Suggestions for treatment facility for liver and lung mets

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AlexandraZ
Posts: 176
Joined: Fri Aug 23, 2019 8:25 am

Suggestions for treatment facility for liver and lung mets

Postby AlexandraZ » Tue Jan 07, 2020 7:28 am

Hi everyone,

I am planning our next move and thought I would ask you all for recommendations. My boyfriend Jesper is on his third infusion of FOLFOX + Avastin with a scan scheduled after the 4th. His oncologist says he expects a stable scan. I plan to send Jesper's scans to several high-volume, reputable hospitals in Europe as well as getting a second opinion at MSK. I am gathering names and hospitals for my list of places to send his scans and any input would be greatly appreciated!

The main problem we have is that Jesper has MANY small lung nodules, which our oncologist says rules out surgery. What we want to do is find someone who will do a liver resection DESPITE his lung nodules, given a stable scan next time. We both think the concept of "chipping away" at the cancer when it is stable sounds logical and we have heard of many who have even been cured this way. But many surgeons won't operate in the presence of lung nodules. My ideal situation would be for Jesper to have a colon and liver resection, then probably more systemic chemo for the lungs and then do what we can to fight back the lung mets. I know his prognosis is not good, but we are willing to do ANYTHING and everything.

If no one will resect his liver, we will probably go to Dr. Vogl in Germany who does microwave ablation of liver mets. Dr. Drewes is an idea for YAG laser surgery on his lungs, but I think he has an 8-or-so upper limit for lung mets.

Anyway. What I am looking for is aggressive surgeons who are likely to look at Jesper and think "Wow, this young guy has been through all this chemo with such a great response, and still is so strong. Let's help him out!" You know? We are planning on getting a second opinion at MSK but want to send his scans to any and every centre/hospital that might accept him for surgery. Any recommendations?
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!

martd
Posts: 124
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Suggestions for treatment facility for liver and lung mets

Postby martd » Tue Jan 07, 2020 8:56 am

I can tell you about my experience with my first appointments. The oncologist told me surgery wouldn't be possible but my liver surgeon told me he saw potential, his exact words were he would swing for the fences for me. He was very adamant in telling me that I'd be surprised at how many people could have surgery but are never given a chance. Our situations are different I didn't have lung involvement but did have extensive tumors to my liver. His name is Dr Mathur. He's in liver transplant at Mayo Clinic in Phoenix Az.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

AlexandraZ
Posts: 176
Joined: Fri Aug 23, 2019 8:25 am

Re: Suggestions for treatment facility for liver and lung mets

Postby AlexandraZ » Tue Jan 07, 2020 11:23 am

martd wrote:I can tell you about my experience with my first appointments. The oncologist told me surgery wouldn't be possible but my liver surgeon told me he saw potential, his exact words were he would swing for the fences for me. He was very adamant in telling me that I'd be surprised at how many people could have surgery but are never given a chance. Our situations are different I didn't have lung involvement but did have extensive tumors to my liver. His name is Dr Mathur. He's in liver transplant at Mayo Clinic in Phoenix Az.


Wow, I love stories like yours. Thank you so much - I will add him to my list. :D

I think Jesper's liver is resectable, although we have never talked to a liver surgeon (!!). I think he has 8-10 tumors, most of them in the edge of his liver near his ribs as far as I can tell. His oncologist showed us his scan at our last appointment and told us there are no tumors near important arteries, etc. But he was still pessimistic regarding surgery due to the large number of lung nodules.
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!

boxhill
Posts: 570
Joined: Fri Apr 06, 2018 11:40 am

Re: Suggestions for treatment facility for liver and lung mets

Postby boxhill » Tue Jan 07, 2020 11:50 am

It makes sense to me to treat his liver mets. So what if it isn't "curative" by itself? With those gone he can attack the lung mets. Would they prefer to wait until the liver mets grow until they DO pose an immediate problem, and then say they are inoperable after all?

Forgive me, I can't recall whether his primary was removed? When you say 60% shrinkage, which mass(es) are you referring to?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

Claudine
Posts: 396
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Suggestions for treatment facility for liver and lung mets

Postby Claudine » Tue Jan 07, 2020 12:25 pm

I totally agree with you Alex! In our case, the oncologist wanted to get the cancer "under control" before surgery could happen - he felt that the presence of lung nodules showed the cancer was quite active and wanted a systemic treatment first. All I can tell you is that Folfiri + Avastin did a number of my husband's many small lung nodules (like Jesper, he had "numerous", whatever that means!). The oncologist gave the green light to move ahead, so we're meeting on Thursday with a urologist to discuss ablation of the left adrenal gland and its associated met. Has Jesper had his scan yet? I keep my fingers crossed that most (all of!) his multiple lung nodules are now gone!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - 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 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

AlexandraZ
Posts: 176
Joined: Fri Aug 23, 2019 8:25 am

Re: Suggestions for treatment facility for liver and lung mets

Postby AlexandraZ » Tue Jan 07, 2020 2:40 pm

boxhill wrote:It makes sense to me to treat his liver mets. So what if it isn't "curative" by itself? With those gone he can attack the lung mets. Would they prefer to wait until the liver mets grow until they DO pose an immediate problem, and then say they are inoperable after all?

