Liver and lung mets

[Rock_Robster]

That’s great news Alexandra! Thanks for sharing. Really pleased to hear about the liver and glad you’re now prioritising a surgical opinion.

Indeed below 2cm then ablation can become an option, depending on the position of the tumour. Ablation doesn’t work so well near major blood vessels. Below 2cm, ablation has been shown to about 90% as good as surgical resection (above 3cm, it’s about 10% as good). If there are several mets in one segment then they must just prefer to do an anatomical resection of that segment, but if there is a “rogue” small lesion elsewhere, or if it is very deep (which would mean losing a lot of healthy liver too), then they may prefer to ablate. If it is near the surface then a ‘wedge’ resection is also possible to avoid losing the whole segment. Often they combine ablation with resection if there are multiple mets to try to preserve as much liver as possible. Lots of tools in the arsenal, anyway.

Enjoy the chemo break and hoping you guys get some great news from the surgeon

[AlexandraZ]

That’s great news Alexandra! Thanks for sharing. Really pleased to hear about the liver and glad you’re now prioritising a surgical opinion.

Indeed below 2cm then ablation can become an option, depending on the position of the tumour. Ablation doesn’t work so well near major blood vessels. Below 2cm, ablation has been shown to about 90% as good as surgical resection (above 3cm, it’s about 10% as good). If there are several mets in one segment then they must just prefer to do an anatomical resection of that segment, but if there is a “rogue” small lesion elsewhere, or if it is very deep (which would mean losing a lot of healthy liver too), then they may prefer to ablate. If it is near the surface then a ‘wedge’ resection is also possible to avoid losing the whole segment. Often they combine ablation with resection if there are multiple mets to try to preserve as much liver as possible. Lots of tools in the arsenal, anyway.

Enjoy the chemo break and hoping you guys get some great news from the surgeon

Thanks! You seem extremely knowledgeable regarding surgeries. I believe it was one of your posts where I originally read the datum about 2cm and ablation. That's cool and exciting! I've done tons of research on chemo and cancer in general, but I don't know much about surgery at all. So that's very helpful. Following the threads on this forum I've realized what a big difference there is between doctors and surgeons. I'm pretty sure the Danish hospital is very rigid in following their official guidelines, so I think we HAVE to search elsewhere and pay out of our pockets. I've heard a lot about Dr. Vogel in Germany and I'm considering contacting him also, as he has a great reputation as a liver surgeon and we are just north of Germany. But I'll go over all our options and all my questions with our oncologist on Tuesday. He seems pretty up-to-date and open, so I don't think he'll be offended if we decide to go somewhere else. (Not that anyone necessarily would be offended, but he seems more open-minded than other oncologists we've met).

I also want to ask how many mets he has in his liver. At diagnosis 7 of 8 segments were affected, but he had big 5-6cm mets that may have covered several segments. Now that they have all shrunk, I'm pretty sure it's looking a lot better. His records just say "multiple" mets in the liver, but I don't know if that means 10, 12, 7 or 15?? It's not like he has countless tiny mets, I know that for sure. Would be good to get more details now that we might have more options.

[Rock_Robster]

No problem at all, after lining up for my 2nd one of these I’ve done a fair bit of reading. I also have some modest paramedical training, and I like to bug my surgeon a lot too

Great idea re getting multiple surgical opinions. Surgery is the one area that I’ve observed the most variation between approaches. One surgeon’s “inoperable” can be another surgeon’s “Tuesday”. And the range of techniques and approaches used can vary wildly too - there’s other possibilities like portal vein embolisation and multi-stage surgeries that probably haven’t really come up yet in your discussions. No such thing as too many opinions, in my view!

Indeed it will be great to get more data now you know he’s had a great response! Liver mets are a bit like real estate - it’s all about location, location, location. You could have 20 mets but if they’re in one or two adjacent segments, then happy days for a resection. I’ve been lucky so far that mine have popped up in fairly friendly locations, though this latest one is a little more tricky as it’s deeper and near a blood vessel we’d rather keep.

Indeed there are some very reputable surgeons in Germany, so I can understand the interest there. It’s definitely one of the places people head to (outside of the US) when looking for novel ideas for more complex cases.

Keep in touch!
Rob

[claudine]

Those are great news Alexandraz!!

[juliej]

Just checking in to mention that Jesper's new scan came in after his 12th round of FOLFIRI. His lung mets are stable (biggest met is 1cm) and his liver mets have shrunk further. At diagnosis, the biggest mets were 5-6 cm. Now they are 1.8-2cm! That's over a 60% decrease in size! We're very pleased and will definitely get a second opinion to see if there is someone who thinks his liver is resectable now.
He is getting a much-needed chemo break and during the break I'll send his scans around and see what other surgeons (and what the people at MSK) think! I think I heard something about that if tumors are under 2cm you have more treatment options. Maybe RFA or something, I don't know. Anyway, just wanted to share the good news!

