Liver and lung mets

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: Liver and lung mets

Postby juliej » Thu Sep 05, 2019 3:45 pm

AlexandraZ wrote:
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?

I'm glad you filled out the form requesting a consultation at MSKCC! :D You also might try getting a referral from your local oncologist directly to Dr. Kemeny. That's seems to speed things up. If she agrees to see Jesper, you'll be told a list of things she needs - CT scan results, tumor samples, etc. They'll explain how to get everything she needs, so there's no need to worry about that now.

There is also an ongoing clinical trial for the HAI pump at MSKCC. That might be a possibility if your insurance won't work in the US. Clinical trials are federally or privately funded, so there is usually no cost to the participant.

Here's the link: https://clinicaltrials.gov/ct2/show/NCT03693807

Jesper's genetic profile sounds a lot like mine - KRAS and BRAF wild type, no Lynch syndrome. :D I am normal MSS too. I frequently told my doctors I was healthy as a horse, except for having cancer! In fact, it was difficult for me to get a colonoscopy at first because the doctor kept saying I was too young and healthy to have colon cancer. :roll:

As someone mentioned, Keytruda is indeed being used for some MSS patients. In fact, there are several clinical trials for MSS patients going on right now, like this one that uses Keytruda, Xeloda, and Avastin: https://clinicaltrials.ucsf.edu/trial/NCT03396926. Hopefully they'll either figure out a way to use Keytruda or come up with another checkpoint inhibitor for MSS patients in the near future.

I'm a bit worried about Jesper getting a 3-month break. That's a long time for a Stage 4 patient. A short break might be needed to lessen the side-effects of the Folfiri and Vectibix combo (that's some heavy shit!). And truthfully, after that many infusions, he'll still have 5FU in his system for awhile even after he stops taking it. But any kind of long break can allow the tumors to grow so be aware of that. I will cross my fingers (and toes!) that he has a good scan and gets a little reprieve though!

Sending good thoughts your way!
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

AlexandraZ
Posts: 49
Joined: Fri Aug 23, 2019 8:25 am

Re: Liver and lung mets

Postby AlexandraZ » Thu Sep 05, 2019 5:25 pm

juliej wrote:
AlexandraZ wrote:
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?

I'm glad you filled out the form requesting a consultation at MSKCC! :D You also might try getting a referral from your local oncologist directly to Dr. Kemeny. That's seems to speed things up. If she agrees to see Jesper, you'll be told a list of things she needs - CT scan results, tumor samples, etc. They'll explain how to get everything she needs, so there's no need to worry about that now.

There is also an ongoing clinical trial for the HAI pump at MSKCC. That might be a possibility if your insurance won't work in the US. Clinical trials are federally or privately funded, so there is usually no cost to the participant.

Here's the link: https://clinicaltrials.gov/ct2/show/NCT03693807

Jesper's genetic profile sounds a lot like mine - KRAS and BRAF wild type, no Lynch syndrome. :D I am normal MSS too. I frequently told my doctors I was healthy as a horse, except for having cancer! In fact, it was difficult for me to get a colonoscopy at first because the doctor kept saying I was too young and healthy to have colon cancer. :roll:

As someone mentioned, Keytruda is indeed being used for some MSS patients. In fact, there are several clinical trials for MSS patients going on right now, like this one that uses Keytruda, Xeloda, and Avastin: https://clinicaltrials.ucsf.edu/trial/NCT03396926. Hopefully they'll either figure out a way to use Keytruda or come up with another checkpoint inhibitor for MSS patients in the near future.

I'm a bit worried about Jesper getting a 3-month break. That's a long time for a Stage 4 patient. A short break might be needed to lessen the side-effects of the Folfiri and Vectibix combo (that's some heavy shit!). And truthfully, after that many infusions, he'll still have 5FU in his system for awhile even after he stops taking it. But any kind of long break can allow the tumors to grow so be aware of that. I will cross my fingers (and toes!) that he has a good scan and gets a little reprieve though!

Sending good thoughts your way!
Juliej


Thank you Juliej!

I am worried about Jesper's small increase in CEA and I HOPE it's just one of the fluctuations we have heard are normal. We've been told the CEA can fluctuate a little, but it's the first time his goes up. From 70,000 it's just been going down, down, down. But maybe now that it's down in the low hundreds it's just slowing down a bit.

I checked the clinical trial for the HAI pump and one of the exclusion criteria is extra-hepatic spread. Oh well. But I'd like to go there, get a second opinion and see what they recommend. Then we can see what the next step would be. Do you think it would be better for me to call them? I guess I could wait a few days and see if I hear from them.

