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Multiple tiny mets on lungs—-need knowledge.

Posted: Wed May 29, 2019 5:15 pm
by Butt
I have dozens on tiny mets several mm. All over my lungs. SERB and Vats not an option because of their number. I am on chemo. It appears after 8 sessions 4 slightly increased in size and the rest are there, so chemo is not erasing them.I am MSS. I hate chemo for life prognosis. I sent DR. Drewes In Coswig Germany but he said he wouldn’t take me because he would afraid to miss some tiny ones.Any doctors, hospitals who work with such situation besides chemo for life until it stops working? Butt.

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Thu May 30, 2019 9:50 am
by Claudine
Hi Butt,
As you know from my post my husband also has multiple tiny lung nodules, although his appear to respond to chemo (so far).
Which regimen are you on? Maybe a different chemo would work better? He was on Xelox last year (as a "mop up" treatment) and it didn't work at all, whereas Folfiri + Avastin has been working so far.
"Chemo for life" - I keep hoping for some new development that will have this be only temporary. All the research targeting specific gene mutations is very exciting!
Hang in there XXX
Claudine

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Fri Jun 07, 2019 11:47 pm
by Butt
Folfiri plus Avastin. I am not aware of any other regiments. Xeloda is the same fu 5. I don t see anything promising cooking in a clinical trail kitchens that will be approved soon in relationship to this situation.

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Sun Jun 23, 2019 1:06 am
by Butt
They now want to drop irinetecan.

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Thu Aug 22, 2019 10:54 pm
by Butt
Anyone else who can chip in?

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Fri Aug 23, 2019 12:17 am
by Rock_Robster
Hi Butt, do you know your tumour genomics (mutations)? And did you end up changing from the FOLFIRI+Bev?

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Wed Sep 11, 2019 3:28 am
by henry123
You probably got it tested but what is your MSI status . if if you are a msi-high then you may be a candidate for immunotherapy.
I had innumerable growths on my liver and a few on lungs but nivolumab worked for me.
I am MSI High.

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Wed Sep 11, 2019 10:09 am
by Amarie123
Butt wrote:I have dozens on tiny mets several mm. All over my lungs. SERB and Vats not an option because of their number. I am on chemo. It appears after 8 sessions 4 slightly increased in size and the rest are there, so chemo is not erasing them.I am MSS. I hate chemo for life prognosis. I sent DR. Drewes In Coswig Germany but he said he wouldn’t take me because he would afraid to miss some tiny ones.Any doctors, hospitals who work with such situation besides chemo for life until it stops working? Butt.


I have 4 small lung mets (in addition to liver) that did not respond to oxaliplatin and irinotecan (I am not a candidate for anything with 5FU). They are too small for radiation so am now taking Lonsurf with the possibility of Avastin being added if insurance approves. This is pretty much my only option as I have a KRAS mutation and therefore won’t be on immunotherapy. So while I’m not sure that this will be a cure but will hopefully at least halt its growth. Unfortunately I am in the same boat where I think this may be chemo for life, although you never know. You proabably have more options than I do, so I’d remain hopeful. Hope this helps.

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Wed Sep 11, 2019 6:05 pm
by justin case
Have you done a PET scan to make sure your mets are actually cancer ? It could be COPD and your barking up the wrong tree.

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Wed Sep 11, 2019 6:13 pm
by boxhill
This is pretty much my only option as I have a KRAS mutation and therefore won’t be on immunotherapy.


A KRAS mutation does not have anything to do with suitability for immunotherapy. I have a KRAS mutation and I am on immunotherapy.

A KRAS mutation precludes EGFR pathway drugs like Erbitux and Vectibix.

https://www.nature.com/articles/nrclinonc.2009.111

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Wed Sep 11, 2019 7:43 pm
by Amarie123
boxhill wrote:
This is pretty much my only option as I have a KRAS mutation and therefore won’t be on immunotherapy.


A KRAS mutation does not have anything to do with suitability for immunotherapy. I have a KRAS mutation and I am on immunotherapy.

A KRAS mutation precludes EGFR pathway drugs like Erbitux and Vectibix.

https://www.nature.com/articles/nrclinonc.2009.111


My genetic testing report and my onc said the only immunotherapy medication I would respond to is Avastin. Maybe there’s something else with the KRAS mutation that I forgot, but that’s my situation right now.

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Wed Sep 11, 2019 8:42 pm
by Rock_Robster
Amarie123 wrote:
boxhill wrote:
This is pretty much my only option as I have a KRAS mutation and therefore won’t be on immunotherapy.


A KRAS mutation does not have anything to do with suitability for immunotherapy. I have a KRAS mutation and I am on immunotherapy.

A KRAS mutation precludes EGFR pathway drugs like Erbitux and Vectibix.

https://www.nature.com/articles/nrclinonc.2009.111


My genetic testing report and my onc said the only immunotherapy medication I would respond to is Avastin. Maybe there’s something else with the KRAS mutation that I forgot, but that’s my situation right now.

