No more chemo?

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AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

No more chemo?

Postby AlexandraZ » Tue Feb 04, 2020 1:54 pm

Jesper and I went to officially get the results of his last CT scan after 4 rounds of FOLFOX + Avastin. The scan was stable, but his CEA has gone from 1300 to 2900 during these 4 rounds. So our oncologist says that though the scan was stable and we technically COULD continue, he wouldn't recommend it. Since Jesper's CEA has been such a good marker, he thinks the next scan would show progression. We aren't sure what to think. Nothing has grown during these two months so obviously it has worked to some degree, but maybe he's right and his cancer is getting chemo resistent.

So we've been referred to their clinical trials unit. We're meeting with them tomorrow. Meanwhile, I'm sending all his data to MSK and we're going to visit Dr. Vogl in Germany who does microwave ablations on liver and lung mets. It's pretty scary. Jesper is okay but I'm freaking out. He still seems so healthy and works out and looks handsome and strong. Even after 16 rounds of chemo! He has lost some weight but he's not underweight. He has no symptoms from the chemo or the cancer beyond a little shortness of breath these days.

Does anyone have any similar experiences or good stories? I could really use some reassurance and hope if any is warranted. :|
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!

Trying
Posts: 231
Joined: Sun May 13, 2018 10:11 pm

Re: No more chemo?

Postby Trying » Tue Feb 04, 2020 2:33 pm

I'm sorry you are going through this.
Wishing you the best.

Nicole
Last edited by Trying on Tue Feb 04, 2020 9:47 pm, edited 2 times in total.
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

User avatar
juliej
Posts: 3106
Joined: Thu Aug 05, 2010 12:59 pm

Re: No more chemo?

Postby juliej » Tue Feb 04, 2020 5:54 pm

Well, the increase in CEA definitely means something. But the stable scan is very interesting. He wouldn't be the first patient with an increase in CEA due to the significant death of tumor cells. I'm not saying that's what's happening. But it's worth considering, especially with the stable scan.

He doesn't have a KRAS mutation, right? What about Xeloda + Erbitux + Irinotecan biweekly? That's what Eric (BrownBagger) had and it kept him around for a long time.

On the other hand, it's really good to check with the clinical trials unit. There is some new and interesting stuff going on there.

Stay strong! Glad you are getting some second opinions!

xo,
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: No more chemo?

Postby AlexandraZ » Tue Feb 04, 2020 6:05 pm

juliej wrote:Well, the increase in CEA definitely means something. But the stable scan is very interesting. He wouldn't be the first patient with an increase in CEA due to the significant death of tumor cells. I'm not saying that's what's happening. But it's worth considering, especially with the stable scan.

He doesn't have a KRAS mutation, right? What about Xeloda + Erbitux + Irinotecan biweekly? That's what Eric (BrownBagger) had and it kept him around for a long time.

On the other hand, it's really good to check with the clinical trials unit. There is some new and interesting stuff going on there.

Stay strong! Glad you are getting some second opinions!

xo,
Juliej


Thanks Juliej! You are always a ray of sunshine on this forum, you really are. You were apparently replying to my post while I was writing you a PM! :D

I also did some research and found that especially with oxaliplatin-based regimens, CEA flares are not uncommon. But I think the CEA usually drops around 6 weeks after starting treatment, so I don't know. Our oncologist definitely seems pessimistic. He said something about the CEA reacting quicker than the scan, so he said he wouldn't be surprised to see progression after 4 more rounds of FOLFOX.

No, no KRAS mutation. Our oncologist didn't mention Xeloda even, actually. He mentioned Lonsurf but said it was impossible to get approval to get it.

I think we will see what the clinical trials unit has to offer, while moving forward with second opinions at MSK, City of Hope (specifically Dr. Fong) and Dr. Vogl in Germany. Someone is bound to have something for us, right? Fingers crossed. Luckily we have gathered a good amount of money through a gofundme, so the second opinions and first part of any treatment should be covered for 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!

Rock_Robster
Posts: 496
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: No more chemo?