Did you do 14 months of chemo without any breaks? How come you didn't get the HAI pump before? And did first-line chemo work for 14 months with no progression? I'm so curious about everything.

I understand your concern about the 3-month break. That's the length of break his oncologist suggested, but maybe we should keep getting his CEA taken once a month and if it starts climbing, shorten the break? Although he's handling it all SO well, it IS a rough chemo cocktail and I hate to see him go through it every two weeks. He deserves a break, he really does. I don't know how you did 14 months, that seems like such a long time. Did you lose a lot of weight? Jesper has a super-fast metabolism and we have to make sure he eats a lot and works out on his good weeks (non-chemo weeks) to keep his weight up. To a stranger he looks healthy, but he's lost quite a lot of muscle and the Vectibix has messed up his skin and given him the darkest, thickest lashes and eyebrows. Such strange side effects! A lot of people have told us they thought he was wearing mascara :roll:

I hope you don't mind all my questions! I'm just so curious, and your diagnosis sounds so very similar to Jesper's!
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!

Amarie123
Posts: 34
Joined: Wed Nov 14, 2018 6:46 am

Re: Liver and lung mets

Postby Amarie123 » Thu Sep 05, 2019 6:49 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 there! I have liver and lung mets as well. I am unusual in that I cannot tolerate any chemo with 5FU due to cardiac toxicity. I also have the KRAS mutation so my treatment options are somewhat limited. I went through 9 rounds of IROX, which initially worked, then stopped. I was then part of a clinical trial of radiation and Lonsurf together. Now I will stay on the Lonsurf, potentially with the addition of Avastin if insurance approves. Good luck!

Rock_Robster
Posts: 349
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Liver and lung mets

Postby Rock_Robster » Thu Sep 05, 2019 7:53 pm

I don’t know how large his lung mets are, although you mentioned they are ‘numerous’, the HAI trial at NIH in Maryland allows for a max 5 lung lesions greater than 1cm. So if most are smaller, perhaps he could still qualify? This trial is actively recruiting and also includes travel/accommodation expenses, if that’s a factor.

https://clinicaltrials.gov/ct2/show/NCT03366155
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
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, TRG 3
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 & stoma reversal

Butt
Posts: 25
Joined: Mon Mar 11, 2019 10:48 pm

Re: Liver and lung mets

Postby Butt » Thu Sep 05, 2019 8:30 pm

Ok. They do not do liver resection and HAI pump if cancer is somewhere else. US is the only country that does pumps. I have one. Dr. Drewes is not going to do lungs if things are in the liver. I talked to him. It is catch 22. Butt.

Rock_Robster
Posts: 349
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Liver and lung mets

Postby Rock_Robster » Thu Sep 05, 2019 8:47 pm

Butt wrote:US is the only country that does pumps.

The Netherlands also has an HAI trial in Rotterdam, using a German pump.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
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, TRG 3
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 & stoma reversal

AlexandraZ
Posts: 49
Joined: Fri Aug 23, 2019 8:25 am

Re: Liver and lung mets

Postby AlexandraZ » Fri Sep 06, 2019 2:47 am

Rock_Robster wrote:I don’t know how large his lung mets are, although you mentioned they are ‘numerous’, the HAI trial at NIH in Maryland allows for a max 5 lung lesions greater than 1cm. So if most are smaller, perhaps he could still qualify? This trial is actively recruiting and also includes travel/accommodation expenses, if that’s a factor.

https://clinicaltrials.gov/ct2/show/NCT03366155


Oh thank you, that's very helpful! Jesper's lung mets are all smaller than 1 cm. I think the biggest one was 1.3 cm at diagnosis, but it is now 0.8 cm (the lung mets seem to shrink less than the liver mets for some reason). I will contact them and see if he would be eligible.
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: 49
Joined: Fri Aug 23, 2019 8:25 am

Re: Liver and lung mets

Postby AlexandraZ » Fri Sep 06, 2019 2:50 am

Amarie123 wrote:
Hi there! I have liver and lung mets as well. I am unusual in that I cannot tolerate any chemo with 5FU due to cardiac toxicity. I also have the KRAS mutation so my treatment options are somewhat limited. I went through 9 rounds of IROX, which initially worked, then stopped. I was then part of a clinical trial of radiation and Lonsurf together. Now I will stay on the Lonsurf, potentially with the addition of Avastin if insurance approves. Good luck!


Hi Amarie,

I understand! Jesper had some chest cramps during his first infusions and the doctors thought it was cardiotoxicity at first. He was hospitalized and monitored with EKG and specific blood tests. They found no evidence of heart damage, so decided it most likely wasn't directly related to the heart. So he's carried on with his 5-FU and the cramps have gotten better. (we now think it is either super intense reflux or some reaction from the lung mets).

