1st bad scanning... advice please!!

[AlexandraZ]

Hi everyone,

Jesper just had his first scan that shows growth since his diagnosis. I'm not super shocked, since he HAS been on a chemo break for two months. But I guess I just hoped it would be less. We got home from Mexico a few days ago and he got a new CT scan yesterday. The results came in today, and his liver and lung mets are both growing. (liver mets have gone from about 1.8cm to 2.5 cm, and lung mets from 0.9 to 1.3.) So they are still small compared to diagnosis, at least the liver mets. They started at 5-6cm. The lung mets however are back at the size they were at when he was diagnosed.

Is this a terrible result? I don't know what is to be expected. His CEA was still at 210 after 12 rounds of chemo, so we knew the cancer was still active. A positive point is that there are no new tumors or any further spreading of disease.

Our plan is to get to MSK ASAP now. I finally sent all the documents a few days ago and I'm waiting to hear back from them. I'll give them a call today. I want to leave within a week if possible. My hope is that they will operate his liver, since his mets are small now. In his Danish files it said that it was hard to tell if his liver was operable, and that they wouldn't operate due to multiple lung mets. Based on some other stories on here, I want to see if they would operate his liver and then see if operation becomes a possibility for the lung mets later on. But I guess they will probably want him to do some more rounds of chemo to make sure the cancer is stable and not processing, right? He did 12 rounds of FOLFIRI without any disease progression, so technically I guess they could give him some more of that, as it was still working. Or would they be more likely to start him on FOLFOX as his 2nd line chemo? I honestly don't want to start any new treatment before getting MSK's opinion, which is why I want to go there NOW.

I would REALLY appreciate some input from you all! I don't know what to expect or whether to be upset or not. I'm definitely stressed out, but is this terrible news or just a minor setback that was to be expected? Thanks guys.

[Detox]

Hi,

I'm not completely certain but it seems that most surgeons will usually not operate unless there is a chance to get rid of all visible cancer. In other words, they will only attempt a liver resection if they can also resect the lung metastases as well.

I don't recall any patients doing both simultaneously due to patient risk but I could be wrong.

[FightCRC]

Our plan is to get to MSK ASAP now. I finally sent all the documents a few days ago and I'm waiting to hear back from them. I'll give them a call today. I want to leave within a week if possible. My hope is that they will operate his liver, since his mets are small now. In his Danish files it said that it was hard to tell if his liver was operable, and that they wouldn't operate due to multiple lung mets. Based on some other stories on here, I want to see if they would operate his liver and then see if operation becomes a possibility for the lung mets later on. But I guess they will probably want him to do some more rounds of chemo to make sure the cancer is stable and not processing, right? He did 12 rounds of FOLFIRI without any disease progression, so technically I guess they could give him some more of that, as it was still working. Or would they be more likely to start him on FOLFOX as his 2nd line chemo? I honestly don't want to start any new treatment before getting MSK's opinion, which is why I want to go there NOW.

I'm sorry for the growth, but as you note, it's not unexpected under the circumstances. And really, in the overall scheme, it's not that bad at all. So no need to stress out too hard about it today.

However...really should have gotten the ball rolling with MSK sooner. It's not ordering take-out; you can't just been seen there on demand. It takes time to get everything set up. I'm not saying this to you now as a rebuke, but for the benefit of anyone who is new to this and reading these threads for guidance. Get that second opinion ASAP. Stage IV cancer, especially, doesn't go on hold while we research treatment options. Don't wait until things get truly desperate; if you've been diagnosed at Stage IV, you're desperate enough already.

In your case, going by your signature line, that your boyfriend is young (and presumably fit), is wild-type, and had an excellent response to first line chemo, all bode well for HAI treatment, especially. Which is why I'm assuming you're interested in MSK? If so, you must see Dr. Kemeny specifically. She's not afraid of lung mets, either (providing they aren't too pervasive).

I'll also suggest Dr. Yuman Fong at City of Hope in LA as another option. (City of Hope is an NCI-Designated Comprehensive Cancer Center like MSK.) He's the Chair of Dept. of Surgery there. But more importantly to you, he's considered one of the greatest surgeons around, perhaps the greatest liver surgeon around. His background is 20+ years as the top liver guy at MSK, where he helped develop HAI treatment with Dr. Kemeny (and he also co-authored all the early HAI papers with her, too). He knows the pump. He's implanted more of them than anyone. And his philosophy is to solve the liver first, and then go after lung mets. The liver takes priority, as that's the primary site of life-limiting disease. It's what usually gets patients, before any other mets, so those other mets can wait. Or, to put it another way, there's no real point in addressing the other mets (other than palliative reasons) before addressing the liver.

