No more chemo?

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

Re: No more chemo?

Postby AlexandraZ » Sat Feb 22, 2020 2:52 pm

Claudine wrote:And yes my husband was one for whom oxaliplatin didn’t work (as xelox not folfox) but who responded very well to Folfiri. He’s on chemo break now to recover from surgery but his onc will get him back on Folfiri if his CEA value is high when he gets checked mid March so I’d think it could be started again for Jesper!


Thanks Claudine! Dr Vogl wanted to do TACE (regional chemo embolization) but Jesper had a bad feeling about it/him and didn't want to go forward with it. He says maybe later on, but he'd prefer to do systemic chemo right now. I understand him, and of course it's his body so it's his decision either way. The doctors here aren't saying they won't give him FOLFIRI but they are 99% sure it won't work, which is so strange to me based on all the other people I'm following on this forum and other places. FOLFOX and FOLFIRI are not the same thing and I've seen so many who progressed on FOLFOX respond great to FOLFIRI. And Jesper didn't even progress on FOLFOX, he just had a rising CEA but a stable scan. So I don't understand where all the dark doom and gloom is coming from.

It looks like we'll be going to a clinic in the south of Germany for treatment either way though. It's an integrative oncology clinic that does regular chemo combined with hyperthermia (full-body and regional), ozone therapy and a bunch of other things. We know some people who had good success there, and desperate times call for desperate measures, right? Of course it's expensive, but we're willing to give anything a shot at this point. Also, because of the gofundme, we do have the funds for it. We were talking about it, and it seems silly to "save the money for later" because what if it's too late then?
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!

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

Re: No more chemo?

Postby stu » Sun Feb 23, 2020 4:15 am

It’s all very confusing at times . You hear people getting told absolutes from their oncologists yet you sit at home with a relative that defied some of that information. It really is a difficult system to navigate .
If Jesper feels more draw to a particular approach which involves the systemic chemo , you have the funding up front and wise enough to know where to draw the line and not get taken advantage off . Then I would lean in that direction too .
I was gently trying to get you to explore Pete ‘s journey as although he undoubtedly had lots of wins along the way my heart often broke at the price tag he was paying . Not sure if the science always backed it up but in many ways he felt the benefit . Who am I to say !!
I wish him every success .
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 .

Rock_Robster
Posts: 497
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: No more chemo?

Postby Rock_Robster » Sun Feb 23, 2020 6:08 am

Hey Alex,

Sorry to hear about the latest mood there. If it’s any consolation, that’s almost exactly the attitude I experienced too as a stage IV patient in a European public health system. I know it’s hard not to let it get you down, but just hang onto the fact that he’s currently fit and well, and has a lot of strength to keep up this fight on multiple fronts.

Just so I understand, I think it sounds like your options (broadly) are as below. Does this look right?

1. A FOLFOX or FOLFIRI rechallenge. If I recall correctly he didn’t progress on FOLFIRI, but stopped for a chemo break and to go get opinions in the US. So it could still be an effective treatment for him. Similarly FOLFOX didn’t have radiological progression, but the increasing CEA was a concern.

2. Organ targeted treatment. The most promising here sounds like HAI, perhaps with something else for the lungs (TACE?). I don’t know how MSK feel about doing HAI with the degree of lung mets at present, but I guess you’re working to find that out. HAI is usually given along with systemic chemo (FOLFIRI, I believe), so this in effect picks up #1 above as well.

3. Assuming chemoresistance to FOLFOX/IRI as the oncologist is suggesting, and move to next line of chemo. Here this would normally be Stivarga (regorafenib) or Lonsurf, although I understand the results on average are not as impressive as the first/second line chemos (though some people seem to do well on them).

4. Pursue clinical trials - which given his current presentation the preference may be for an immunotherapy trial? This could involve combining a PD-1 inhibitor (like Keytruda or Opdivo) with another drug (such as regorafenib, pixatimod, etc.) to try to elicit a systemic immune response against an MSS tumour; or possibly one of the more novel approaches like CAR-T or TIL. I suspect this might mean looking abroad again; I know the NIH in DC does take international patients for some trials.

Given the current uncertainties, you may need to work a few of these in parallel. I guess the ideal now would be a combination of #1 and #2, for which you’re waiting to hear back from MSK on. #4 is something you might want to work yourselves at the same time. In the short term, I would personally be preferring to continue one of the chemos that has worked (ie #1) before progressing to #3, but I guess that’s a personal choice.