Postby Rock_Robster » Tue Feb 04, 2020 7:53 pm

Hey Alex, glad you guys are both feeling well. Sorry about the CEA - hopefully indeed just a flare. I can understand the nervousness around doing another 8 weeks on the same chemo though. I haven’t heard of changing chemo based in CEA alone and with stable scans, but I can also see the onc’s point.

If I recall correctly he didn’t have progression on FOLFIRI + Vectibix(?) and had a good response to that as first line; I wonder if there’s the option to go back to that?

Cheers
Rob
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: No more chemo?

Postby AlexandraZ » Wed Feb 05, 2020 2:18 pm

Rock_Robster wrote:Hey Alex, glad you guys are both feeling well. Sorry about the CEA - hopefully indeed just a flare. I can understand the nervousness around doing another 8 weeks on the same chemo though. I haven’t heard of changing chemo based in CEA alone and with stable scans, but I can also see the onc’s point.

If I recall correctly he didn’t have progression on FOLFIRI + Vectibix(?) and had a good response to that as first line; I wonder if there’s the option to go back to that?

Cheers
Rob


Thanks Rob! Yeah it's a tricky point...he says we can go ahead if we want, but he wouldn't necessarily recommend it. Looks like we'll be taking a little break while Jesper gets a liver biopsy done for genomic sequencing in connection with clinical trials. And once I hear back from MSK we'll book flights. So we'll check out a bunch of options in a few weeks.

Three of our doctors have mentioned Lonsurf and said that they'd offer it, but it's not fully approved in Denmark yet. It's some kind of a political point - we run into these things with socialized medicine. They can apply for it but they could tell us with 99% certainty that it would be disapproved. It will be good to hear what MSK recommends. I mean, if we REALLY can't get it here, we might just pay for it. But apparently it's one of the more expensive drugs, as the patent is still valid. But we'll see what they recommend over there. You know a lot Rob - do you think ablation of the liver mets might be a good idea? We'll be driving down to Dr. Vogl in Germany who does regional chemo and ablations. I think that since Jesper's liver mets are under 2.5 cm it would be a good idea to do now, in case they start growing like they did last time we took a chemo break.
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!

Rock_Robster
Posts: 496
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: No more chemo?

Postby Rock_Robster » Wed Feb 05, 2020 10:16 pm

AlexandraZ wrote:
Rock_Robster wrote:Hey Alex, glad you guys are both feeling well. Sorry about the CEA - hopefully indeed just a flare. I can understand the nervousness around doing another 8 weeks on the same chemo though. I haven’t heard of changing chemo based in CEA alone and with stable scans, but I can also see the onc’s point.

If I recall correctly he didn’t have progression on FOLFIRI + Vectibix(?) and had a good response to that as first line; I wonder if there’s the option to go back to that?

Cheers
Rob


Thanks Rob! Yeah it's a tricky point...he says we can go ahead if we want, but he wouldn't necessarily recommend it. Looks like we'll be taking a little break while Jesper gets a liver biopsy done for genomic sequencing in connection with clinical trials. And once I hear back from MSK we'll book flights. So we'll check out a bunch of options in a few weeks.

Three of our doctors have mentioned Lonsurf and said that they'd offer it, but it's not fully approved in Denmark yet. It's some kind of a political point - we run into these things with socialized medicine. They can apply for it but they could tell us with 99% certainty that it would be disapproved. It will be good to hear what MSK recommends. I mean, if we REALLY can't get it here, we might just pay for it. But apparently it's one of the more expensive drugs, as the patent is still valid. But we'll see what they recommend over there. You know a lot Rob - do you think ablation of the liver mets might be a good idea? We'll be driving down to Dr. Vogl in Germany who does regional chemo and ablations. I think that since Jesper's liver mets are under 2.5 cm it would be a good idea to do now, in case they start growing like they did last time we took a chemo break.

Ok, great that you’ve got a plan to get back to MSK and City of Hope. Also having genomic testing done is a good idea.

I guess it’s a bit hard to pin down where he’s at in terms of options. In some ways almost everything could still be on the table - he didn’t progress on FOLFIRI, he hasn’t had radiological progression on FOLFOX, the liver might be resectable (or borderline), or ablatable. So in a way it feels premature to be discussing Lonsurf. However all of the above requires a combination of hard work and luck in a fairly tight window and of course with no guarantees, so it’s great you’re chasing all options hard now. Also investigating trials is probably good option as well, as they can take their sweet time sometimes.