On top of all that, Dr. Fong is just an incredible human being. He really does care. Someday I'll talk about everything he's done for my family. Anyway, he doesn't get mentioned as much as Dr. Kemeny on the various CRC message boards, but as a doctor friend at MSK puts it, he's "MSK West" all by himself. Good luck, whichever way you decide to go.

[AlexandraZ]

I'm sorry for the growth, but as you note, it's not unexpected under the circumstances. And really, in the overall scheme, it's not that bad at all. So no need to stress out too hard about it today.

However...really should have gotten the ball rolling with MSK sooner. It's not ordering take-out; you can't just been seen there on demand. It takes time to get everything set up. I'm not saying this to you now as a rebuke, but for the benefit of anyone who is new to this and reading these threads for guidance. Get that second opinion ASAP. Stage IV cancer, especially, doesn't go on hold while we research treatment options. Don't wait until things get truly desperate; if you've been diagnosed at Stage IV, you're desperate enough already.

In your case, going by your signature line, that your boyfriend is young (and presumably fit), is wild-type, and had an excellent response to first line chemo, all bode well for HAI treatment, especially. Which is why I'm assuming you're interested in MSK? If so, you must see Dr. Kemeny specifically. She's not afraid of lung mets, either (providing they aren't too pervasive).

Thank you so much for your response! Very helpful. I know we should have gone sooner. My boyfriend didn't want to rush, and felt he really needed a break after 6 months of chemo. I translated all the medical files myself, which ended up being a huge task. But I agree, I should have pushed him more and gotten it pushed through earlier. The good news is we can have his biopsies in hand by Thursday, so as soon as MSK gives us the green light we'll be on our way.

My boyfriend is very fit and handled chemo extremely well. The nurses were always surprised at how healthy he was looking, even at his 10th or 11th full dose of FOLFIRI + Vectibix. He has many small lung nodules, but I hope the surgeons at MSK will follow the thought process you explained about handling the liver first.

[Siti]

Really sorry to read this Alexandra. I don’t have any experience to share but please don’t be too hard on yourself. You’ve already done an excellent job translating everything, now let’s wait for news from MSK. Look at the bright side — he is strong, responded well to chemo (which means he has not exhausted that option), the mets are still smaller than before and he does not have any mutations that prevents him from other chemo options.

Also, there’s only so much you can “push”. Ultimately, he needs to also take the lead and if a break was what he needed, then I believe it was a well deserved one, which now gives him the strength to continue the road to recovery at full speed.

[Amarie123]

I’m sorry you received this news, but the good thing is everything is small. And please don’t be hard on yourself- these things happen. I was on chemo and it happened so there’s no guarantee either way. After radiation on my larger liver tumor, 3 new ones showed up in my most recent scan and the lung ones got a little bigger. My lesions are considered inoperable, partly because of location and also due to them being in both the liver and lungs. The plan is to have an ablation on the three new liver lesions as the larger one (hopefully) continues to shrink from radiation. Sometimes, once lesions on one organ are gone, surgery can become an option. Since I cannot have Folfox or related chemo, my other options are limited. This isn’t the case for your boyfriend however, so that’s a huge positive. That and it’s likely he’d be a candidate for immuno and targeted therapies as well. As in my case and as others have said, they will probably focus on the liver first and then the lungs later. Ablation is shown to be as effective as surgery so that could be an option for him. He has options and will be in good hands. It’s hard but try to stay positive!

[rachelfromnyc]

Hi Alexandra. Sorry to hear about the scan results. I’ll share with you my experience. I presented with the primary tumor, lung modules and enlarged lymph nodes. My first line was FOLFOX and I did six cycles until a scan showed new disease in the liver. At that point I was switched to FOLFIRI and Avastin and I’m about halfway through. The goal is to get to a place of stable disease at which point we’ll asses and go from there.

I’m being treated at Sloan Kettering, you’ll be in good hands there. Everyone from my oncologist to nurses and admin staff have been really great to me. As the previous poster mentioned, there’s reason to stay positive and hopeful as long as there are options on the table. Wishing you the best!

[AlexandraZ]

Really sorry to read this Alexandra. I don’t have any experience to share but please don’t be too hard on yourself. You’ve already done an excellent job translating everything, now let’s wait for news from MSK. Look at the bright side — he is strong, responded well to chemo (which means he has not exhausted that option), the mets are still smaller than before and he does not have any mutations that prevents him from other chemo options.

Also, there’s only so much you can “push”. Ultimately, he needs to also take the lead and if a break was what he needed, then I believe it was a well deserved one, which now gives him the strength to continue the road to recovery at full speed.

Thanks Siri. I'm kicking myself a little - we really should have just gone right away. But fine, regret is pointless. I just hope they will operate despite his lung mets. Man, this cancer adventure is not the fun kind of adventure. Next step after the 2nd opinion will be figuring out how to pay an astronomical figure out of pocket, that is, assuming they will accept him. But we just have to take one step at a time!

