Lung metastasis - advice and hope needed

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Megrmcd13
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Joined: Tue Aug 20, 2019 2:13 pm
Facebook Username: Meghan O’Brien McDermott

Lung metastasis - advice and hope needed

Postby Megrmcd13 » Tue Aug 20, 2019 2:15 pm

Hi all! I could really use some stories of hope right now as we just got news that the small lung spots that they had been monitoring seemed to have grown in the time my husband was off of chemo recovering from rectal surgery / liver ablation. He had completed 12 rounds of chemo (4 of folfox, 4 of folfoxiri, and most recently 4 of folfiri). The surgeon broke the news to us and we meet with the oncologist tomorrow AM. The colorectal surgeon told us to stay positive because he is, but it’s really hard to feel positive right now.

I would really appreciate if you all can share 1) your experience with treatment of lung metastasis and 2) anyone who has beat this and what treatment it took to get you there 3) any questions we should ask the oncologist tomorrow.

Thanks in advance!!!

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juliej
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Joined: Thu Aug 05, 2010 12:59 pm

Re: Lung metastasis - advice and hope needed

Postby juliej » Tue Aug 20, 2019 7:13 pm

I beat it! :D :D :D

I had both lung and liver mets at diagnosis (along with a good-size rectal tumor). I had surgery for the liver mets first (along with removal of the rectal tumor) and then my oncologist quickly put me back on chemo. Three months later I had double lung surgery to remove the mets from both lungs plus an ileostomy reversal.

It sounds like your husband had a good response to the first wave of chemo so there's no reason to think he won't respond again. Once the lung mets start shrinking your oncologist can arrange for an appointment with a thoracic surgeon to see if they can be removed via surgery or RFA.

Tomorrow ask the oncologist how much the mets have grown (percentage-wise) and if he plans to use the same chemo regimen again. Also ask what is your husband's CEA so you can see if it's elevated. Ask if the mets shrink (after a few rounds of chemo) if your husband can be referred to a thoracic surgeon for lung surgery or to an IR doc for an RFA evaluation.

Be strong and don't lose hope. Sometimes you don't realize your own strength until you have no choice but to be strong. I'm proof that good things can happen in the darkest moments!

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/13/2019, CEA<1

Megrmcd13
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Joined: Tue Aug 20, 2019 2:13 pm
Facebook Username: Meghan O’Brien McDermott

Re: Lung metastasis - advice and hope needed

Postby Megrmcd13 » Tue Aug 20, 2019 8:55 pm

Julie - Thanks for sharing your story and advice! Your story seeks similar to ours so praying that we have the same outcome as you have. We just finished the 12th planned round of systemic chemo with 3 more through the hai pump and finally felt like we’d be able to breathe a little. The lung spots definitely through us through a loop although his CEA had been slightly rising (from 1 right after surgery to 2.8). My husband has done all of his surgery at MSKCC and his chemo at Penn since we live in Philly (with input from sloan). Definitely nervous about the next steps, but hoping that this is just another road bump to ultimately get to NED.

stu
Posts: 1183
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lung metastasis - advice and hope needed

Postby stu » Wed Aug 21, 2019 2:36 am

My mum had a few, but only one turned out to be a met . It was surgically removed in 2016 I think ! No chemo .
It was by far the easiest surgery . Vats I think .
Her lung function is good .
Wishing your husband every success ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Megrmcd13
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Joined: Tue Aug 20, 2019 2:13 pm
Facebook Username: Meghan O’Brien McDermott

Re: Lung metastasis - advice and hope needed

Postby Megrmcd13 » Wed Aug 21, 2019 10:48 am

Thanks everyone! We met with our oncologist at Penn this motioning and he seems to want to keep Brendan on folfiri. All docs / surgeons are ok with Brendan getting his illeostomy reversed and starting chemo after that. We are going to meet with the oncologist at MSKCC (where our surgeons are) because I don’t know how I feel about continuing on the folfiri which at best stabilized the nodules and at worst allows them to grow. Is it unreasonable to think that we should able to get to ablation or radiation for 6 very small Mets? Thanks!!

