Immunotherapy Experience & Advice

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nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Immunotherapy Experience & Advice

Postby nmorgen » Sun Dec 04, 2022 2:28 pm

Hi,
I was wondering if anyone would be willing to share their experiences and any advice regarding their immunotherapy journey. I would especially be interested in any concurrent treatments or added therapies. Anything to do with side effects or ways to deal with them. Are there supplements or anything that we should avoid? Or definitely be adding? Any advice or guidance would be greatly welcomed.
Thank you
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

prayingforccr
Posts: 478
Joined: Sun Jun 28, 2020 4:44 pm

Re: Immunotherapy Experience & Advice

Postby prayingforccr » Mon Dec 05, 2022 2:40 pm

I completed sbrt and 5 doses opdivo/yervoy for lung mets.

Did absolutely nothing, and I think it amped up the cancer.

The nodules progressed and I developed an adrenal met in addition to the lung mets.

Granted I am MSS and knew this approach was a shot in the dark at best.

My understanding is to avoid cbd oil and all thc products whilst undergoing immunotherapy.

https://www.nature.com/articles/s41392- ... se9DH2eIzI
Last edited by prayingforccr on Wed Dec 07, 2022 10:44 pm, edited 1 time in total.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: Immunotherapy Experience & Advice

Postby nmorgen » Wed Dec 07, 2022 10:28 pm

Thank you for the advice. We have never tried cbd products and will definitely avoid them. I’m sorry you had progression of your cancer. Hopefully it didn’t actually ramp up your cancer. I’ve seen your other post and hope your til treatment works.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

prayingforccr
Posts: 478
Joined: Sun Jun 28, 2020 4:44 pm

Re: Immunotherapy Experience & Advice

Postby prayingforccr » Wed Dec 07, 2022 10:46 pm

nmorgen wrote:Thank you for the advice. We have never tried cbd products and will definitely avoid them. I’m sorry you had progression of your cancer. Hopefully it didn’t actually ramp up your cancer. I’ve seen your other post and hope your til treatment works.


Thank you, nmorgan.

I hope your immunotherapy works, and would be optimistic given your MSI-H status.

I would see if you can concurrently do sbrt or cryoablation to the liver mets.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

GMTX
Posts: 4
Joined: Thu Dec 08, 2022 10:51 am

Re: Immunotherapy Experience & Advice

Postby GMTX » Thu Dec 08, 2022 11:23 am

Hi nmorgen,
I can offer my insight and personal experience as I completed an Immunotherapy, phase 2, clinical trial, using chemo drug Regorafenib (120mg daily for 21 days and off 7), with immuno drug Nivolumab (Opdivo) infusion every 28 days, did Not meet FDA approval. However, I was blessed with a complete response (remission). Side-affects, though challenging (mouth and throat lesions, joint pain and fatigue, to name a few), were tolerable, taking this regimen 1 month and at times, 1 week or 1 day at a time. I can elaborate if it will help you manage side-affects. This trial continued to allow me to treat my late stage colon cancer as a chronic disease.
As far as supplements or adjunct efforts… yes, I believe diet, rest and positive attitude are critical success factors to managing stage 4 colon cancer. If you feel comfortable sharing your side-affects, I am pleased to share my experience managing those affects, if I experienced them.
Hang in there, with a positive attitude. Now entering my 11th year, my colon cancer initially metastasized in the liver, spread to several lymph nodes, stomach lining, lungs, diaphragm and clavicle area.
Take care and best - GM

Rock_Robster
Posts: 745
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Immunotherapy Experience & Advice

Postby Rock_Robster » Mon Dec 12, 2022 2:36 am

GMTX wrote:Hi nmorgen,
I can offer my insight and personal experience as I completed an Immunotherapy, phase 2, clinical trial, using chemo drug Regorafenib (120mg daily for 21 days and off 7), with immuno drug Nivolumab (Opdivo) infusion every 28 days, did Not meet FDA approval. However, I was blessed with a complete response (remission). Side-affects, though challenging (mouth and throat lesions, joint pain and fatigue, to name a few), were tolerable, taking this regimen 1 month and at times, 1 week or 1 day at a time. I can elaborate if it will help you manage side-affects. This trial continued to allow me to treat my late stage colon cancer as a chronic disease.
As far as supplements or adjunct efforts… yes, I believe diet, rest and positive attitude are critical success factors to managing stage 4 colon cancer. If you feel comfortable sharing your side-affects, I am pleased to share my experience managing those affects, if I experienced them.
Hang in there, with a positive attitude. Now entering my 11th year, my colon cancer initially metastasized in the liver, spread to several lymph nodes, stomach lining, lungs, diaphragm and clavicle area.
Take care and best - GM