[AlexandraZ]

I’m sorry you received this news, but the good thing is everything is small. And please don’t be hard on yourself- these things happen. I was on chemo and it happened so there’s no guarantee either way. After radiation on my larger liver tumor, 3 new ones showed up in my most recent scan and the lung ones got a little bigger. My lesions are considered inoperable, partly because of location and also due to them being in both the liver and lungs. The plan is to have an ablation on the three new liver lesions as the larger one (hopefully) continues to shrink from radiation. Sometimes, once lesions on one organ are gone, surgery can become an option. Since I cannot have Folfox or related chemo, my other options are limited. This isn’t the case for your boyfriend however, so that’s a huge positive. That and it’s likely he’d be a candidate for immuno and targeted therapies as well. As in my case and as others have said, they will probably focus on the liver first and then the lungs later. Ablation is shown to be as effective as surgery so that could be an option for him. He has options and will be in good hands. It’s hard but try to stay positive!

Thanks so much Amarie. You're right, everything is small. Where are you getting treated? The reason we are going to MSK (apart from it being one of the best cancer centers in the world) is that we know of people who had tumors in liver AND lungs who were given a liver resection. If Jesper's liver is resectable, that will give him a better chance, since lung mets are typically more slow-growing and less life-threatening.

Where are you receiving your ablations? That's our second choice, if surgery turns out to not be an option.

[AlexandraZ]

Hi Alexandra. Sorry to hear about the scan results. I’ll share with you my experience. I presented with the primary tumor, lung modules and enlarged lymph nodes. My first line was FOLFOX and I did six cycles until a scan showed new disease in the liver. At that point I was switched to FOLFIRI and Avastin and I’m about halfway through. The goal is to get to a place of stable disease at which point we’ll asses and go from there.

I’m being treated at Sloan Kettering, you’ll be in good hands there. Everyone from my oncologist to nurses and admin staff have been really great to me. As the previous poster mentioned, there’s reason to stay positive and hopeful as long as there are options on the table. Wishing you the best!

Thanks Rachel, I'm happy to hear about your good experiences at MSK! That's encouraging. I'm so anxious to get over there now. I want to wait with starting new chemo until we've gotten their opinion, in case it changes things. Is their goal to get you operable? How many lung nodules do you have?

[Amarie123]

I’m sorry you received this news, but the good thing is everything is small. And please don’t be hard on yourself- these things happen. I was on chemo and it happened so there’s no guarantee either way. After radiation on my larger liver tumor, 3 new ones showed up in my most recent scan and the lung ones got a little bigger. My lesions are considered inoperable, partly because of location and also due to them being in both the liver and lungs. The plan is to have an ablation on the three new liver lesions as the larger one (hopefully) continues to shrink from radiation. Sometimes, once lesions on one organ are gone, surgery can become an option. Since I cannot have Folfox or related chemo, my other options are limited. This isn’t the case for your boyfriend however, so that’s a huge positive. That and it’s likely he’d be a candidate for immuno and targeted therapies as well. As in my case and as others have said, they will probably focus on the liver first and then the lungs later. Ablation is shown to be as effective as surgery so that could be an option for him. He has options and will be in good hands. It’s hard but try to stay positive!

Thanks so much Amarie. You're right, everything is small. Where are you getting treated? The reason we are going to MSK (apart from it being one of the best cancer centers in the world) is that we know of people who had tumors in liver AND lungs who were given a liver resection. If Jesper's liver is resectable, that will give him a better chance, since lung mets are typically more slow-growing and less life-threatening.

Where are you receiving your ablations? That's our second choice, if surgery turns out to not be an option.

I am seen at MGH in Boston and having my ablation there. Whether or not the liver is respectable is dependent on various factors like location, so if it’s possible for your boyfriend that’s great. Yes, lung lesions are slower growing so they will try to get a handle on the liver first. And I agree about being seen at a major cancer center, I feel very lucky. They will just have so much more for him in terms of options, top providers and clinical trials.

[rachelfromnyc]

Alexandra- answering your questions. The lung nodules are too many to count and are below the resolution of the scan. I don’t even know how big they are. As far as operating, they’re very hesitant to take me off chemo because of the extent of my disease. They would only do so on the primary tumor if I had an obstruction. My oncologist talked about ablation for the liver as an option, but she wants me to complete this round of treatments before making those decisions.

Please keep us looped in on your progress getting into MSK. I don’t know how it works with international patients but for me, it was easy once I got my records and slides to the hospital. I know a couple of nurses there and they pushed for me when needed, but even without that I think the schedulers are attuned to the time sensitivity of these things.