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juliej
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Joined: Thu Aug 05, 2010 12:59 pm

Re: Lung metastasis - advice and hope needed

Postby juliej » Wed Aug 21, 2019 5:10 pm

Megrmcd13 wrote:Thanks everyone! We met with our oncologist at Penn this motioning and he seems to want to keep Brendan on folfiri. All docs / surgeons are ok with Brendan getting his illeostomy reversed and starting chemo after that. We are going to meet with the oncologist at MSKCC (where our surgeons are) because I don’t know how I feel about continuing on the folfiri which at best stabilized the nodules and at worst allows them to grow. Is it unreasonable to think that we should able to get to ablation or radiation for 6 very small Mets? Thanks!!

With lung mets (like real estate! :D ) it's all about location, location, location! Some can be removed with surgery. VATS is best if possible instead of a full thoracotomy. That's how mine were removed and the recovery time is much faster. Radio Frequency Ablation (RFA) is another possibility especially if they are small and not located too close to a major pulmonary artery. Stereotactic body radiotherapy (SBRT) is another choice. Basically it delivers small doses of radiation to the mets. Personally I wouldn't recommend it because of the collateral damage to healthy lung tissue. Some members here have noticed diminished lung capacity after SBRT.

I would ask for a referral to a lung surgeon and IR doc at MSK to get their opinion on the location of the mets. Dr. James Huang is my lung surgeon. He is truly brilliant and very personable! And Dr. Solomon is fantastic for RFA procedures. See if you can get a consultation with them. I'll put links to their web pages below.

Who is your oncologist at MSK? I have Dr. Kemeny at MSK and then a local oncologist on the west coast who follows her orders. I feel better with MSK calling the shots because they are the ones who believed I could be helped when no one else did.

https://www.mskcc.org/cancer-care/doctors/james-huang

https://www.mskcc.org/cancer-care/doctors/stephen-solomon

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/13/2019, CEA<1

Megrmcd13
Posts: 5
Joined: Tue Aug 20, 2019 2:13 pm
Facebook Username: Meghan O’Brien McDermott

Re: Lung metastasis - advice and hope needed

Postby Megrmcd13 » Thu Aug 22, 2019 8:56 am

We are meeting with Dr. Ku at MSK and met with him in the past. We’re in somewhat of unique situation as my husband got his pump installed at MSK, but has seen an oncologist at Penn. I will definitely reach out to both doctors and try to get consults scheduled. My husband is young and otherwise in great health, so I don’t want to just sit back and hope that chemo works.

kandj
Posts: 258
Joined: Sun Sep 27, 2015 11:29 am

Re: Lung metastasis - advice and hope needed

Postby kandj » Thu Aug 22, 2019 6:44 pm

Dr. Kemeny likes to use Dr. Park for surgeries at MSK and Dr. Solomon for IR stuff (ablation). My Dh had a lung met removed last November. They attempted to ablate it but it was too small to find and due to it being at the bottom of his lung, hard to locate and ablate. The did a lung resection the next day and it was in and out the same day. He was on Xeloda for 6 months after the surgery.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
chemo break, nothing seen on scans 6/19 or 8/19 Hopeful

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

Re: Lung metastasis - advice and hope needed

Postby Butt » Thu Aug 22, 2019 10:42 pm

I have lung mets, Not a subject to surgery and chemo is not cleaning them up. Chemo for life.

Megrmcd13
Posts: 5
Joined: Tue Aug 20, 2019 2:13 pm
Facebook Username: Meghan O’Brien McDermott

Re: Lung metastasis - advice and hope needed

Postby Megrmcd13 » Wed Aug 28, 2019 3:22 pm

Hi all! We got some pretty hopeful news yesterday when we met with the thoracic surgeon at MSKCC. He proposed a 2 part open surgery where he would basically feel around the lungs and cut out any tumors.

My husband had his ileostomy bag reversal scheduled for this Thursday (now postponed - hopefully to next week because he has a stomach bug) and the surgeon wants to wait a month for recovery before chemo or any other procedures, so in a way it’s a blessing to have time to decide what we definitely want to do. The lung surgeon wants to look at scans in a month to see if the Mets are relatively stable or grow only slightly while Brendan is off chemo (in which case we would proceed to surgery) or if more popped up (in which case we’d consider chemo first).

We had to postpone our meeting with the oncologist because of my husband's stomach bug (currently in the hospital getting fluids), but it seemed like he and the thoracic surgeon were on the same page.

A few questions:
-Has anyone had this type of surgery?
-What was the mop up chemo afterwards like?
-Has anyone achieved long term NED with this type of approach?
-Anything else we should consider?


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