Have you had any surgeries? Are you eligible for any kind of resection?
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!

Rock_Robster
Posts: 349
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Liver and lung mets

Postby Rock_Robster » Fri Sep 06, 2019 3:12 am

AlexandraZ wrote:
Rock_Robster wrote:I don’t know how large his lung mets are, although you mentioned they are ‘numerous’, the HAI trial at NIH in Maryland allows for a max 5 lung lesions greater than 1cm. So if most are smaller, perhaps he could still qualify? This trial is actively recruiting and also includes travel/accommodation expenses, if that’s a factor.

https://clinicaltrials.gov/ct2/show/NCT03366155


Oh thank you, that's very helpful! Jesper's lung mets are all smaller than 1 cm. I think the biggest one was 1.3 cm at diagnosis, but it is now 0.8 cm (the lung mets seem to shrink less than the liver mets for some reason). I will contact them and see if he would be eligible.

No worries - good luck!
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
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, TRG 3
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 & stoma reversal

Amarie123
Posts: 34
Joined: Wed Nov 14, 2018 6:46 am

Re: Liver and lung mets

Postby Amarie123 » Fri Sep 06, 2019 5:39 am

AlexandraZ wrote:
Amarie123 wrote:
Hi there! I have liver and lung mets as well. I am unusual in that I cannot tolerate any chemo with 5FU due to cardiac toxicity. I also have the KRAS mutation so my treatment options are somewhat limited. I went through 9 rounds of IROX, which initially worked, then stopped. I was then part of a clinical trial of radiation and Lonsurf together. Now I will stay on the Lonsurf, potentially with the addition of Avastin if insurance approves. Good luck!


Hi Amarie,

I understand! Jesper had some chest cramps during his first infusions and the doctors thought it was cardiotoxicity at first. He was hospitalized and monitored with EKG and specific blood tests. They found no evidence of heart damage, so decided it most likely wasn't directly related to the heart. So he's carried on with his 5-FU and the cramps have gotten better. (we now think it is either super intense reflux or some reaction from the lung mets).

Have you had any surgeries? Are you eligible for any kind of resection?


I’m glad there was no damage to his heart! I went to the ER the first time and then had my next infusion done inpatient and was pre treated with cardiac meds. Still had severe chest pain with heart damage. I had sigmoid colectomy for the initial tumor. With mets to both lungs and liver surgery is not an option. We’re hoping the radiation plus Lonsurf (a chemo drug) did the trick but if not there is also the option of ablation. The lung mets is growing at a much slower rate than the liver, so that gives some time. And one cycle of Lonsurf may not have been enough to see effects on the lung lesions. Those are all still small, with only one being 1 cm. The liver was almost 4 cm and grew fast (some of my cells are aggressive type) so like Insaid, the hope is the SBRT radiation will keep doing it’s job. The tumor didn’t grow during the trial so that’s promising.

User avatar
juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: Liver and lung mets

Postby juliej » Mon Sep 09, 2019 4:20 pm

AlexandraZ wrote:
Thank you Juliej!

I am worried about Jesper's small increase in CEA and I HOPE it's just one of the fluctuations we have heard are normal. We've been told the CEA can fluctuate a little, but it's the first time his goes up. From 70,000 it's just been going down, down, down. But maybe now that it's down in the low hundreds it's just slowing down a bit.

I checked the clinical trial for the HAI pump and one of the exclusion criteria is extra-hepatic spread. Oh well. But I'd like to go there, get a second opinion and see what they recommend. Then we can see what the next step would be. Do you think it would be better for me to call them? I guess I could wait a few days and see if I hear from them.

Did you do 14 months of chemo without any breaks? How come you didn't get the HAI pump before? And did first-line chemo work for 14 months with no progression? I'm so curious about everything.

I understand your concern about the 3-month break. That's the length of break his oncologist suggested, but maybe we should keep getting his CEA taken once a month and if it starts climbing, shorten the break? Although he's handling it all SO well, it IS a rough chemo cocktail and I hate to see him go through it every two weeks. He deserves a break, he really does. I don't know how you did 14 months, that seems like such a long time. Did you lose a lot of weight? Jesper has a super-fast metabolism and we have to make sure he eats a lot and works out on his good weeks (non-chemo weeks) to keep his weight up. To a stranger he looks healthy, but he's lost quite a lot of muscle and the Vectibix has messed up his skin and given him the darkest, thickest lashes and eyebrows. Such strange side effects! A lot of people have told us they thought he was wearing mascara :roll:

I hope you don't mind all my questions! I'm just so curious, and your diagnosis sounds so very similar to Jesper's!

