Lung specialist at MSK or MDA? Advice, please.

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zephyr
Posts: 250
Joined: Thu Aug 18, 2016 7:31 am

Lung specialist at MSK or MDA? Advice, please.

Postby zephyr » Wed Mar 20, 2019 6:27 pm

After the initial CRC surgery, 2 years of chemo, and 2 thoracotomies, I had a clean CT. Fast forward 3 months and I now have 3 suspicious lung nodules. I was already chemo resistant to everything that would work on my genetic mutations so I need someone who will think outside the box this time around. I'm looking to get a second opinion at either MSK or MDA. Can anyone here recommend a top CRC-lung specialist at either of those hospitals (or any other major cancer center)? Any other advice would be appreciated.

Thanks in advance.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

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Jack&KatiesMommy
Posts: 595
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Lung specialist at MSK or MDA? Advice, please.

Postby Jack&KatiesMommy » Wed Mar 20, 2019 8:32 pm

Are you MSI or MSS?

Cynthia
Cynthia
Mommy to Jack (8) now (16) and Katie (4) now (12)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes lung:
05/18: Keytruda (MSS w/Intermediate TMB): CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8, .8, 1.1, 1.1, .7
7/18; 9/18; 11/18; 2/19 Clear CT scans

zephyr
Posts: 250
Joined: Thu Aug 18, 2016 7:31 am

Re: Lung specialist at MSK or MDA? Advice, please.

Postby zephyr » Wed Mar 20, 2019 8:53 pm

Jack&KatiesMommy wrote:Are you MSI or MSS?


MSS
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

User avatar
Jack&KatiesMommy
Posts: 595
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Lung specialist at MSK or MDA? Advice, please.

Postby Jack&KatiesMommy » Thu Mar 21, 2019 10:06 am

Have you had your Tumor Mutation Burden tested? I won't go into the whole story here but I am MSS also and because I had my tumor tested at Foundation One they also determined my Tumor Mutation Burden. I had 12 mutations which was a lot for an MSS tumor. So because of that my oncologist got permission to use Keytruda off-label (normally they don't use it on MSS patients) and it is working for me. Is this a possibility for you?
Cynthia
Cynthia
Mommy to Jack (8) now (16) and Katie (4) now (12)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes lung:
05/18: Keytruda (MSS w/Intermediate TMB): CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8, .8, 1.1, 1.1, .7
7/18; 9/18; 11/18; 2/19 Clear CT scans

zephyr
Posts: 250
Joined: Thu Aug 18, 2016 7:31 am

Re: Lung specialist at MSK or MDA? Advice, please.

Postby zephyr » Thu Mar 21, 2019 2:26 pm

Jack&KatiesMommy wrote:Have you had your Tumor Mutation Burden tested? I won't go into the whole story here but I am MSS also and because I had my tumor tested at Foundation One they also determined my Tumor Mutation Burden. I had 12 mutations which was a lot for an MSS tumor. So because of that my oncologist got permission to use Keytruda off-label (normally they don't use it on MSS patients) and it is working for me. Is this a possibility for you?


I don't know if my tumor mutation burden has been tested but will find out next week when I meet with my oncologist. Thanks for the information. I also recall seeing a thread you posted about this and will head over to read it now. At the time you wrote it, it didn't apply to my circumstances.

Thanks again!
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

Pyro
Posts: 301
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Lung specialist at MSK or MDA? Advice, please.

Postby Pyro » Thu Mar 21, 2019 7:29 pm

zephyr wrote:After the initial CRC surgery, 2 years of chemo, and 2 thoracotomies, I had a clean CT. Fast forward 3 months and I now have 3 suspicious lung nodules. I was already chemo resistant to everything that would work on my genetic mutations so I need someone who will think outside the box this time around. I'm looking to get a second opinion at either MSK or MDA. Can anyone here recommend a top CRC-lung specialist at either of those hospitals (or any other major cancer center)? Any other advice would be appreciated.

Thanks in advance.


You’ve been through a lot, do you think the surgeons will play wack-a-mole again?
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

zephyr
Posts: 250
Joined: Thu Aug 18, 2016 7:31 am

Re: Lung specialist at MSK or MDA? Advice, please.

Postby zephyr » Thu Mar 21, 2019 8:28 pm

Pyro wrote:
You’ve been through a lot, do you think the surgeons will play wack-a-mole again?


Yes, I've already been in contact with the surgeons and that option is on the table. It's nice to have a good backup plan.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

NedPlease
Posts: 545
Joined: Fri Mar 23, 2012 3:56 pm

Re: Lung specialist at MSK or MDA? Advice, please.

Postby NedPlease » Thu Mar 21, 2019 11:32 pm

David R Jones MD, now at MSKCC, is the thoracic surgeon who performed my VATS (at a different cancer center) and a genius, in my opinion.