Hi GMTX, thank you for sharing - this is quite an extraordinary response! I hadn’t heard of a CRC patient with a complete response to REGONIVO.
May I ask if you are MSI and/or dMMR?

Thanks,
Rob
40M Australia
2018 Dx RC 12cm high
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA: Nov-18: 14 > 2
Jun-22: 5
Sep: 10
Nov: 19
Dec/Jan-23: 17-19
11/18 FOLFOX
3/19 Liver resect
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resect
NED
11/21 Liver met, PALN, sub-cm lung mets
3-4/22 Lymphadenectomy, liver SBRT
9/22 Liver met, PALN
10/22 PALN SBRT
11/22 Liver mets, nodes, peri nodules. Xeloda+Avastin
1/23 Liver/lungs stable. Lymph/peri undetectable

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Immunotherapy Experience & Advice

Postby boxhill » Thu Dec 15, 2022 1:28 pm

I was diagnosed Stage 4 in March 2018. After a right hemicolectomy, had to complete 12 rounds of FOLFOX because first line immunotherapy was not available at that time. Having "failed" FOLFOX as determined by MRI finding some progression in poorly located lymph nodes and a very small questionable mass in the liver, I was able to start Keytruda on New Year's Ever 2018. By the time I was scanned, about 5 months later, the lymph nodes were normal. A month or so after that I developed increasingly painful arthralgia, most notably in my knees and right hand/wrist. Steroids and a pause in Keytruda were tried, but didn't really work. (As a T2 diabetic, I could not afford to stay on steroids, even low dose.) Various other things were tried, such as injecting steroids into my knee, but nothing worked until the insurance co finally let me have celebrex, which knocked the pain down to manageable levels. After 18 mos on Keytruda, they decided that the little liver thing was not cancer, and my onc decided that I had basically been NED since that first scan and took me off of it because of the arthralgia. At the time most people were on it for 24 months, but no one really knew when it was safe to stop. In March I will have my fifth cancerversary and I am still NED.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs 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
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

GMTX
Posts: 4
Joined: Thu Dec 08, 2022 10:51 am

Re: Immunotherapy Experience & Advice

Postby GMTX » Sun Dec 18, 2022 4:15 pm

Hi Rob, being not familiar with these terms, I searched MSI and dMMR. If I understand, these deal with hereditary conditions to which my cancer is not hereditary. I hope that answers your question. I too, am not familiar with anyone in our phase 2, clinical trial, using chemo drug Regorafenib (120mg daily for 21 days and off 7), with Nivolumab injection that achieved a complete response, though I was not informed regarding patients outside our MD Anderson group (there were multiple groups, organizations, and locations with this trial). Side note: the phase 1 trial in Japan, showed promise and brought excitement to all of us involved in the study. A milestone earlier this week, with scans that revealed No Evidence of Disease, now 12 months after trial, a credit to managing stage 4 colon cancer as a chronic disease, until we find a cure. Take care Rob. I wish you well.

roadrunner
Posts: 347
Joined: Sun Jan 12, 2020 8:46 pm

Re: Immunotherapy Experience & Advice

Postby roadrunner » Sun Dec 18, 2022 6:22 pm

dMMR (and thus MSI) can be hereditary or sporadic.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: Immunotherapy Experience & Advice

Postby nmorgen » Mon Dec 19, 2022 8:52 pm

I want to thank everyone who has commented on this thread so far. I took a small “cancer” break. I guess I needed to think about other things for a little bit.

My husband’s main side effect is just being tired. He did have something weird happen. His port started opening. It started developing holes. This started right after his first treatment. We just thought at first it was from the needles from infusion and lab draws. They just kept getting bigger not smaller. Today they removed the port and said his body was rejecting it. So, he will be receiving his treatments through iv. Has anyone heard of this happening?