Forgive me, I can't recall whether his primary was removed? When you say 60% shrinkage, which mass(es) are you referring to?


Thank you Boxhill! I'm glad my line of reasoning makes sense to someone other than myself. :D

He hasn't had any surgery at all. When we was diagnosed, his cancer was wildly out of control with a CEA of 70,000. 12 rounds of FOLFIRI got it down to 210, with shrinkage of the primary tumor (they didn't say how much - I think it's hard to tell how big that one is with a CT scan? At diagnosis it was 3x3cm, so definitely smaller now), about 60% shrinkage in size of liver mets, and about 40% shrinkage in lung mets. Unfortunately none of them disappeared, and during his 10-week chemo break they all grew slightly. His oncologists (we have a new one every two weeks) all say that surgery is off the table due to the large number of lung mets. But when I was translating his medical files I found a document where the team of surgeons wrote that liver resection might be possible, but wouldn't be done due to the lung nodules. The other thing is, in Denmark all medical care is socialized, which is handy as it makes chemo free, but it also means doctors have a lot of rules to follow. I think they "have to" say no to surgery if the operation in question is not curative by itself. Which is why I will be sending his scans to a bunch of hospitals as soon as we have a stable scan.
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: 176
Joined: Fri Aug 23, 2019 8:25 am

Re: Suggestions for treatment facility for liver and lung mets

Postby AlexandraZ » Tue Jan 07, 2020 2:45 pm

Claudine wrote:I totally agree with you Alex! In our case, the oncologist wanted to get the cancer "under control" before surgery could happen - he felt that the presence of lung nodules showed the cancer was quite active and wanted a systemic treatment first. All I can tell you is that Folfiri + Avastin did a number of my husband's many small lung nodules (like Jesper, he had "numerous", whatever that means!). The oncologist gave the green light to move ahead, so we're meeting on Thursday with a urologist to discuss ablation of the left adrenal gland and its associated met. Has Jesper had his scan yet? I keep my fingers crossed that most (all of!) his multiple lung nodules are now gone!


Thanks Claudine! Are your husband's lungs clear now? I'm glad FOLFIRI worked for him!! Jesper still has his lung nodules - I know because he had the flu recently and had an X-ray done to rule out pneumonia. The report says he has loads of tiny nodules that make it hard to read the X-ray at all. My hope is that if they are at least stable and not growing, hopefully there will be someone who will "dare" to take him off chemo long enough to resect his colon and liver. The growth during his 10-week break was nothing much, and I imagine the chemo break for an operation like that would be around 10 weeks or so?

Jesper is on FOLFOX as his second line of chemo, but FOLFIRI was still working. His oncologist said that we can always go back to that, but he didn't want to go right back onto it after a break, as there is a chance his cancer would "remember" it. So better to go on FOLFOX now and keep FOLFIRI for later.
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: 396
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Suggestions for treatment facility for liver and lung mets

Postby Claudine » Tue Jan 07, 2020 2:54 pm

Are your husband's lungs clear now?


Almost! Two 1mm nodules that look like granuloma (that's what the report says), and a single stable 1mm nodule. That from numerous nodules that were 5mm and smaller on his March 19 CT scan; by May 25 (after 5 Folfiri cycles) they were all shrinking, and in September (after 12 cycles) there was only those remaining nodules. So it took a while but most of them seem to be gone. or at least they're below detectable level... DH has been off chemo for 4 weeks now, in anticipation of surgery, and will remain so for 6-8 weeks post surgery. I will be a nervous wreck for his first scan after such a long chemo break, that's for sure!
Since my husband does not respond to Oxaliplatin, Folfiri is pretty much his only option. It's good to know that Jesper has extra options should he need it!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - 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 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

Rock_Robster
Posts: 509
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Suggestions for treatment facility for liver and lung mets

Postby Rock_Robster » Tue Jan 07, 2020 5:33 pm

It’s a long flight but you’re welcome to come see my liver surgeon in Melbourne! He’s an awesome guy - has always approached me with curative intent, and has done two resections on me now (the second was pretty tricky too - deep, nudging the hepatic vein). I believe he does around 150-200 livers + pancreases per year. He’s also a major trauma surgeon which I like (I figure these guys can handle any surprises... surely a gunshot to the liver is about as hard as it gets!)

