Adventures in Immunotherapy - Hopeful beginnings

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Reviresco
Posts: 26
Joined: Mon Mar 26, 2018 3:47 pm
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Adventures in Immunotherapy - Hopeful beginnings

Postby Reviresco » Fri Oct 04, 2019 1:33 pm

Hello from Maine!

Just wanted to let you all know that I started Yervoy and Opdivo (Ipi – Nivo) combo immunotherapy for another recurrence in my liver.

To recap, I’ve had a colon resection and two liver resections in the past 18 months, with the hopes of getting to NED. However, the cancer keeps popping up in the liver. Boo. :evil:

CT scan in August showed a new solitary met in segment 4. Because I’m MSI-H (Lynch Syndrome with a PMS2 mutation), it was a no-brainer to start immunotherapy. I’ve had two doses of the combo. The plan is for four doses, if I tolerate them, then scan in November and switch to Opdivo monotherapy.

So far, I’m experiencing some fatigue, musculoloskeletal soreness, and mild abdominal pain. Nothing major. I’m tracking my symptoms to make sure we take action promptly if I develop adverse immune events.

Again, I want to thank all the immunotherapy trailblazers who made this possible (including Henry 123 and Plastikos), and have given me a shot at longterm remission, and perhaps even cure. Because of your participation in trials and as advocates, the Ipi-Nivo combo is now FDA approved and I can get it at the cancer center 15 minutes from my house. On behalf of my wife and daughters, we can’t thank you enough!

In solidarity,

Trevor
42 year old male, dx CC 3/22/18
9.5 x 5.5 x 2.5 cm tumor in ascending colon. T3N1Mx
MSI-H, Lynch Syndrome (PMS2 mutation)
4/4/18 Right hemicolectomy
1 of 25 lymph nodes, clear margins
Four cycles Capeox chemo. CEA 1.4
8/27/18 CT scan shows one liver spot. Two radiologists say it's not a met.
11/12/18 Oops... CT and MRI confirm liver met.
11/28/18 Liver resection
2/14/19 Recurrence in liver
4/9/19 Liver resection #2
8/22/19 Recurrence in liver. CEA 11.7
8/30/19 Started immunotherapy (Ipi-Nivo combo)

boxhill
Posts: 555
Joined: Fri Apr 06, 2018 11:40 am

Re: Adventures in Immunotherapy - Hopeful beginnings

Postby boxhill » Fri Oct 04, 2019 7:04 pm

Hey, Trevor, I also live in Maine, and was DXed (and had emergency right hemicolectomy) just 4 days before you. :)

I've been on Keytruda since New Year's Eve. The first few months were fine, but now I'm suffering from joint inflammation that is quite painful. Hoping for a fix for that from the rheumatology people, since osteo arthritis was ruled out today.

Best of luck to you.
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
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

Reviresco
Posts: 26
Joined: Mon Mar 26, 2018 3:47 pm
Contact:

Re: Adventures in Immunotherapy - Hopeful beginnings

Postby Reviresco » Wed Oct 09, 2019 7:19 am

boxhill wrote:Hey, Trevor, I also live in Maine, and was DXed (and had emergency right hemicolectomy) just 4 days before you. :)

I've been on Keytruda since New Year's Eve. The first few months were fine, but now I'm suffering from joint inflammation that is quite painful. Hoping for a fix for that from the rheumatology people, since osteo arthritis was ruled out today.

Best of luck to you.


