1st bad scanning... advice please!!

[Rock_Robster]

Hey Alex, great that you heard back from MSK! Indeed under the circumstances I think these results are both good and probably largely unsurprising.

When I got my opinion from them they were also very hesitant to say any on the HAI pump without seeing me in person, and also assessing my response to 4 cycles of FOLFOX. My doc here also wouldn’t talk about much else until I’d done 4 x FOLFOX. It seems FOLFOX is pretty standard first line in both the US and Australia, whereas FOLFIRI is more common in Europe.

I guess then the only things I’d say would be:

1. It makes sense to me to not see MSK right now, given they’d just tell him to go do FOLFOX and come back in 8 weeks for scans. However I agree with other views that you would want to get the MSK appointment booked beforehand, as you wouldn’t won’t to be off treatment too long for travel, scans, waiting for appts, etc.

2. I guess it’s just worth being aware that this is changing his treatment plan in order to get a consult with MSK. I don’t see any huge downside with this - FOLFOX is on average at least as effective as FOLFIRI, and given he hasn’t progressed on FOLFIRI there shouldn’t be anything preventing him going back to it if he maxes out on FOLFOX. My question would be the Vectibix - would this continue? FOLFOX/FOLFIRI + an EGFR inhibitor is basically gold-standard first line for a RAS-wild patient and he seems to have done well on it so far. I guess this is something your onc in Denmark would have an opinion on.

Best wishes again!
Rob

[AlexandraZ]

Hey Alex, great that you heard back from MSK! Indeed under the circumstances I think these results are both good and probably largely unsurprising.

When I got my opinion from them they were also very hesitant to say any on the HAI pump without seeing me in person, and also assessing my response to 4 cycles of FOLFOX. My doc here also wouldn’t talk about much else until I’d done 4 x FOLFOX. It seems FOLFOX is pretty standard first line in both the US and Australia, whereas FOLFIRI is more common in Europe.

I guess then the only things I’d say would be:

1. It makes sense to me to not see MSK right now, given they’d just tell him to go do FOLFOX and come back in 8 weeks for scans. However I agree with other views that you would want to get the MSK appointment booked beforehand, as you wouldn’t won’t to be off treatment too long for travel, scans, waiting for appts, etc.

2. I guess it’s just worth being aware that this is changing his treatment plan in order to get a consult with MSK. I don’t see any huge downside with this - FOLFOX is on average at least as effective as FOLFIRI, and given he hasn’t progressed on FOLFIRI there shouldn’t be anything preventing him going back to it if he maxes out on FOLFOX. My question would be the Vectibix - would this continue? FOLFOX/FOLFIRI + an EGFR inhibitor is basically gold-standard first line for a RAS-wild patient and he seems to have done well on it so far. I guess this is something your onc in Denmark would have an opinion on.

Best wishes again!
Rob

Hi Rob, good to hear from you!

1.I agree, it seems way smarter to go ahead (since we already got their recommendations for now) and go back after some FOLFOX. Then we can fly over and see them in person and see what they say without further delaying treatment.

2. Actually this doesn't change his treatment plan at all! MSK agreed with the recommendations our hospital gave. I was kind of wondering why they were putting him on second line chemo since FOLFIRI + Vectibix worked so well. I think it's because he's had a break so there's a chance it won't work as well and his cancer has had a chance to become resistant. His oncologist said that we can definitely go back to FOLFIRI later on, since as you say, he didn't progress on it. I think maybe they are switching the Vectibix out with Avastin because of his severe toxicity after 12 rounds of it, I'm not sure. Either way Jesper is thrilled to have a break from it.

His nausea was the worst side effect from FOLFIRI. I hope FOLFOX isn't as bad in that regard. I've heard mixed "reviews" from people, so we'll see what Jesper thinks!

Interesting on the HAI pump! I wonder why, seems like you'd be the perfect candidate!

[AlexandraZ]

Jesper had his first FOLFOX infusion today...so far so good! He felt a little tingling in his fingers, but so far he's feeling better than he was on FOLFIRI. His skin used to go all yellow/gray and he just looked sick. He's looking better this time. Fingers crossed FOLFOX is easier for him than FOLFIRI!

[Siti]

That’s great... I hope folfox kills all the dang cancer! Wishing Jesper a complete response!

[AlexandraZ]

That’s great... I hope folfox kills all the dang cancer! Wishing Jesper a complete response!

Thanks so much Siti! I am definitely hoping for the same!!! xxx

[AlexandraZ]

So last night Jesper started having bad stomach cramps and he had a fever, so we had to go in to the hospital. His fever kept rising (to 39.5) so they kept him overnight, and he was up all night with diarrhea and also threw up once. His CRP last night was 12 (just above the upper limit of 10) and this morning it was 30. So they started him on antibiotics. They also took a stool sample. I'm not sure why, maybe to see if he has any kind of bacteria that might require different antibiotics. I'm glad they're checking though - since he had E.coli in Mexico he's had stomach issues on and off. They put him in isolation, but apparently the hospital is overfull so we MAY be allowed to go home and be in isolation there. He's not immuno-compromised and he's on antibiotics, so I don't think they are too worried.

Is it the season or what?? I feel like several of our men have weird stomach cramps and fevers. Hope it's over soon and they feel better. (Thinking of you, Siti!)

[Siti]

Identical reaction —a couple of days after first infusion, cramps then fever, 39.8. We couldn’t bring fever down even after paracetamol and cold towels, so he was admitted to hospital at 2am. They took stool, urine and blood. The doctor on the night shift gave him antibiotics. We met our oncologist later on, they found nothing. Oncologist said antibiotics were overly precautious but anyway better be safe. Oncologist suspect it’s likely an airborne bug and thankfully not anything serious. I hope Jesper gets better soon, I feel terrible the both of you had to go through it.

[AlexandraZ]

Identical reaction —a couple of days after first infusion, cramps then fever, 39.8. We couldn’t bring fever down even after paracetamol and cold towels, so he was admitted to hospital at 2am. They took stool, urine and blood. The doctor on the night shift gave him antibiotics. We met our oncologist later on, they found nothing. Oncologist said antibiotics were overly precautious but anyway better be safe. Oncologist suspect it’s likely an airborne bug and thankfully not anything serious. I hope Jesper gets better soon, I feel terrible the both of you had to go through it.

What!! That is SO strange. Well I hope it's a bug so Jesper doesn't have to go through his with every infusion!! How is your husband now?