I can’t comment on whether ablation would be appropriate for him as it would depend on the size, number and location of the lesions - but I would definitely be focusing on some kind of surgical intervention, and if the surgeon thinks ablation is preferable to resection for whatever reason then I’d be taking that advice. It can certainly be curative for limited metastases - or at least have significant benefit. I think 2.5cm is right on the edge for some forms of ablation, but again it would depend on the location and method they’re proposing. My last lesion was only 14mm but right next to a large vein, so the surgeon recommended a wedge resection instead of ablation. I assume MSK is also considering HAI, if further shrinkage is needed first.

Good luck,
Rob
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

stu
Posts: 1345
Joined: Sat Aug 17, 2013 5:46 pm

Re: No more chemo?

Postby stu » Thu Feb 06, 2020 2:48 am

Hi ,
My mum’s oncologists have always only worked from the scan results and never from CEA in isolation . My mum’s CEA always rose after two cycles and stayed that way for the full six cycles each year . It did not drop until well after chemo stopped . I would be keeping a close eye on his CEA to see if it drops over the next few weeks . My mum had significant shrinkage which maybe was easier to read than stable but it would cause me concern that the stable result was hiding behind the CEA results .

Anyway you are doing the right thing and seeking out windows of opportunity . My mum has had her CEA checked every month for ten years . I would get them to keep a close eye on it off chemo .
All the best ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Siti
Posts: 150
Joined: Thu Aug 01, 2019 10:58 am

Re: No more chemo?

Postby Siti » Thu Feb 06, 2020 9:36 pm

I don’t have experience to give you any valuable insights but I think you’re doing the right thing to get second opinions (well done on raising funds for Jesper!). From what I gathered in your past posts, you’re not too pleased with the pessimistic approach of your doctors so I think it’s really time to move to another cancer Center.
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: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: No more chemo?

Postby AlexandraZ » Fri Feb 07, 2020 12:03 pm

stu wrote:Hi ,
My mum’s oncologists have always only worked from the scan results and never from CEA in isolation . My mum’s CEA always rose after two cycles and stayed that way for the full six cycles each year . It did not drop until well after chemo stopped . I would be keeping a close eye on his CEA to see if it drops over the next few weeks . My mum had significant shrinkage which maybe was easier to read than stable but it would cause me concern that the stable result was hiding behind the CEA results .

Anyway you are doing the right thing and seeking out windows of opportunity . My mum has had her CEA checked every month for ten years . I would get them to keep a close eye on it off chemo .
All the best ,
Stu


Interesting Stu, thank you so much for responding. If I recall correctly, your mum didn't have her resection until two years after diagnosis, right? That's very hopeful - I like hearing about people who aren't resectable right away, but then having options open up later.

We're waiting for MSK's response and meanwhile we are checking out some different doctors in Israel and Germany. I think Jesper will be back on chemo in 3 weeks latest. We had another meeting with his oncologist today, who said that we can still do more FOLFOX or FOLFIRI and we'll take what MSK recommends into account with his next treatment.

Thanks again,
Alex
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: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: No more chemo?

Postby AlexandraZ » Fri Feb 07, 2020 12:03 pm

Siti wrote:I don’t have experience to give you any valuable insights but I think you’re doing the right thing to get second opinions (well done on raising funds for Jesper!). From what I gathered in your past posts, you’re not too pleased with the pessimistic approach of your doctors so I think it’s really time to move to another cancer Center.


You're so right Siti - we should have done this long ago. It's difficult to plan a lot of things while on chemo, but now is the time for sure. Thanks!
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: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: No more chemo?

Postby AlexandraZ » Fri Feb 07, 2020 12:11 pm

Thanks for your responses everyone, I really appreciate it.

