Liver and lung mets

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

Liver and lung mets

Postby AlexandraZ » Fri Aug 23, 2019 10:01 am

Hi everyone,

I've been reading and following for a while and I love this forum. My boyfriend Jesper was diagnosed with stage 4 colon cancer with multiple liver and lung mets in February 2019. He is 28 years old and it was a massive shock, considering that his only symptoms had been abdominal discomfort and indigestion. He has "countless" (doctor's word, not mine) mets in both lungs, and multiple liver mets. At dx his CEA was 70.000 (not a typo! The standard test only goes up to 40.000 but we had a more sensitive test done in Hungary. None of our doctors or nurses have ever heard of a CEA that high).

Jesper has now completed 11 rounds of FOLFIRI plus Panitumumab (Vectibix) and is doing well. CEA was at 195 before his 11th treatment and he is gaining weight and looking and feeling healthy, all things considered. His response to the chemo has been good and after 8 rounds there was about a 50% reduction in tumor size but the number of tumors remained unchanged.

We live in Copenhagen, Denmark and I have noticed that the approach is less aggressive here. The primary tumor is only removed if the mets can also be removed at the same time, and thus Jesper has not been offered anything other than systemic chemo. Do any of you think we should get a second opinion in the US? We will be traveling to Florida in October to see friends and I was thinking it might be a good idea.

I see there are some survivors of similar diagnoses on here and I would sooooooo appreciate any input!! I LIVE for the good stories. Thank you 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!

Dagmar
Posts: 11
Joined: Wed Aug 07, 2019 2:02 pm

Re: Liver and lung mets

Postby Dagmar » Fri Aug 23, 2019 11:32 am

Hi Alexandra,


I live in Sweden and the doctors seems to be very much the same here. However, my local health shop owner is from Copenhagen and he worked in Humlegården. His advice would be Germany. Dr Drewes in Coswig is one doctor that does laser treatments for lung mets. Professor Vogl is another doctor that treats colon mets. I dont know much about it but hear of people going from the States and Canada for treatments in Germany. I will send my ct-scan to them if I get good results from my next treatment.

Good luck!

mariane
Posts: 676
Joined: Sun Sep 13, 2015 6:16 pm

Re: Liver and lung mets

Postby mariane » Fri Aug 23, 2019 12:01 pm

Hi!
I was diagnosed with rectal cancer with metastases to the liver (10+) in June 2015.
I am originally from Poland. With the extensive spread of my cancer I was offered only palliative therapy. I found online Dr. Kemeny from MSKCC (Memorial Sloan Kettering) in New York who is successfully treating liver mets. My husband sent my scans from Poland to MSKCC . First attempt was unsuccessful. The person who picked up the phone refused him. After a few days he tried again and a nurse ( whom I will be forever grateful) showed my scans to Dr. Kemeny. She scheduled my appointment a week later. I was lucky to respond well to chemo ( systemic and administered directly to the liver via hepatic pump) and I have been NED since my last surgery in May 2016.
The problem for you might be an insurance. However, I would still try. Dr. Kemeny is seeing patients from all over the world.
Hepatic pump is also offered in France but I don't have too much info about it. There was a patient from France a few years ago who thought about pursuing it. I also know a lady from Germany whose mom was seen by Dr. Kemeny. She is also a European crc researcher and is very up to date with all the info. I will contact her if you are willing to .

Good luck!
mom of now 10 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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

Re: Liver and lung mets

Postby Rock_Robster » Fri Aug 23, 2019 9:21 pm

Hi Alexandra,

I was initially diagnosed and protocoled in the Netherlands, which I imagine to be fairly similar. I found the care to be good but very formulaic and not super-aggressive, and if you wanted anything unusual - good luck.

I ended up moving back to Australia for treatment as this is my home country, but I used MSK’s Remote Second Opinion service to make sure I wasn’t missing a trick. Of course it doesn’t replace a F2F consultation, but gave me a lot of confidence that my local treatment approach was appropriate and that I wasn’t being short-changed here.

Note they won’t do remote surgical consultations, so if your questions are around operability then this would likely require a flight. They’re also pretty cagey about discussing HAI remotely, but they did flag I could be a candidate if I felt like getting myself to NYC (for quite a while!).