Thanks Boxhill! I'm hoping the rheumatology docs can provide some relief for your pain. That sounds awful. Who did your right hemi? Sara Mayo did mine. Did you get any skin reactions from Keytruda? I'm going on Friday for infusion #3 of the Opdivo-Yervoy combo. I still haven't had any skin issues. I'm having my labs done today, including CEA. Fingers crossed that it's going down!
- Trevor
42 year old male, dx CC 3/22/18
9.5 x 5.5 x 2.5 cm tumor in ascending colon. T3N1Mx
MSI-H, Lynch Syndrome (PMS2 mutation)
4/4/18 Right hemicolectomy
1 of 25 lymph nodes, clear margins
Four cycles Capeox chemo. CEA 1.4
8/27/18 CT scan shows one liver spot. Two radiologists say it's not a met.
11/12/18 Oops... CT and MRI confirm liver met.
11/28/18 Liver resection
2/14/19 Recurrence in liver
4/9/19 Liver resection #2
8/22/19 Recurrence in liver. CEA 11.7
8/30/19 Started immunotherapy (Ipi-Nivo combo)

boxhill
Posts: 555
Joined: Fri Apr 06, 2018 11:40 am

Re: Adventures in Immunotherapy - Hopeful beginnings

Postby boxhill » Wed Oct 09, 2019 10:01 am

Juan Palma Vargas at Maine Med did my hemicolectomy.

No, I haven't had any skin issues. Other than some fatigue, my only problem with keytruda has been this damned joint pain.

I hope you are able to tolerate the Yervoy well and get through 4 doses. In studies, the combo seems to be the top performer.
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
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

User avatar
henry123
Posts: 212
Joined: Sun Oct 08, 2017 3:25 am

Re: Adventures in Immunotherapy - Hopeful beginnings

Postby henry123 » Wed Oct 16, 2019 4:27 am

Best of luck Trevor.
4 Infuisions may be too few to assess.

Be wary of pseudoprogression.

I am sure it will work out for you.
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 NED
6/19 .9 CT clear
1/20 NED Opdivo stop

plastikos
Posts: 339
Joined: Wed Jan 14, 2015 6:09 am

Re: Adventures in Immunotherapy - Hopeful beginnings

Postby plastikos » Sun Dec 22, 2019 7:06 am

Reviresco wrote:Hello from Maine!

Just wanted to let you all know that I started Yervoy and Opdivo (Ipi – Nivo) combo immunotherapy for another recurrence in my liver.

To recap, I’ve had a colon resection and two liver resections in the past 18 months, with the hopes of getting to NED. However, the cancer keeps popping up in the liver. Boo. :evil:

CT scan in August showed a new solitary met in segment 4. Because I’m MSI-H (Lynch Syndrome with a PMS2 mutation), it was a no-brainer to start immunotherapy. I’ve had two doses of the combo. The plan is for four doses, if I tolerate them, then scan in November and switch to Opdivo monotherapy.

So far, I’m experiencing some fatigue, musculoloskeletal soreness, and mild abdominal pain. Nothing major. I’m tracking my symptoms to make sure we take action promptly if I develop adverse immune events.

Again, I want to thank all the immunotherapy trailblazers who made this possible (including Henry 123 and Plastikos), and have given me a shot at longterm remission, and perhaps even cure. Because of your participation in trials and as advocates, the Ipi-Nivo combo is now FDA approved and I can get it at the cancer center 15 minutes from my house. On behalf of my wife and daughters, we can’t thank you enough!

In solidarity,

Trevor


Just saw this Trevor. Sorry I’ve been busy and have not checked in here. On vacation now so suddenly decided to back read. Life gets in the way, as I always say. Work, kids, bills etc. All GOOD problems to have. Praying you get to a point where you’ll have the luxury of worrying about those same good problems as well soon. Hoping for all the best for you.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

Reviresco
Posts: 26
Joined: Mon Mar 26, 2018 3:47 pm
Contact:

Re: Adventures in Immunotherapy - Hopeful beginnings

Postby Reviresco » Sat Dec 28, 2019 5:35 pm

plastikos wrote:
Reviresco wrote:Hello from Maine!

Just wanted to let you all know that I started Yervoy and Opdivo (Ipi – Nivo) combo immunotherapy for another recurrence in my liver.