It’s not MSK, but at least even with flights and hotels you’re probably only looking at 10% of the cost. My in-laws have plenty of space for you too :)
38M Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm high
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, Jun-20=2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic VMAT radiation; complete met. response
07/19 Robot ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect #2
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope

boxhill
Posts: 570
Joined: Fri Apr 06, 2018 11:40 am

Re: Suggestions for treatment facility for liver and lung mets

Postby boxhill » Wed Jan 08, 2020 1:22 pm

AlexandraZ, where is his primary?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

AlexandraZ
Posts: 176
Joined: Fri Aug 23, 2019 8:25 am

Re: Suggestions for treatment facility for liver and lung mets

Postby AlexandraZ » Wed Jan 08, 2020 1:40 pm

boxhill wrote:AlexandraZ, where is his primary?


Boxhill, it is in his sigmoid colon, about 16cm in.
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!

Mrned82
Posts: 15
Joined: Wed Jan 08, 2020 6:38 am

Re: Suggestions for treatment facility for liver and lung mets

Postby Mrned82 » Thu Jan 09, 2020 2:08 am

Hi,
Looking at the signature.....I was more or less in the same condition of your Jasper.....lung and liver mets....(diagnosed @ 35 in 2017 )...after 15 rounds of chemo + target therapy ( folfiri +cetuximab) I had my first op ....liver resection..they preferred liver first approach...than colon resection....and now I'm still on chemo for the lung stuff
I'm in cure at the Christie hospital in UK..but always double check with docs in Italy just to have a second opinion.
At the time both countries agreed to solve liver problem first than take care of the rest but I think depends on the case!
Just to tell my experience since we're in a similar situation!!!
Always remember
No Expiration Date!!!
male 37- italy/uk
stage 4 colon cancer with liver/lung mets since 2017
folfiri + cetuximab
7/2018 liver resection
09/2018 colon resection
38 rounds of chemo ...and still going on....
NO EXPIRATION DATE

AlexandraZ
Posts: 176
Joined: Fri Aug 23, 2019 8:25 am

Re: Suggestions for treatment facility for liver and lung mets

Postby AlexandraZ » Fri Jan 10, 2020 8:13 am

Mrned82 wrote:Hi,
Looking at the signature.....I was more or less in the same condition of your Jasper.....lung and liver mets....(diagnosed @ 35 in 2017 )...after 15 rounds of chemo + target therapy ( folfiri +cetuximab) I had my first op ....liver resection..they preferred liver first approach...than colon resection....and now I'm still on chemo for the lung stuff
I'm in cure at the Christie hospital in UK..but always double check with docs in Italy just to have a second opinion.
At the time both countries agreed to solve liver problem first than take care of the rest but I think depends on the case!
Just to tell my experience since we're in a similar situation!!!
Always remember
No Expiration Date!!!


So happy to hear from you!!! I actually just saw one of your posts the other day and told Jesper (my bf) about how you had said something like "I am not a yoghurt, I do not have an expiration date". I love that!! Jesper had a good laugh too. He is also not a yoghurt!! :lol:

Very very interesting about your liver resection!! Yes the liver first approach makes a LOT of sense. Did you have lung mets already at that time? What seems to be more difficult is finding a surgeon who will resect the liver even though the lung mets are not resectable at this point. I would be VERY interested to hear more details if you don't mind sharing! The oncologists here in Denmark are very pessimistic and don't want to do anything else than chemo. But we are not giving up!! He has had such a great response and he has a very strong body that can withstand a lot. Do you remember the name of your liver surgeon? I would like to add him/her to my list of places to send Jesper's next scan.
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!

Mrned82
Posts: 15
Joined: Wed Jan 08, 2020 6:38 am

Re: Suggestions for treatment facility for liver and lung mets

Postby Mrned82 » Fri Jan 10, 2020 10:28 am

I don't remember the name of the liver surgeon at the moment.(.he is Indian and not easily to spell)...but I will find it when I will back home next week...at the moment I'm doing a "solo travel" in Japan...and I will send you in private!!
when I had the liver resection I had tiny lung mets ...I don't know how many cause I've never had the courage to ask..but I had a Pet before the op...and the mets were "inactive "..
and remember there is no expiration date!!!
male 37- italy/uk
stage 4 colon cancer with liver/lung mets since 2017
folfiri + cetuximab
7/2018 liver resection
09/2018 colon resection
38 rounds of chemo ...and still going on....
NO EXPIRATION DATE

AlexandraZ
Posts: 176
Joined: Fri Aug 23, 2019 8:25 am

Re: Suggestions for treatment facility for liver and lung mets

Postby AlexandraZ » Fri Jan 10, 2020 2:44 pm

Mrned82 wrote:I don't remember the name of the liver surgeon at the moment.(.he is Indian and not easily to spell)...but I will find it when I will back home next week...at the moment I'm doing a "solo travel" in Japan...and I will send you in private!!
when I had the liver resection I had tiny lung mets ...I don't know how many cause I've never had the courage to ask..but I had a Pet before the op...and the mets were "inactive "..
and remember there is no expiration date!!!


Amazing!! That is very inspiring. And your liver has been clear since your resection? do you know how many mets you had in your liver?
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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