I also got online opinions from Dana-Farber and MassGen, but found these significantly inferior to MSK.

Good luck,
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

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

Re: Liver and lung mets

Postby Rock_Robster » Fri Aug 23, 2019 9:26 pm

mariane wrote:Hi!
I was diagnosed with rectal cancer with metastases to the liver (10+) in June 2015.
I am originally from Poland. With the extensive spread of my cancer I was offered only palliative therapy. I found online Dr. Kemeny from MSKCC (Memorial Sloan Kettering) in New York who is successfully treating liver mets. My husband sent my scans from Poland to MSKCC . First attempt was unsuccessful. The person who picked up the phone refused him. After a few days he tried again and a nurse ( whom I will be forever grateful) showed my scans to Dr. Kemeny. She scheduled my appointment a week later. I was lucky to respond well to chemo ( systemic and administered directly to the liver via hepatic pump) and I have been NED since my last surgery in May 2016.
The problem for you might be an insurance. However, I would still try. Dr. Kemeny is seeing patients from all over the world.
Hepatic pump is also offered in France but I don't have too much info about it. There was a patient from France a few years ago who thought about pursuing it. I also know a lady from Germany whose mom was seen by Dr. Kemeny. She is also a European crc researcher and is very up to date with all the info. I will contact her if you are willing to .

Good luck!

Hi Mariana, thanks for sharing this - really helpful. I presume you had to relocate to the US to do the HAI treatment? This is my biggest barrier at the moment - visas and costs, not to mention logistics.

Also I didn’t know of the program in France; I was aware of a trial in Rotterdam but nothing else in the EU. Will have to do some digging.

Thanks
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

mariane
Posts: 676
Joined: Sun Sep 13, 2015 6:16 pm

Re: Liver and lung mets

Postby mariane » Sun Aug 25, 2019 4:38 pm

I was lucky to have an insurance because of my husband's job.
I don't know much about the hospitals doing HAI pump in Europe. A couple of years ago I exchanged a few messages with a patient from France who was going to pursue HAI. I haven't seen him here for awhile. I need to search forum to find the thread.
mom of now 10 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

mariane
Posts: 676
Joined: Sun Sep 13, 2015 6:16 pm

Re: Liver and lung mets

Postby mariane » Sun Aug 25, 2019 4:46 pm

juliej wrote:
kspoon17 wrote:Have been receiving treatment in Lyon, France where they're planning this MSS Immunotherapy combo. My onc' mentioned this one yesterday saying that this may be an option for me. Will let you guys know.

Kilian, yes, please let us know if you get in the trial! Also, if you decide to go for the HAI pump first and have any questions about it, feel free to send me a private message. Like you, I was young when I was diagnosed with Stage IV CRC and I honestly feel like the pump saved my life. I had it implanted at Memorial Sloan Kettering in NYC.


It is one of the post of Kilian
mom of now 10 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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

Re: Liver and lung mets

Postby AlexandraZ » Mon Sep 02, 2019 1:42 pm

Wow, thank you all for your responses! The HAI pump is very interesting, but are you eligible for it if you have extra-hepatic spread? My boyfriend has lung mets too, and I thought they only accepted patients with isolated hepatic metastasis. Anyone know?

Jesper will have his 12th FOLFIRI (with Panitumumab) this week, and then we are planning on taking a break. Half a year of uninterrupted full-dose chemo seems like enough for now!

Does anyone have experience with liver AND lung mets?
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!

itsalexander
Posts: 2
Joined: Mon Sep 02, 2019 7:09 pm

Re: Liver and lung mets

Postby itsalexander » Mon Sep 02, 2019 7:11 pm

Hi, I'm 33M, diagnosed stage 4 colon cancer to liver and lungs as well. Is there any way we could maybe keep contact open/share stories or possible trials and help each other out that way?

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

Re: Liver and lung mets

Postby AlexandraZ » Wed Sep 04, 2019 11:06 am

That sounds like a good idea Alexander! I don't know how though...I'm pretty new on here too. Would love to hear more about your experiences as well. Are you getting chemo now? When were you diagnosed?
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: 3052
Joined: Thu Aug 05, 2010 12:59 pm

Re: Liver and lung mets

Postby juliej » Wed Sep 04, 2019 6:02 pm

AlexandraZ wrote:Wow, thank you all for your responses! The HAI pump is very interesting, but are you eligible for it if you have extra-hepatic spread? My boyfriend has lung mets too, and I thought they only accepted patients with isolated hepatic metastasis. Anyone know?