We still haven’t heard from any of the genomic tests. My DH also had his infusion today. I’ve looked at the labs, but I don’t see a cea test. Could it be because his was already almost normal before treatment?
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: Immunotherapy Experience & Advice

Postby nmorgen » Tue Dec 20, 2022 11:31 pm

The CEA test finally showed up in the portal. It had dropped to 4.6. We still don’t know if his is an indicator, but I’m crossing my fingers and believing that his immune system is kicking cancers butt.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

GMTX
Posts: 4
Joined: Thu Dec 08, 2022 10:51 am

Re: Immunotherapy Experience & Advice

Postby GMTX » Thu Dec 22, 2022 7:46 pm

Hi nmorgan, great news on CEA drop ... and great ATTITUDE! I do not have privileges for private messaging, so I'll leave a general follow-up response. I’m pleased to share my experience, after years of silently managing my cancer as a chronic disease. My CEA dropped throughout the trial and by treatment’s end, to its lowest level ever, which is consistent with my remission. Your Oncologist team will likely advise, with good reason, that CEA is only directional and may not show the complete picture. Still, for me, CEA was always a good indicator, supporting scan results. For reference, directly prior to my 24 month, phase 2 immuno/chemo trial, I was on an 18 month chemo regimen, keeping all areas in check, except for clavicle area, which continued to grow.
Your husband, like me, is fortunate. My wife, I simply say … is proof, that Angels walk amongst us. Sounds like you are the same, for your husband. Spouses can be our biggest asset when they champion our cause. My best to your husband. Let him know I am here, if he would like to chat or exchange notes. Take care NM Morgan

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: Immunotherapy Experience & Advice

Postby nmorgen » Fri Dec 23, 2022 6:34 pm

Oh thank you for the response gmtx. A few more posts and you will hopefully be able to use the pm function. I’m really hoping the downward trend is a good thing.

I think my husband is still in a little bit of denial right now. He doesn’t want to talk about or think about cancer at all. I think that might change at some point, but I will let him know that you are willing to talk. I personally think it would be helpful. I also think that those with partners that take an active role are very lucky :) Happy Holidays!
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: Immunotherapy Experience & Advice

Postby nmorgen » Sat Dec 24, 2022 11:38 pm

My husband had his 2nd infusion on the 19th. He drove a lot for the next two days. I’m sure that has added to his exhaustion, but I have been really surprised by how exhausted he is. He has barely gotten out of bed for the last two days. He is even eating in bed. Is this normal? I’m hoping he bounces back with a little energy. He is also fluctuating between being hot and cold with a lot of sweating as well.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

User avatar
Jacques
Posts: 646
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Immunotherapy Experience & Advice

Postby Jacques » Sun Dec 25, 2022 11:48 am

nmorgen wrote:My husband had his 2nd infusion on the 19th. He drove a lot for the next two days. I’m sure that has added to his exhaustion, but I have been really surprised by how exhausted he is. He has barely gotten out of bed for the last two days. He is even eating in bed. Is this normal? I’m hoping he bounces back with a little energy. He is also fluctuating between being hot and cold with a lot of sweating as well.


Hi nmorgen -

This is probably normal because fatigue and asthenia are listed among the top side effects of these drugs. But that doesn't mean that DH has to put up with this level of discomfort over time. There might be measures that could be taken that would lessen these effects. Also, there might be measures that could be taken that might prevent these and other side effects from continuing or escalating over time. These are the kinds of issues that I think DH needs to be concerned with.

Does DH know how long he will be at this dosage level? Does he know what dosage level he will then get after the first 4 cycles have been completed? Does he know when they will be doing the scans to see if the treatment is working?

Here is how I see his first four cycles unfolding. Is this what he has been told?

    Every 3 weeks Opdivo @ 3mg/kg + Yervoy @ 1mg/kg
    1st cycle - December 1st
    2nd cycle - December 19th
    3rd cycle - January 9th ? --> January 12th
    4th cycle - January 30th ? --> February 2nd

Also, what is DH doing about fluid loss due to heavy perspiration and possible episodes of diarrhea?
Last edited by Jacques on Mon Dec 26, 2022 12:20 pm, edited 2 times in total.


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