FOLFOX rechallengers?

[Knittygurl]

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:)

[Green Tea]

Some bone met posts

Bone mets + FOLFOX posts

[Markdale]

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

[Bianca10]

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]

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

[Markdale]

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

[Knittygurl]

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

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.