Oh, I should have thought of checking the criteria for the HAI pump clinical trial. :roll: It seemed like such a good idea at the time, plus a way to save you the expense! :(

Yes, I did 14 months of chemo without any breaks. It continued to work on me with no progression for the entire time, although the tumor shrinkage was slowing down quite a bit during the last few months. I live on the west coast of the United States and my local oncologist's plan was to give me chemo for life or until it quit working, in which case he would send me to hospice. I felt like since I was young and had such a good response to chemo that someone somewhere would be willing to see me as more than a Stage 4 patient with no options except endless chemo! :evil:

So.... I flew to NYC, got a consultation with Dr. Kemeny, and she met with her team of surgeons. They said, contrary to my local oncologist's advice, that I was a good candidate for surgery and the HAI pump! :D Six weeks later I moved to New York City, rented an apartment, and had my first surgery (removal of primary tumor, HAI pump implanted, and liver resection). It was an extensive surgery (almost 8 hours long), but they thought I was healthy enough to handle it.

After I recovered from that surgery, I went back on chemo, including chemo in the HAI pump. Then three months later I had double lung surgery to remove the mets from my lungs, plus an ileostomy reversal. I had adjuvant chemo afterwards to ensure nothing came back. I am currently NED and have been for some time now. I still shudder to think what might have happened if I'd stayed with my first oncologist! Dr. Kemeny and MSKCC saved my life - I have no doubt of that. I had a horrible diagnosis: multiple mets in my liver and lungs. I remember being shocked when I was told I was Stage 4B and there wasn't a Stage 4C! :shock:

I did lose weight on chemo and since I was lean to start with, it wasn't good. I had to make myself eat even though chemo made everything taste like cardboard. Ugh. I tried nibbling on Goldfish crackers between meals to keep the nausea under control. I kept working out the entire time, but of course I had to lower my standards. My usual 10 mile run became 6 miles and then 3 miles and sometimes just a 1 mile walk if I was feeling especially lousy. But I do think exercising was good for me for multiple reasons - it stimulated my appetite (often I wasn't hungry at all until I came back from a run) and it gave me a way to deal with the anxiety and tension that goes hand-in-hand with that kind of diagnosis. Sometimes it's all too much for the mind to handle and when I exercised my body was flooded with endorphins that improved my mood.

Tell Jesper I know the side-effects suck (well, maybe except for the long, thick lashes!), but it helps to remember that if you feel lousy, think how the cancer feels! The chemo is literally killing those tumors, which is the goal. It it were me, I would definitely keep checking his CEA during the break and if it started rising too high then get a CT scan and see if things are growing. You never want to let cancer get the upper hand.

See if you can get your oncologist to give you a referral to Dr. Kemeny. It's the fastest route to seeing her. Then you can see if she thinks the HAI pump will help him. Also, you are an amazing person for giving Jesper so much support!!! Maybe we'll get to meet in NYC one day. I'll be there in October too.

Hugs to you!
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

AlexandraZ
Posts: 49
Joined: Fri Aug 23, 2019 8:25 am

Re: Liver and lung mets

Postby AlexandraZ » Tue Sep 10, 2019 10:41 am

juliej wrote:Oh, I should have thought of checking the criteria for the HAI pump clinical trial. :roll: It seemed like such a good idea at the time, plus a way to save you the expense! :(

Yes, I did 14 months of chemo without any breaks. It continued to work on me with no progression for the entire time, although the tumor shrinkage was slowing down quite a bit during the last few months. I live on the west coast of the United States and my local oncologist's plan was to give me chemo for life or until it quit working, in which case he would send me to hospice. I felt like since I was young and had such a good response to chemo that someone somewhere would be willing to see me as more than a Stage 4 patient with no options except endless chemo! :evil:

So.... I flew to NYC, got a consultation with Dr. Kemeny, and she met with her team of surgeons. They said, contrary to my local oncologist's advice, that I was a good candidate for surgery and the HAI pump! :D Six weeks later I moved to New York City, rented an apartment, and had my first surgery (removal of primary tumor, HAI pump implanted, and liver resection). It was an extensive surgery (almost 8 hours long), but they thought I was healthy enough to handle it.