Good luck,
Rob
Last edited by Rock_Robster on Sun Feb 23, 2020 6:42 am, edited 2 times in total.
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!

brokenwings
Posts: 113
Joined: Mon Jan 07, 2019 1:50 am

Re: No more chemo?

Postby brokenwings » Sun Feb 23, 2020 6:32 am

I would stay away from the alternative German clinics. You've heard positive stories, I've read many sad ending stories.

I agree with Rob, if your boyfriend didn't fail Folfiri it'd be a good idea to try that again.

As I've told you before, you're very lucky to have a TIL trial in your own country.

Another interesting trial is "RO688", there's plenty of information about it in the Facebook MSS Trials group.

Good luck.
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) 04/29: not optimally resectable, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
10/31/2019: Hipec + 6 weeks in hospital
12/30/2019: 27mm liver met

rachelfromnyc
Posts: 33
Joined: Fri Oct 04, 2019 11:32 am

Re: No more chemo?

Postby rachelfromnyc » Mon Feb 24, 2020 1:18 pm

Hi Alexandra,

I know the scan results weren't exactly what you were looking for but a stable scan is a good scan. I started off with FOLFOX and had disease progression so was switched to FOLFIRI. I am having more issues now with side effects so my conversations with my oncologist revolve around managing side effects, dosage, breaks etc. She said that an option is to remove the irinotecan (which is the cause of the bothersome side effects) and have it be reintroduced when disease progresses. Also, that not only is it a way to give me a break from the toxicities but it is also a strategy maximize the overall length of time that FOLFIRI is effective. So in applying that to Jesper's case, because he has been off FOLFIRI for some time, why not re introduce it? Additionally, my oncologist doesn't look at CEA in isolation and actually gives more weight to the scan results. Hope this helps a bit.

Rachel
37 at dx May '19, one month after my bday
5/19: 3.4 cm mass in transverse colon, enlarged distant lymph nodes, innumerable lung nodules; CEA 13.2 ng/mL
5/19: FNA of supraclavicular lymph nodes positive for disease
6/19 to 9/19: 6 cycles of FOLFOX; CEA 3.9 ng/mL
7/19: CEA 4.3 ng/ml
10/19: CT scan shows primary tumor stable, lymph nodes shrinking and disease progression in liver; CEA 4.8 ng/mL
10/19: Start FOLFIRI with Avastin, planned 6 rounds

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

Re: No more chemo?

Postby AlexandraZ » Tue Feb 25, 2020 2:24 pm

rachelfromnyc wrote:Hi Alexandra,

I know the scan results weren't exactly what you were looking for but a stable scan is a good scan. I started off with FOLFOX and had disease progression so was switched to FOLFIRI. I am having more issues now with side effects so my conversations with my oncologist revolve around managing side effects, dosage, breaks etc. She said that an option is to remove the irinotecan (which is the cause of the bothersome side effects) and have it be reintroduced when disease progresses. Also, that not only is it a way to give me a break from the toxicities but it is also a strategy maximize the overall length of time that FOLFIRI is effective. So in applying that to Jesper's case, because he has been off FOLFIRI for some time, why not re introduce it? Additionally, my oncologist doesn't look at CEA in isolation and actually gives more weight to the scan results. Hope this helps a bit.

Rachel


Thanks Rachel, and good to hear from you! That's what I thought too - a stable scan is a good scan. I was so surprised when the doctors here basically told Jesper to get his affairs in order. Without any actual progression on ANY chemo! Sorry to hear about your side effects. Jesper definitely had a harder time on FOLFIRI too.
We FINALLY got an answer from MSK! Jesper is approved for an on-site appointment. Now we just need to figure out how to fit it in time-wise. I feel like he's been off chemo long enough! I'd rather give him a bit of FOLFIRI and then do the second opinion during a chemo break. I'll definitely let you know so we can meet up while we're 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!

Claudine
Posts: 356
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: No more chemo?

Postby Claudine » Tue Feb 25, 2020 3:54 pm

We FINALLY got an answer from MSK! Jesper is approved for an on-site appointment. Now we just need to figure out how to fit it in time-wise. I feel like he's been off chemo long enough! I'd rather give him a bit of FOLFIRI and then do the second opinion during a chemo break.