This is FANTASTIC news, Alexandra!!! Sixty percent decrease is absolutely amazing! Folfiri is definitely working for him.

Lung mets are slower to react to chemo so you won't see changes there as quickly. It's more important to see whether or not they are growing or if there are any new nodules. It's a really good sign that his lung mets are stable.

You're right about having more treatment options when liver mets are smaller. RFA is a good possibility for some of the smaller ones, maybe combined with wedge resections for the larger ones. It's all up to the surgeon. The main thing is that Jesper should be able to get a surgical opinion now, considering his wonderful response to chemo.

I'm so happy for both of you!
Juliej

[AlexandraZ]

Thank you so much everyone! We're definitely pleased, and SO HAPPY to be getting a chemo break too. The 12th infusion hit him the hardest, and even now, two weeks later, his skin is still a mess from the Vectibix. He deserves this break!

We met with his oncologist today who said he would send the new scan to the multi-disciplinary team or whatever it's called. The board of surgeons and specialists. However, he did say he didn't expect them to be able to operate. So we absolutely need a second opinion. I really get the idea that as soon as they see the lung mets, they're like, "Thank you, next". We requested all his CT scans and all the things MSK asked for, and I just need to translate his medical file. I found out a second opinion there is 5000 USD, yikes! But it's some kind of deposit that goes toward your treatment if they accept you, and otherwise you get back what's left after they have charged you for the consultation and any bloodworm or anything else they may need. So I want to make it happen.

We asked how many liver mets there were, and he said no one has counted them. We then got a chance to look at his first scan compared to the most recent one and HOLY MOLY what a difference!!! On the first scan there was practically more cancer than liver, and now there are just some scattered mets here and there, and they are SO MUCH SMALLER!! It's just a totally different view.

We talked a bit about the differences between the US approach vs the DK approach, and our oncologist said they are more "loose" in the US, whereas in Denmark they only want to do things that have been proven, etc. I much prefer the sound of the US way! Much less robotic and more handling each patient as a separate case. Ok I'm just rambling now. But I just think Jesper is SUCH a trooper to have made it through all 12 cycles and even as I'm writing this, he's at the gym working on regaining some muscle mass. We're definitely not giving up!! I think we can find someone who can scoop out those little mets. (if only it were that easy!! But you know what I mean)

In other news, Jesper signed me up for the X factor auditions over here. Yikes. Whatever makes him happy, I'll do it I guess! I got through the first two rounds of pre-casting, and tomorrow I get to meet the judges. HAHA! I'm sure it'll be a laugh, whatever happens.

[AlexandraZ]

Just an update from us - we are in Mexico, having a great time. But we all got food poisoning for 3 days. Poor Jesper lost 8 pounds in 3 days, after working so hard to gain those pounds after chemo! But now he's ok again, and even going to a local gym here.

Just our luck!! I've backpacked through large parts of Asia and South America without ever getting sick, and then we had to get E. coli here. But like I said, we're having a wonderful time here.

[AlexandraZ]

Hi all,

I hope you had a wonderful Christmas or any other holiday you are celebrating.

Jesper got the flu on the 23rd (I blame the Christmas shopping - so many people everywhere!) and had a fever of about 104 degrees for all of Christmas. Poor boy!! The only bright side was that his blood tests were good enough that they didn't need to hospitalize him. His immune system was strong enough that they weren't worried. Yesterday, however, his platelets were down as well as his white blood cells. So for the first time, he's had a chemo postponed. It's going to be his third infusion of FOLFOX + Avastin and I'm worried about it being postponed for a whole week. Would that give his cancer a chance to become resistant or am I worrying too much? Also, his LDH is at about 350, higher than before. The nurse we spoke to said it could be because of his flu.

We haven't gotten his CEA back yet. After he started on FOLFOX it jumped from 1300 to 2700. A bit of googling taught me that this is called a CEA flare and doesn't have to be a bad thing - it can happen, especially on oxaliplatin-based chemo regimens. But of course I'm still stressing out. I have the flu too now and there are so many people announcing engagements and pregnancies and I'm looking back at 2019 as a nightmare of a year. Anyway. Anyone have any input? Should I be stressing out?

[rachelfromnyc]

Sorry to hear both you and Jesper have the flu but glad that it wasn't so severe for Jesper that he had to be hospitalized. I have a little experience in chemo delays while I was on FOLFOX over the summer so I thought I'd share. I had two one week delays. The first was for low counts. Before starting any chemo, I was already in the low end of the normal range so going into treatment #3, my counts had fallen below what's needed to move forward. The second delay was for a commitment I made pre diagnosis in which I had to go out of town. Of course, I was nervous and asked what difference a week made. My oncologist assured me that this kind of situation wasn't unusual and that one week doesn't make a difference. She did however start me on Neulasta and I have a shot each time after disconnect. Since then, I've had no issues and my treatment schedule is more predictable. So less stress there! Is the doctor recommending the same or are you just waiting for the counts to come back up naturally?