Jesper will have his 12th FOLFIRI (with Panitumumab) this week, and then we are planning on taking a break. Half a year of uninterrupted full-dose chemo seems like enough for now!

Does anyone have experience with liver AND lung mets?

Hi, Alexandra!

I was diagnosed with liver mets (in all lobes) AND lung mets (in both lungs). I had 14 months of chemo and then sought a second opinion at MSKCC in NYC. They resected my liver, removed my primary tumor, and implanted an HAI pump. Three months later I had double-lung surgery for my lung mets. So it's definitely possible to get the pump with extra-hepatic spread. I'm NED now and truth-be-told, I would not be here now writing you if I hadn't went to MSK and Dr. Kemeny in particular. I owe them my life. No one else would even consider me for surgery because of the sheer amount and spread of my tumors.

You said Jesper had a 50% reduction in only 8 rounds - that's a very good response! I'm sure part of the reason I was seen at MSKCC was because I too had such a good initial response to chemo. They also favor healthy patients, ideally without comorbidities, and it sounds like he fits that profile too. I think it would be worth your time to get a consultation at MSK if you can while you're in the US.

Has Jesper had genetic tests done? Genetic tests should include KRAS, BRAF, MLH1, MSH2, APC, MSH6, PMS2, and MUTYH. Additionally, testing for MSI or MRI status (MLH1, MSH2, MSH6, PMS2) lends information for the option to use pembrolizumab (Keytruda), a PD-1 inhibitor, and part of a new set of exciting immunotherapy drugs that are coming out right now so make sure he gets it too.

Hope this helps!
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 9/23/2019, CEA<1

Siti
Posts: 103
Joined: Thu Aug 01, 2019 10:58 am

Re: Liver and lung mets

Postby Siti » Thu Sep 05, 2019 4:41 am

Hello Alexandra

Sorry to hear about your BF’s diagnosis.

We live in Amsterdam. When my husband was diagnosed with cancer, the first oncologist did not want to operate on him saying that if the PET scan shows distant metastasis (he doesn’t have any organ involvement but suspicious swollen distant lymph nodes), it would be just chemo and she also said maybe he has 2 years to live.

I found that unacceptable and even if the statistics were true, we would not give up without a fight. So we flew to Singapore to get scans and surgery done which was done within days by a doctor trained in MSKCC (btw it took 6 weeks just to wait for a colonoscopy in Amsterdam!).

What I realised later on is that there’s to private healthcare in many counties in Europe and the hospitals have a limited budget allocated every year to treat their patients.

I would strongly recommend seeking a second opinion in other countries if you have the option because life is worth fighting for!
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: Liver and lung mets

Postby AlexandraZ » Thu Sep 05, 2019 10:01 am

juliej wrote:
AlexandraZ wrote:Wow, thank you all for your responses! The HAI pump is very interesting, but are you eligible for it if you have extra-hepatic spread? My boyfriend has lung mets too, and I thought they only accepted patients with isolated hepatic metastasis. Anyone know?

Jesper will have his 12th FOLFIRI (with Panitumumab) this week, and then we are planning on taking a break. Half a year of uninterrupted full-dose chemo seems like enough for now!

Does anyone have experience with liver AND lung mets?

Hi, Alexandra!

I was diagnosed with liver mets (in all lobes) AND lung mets (in both lungs). I had 14 months of chemo and then sought a second opinion at MSKCC in NYC. They resected my liver, removed my primary tumor, and implanted an HAI pump. Three months later I had double-lung surgery for my lung mets. So it's definitely possible to get the pump with extra-hepatic spread. I'm NED now and truth-be-told, I would not be here now writing you if I hadn't went to MSK and Dr. Kemeny in particular. I owe them my life. No one else would even consider me for surgery because of the sheer amount and spread of my tumors.

You said Jesper had a 50% reduction in only 8 rounds - that's a very good response! I'm sure part of the reason I was seen at MSKCC was because I too had such a good initial response to chemo. They also favor healthy patients, ideally without comorbidities, and it sounds like he fits that profile too. I think it would be worth your time to get a consultation at MSK if you can while you're in the US.

