bone Mets can become very painful. If I didn’t have the bone met I’m not sure if I would go back on the chemo


Hey mark, did you also have radio to chest lymph
Nodes, were there quite a few? Just trying to gauge how much to advocate for us if radio is an option for multiple nets such as distant lymph nodes and bone mets.
Hope you’re doing as ok as can be!


Hi Bianca, I had radiation to 2 Mets in the lung, then got 6 Mets cut out, then about 3 months after the surgery had radiation to 2 chest lymph node

Mark
09/20:Diagnosed colonoscopy
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed
3/24 radiation to acromion bone met + chest lymph nodex
8/24 new pet positive lesions in lung and neck lymph nodes. Begin Folfiri.

Knittygurl
Posts: 3
Joined: Wed Apr 14, 2021 2:42 pm

Re: FOLFOX rechallengers?

Postby Knittygurl » Wed Sep 04, 2024 3:32 pm

claudine wrote:Hi Knitty gurl,
My husband has had bone mets (lumbar spine) since the beginning over 6 years ago (that's how he was diagnosed, extreme back pain). He's had a lot of radiation, which unfortunately has resulted in loss of nerve function to his quadriceps, but he's still here, quality of life ok; things have been stable in his back for the past couple of years (he's been on maintenance Xeloda since January).
How many spine mets does your husband have? If few, he may be a candidate for radiation such as SBRT. I would recommend it, especially once (more than once and it can lead to spinal nerve degeneration, as has happened to my husband - but it's not like we had a lot of choice). Spinal mets aren't great, because of course you can't resect a vertebrae like you can liver, but they do not mean the end of the road either! When I first read about them I panicked, yet here we are, still enjoying life together 6 years later :D




Thanks Claudine for encouragement- 6 years- wow!! He is having SBRT right now for shoulder pain. I’m not sure if they will be monitoring his bone mets…? Sounds like, have a pain ? Get a zap. The mets didn’t show up on any CT and I can’t imagine them doing a pet scan every 3 months.


I’ve heard RFA is also a good strategy for bone mets and less destructive, but we have yet to find anyone that does that around us (in NOVA).

Does anyone have an orthopedic oncologist? Is that a helpful person?

TIA everyone. I appreciate all the wisdom.
my DH diagnosed 11/18 stage 1 RC, 51yo
KRAS, Q61, MSS
5-6 rounds radiation
LAR surgery 5/19
8 rounds mop up FOLFOX
NED almost 2 years, lung Mets 3/21
Xeloda 2 years
Clinical trial, fail
Folfiri + Avastin… 4 rounds???
Summer chemo break and then bone Mets 8/24
8/24 FOLFOX again


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