We went to see his oncologist today and we agreed that Jesper will have a liver biopsy done soon, and we will explore our options with MSK, Dr. Vogl, etc. Then we'll meet again in the beginning of March to coordinate future treatment. The hospital here can give more FOLFOX or FOLFIRI but our oncologist is also curious to hear what MSK recommends. Jesper and I like the idea of ablation, as it seems a bit more permanent than chemo. If we can kill some of the bigger mets that would be helpful! To buy us more time to deal with the rest. :shock:

We also got more data about his scan. We had asked to get a more specific number of mets. In his liver there are 10-20 of different sizes, the biggest around 2.5 cm (down from 5-6cm). His lungs are a lot worse....they estimate about one thousand mets :shock: :shock: :shock: I don't know what to make of that. I guess we have to take one step at a time and see what we can do. Crazy how some people get massive primary tumors in their colon which leads them to being diagnosed at an earlier stage, and then there's people like Jesper, who have over a THOUSAND mets before anyone thinks anything is wrong...

The positive thing is that chemo was able to arrest the cancer and even reverse it, even when it was so advanced. Dr. Vogl wrote me that Jesper's crazy high CEA is probably because of the lung mets (he said high CEA often comes from lung mets, but I don't know if that's a true datum - seems like something he has often observed as being the case). I guess 70,000 makes sense if you have so many mets.

Dr. Vogl does local chemo on both lungs and liver. I don't know how that works, but we're driving down to him on the 17th to see him and get his opinion and proposed treatment plan.
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!

Claudine
Posts: 352
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: No more chemo?

Postby Claudine » Fri Feb 07, 2020 2:04 pm

Seems like you are being really proactive and have a plan in place, that's great! I'll be very interested to hear what you learn about local chemo for lung mets. My husband's seem to be under control, but he too had many (tiny) and I'm nervous they'll start growing again someday.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: No more chemo?

Postby AlexandraZ » Fri Feb 07, 2020 5:14 pm

Claudine wrote:Seems like you are being really proactive and have a plan in place, that's great! I'll be very interested to hear what you learn about local chemo for lung mets. My husband's seem to be under control, but he too had many (tiny) and I'm nervous they'll start growing again someday.


Thanks Claudine! I will definitely share what we learn in Germany. We are lucky to be close to Germany so we can drive to Frankfurt in about 7 hours. Hoping for good options there!
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!

User avatar
juliej
Posts: 3106
Joined: Thu Aug 05, 2010 12:59 pm

Re: No more chemo?

Postby juliej » Fri Feb 07, 2020 6:09 pm

AlexandraZ wrote: Dr. Vogl wrote me that Jesper's crazy high CEA is probably because of the lung mets (he said high CEA often comes from lung mets, but I don't know if that's a true datum - seems like something he has often observed as being the case). I guess 70,000 makes sense if you have so many mets.

I think there's some truth to this. All those lung mets are probably pumping up his CEA, especially since the liver mets are shrinking.

I also agree that it's a very positive sign that chemo has arrested tumor growth in the liver and even reduced it quite a bit. Those lungs mets are problematic though. However, implanting an HAI pump is not a big surgery. If they could slip one in and then immediately put him back on systemic chemo, it would at least be killing the liver mets.

I had mets in every lobe of my liver. Fortunately, they can do wedge-slices and remove them even when there's a large number, as long as they aren't in a difficult location. Sometimes, even with difficult locations, they can just remove a big section of the liver and it simply grows back (the only organ we have that does so!).

But those lungs.... I fear they will ultimately need laser surgery - unless he is responsive to one of the new immunotherapies. Have you talk to anyone about (CAR) T cell therapy? City of Hope is very experienced in that field. (CAR) T cell therapy involves manipulation of a patient's autologous T cells to specifically hone in on a designated tumor-associated antigen (like little custom-made killer drones attacking his particular cancer!). You might ask about it when you have your consultation at City of Hope.

So, ask Dr. Vogl about laser surgery on the lungs. Ask Dr.Fong about (CAR)T cell therapy. Ask MSK about HAI pump. Ask everyone about immunotherapy trials.

Stay strong. Be perisistent and keep asking questions. Stage 4's like Jesper and me aren't an easy fix. It takes someone willing to think outside the box. Let us know what you find out from the consultations!

xoxo,
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1


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