The Colon Club

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.

Are you MSI or MSS?

Cynthia

Jack&KatiesMommy wrote:Are you MSI or MSS?

MSS

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

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!

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?

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.

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

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

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!

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

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.

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.

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.

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.