To recap, I’ve had a colon resection and two liver resections in the past 18 months, with the hopes of getting to NED. However, the cancer keeps popping up in the liver. Boo. :evil:

CT scan in August showed a new solitary met in segment 4. Because I’m MSI-H (Lynch Syndrome with a PMS2 mutation), it was a no-brainer to start immunotherapy. I’ve had two doses of the combo. The plan is for four doses, if I tolerate them, then scan in November and switch to Opdivo monotherapy.

So far, I’m experiencing some fatigue, musculoloskeletal soreness, and mild abdominal pain. Nothing major. I’m tracking my symptoms to make sure we take action promptly if I develop adverse immune events.

Again, I want to thank all the immunotherapy trailblazers who made this possible (including Henry 123 and Plastikos), and have given me a shot at longterm remission, and perhaps even cure. Because of your participation in trials and as advocates, the Ipi-Nivo combo is now FDA approved and I can get it at the cancer center 15 minutes from my house. On behalf of my wife and daughters, we can’t thank you enough!

In solidarity,

Trevor


Just saw this Trevor. Sorry I’ve been busy and have not checked in here. On vacation now so suddenly decided to back read. Life gets in the way, as I always say. Work, kids, bills etc. All GOOD problems to have. Praying you get to a point where you’ll have the luxury of worrying about those same good problems as well soon. Hoping for all the best for you.


Thanks Plastikos! I made it through 3 of the combo treatment, had too much inflammation, so switched to Opdivo monotherapy. Going good so far. CEA has dropped from 11.7 before starting immuno, to 2.9 a few weeks ago. First scans showed slight progression, but with the CEA dropping, we are thinking it's likely pseudo. Will scan again next month. Thanks as always for your encouragement.
42 year old male, dx CC 3/22/18
9.5 x 5.5 x 2.5 cm tumor in ascending colon. T3N1Mx
MSI-H, Lynch Syndrome (PMS2 mutation)
4/4/18 Right hemicolectomy
1 of 25 lymph nodes, clear margins
Four cycles Capeox chemo. CEA 1.4
8/27/18 CT scan shows one liver spot. Two radiologists say it's not a met.
11/12/18 Oops... CT and MRI confirm liver met.
11/28/18 Liver resection
2/14/19 Recurrence in liver
4/9/19 Liver resection #2
8/22/19 Recurrence in liver. CEA 11.7
8/30/19 Started immunotherapy (Ipi-Nivo combo)

Reviresco
Posts: 26
Joined: Mon Mar 26, 2018 3:47 pm
Contact:

Re: Adventures in Immunotherapy - Hopeful beginnings

Postby Reviresco » Sat Dec 28, 2019 5:36 pm

henry123 wrote:Best of luck Trevor.
4 Infuisions may be too few to assess.

Be wary of pseudoprogression.

I am sure it will work out for you.


As always, thanks Henry! See my update below about CEA dropping. Gunning for NED in 2020!
42 year old male, dx CC 3/22/18
9.5 x 5.5 x 2.5 cm tumor in ascending colon. T3N1Mx
MSI-H, Lynch Syndrome (PMS2 mutation)
4/4/18 Right hemicolectomy
1 of 25 lymph nodes, clear margins
Four cycles Capeox chemo. CEA 1.4
8/27/18 CT scan shows one liver spot. Two radiologists say it's not a met.
11/12/18 Oops... CT and MRI confirm liver met.
11/28/18 Liver resection
2/14/19 Recurrence in liver
4/9/19 Liver resection #2
8/22/19 Recurrence in liver. CEA 11.7
8/30/19 Started immunotherapy (Ipi-Nivo combo)

plastikos
Posts: 339
Joined: Wed Jan 14, 2015 6:09 am

Re: Adventures in Immunotherapy - Hopeful beginnings

Postby plastikos » Wed Jan 01, 2020 7:19 am

Reviresco wrote:
plastikos wrote:
Reviresco wrote:Hello from Maine!