After I recovered from that surgery, I went back on chemo, including chemo in the HAI pump. Then three months later I had double lung surgery to remove the mets from my lungs, plus an ileostomy reversal. I had adjuvant chemo afterwards to ensure nothing came back. I am currently NED and have been for some time now. I still shudder to think what might have happened if I'd stayed with my first oncologist! Dr. Kemeny and MSKCC saved my life - I have no doubt of that. I had a horrible diagnosis: multiple mets in my liver and lungs. I remember being shocked when I was told I was Stage 4B and there wasn't a Stage 4C! :shock:

I did lose weight on chemo and since I was lean to start with, it wasn't good. I had to make myself eat even though chemo made everything taste like cardboard. Ugh. I tried nibbling on Goldfish crackers between meals to keep the nausea under control. I kept working out the entire time, but of course I had to lower my standards. My usual 10 mile run became 6 miles and then 3 miles and sometimes just a 1 mile walk if I was feeling especially lousy. But I do think exercising was good for me for multiple reasons - it stimulated my appetite (often I wasn't hungry at all until I came back from a run) and it gave me a way to deal with the anxiety and tension that goes hand-in-hand with that kind of diagnosis. Sometimes it's all too much for the mind to handle and when I exercised my body was flooded with endorphins that improved my mood.

Tell Jesper I know the side-effects suck (well, maybe except for the long, thick lashes!), but it helps to remember that if you feel lousy, think how the cancer feels! The chemo is literally killing those tumors, which is the goal. It it were me, I would definitely keep checking his CEA during the break and if it started rising too high then get a CT scan and see if things are growing. You never want to let cancer get the upper hand.

See if you can get your oncologist to give you a referral to Dr. Kemeny. It's the fastest route to seeing her. Then you can see if she thinks the HAI pump will help him. Also, you are an amazing person for giving Jesper so much support!!! Maybe we'll get to meet in NYC one day. I'll be there in October too.

Hugs to you!
Juliej


Wow Juliej, you are such an inspiration!! Thank you so much for telling me about your story. I'm so glad you decided to get a second opinion!

14 months straight is intense!!! I'm surprised you were even well enough to fly to NYC after getting chemo for so long. Were you on FOLFIRI or FOLFOX? Jesper does pretty well and works out on his "good weeks" (the week before the next chemo), but on the chemo days and the following days all he can do is take a walk, normally. Luckily he has no problem eating a lot (he still eats at least twice as much as I do!)

I relayed your message to him and he laughed :lol: Good thing to remember that the cancer is miserable too!

I have a few more questions, I hope that's ok! Let me know if I should PM you instead. Or if you've already written the same thing to other people before, maybe you could let me know where to find it?

How many lung mets did you have when you were diagnosed? And how did they respond to the initial 14 months of chemo? Were you already eligible for lung surgery when you got to MSK? I'm asking because Jesper's lung mets are small and numerous, and kind of scattered throughout his lungs. How did your liver mets respond? I recall that you had mets in all segments. How was that after the 14 months? And how was your CEA? (at diagnosis, after the 14 months, before surgery, etc)

Sorry I have so many questions! You are the person with the most similar diagnosis to Jesper's that I've come across. Similar diagnosis, mutations (or lack thereof), age/health, etc. So I'm so so happy to hear about your amazing success story. :D

Hugs!
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: 135
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Liver and lung mets

Postby Claudine » Tue Sep 10, 2019 10:59 am

Alexandraz, my husband also has a multitude of tiny lung mets. He's done 12 sessions of Folfiri + Avastin so far (6 months) and at the 6-session scan they were all shrinking (the biggest one went from 5mm to 2mm) or remained tiny (<2mm). He's got another scan on Monday, hopefully the chemo is still doing its trick on them!
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, 17, 10, 6.4, 5, 4.8, 4.2, 3.6, 3.2, 3.3, 3.2, 3.7, 4.3, 4.2, 4.2, 5.0
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

AlexandraZ
Posts: 49
Joined: Fri Aug 23, 2019 8:25 am

Re: Liver and lung mets

Postby AlexandraZ » Tue Sep 10, 2019 11:05 am

Claudine wrote:Alexandraz, my husband also has a multitude of tiny lung mets. He's done 12 sessions of Folfiri + Avastin so far (6 months) and at the 6-session scan they were all shrinking (the biggest one went from 5mm to 2mm) or remained tiny (<2mm). He's got another scan on Monday, hopefully the chemo is still doing its trick on them!


That's amazing, Claudine!

Jesper's lung mets have shrunk slightly, but from the scan after 4 rounds to the next one after 8 rounds, there wasn't much change. We were at the hospital this morning for his scan after 12 rounds. We get the results in a week, fingers crosses. His biggest met in the lung was 1cm at the last CT scan. I hope your husband's lung mets keep shrinking or even disappear!
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: 49
Joined: Fri Aug 23, 2019 8:25 am

Re: Liver and lung mets

Postby AlexandraZ » Sat Sep 14, 2019 4:30 pm

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!
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!


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 32 guests