Immunotherapy Experience & Advice

[nmorgen]

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

[prayingforccr]

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

[nmorgen]

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.

[prayingforccr]

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.

[GMTX]

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]

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

[boxhill]

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.

[GMTX]

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]

dMMR (and thus MSI) can be hereditary or sporadic.

[nmorgen]

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?

[nmorgen]

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.

[GMTX]

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]

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!

[nmorgen]

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.

[Jacques]

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?