Yay! I bet you're glad to finally have the green light to travel to MSK. I'm not sure what schedule Jesper will be on with Folfiri but if it's anything like my husband, he would get infusions every 14 days with a chemo pump for 46 hours; count a couple of days to recover after removing the pump and that leaves about 10 days to travel - so you could visit MSK between two infusions. That's what my husband did repeatedly last year (for work). So you may not need to wait for a chemo break "per se".
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 » Tue Feb 25, 2020 3:58 pm

Claudine wrote:
We FINALLY got an answer from MSK! Jesper is approved for an on-site appointment. Now we just need to figure out how to fit it in time-wise. I feel like he's been off chemo long enough! I'd rather give him a bit of FOLFIRI and then do the second opinion during a chemo break.


Yay! I bet you're glad to finally have the green light to travel to MSK. I'm not sure what schedule Jesper will be on with Folfiri but if it's anything like my husband, he would get infusions every 14 days with a chemo pump for 46 hours; count a couple of days to recover after removing the pump and that leaves about 10 days to travel - so you could visit MSK between two infusions. That's what my husband did repeatedly last year (for work). So you may not need to wait for a chemo break "per se".


Oh sorry, yes that's what I meant! I just meant in between two infusions. Jesper gets chest cramps (probably from his lung mets) so it takes him a few extra days to recover. But I still think it could be doable!
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 » Wed Feb 26, 2020 11:18 am

Rock_Robster wrote:Hey Alex,

Sorry to hear about the latest mood there. If it’s any consolation, that’s almost exactly the attitude I experienced too as a stage IV patient in a European public health system. I know it’s hard not to let it get you down, but just hang onto the fact that he’s currently fit and well, and has a lot of strength to keep up this fight on multiple fronts.

Just so I understand, I think it sounds like your options (broadly) are as below. Does this look right?

1. A FOLFOX or FOLFIRI rechallenge. If I recall correctly he didn’t progress on FOLFIRI, but stopped for a chemo break and to go get opinions in the US. So it could still be an effective treatment for him. Similarly FOLFOX didn’t have radiological progression, but the increasing CEA was a concern.

2. Organ targeted treatment. The most promising here sounds like HAI, perhaps with something else for the lungs (TACE?). I don’t know how MSK feel about doing HAI with the degree of lung mets at present, but I guess you’re working to find that out. HAI is usually given along with systemic chemo (FOLFIRI, I believe), so this in effect picks up #1 above as well.

3. Assuming chemoresistance to FOLFOX/IRI as the oncologist is suggesting, and move to next line of chemo. Here this would normally be Stivarga (regorafenib) or Lonsurf, although I understand the results on average are not as impressive as the first/second line chemos (though some people seem to do well on them).

4. Pursue clinical trials - which given his current presentation the preference may be for an immunotherapy trial? This could involve combining a PD-1 inhibitor (like Keytruda or Opdivo) with another drug (such as regorafenib, pixatimod, etc.) to try to elicit a systemic immune response against an MSS tumour; or possibly one of the more novel approaches like CAR-T or TIL. I suspect this might mean looking abroad again; I know the NIH in DC does take international patients for some trials.

Given the current uncertainties, you may need to work a few of these in parallel. I guess the ideal now would be a combination of #1 and #2, for which you’re waiting to hear back from MSK on. #4 is something you might want to work yourselves at the same time. In the short term, I would personally be preferring to continue one of the chemos that has worked (ie #1) before progressing to #3, but I guess that’s a personal choice.

Good luck,
Rob


Thank you Rob!

Yeah the general tone here is so depressing. Frustrating since I really think the patient's mental state is SO important. Jesper could've easily given up by now and been declining, but he's as optimistic as ever and still goes to the gym almost every day and makes sure to eat healthily and take care of himself. But I imagine most people would have been quite depressed by the tone of our doctors. I agree with your points. I don't think they would give him an HAI pump at this point, due to the number of lung mets. I think it would be more likely after some FOLFIRI, once his lungs are stable again.

Stivarga and Lonsurf are not available here, unfortunately. That's the problem with socialized medicine - the approved, conventional treatments are free, but anything slightly out of the ordinary you have to pay full price for and it's hard to get your hands on. Our oncologist wants to give Jesper Lonsurf and has applied for it, but he says it has never been approved before. (Some council has to review his case and approve it, due to the high cost) Denmark is apparently the only country in Europe where it's not approved as third line chemo.

So it seems like FOLFIRI is the best option at the moment. (As well as possibly TACE, but Jesper wants to do systemic first).

I'm looking into clinical trials at the moment but it's a whole new world to get into. Looking at Regonivo trials but the results don't seem suuuuper promising so far. Jesper is scheduled for a liver biopsy on Friday and once we have the results we'll know more - things such as tumor mutational burden and HER2 expression may be significant.