Best,
N
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 6/18 Clear Scans
6/19- first time no scan
Today- NED

behconsult
Posts: 245
Joined: Fri Jul 04, 2014 4:53 pm

Re: Lung specialist at MSK or MDA? Advice, please.

Postby behconsult » Fri Mar 22, 2019 8:14 pm

I'm sorry you are dealing with more mets. I do not know about either place; I do know that UCLA has a powerhouse lung program. It is at that location cryo for pulmonary mets was pioneered.

You see Saab and he is pretty knowledgeable and also quite flexible. I fly out this weekend to visit him. Also note that whack-a-mole is not a bad strategy but likely a mix of conventional and unconventional needed to slow/stop the growth along with it. My IM doc believes that the gene therapies being done are so close that it a matter of time. Sending prayers your way! Bob
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

zephyr
Posts: 250
Joined: Thu Aug 18, 2016 7:31 am

Re: Lung specialist at MSK or MDA? Advice, please.

Postby zephyr » Fri Mar 22, 2019 8:17 pm

behconsult wrote:I'm sorry your are dealing with more mets. I do not know about either place. I do know that UCLA has a powerhouse lung program. It is at that location cryo for pulmonary mets was pioneered.

You see Saab and he is pretty knowledgeable and also quite flexible. I fly out this weekend to visit him. Also note that whack-a-mole is not a bad strategy. My IM doc believes that the gene therapies being done are so close that it a matter of time. Sending prayers your way! Bob


Bob, I'm going to email you. Please give me a call when you're settled here. I assume you're seeing him on Monday; me too!
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

mpbser
Posts: 928
Joined: Wed Apr 19, 2017 11:52 am

Re: Lung specialist at MSK or MDA? Advice, please.

Postby mpbser » Sun Mar 24, 2019 6:42 am

David R Jones MD has his very own lab at MSK. From what I had read about him, he is a genius indeed. https://www.mskcc.org/research-areas/labs/david-jones
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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

Re: Lung specialist at MSK or MDA? Advice, please.

Postby Butt » Sun Mar 24, 2019 3:13 pm

Dr, Wayne H. In MDA. I can’t recall his last name. You may want to hurry up because they can do things on max 5/6 mets and if more appear they won t do anything. I am considering YAG in Germany and already sent them my scan. Is there any way I can contact you to ask a few questions about YAG surgery. Thank you. Butt.

zephyr
Posts: 250
Joined: Thu Aug 18, 2016 7:31 am

Re: Lung specialist at MSK or MDA? Advice, please.

Postby zephyr » Sun Mar 24, 2019 7:41 pm

Butt wrote:Dr, Wayne H. In MDA. I can’t recall his last name. You may want to hurry up because they can do things on max 5/6 mets and if more appear they won t do anything. I am considering YAG in Germany and already sent them my scan. Is there any way I can contact you to ask a few questions about YAG surgery. Thank you. Butt.


Thanks. I'll email you through the Board's messaging system.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

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

Re: Lung specialist at MSK or MDA? Advice, please.

Postby Butt » Sun Mar 24, 2019 9:49 pm

How many mets in lungs do you have? I know Univ of Florida has some met program and can do SERT if I spell
It correctly on lungs if the number is under 10. Looking forward talking to you about YAG in Germany and thank you.

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

Re: Lung specialist at MSK or MDA? Advice, please.

Postby Butt » Mon Mar 25, 2019 1:53 pm

Dear Zephyr,
I wasn't allowed to e-mail you direcly because i guess I am new. So, I couldn't find the better solution as to post my questions here....

1. I have an i- phone. How to make it work in Europe. If you need to get a sim card where you get it in Germany?

2. Is there an English speaking channel in the Hospital. How you watch Netflex?

3. Does the Hospital and the Rehab center has a reliable fast-speed Internet?


4. It is my understanding that a person spends a couple weeks in the hospital (assuming no complications), and about a week in a rehabilitation center next door. Where they go after? if it is a hotel, where do they get meals?


5. It is my understanding that the hospital has a guest house for relatives. Is it free and how meals are arranged for family members? Can they eat right there?

6. How close is the nearest supermarket or a gas station where people can buy at least water.

7. I am sure you saw an itemized bill by now. I know it is about 17K USD per lung. I saw somewhere on-line that it is about $1700 for anesthesia, $5000 for a surgeon. How much is the hospital stay and a rehab center? Do we know those items (categories) and the approximate pay. I am asking because my insurance should partially cover the cost but it will be out-of-network. So, I am trying to estimate how much I should pay.


8. Is there a laundry room in a hospital/rehab?

I hope I haven’t forgotten anything but if I did it must be a chemo brain 

Thank you.
Butt.


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