Hi amarie, it is likely your microsatellite stability status on the report (presume MSS) which precludes you from the currently-approved immunotherapies (PD1 inhibitors), rather than the KRAS mutation. However you may still respond to a PD1 inhibitor if you have a high tumour mutation burden (TMB), or if it’s combined with another drug. There are also lots of immunotherapies beyond PD1 inhibitors presently available through trials. Personally I would be very interested in my TMB status and accessing immuno options for MSS patients, esp. given 5FU-based therapy is off the table.

Also Avastin isn’t usually considered an immunotherapy, rather it’s a targeted therapy known as a monoclonal antibody.

Best of luck,
Rob

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Wed Sep 11, 2019 9:00 pm
by Amarie123
Rock_Robster wrote:
boxhill wrote:
A KRAS mutation does not have anything to do with suitability for immunotherapy. I have a KRAS mutation and I am on immunotherapy.

A KRAS mutation precludes EGFR pathway drugs like Erbitux and Vectibix.

https://www.nature.com/articles/nrclinonc.2009.111


My genetic testing report and my onc said the only immunotherapy medication I would respond to is Avastin. Maybe there’s something else with the KRAS mutation that I forgot, but that’s my situation right now.

Hi amarie, it is likely your microsatellite stability status on the report (presume MSS) which precludes you from the currently-approved immunotherapies (PD1 inhibitors), rather than the KRAS mutation. However you may still respond to a PD1 inhibitor if you have a high tumour mutation burden (TMB), or if it’s combined with another drug. There are also lots of immunotherapies beyond PD1 inhibitors presently available through trials. Personally I would be very interested in my TMB status and accessing immuno options for MSS patients, esp. given 5FU-based therapy is off the table.

Also Avastin isn’t usually considered an immunotherapy, rather it’s a targeted therapy known as a monoclonal antibody.

Best of luck,
Rob[/quote]

Thanks for the clarification, it’s a lot of information that I don’t always get right. One issue with some of the treatments is insurance - I might not even be covered for the Avastin if I take it with Lonsurf. My onc is generally on the lookout for clinical trials in the Boston area that I’d be a candidate for.

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Wed Sep 11, 2019 9:19 pm
by Rock_Robster
Amarie123 wrote:
Rock_Robster wrote:
boxhill wrote:
A KRAS mutation does not have anything to do with suitability for immunotherapy. I have a KRAS mutation and I am on immunotherapy.

A KRAS mutation precludes EGFR pathway drugs like Erbitux and Vectibix.

https://www.nature.com/articles/nrclinonc.2009.111


My genetic testing report and my onc said the only immunotherapy medication I would respond to is Avastin. Maybe there’s something else with the KRAS mutation that I forgot, but that’s my situation right now.

Hi amarie, it is likely your microsatellite stability status on the report (presume MSS) which precludes you from the currently-approved immunotherapies (PD1 inhibitors), rather than the KRAS mutation. However you may still respond to a PD1 inhibitor if you have a high tumour mutation burden (TMB), or if it’s combined with another drug. There are also lots of immunotherapies beyond PD1 inhibitors presently available through trials. Personally I would be very interested in my TMB status and accessing immuno options for MSS patients, esp. given 5FU-based therapy is off the table.

Also Avastin isn’t usually considered an immunotherapy, rather it’s a targeted therapy known as a monoclonal antibody.

Best of luck,
Rob


Thanks for the clarification, it’s a lot of information that I don’t always get right. One issue with some of the treatments is insurance - I might not even be covered for the Avastin if I take it with Lonsurf. My onc is generally on the lookout for clinical trials in the Boston area that I’d be a candidate for.[/quote]
That’s a pain about the Avastin - I hadn’t heard that about insurance issues when combining with Lonsurf.

Good that your onc is considering local trials - you might also want to look into NIH trials as they also usually cover travel and accommodation expenses, I believe?

Best of luck
Rob

Re: Multiple tiny mets on lungs—-need knowledge.

Posted: Wed Sep 11, 2019 9:20 pm
by Rock_Robster
[quote=“Amarie123”]
Rock_Robster wrote:
Amarie123 wrote:
My genetic testing report and my onc said the only immunotherapy medication I would respond to is Avastin. Maybe there’s something else with the KRAS mutation that I forgot, but that’s my situation right now.

Hi amarie, it is likely your microsatellite stability status on the report (presume MSS) which precludes you from the currently-approved immunotherapies (PD1 inhibitors), rather than the KRAS mutation. However you may still respond to a PD1 inhibitor if you have a high tumour mutation burden (TMB), or if it’s combined with another drug. There are also lots of immunotherapies beyond PD1 inhibitors presently available through trials. Personally I would be very interested in my TMB status and accessing immuno options for MSS patients, esp. given 5FU-based therapy is off the table.

Also Avastin isn’t usually considered an immunotherapy, rather it’s a targeted therapy known as a monoclonal antibody.

Best of luck,
Rob


Thanks for the clarification, it’s a lot of information that I don’t always get right. One issue with some of the treatments is insurance - I might not even be covered for the Avastin if I take it with Lonsurf. My onc is generally on the lookout for clinical trials in the Boston area that I’d be a candidate for.[/quote]
That’s a pain about the Avastin - I hadn’t heard that about insurance issues when combining with Lonsurf.

Good that your onc is considering local trials - you might also want to look into NIH trials as they also usually cover travel and accommodation expenses, I believe?

Best of luck
Rob[/quote]