1st bad scanning... advice please!!

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Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: 1st bad scanning... advice please!!

Postby Rock_Robster » Fri Nov 22, 2019 11:04 pm

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
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

AlexandraZ
Posts: 109
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Sat Nov 23, 2019 9:48 am

Rock_Robster wrote: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. :mrgreen:

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!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

AlexandraZ
Posts: 109
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Mon Nov 25, 2019 10:49 am

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!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Siti
Posts: 105
Joined: Thu Aug 01, 2019 10:58 am

Re: 1st bad scanning... advice please!!

Postby Siti » Mon Nov 25, 2019 11:21 am

That’s great... I hope folfox kills all the dang cancer! Wishing Jesper a complete response!
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

AlexandraZ
Posts: 109
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Mon Nov 25, 2019 6:24 pm

Siti wrote: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
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

AlexandraZ
Posts: 109
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Fri Nov 29, 2019 6:22 am

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!)
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Siti
Posts: 105
Joined: Thu Aug 01, 2019 10:58 am

Re: 1st bad scanning... advice please!!

Postby Siti » Fri Nov 29, 2019 8:28 am

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.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

AlexandraZ
Posts: 109
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Fri Nov 29, 2019 11:32 am

Siti wrote: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?
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!


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