Thanks for taking the time to advise me so thoroughly! I really appreciate it, and I totally agree with more FOLFIRI. I don't see why we should assume it won't work after it did such a great job last time.

Oh also! We did hear back from MSK finally. So we just need to figure out how to fit it in time-wise. I want to get him started on something, since he's been off treatment for almost a month and it's stressing me out!! But I'll be happy to hear their input and any clinical trials that they may offer. Honestly if something sounds great we may just relocate for a while. We have lots of friends in the NY area and I can work from anywhere.
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!

rachelfromnyc
Posts: 33
Joined: Fri Oct 04, 2019 11:32 am

Re: No more chemo?

Postby rachelfromnyc » Wed Feb 26, 2020 1:09 pm

We FINALLY got an answer from MSK! Jesper is approved for an on-site appointment. Now we just need to figure out how to fit it in time-wise. I feel like he's been off chemo long enough! I'd rather give him a bit of FOLFIRI and then do the second opinion during a chemo break. I'll definitely let you know so we can meet up while we're there!


That's really great about MSK! You're doing the right thing in being proactive and seeking opinions from different doctors and practioners. And yes, please keep me looped on your dates for being in New York and let's see if we can make this meet up happen :)
37 at dx May '19, one month after my bday
5/19: 3.4 cm mass in transverse colon, enlarged distant lymph nodes, innumerable lung nodules; CEA 13.2 ng/mL
5/19: FNA of supraclavicular lymph nodes positive for disease
6/19 to 9/19: 6 cycles of FOLFOX; CEA 3.9 ng/mL
7/19: CEA 4.3 ng/ml
10/19: CT scan shows primary tumor stable, lymph nodes shrinking and disease progression in liver; CEA 4.8 ng/mL
10/19: Start FOLFIRI with Avastin, planned 6 rounds

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

Re: No more chemo?

Postby AlexandraZ » Thu Mar 12, 2020 1:15 pm

A little update from us - Jesper is back on FOLFIRI and we are currently in Budapest for some oxygen treatment. (We come here once in a while - seems to at least alleviate some of his side effects). FOLFIRI definitely hits him harder than FOLFOX did. Hopefully that means it hits his cancer harder too!

The corona virus is a real nuisance here though. Aside from the health risk, it's shutting down all regular activities and life. I don't even know if we'll be able to go to the hospital next week for his next round of FOLFIRI. I don't know if we'll be allowed back in the country! (realistically, we probably will. But we'll definitely be screened for corona virus at the airport).

And just as we were planning our trip to MSK, I got an email from them saying they are not accepting International patients due to the corona virus. Such bad timing! Hopefully it blows over soon.
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: 150
Joined: Thu Aug 01, 2019 10:58 am

Re: No more chemo?

Postby Siti » Thu Mar 12, 2020 1:42 pm

I thought of you immediate when I read the news this morning about the travel ban to the US. Such terrible timing!

There’s a major panic here in the Netherlands with people stocking up after the government announced a semi lockdown this afternoon. I hope you guys are prepared for it (on top of all the other worries).
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!!

Claudine
Posts: 356
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: No more chemo?

Postby Claudine » Thu Mar 12, 2020 1:43 pm

And just as we were planning our trip to MSK, I got an email from them saying they are not accepting International patients due to the corona virus. Such bad timing! Hopefully it blows over soon.


I was thinking about you and the travel ban from Europe... Just what you needed :(
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

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

Re: No more chemo?

Postby stu » Thu Mar 12, 2020 2:38 pm

Thinking of you . It sure is new territory with this virus .
Hope you get home safely and keep chemo going till this settles .
Stay safe ,
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 .

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

Re: No more chemo?

Postby AlexandraZ » Thu Mar 12, 2020 4:24 pm

Siti wrote:I thought of you immediate when I read the news this morning about the travel ban to the US. Such terrible timing!

There’s a major panic here in the Netherlands with people stocking up after the government announced a semi lockdown this afternoon. I hope you guys are prepared for it (on top of all the other worries).


Thanks dear Siri! Yeah it's pretty wild, huh? People back home are going crazy. I don't understand the panic of young, healthy people. The only reason I am worried is that Jesper definitely shouldn't get infected, being on chemo and with 1000 tumors in his lungs :o People need to go home and enjoy the time with their families. I do appreciate the lockdown though. I'm glad everyone is staying home so the chances of Jesper getting it are that much less.
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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