Adventures in Immunotherapy - Hopeful beginnings

[Reviresco]

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.

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

[boxhill]

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.

[Reviresco]

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

[boxhill]

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.

[henry123]

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.

[plastikos]

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.

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.

[Reviresco]

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.

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.

[Reviresco]

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!

[plastikos]

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.

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!

[jep]

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

[henry123]

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.