Multiple tiny mets on lungs—-need knowledge.

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Butt
Posts: 26
Joined: Mon Mar 11, 2019 10:48 pm

Multiple tiny mets on lungs—-need knowledge.

Postby Butt » Wed May 29, 2019 5:15 pm

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.

Claudine
Posts: 179
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

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

Postby Claudine » Thu May 30, 2019 9:50 am

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
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, then low of 3.2 now 6.9
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Butt
Posts: 26
Joined: Mon Mar 11, 2019 10:48 pm

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

Postby Butt » Fri Jun 07, 2019 11:47 pm

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.

Butt
Posts: 26
Joined: Mon Mar 11, 2019 10:48 pm

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

Postby Butt » Sun Jun 23, 2019 1:06 am

They now want to drop irinetecan.

Butt
Posts: 26
Joined: Mon Mar 11, 2019 10:48 pm

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

Postby Butt » Thu Aug 22, 2019 10:54 pm

Anyone else who can chip in?

Rock_Robster
Posts: 392
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

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

Postby Rock_Robster » Fri Aug 23, 2019 12:17 am

Hi Butt, do you know your tumour genomics (mutations)? And did you end up changing from the FOLFIRI+Bev?
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
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
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 & (01/20) stoma reversal

User avatar
henry123
Posts: 205
Joined: Sun Oct 08, 2017 3:25 am

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

Postby henry123 » Wed Sep 11, 2019 3:28 am

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.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
6/19 .9 CT clear
9/19 1.2
Vegan yoga juicing
Still on opdivo

Amarie123
Posts: 44
Joined: Wed Nov 14, 2018 6:46 am

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

Postby Amarie123 » Wed Sep 11, 2019 10:09 am

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.

justin case
Posts: 4258
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

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

Postby justin case » Wed Sep 11, 2019 6:05 pm

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.
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

boxhill
Posts: 403
Joined: Fri Apr 06, 2018 11:40 am

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

Postby boxhill » Wed Sep 11, 2019 6:13 pm

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
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

Amarie123
Posts: 44
Joined: Wed Nov 14, 2018 6:46 am

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

Postby Amarie123 » Wed Sep 11, 2019 7:43 pm

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.

Rock_Robster
Posts: 392
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

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

Postby Rock_Robster » Wed Sep 11, 2019 8:42 pm

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
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
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
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 & (01/20) stoma reversal

Amarie123
Posts: 44
Joined: Wed Nov 14, 2018 6:46 am

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

Postby Amarie123 » Wed Sep 11, 2019 9:00 pm

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.

Rock_Robster
Posts: 392
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

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

Postby Rock_Robster » Wed Sep 11, 2019 9:19 pm

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
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
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
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 & (01/20) stoma reversal

Rock_Robster
Posts: 392
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

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

Postby Rock_Robster » Wed Sep 11, 2019 9:20 pm

[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]
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
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
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 & (01/20) stoma reversal


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