Has Jesper had genetic tests done? Genetic tests should include KRAS, BRAF, MLH1, MSH2, APC, MSH6, PMS2, and MUTYH. Additionally, testing for MSI or MRI status (MLH1, MSH2, MSH6, PMS2) lends information for the option to use pembrolizumab (Keytruda), a PD-1 inhibitor, and part of a new set of exciting immunotherapy drugs that are coming out right now so make sure he gets it too.

Hope this helps!
Juliej


Wow Juliej, thank you so much! I LOVE your story. Congratulations on making it through! You must be a pretty badass person to go through something like that so successfully.

I have read so many good things about Dr Kemeny that by now she sounds like a celebrity to me. Is it possible to get a real-life consultation with her? After reading your post I went on their website and filled in the form requesting a second opinion for international patients. If they have an opening we absolutely could add a stop in NYC for a consultation. Do you think I need to do anything special to be able to see Dr Kemeny?

You are right, Jesper absolutely fits that profile. No comorbidities, young and healthy and strong in every other way (except for the stage 4 cancer :? ) He'll remove his 5-FU pump tomorrow and then he's been through 6 months of chemo. Pending a positive CT scan, he'll get a 3-month break. His CEA went up slightly last time (195 to 210), but I think it's because the nurse forgot to switch on his 5-FU pump last time and we didn't notice it until he was going to remove it. So he didn't get any 5-FU on his 11th round, which I suppose could account for the small rise. Fingers crossed for an excellent scan.

Jesper's cancer is KRAS and BRAF wild type, no Lynch syndrome. I just dug out his histology papers and figured out he is MSS (normal expression of all those genes - per my google search that means MSS). I don't think he can have Keytruda then, right?
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: 188
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Liver and lung mets

Postby Claudine » Thu Sep 05, 2019 12:26 pm

Hi Alexandra,

There was a post a while back about receiving Keytruda even when one is MSS, I can't figure out how to share the link but you should find it if you do a search on "Mutation burden is the key". Apparently, Keytruda can be used on non-MSI patients, but it all depends on their mutations.
My husband has "a multitude" of small lesions in both lungs (none in liver though) so I'm interested in anything on the subject! He just finished 12 rounds of Folfiri + Avastin, the next scan is scheduled for the 16th; hopefully many (all!!!) of them will have shrunk or (even better) disappeared. Apparently, lung surgery/radiation is not done when there are more than 8 or so lesions...

Best of luck,

Claudine
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 7.4
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

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

Re: Liver and lung mets

Postby AlexandraZ » Thu Sep 05, 2019 3:28 pm

mariane wrote:Hi!
I was diagnosed with rectal cancer with metastases to the liver (10+) in June 2015.
I am originally from Poland. With the extensive spread of my cancer I was offered only palliative therapy. I found online Dr. Kemeny from MSKCC (Memorial Sloan Kettering) in New York who is successfully treating liver mets. My husband sent my scans from Poland to MSKCC . First attempt was unsuccessful. The person who picked up the phone refused him. After a few days he tried again and a nurse ( whom I will be forever grateful) showed my scans to Dr. Kemeny. She scheduled my appointment a week later. I was lucky to respond well to chemo ( systemic and administered directly to the liver via hepatic pump) and I have been NED since my last surgery in May 2016.
The problem for you might be an insurance. However, I would still try. Dr. Kemeny is seeing patients from all over the world.
Hepatic pump is also offered in France but I don't have too much info about it. There was a patient from France a few years ago who thought about pursuing it. I also know a lady from Germany whose mom was seen by Dr. Kemeny. She is also a European crc researcher and is very up to date with all the info. I will contact her if you are willing to .

Good luck!


Thank you Mariane! Congratulations on your NED status!

That's very helpful. Which country were you based in when you got in touch with Dr Kemeny? Were you in the US? I don't think my boyfriend has insurance which would cover treatment, but if they can help him we will work out the money somehow. I hope I hear back from them soon! Otherwise I'll try calling. (I filled in a form for a second opinion for international patients online). I really really want to get an appointment. Jesper has responded so well to chemo so far, and I want to make sure we are as aggressive as we need to be. Really not too impressed with the doctors here in Denmark.
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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