[AlexandraZ]

Alexandra- answering your questions. The lung nodules are too many to count and are below the resolution of the scan. I don’t even know how big they are. As far as operating, they’re very hesitant to take me off chemo because of the extent of my disease. They would only do so on the primary tumor if I had an obstruction. My oncologist talked about ablation for the liver as an option, but she wants me to complete this round of treatments before making those decisions.

Please keep us looped in on your progress getting into MSK. I don’t know how it works with international patients but for me, it was easy once I got my records and slides to the hospital. I know a couple of nurses there and they pushed for me when needed, but even without that I think the schedulers are attuned to the time sensitivity of these things.

Thanks for your answers, Rachel. I still haven't heard back from them but I'll try calling again today. We had a consultation here today and they want to start him on FOLFOX and Avastin. I don't want him to start until we've seen MSK, partly because I want to make sure that is their recommendation, but also because I should rather have him travel when he's feeling well and not on chemo. And IF they want to give him an HAI pump, I think that would have to be before he starts on any Avastin.

I hate this cancer sh*t. We're supposed to be building our lives and planning kids and stuff, and instead we're dealing with this. I hate seeing Jesper go through this and I just hope hope hope he can make it through!!!

[ginabeewell]

Thanks for your answers, Rachel. I still haven't heard back from them but I'll try calling again today. We had a consultation here today and they want to start him on FOLFOX and Avastin. I don't want him to start until we've seen MSK, partly because I want to make sure that is their recommendation, but also because I should rather have him travel when he's feeling well and not on chemo. And IF they want to give him an HAI pump, I think that would have to be before he starts on any Avastin.

I hate this cancer sh*t. We're supposed to be building our lives and planning kids and stuff, and instead we're dealing with this. I hate seeing Jesper go through this and I just hope hope hope he can make it through!!!

I worry a little about delaying treatment further. You could always call MSK and tell them what’s being recommended and ask if there is any reason NOT to move forward with FOLFOX + Avastin while you wait for an appointment. That’s a pretty standard treatment and I don’t think it would be a problem to start that prior to an HAI pump being installed. It would be different if someone was recommending radiation.

I know this is all a lot to manage at a point in your life where you are supposed to be doing the fun stuff. But I will say I have fallen deeper in love with my husband in the past year than I could have imagined. So you never know what silver linings await. : )

[AlexandraZ]

Thanks for your answers, Rachel. I still haven't heard back from them but I'll try calling again today. We had a consultation here today and they want to start him on FOLFOX and Avastin. I don't want him to start until we've seen MSK, partly because I want to make sure that is their recommendation, but also because I should rather have him travel when he's feeling well and not on chemo. And IF they want to give him an HAI pump, I think that would have to be before he starts on any Avastin.

I hate this cancer sh*t. We're supposed to be building our lives and planning kids and stuff, and instead we're dealing with this. I hate seeing Jesper go through this and I just hope hope hope he can make it through!!!

I worry a little about delaying treatment further. You could always call MSK and tell them what’s being recommended and ask if there is any reason NOT to move forward with FOLFOX + Avastin while you wait for an appointment. That’s a pretty standard treatment and I don’t think it would be a problem to start that prior to an HAI pump being installed. It would be different if someone was recommending radiation.

I know this is all a lot to manage at a point in your life where you are supposed to be doing the fun stuff. But I will say I have fallen deeper in love with my husband in the past year than I could have imagined. So you never know what silver linings await. : )

Thanks so much for your message Gina. I'm a little torn about starting chemo. I don't want to delay treatment either, but he'll be on FOLFOX and I don't want him to be too uncomfortable during the long travel. Also, I'd prefer to be close to home for his first infusion in case of adverse reactions. I had to dial 911 a few days after his first FOLFIRI infusion due to severe chest cramps, so I'm a little anxious. I'd like to get to MSK and see what they say. I'll call them tomorrow and see if they have an answer for me. The website says 3-5 business days before they get in touch, and now it's been 4. If we can leave by Monday or Tuesday we'll go before starting chemo and if we need to wait longer, we'll go ahead and start. Just deciding that while typing this.

Do you know if they'd give him a pump while he's on Avastin? I heard surgery was a no-no during Avastin due to bleeding risks. I've spent the past 9 months researching and still there is so much I don't know. I've read all the pages of your thread, but I forget the details. When did you get your pump? Was it a long process or did it go pretty fast? I hope you don't mind all my questions! Also, if he does get a pump, which I hope will be a possibility, it will have to be refilled or flushed/rinsed every two weeks. In that case I think we might relocate to NYC for 6 months or however long they do FUDR for. Flying back and forth every two weeks seems like a lot!

Hope you're feeling better and better every day. You are an inspiration to us.