Just wanted to let you all know that I started Yervoy and Opdivo (Ipi – Nivo) combo immunotherapy for another recurrence in my liver.

To recap, I’ve had a colon resection and two liver resections in the past 18 months, with the hopes of getting to NED. However, the cancer keeps popping up in the liver. Boo. :evil:

CT scan in August showed a new solitary met in segment 4. Because I’m MSI-H (Lynch Syndrome with a PMS2 mutation), it was a no-brainer to start immunotherapy. I’ve had two doses of the combo. The plan is for four doses, if I tolerate them, then scan in November and switch to Opdivo monotherapy.

So far, I’m experiencing some fatigue, musculoloskeletal soreness, and mild abdominal pain. Nothing major. I’m tracking my symptoms to make sure we take action promptly if I develop adverse immune events.

Again, I want to thank all the immunotherapy trailblazers who made this possible (including Henry 123 and Plastikos), and have given me a shot at longterm remission, and perhaps even cure. Because of your participation in trials and as advocates, the Ipi-Nivo combo is now FDA approved and I can get it at the cancer center 15 minutes from my house. On behalf of my wife and daughters, we can’t thank you enough!

In solidarity,

Trevor


Just saw this Trevor. Sorry I’ve been busy and have not checked in here. On vacation now so suddenly decided to back read. Life gets in the way, as I always say. Work, kids, bills etc. All GOOD problems to have. Praying you get to a point where you’ll have the luxury of worrying about those same good problems as well soon. Hoping for all the best for you.


Thanks Plastikos! I made it through 3 of the combo treatment, had too much inflammation, so switched to Opdivo monotherapy. Going good so far. CEA has dropped from 11.7 before starting immuno, to 2.9 a few weeks ago. First scans showed slight progression, but with the CEA dropping, we are thinking it's likely pseudo. Will scan again next month. Thanks as always for your encouragement.

Drop in CEA is good. I’m sure your doctors know what they’re doing. Stay the course!
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

jep
Posts: 250
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Adventures in Immunotherapy - Hopeful beginnings

Postby jep » Wed Jan 01, 2020 4:53 pm

henry123 wrote:Best of luck Trevor.
4 Infuisions may be too few to assess.

Be wary of pseudoprogression.

I am sure it will work out for you.


Hi Henry123.....can you tell me more about your warning to beware of pseudo progression? My husband was just taken off of a clinical trial after 3 infusions due to “progression,” but I think they jumped the gun....I would have liked to see him continue with the trial and then get a scan down the road to see what’s really going on....do you have experience with pseudo progression?
Thank you!!
jep
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

User avatar
henry123
Posts: 212
Joined: Sun Oct 08, 2017 3:25 am

Re: Adventures in Immunotherapy - Hopeful beginnings

Postby henry123 » Wed Jan 15, 2020 3:45 am

jep wrote:
henry123 wrote:Best of luck Trevor.
4 Infuisions may be too few to assess.

Be wary of pseudoprogression.

I am sure it will work out for you.


Hi Henry123.....can you tell me more about your warning to beware of pseudo progression? My husband was just taken off of a clinical trial after 3 infusions due to “progression,” but I think they jumped the gun....I would have liked to see him continue with the trial and then get a scan down the road to see what’s really going on....do you have experience with pseudo progression?
Thank you!!
jep


Hi
In pseudo progression , our immune cells penetrate the previously undisturbed tumor cells. Hence tumors grow in size as more and more immune cells enter them , there may actually be a jump in cea levels as tumor cells are being killed by immune system. Previously undetected small tumors may become visible on scans as the immune system wrecks havoc in the tumors .

It can last from 2 to 6 months and is actually a sign that immunotherapy is working.

Most oncologists are well aware of this phenomena and that's why they wait for 3-4 infusions at least before testing if immunotherapy is working or not.

Best of luck.
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 NED
6/19 .9 CT clear
1/20 NED Opdivo stop


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