Adventures in Immunotherapy - Hopeful beginnings

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Reviresco
Posts: 24
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: 360
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
5/4/18 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

Reviresco
Posts: 24
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: 360
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
5/4/18 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

User avatar
henry123
Posts: 203
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 CT Clear NED
6/19 .9 CT clear
9/19 1.2
Vegan yoga juicing
Still on opdivo


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