[AlexandraZ]

Sorry to hear both you and Jesper have the flu but glad that it wasn't so severe for Jesper that he had to be hospitalized. I have a little experience in chemo delays while I was on FOLFOX over the summer so I thought I'd share. I had two one week delays. The first was for low counts. Before starting any chemo, I was already in the low end of the normal range so going into treatment #3, my counts had fallen below what's needed to move forward. The second delay was for a commitment I made pre diagnosis in which I had to go out of town. Of course, I was nervous and asked what difference a week made. My oncologist assured me that this kind of situation wasn't unusual and that one week doesn't make a difference. She did however start me on Neulasta and I have a shot each time after disconnect. Since then, I've had no issues and my treatment schedule is more predictable. So less stress there! Is the doctor recommending the same or are you just waiting for the counts to come back up naturally?

Thanks so much for your reply Rachel! Interesting that your third infusion had to be delayed too. Jesper has never had trouble with his counts before, so I think they are counting on them coming back up during the next week. Actually his counts were fine AFTER the chemo when he first got sick. But after three days with such a high fever, they were low. So I think fighting the flu for three days exhausted his immune system, if that makes sense. The nurse wasn't worried as such, she just stressed that if his fever came back we have to call them, as he would need to be hospitalized at that point, with his counts being low.

Since we haven't had any previous experience with low counts, I don't even know if his are far off or just a little low. His platelets are about 95 which I guess is pretty low. The others are just below the normal limit.

[claudine]

Sorry about Jesper getting sick, that sounds miserable! As far as neutropenia resulting in chemo delays, my husband has had this happening several times (3 I think?) over his 18 cycles of Folfiri/Avastin. Each time, the counts rebounded after a week break, and there was never any problems with cancer suddenly progressing because of the delay. He even had a 4 week break last summer while we were traveling abroad, without any negative consequences, so I’m sure that Jesper will be fine, too!

[AlexandraZ]

Sorry about Jesper getting sick, that sounds miserable! As far as neutropenia resulting in chemo delays, my husband has had this happening several times (3 I think?) over his 18 cycles of Folfiri/Avastin. Each time, the counts rebounded after a week break, and there was never any problems with cancer suddenly progressing because of the delay. He even had a 4 week break last summer while we were traveling abroad, without any negative consequences, so I’m sure that Jesper will be fine, too!

Thanks Claudine! That's very reassuring. Best of luck to you and your husband!

[Rock_Robster]

Hi Alex,

Merry Christmas! So sorry to hear he had to spend it sick.

But yes - a week’s delay of FOLFOX is nothing. Obviously if it happened every cycle it could end up having an effect, but occasionally is fine. My onc mentioned that the impacts of oxaliplatin on the cell replication cycle continue for about 4-6 weeks after treatment, so this made me feel better too.

I have also heard that CEA flares are common early in oxaliplatin treatment, so hopefully this is the case here!

Hope you guys have a good new year.

Cheers
Rob

[Siti]

Hi Alexandria,

My husband had to postpone his chemo by 1 week on his 3rd infusion too — it was due to severe diarrhoea and high fever. On the bright side, he had a good CT scan after his 3rd infusion so I guess 1 week didn’t impact the results negatively, but quite the opposite.

His platelets have been always borderline low during chemo and funny enough he doesn’t usually eat meat, but he was encouraged to eat more meat and also chicken liver. So I’ve been cooking food that are good for blood. Whether it helps or not god knows and to be honest, there’s no right or wrong, we shouldn’t let the stress ruin our wellbeing too... I fell sick 1-2 weeks ago because of it and my husband had to take care of me instead :/

I hope 2020 would be better for us all.

Siti

[AlexandraZ]

Hi Alex,

Merry Christmas! So sorry to hear he had to spend it sick.

But yes - a week’s delay of FOLFOX is nothing. Obviously if it happened every cycle it could end up having an effect, but occasionally is fine. My onc mentioned that the impacts of oxaliplatin on the cell replication cycle continue for about 4-6 weeks after treatment, so this made me feel better too.

I have also heard that CEA flares are common early in oxaliplatin treatment, so hopefully this is the case here!

Hope you guys have a good new year.

Cheers
Rob

Good to hear from you, Rob! Merry Christmas to you too.

I'm so glad to hear that everyone so far says a week won't matter. And good to know that about oxaliplatin too!

I do hope it's just a CEA flare! His newest CEA was 2600, up from 2500. I just don't see how it could be anything else... If it took 10 weeks off chemo for it go to up from 210 to 1300, surely it wouldn't just up to 2500 in a few weeks ON chemo? I alternate between freaking myself out and then talking myself off the ledge. Hope I'm right.

Did you have your second resection?? Wasn't that scheduled for December?