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Call me a lurker & Opdivo update

Twinzma
Posts: 211
Joined: Jan 2018

It's been a while since I have posted, but I wanted you all to know I have been checking in to see how everyone is. So sad to see some of the recent posts, so happy for others.....It really is a rollercoaster ride this horrible disease! I just don't want to keep posting the negativity going on since it could scare those new to this diagnosis...

Jim has improved with his symptoms thank heavens. He has his appetite back and is gaining weight so thank God for small victories. He is on his 3 round of Opidivo now but they have yet to schedule a scan. The Opdivo comes with some scary side effects that he had to be given a "lesson" on before they began infusions. But so far not a single side effect has hit him and we are quite happy to say the least. 

There is only one post here about the drug, just a link to the study article. I assume if anyone did post about it, they may have been lost when the forum took that crash. so I guess I should give what info thus far on the experience I can on it so.....Opdiovo is an immunotherapy drug that has been very successful for the treatment of Lung Cancer. In fact some Lung Cancer patients went into full remission. In studies it has shown to also be beneficial in patients with microsatellite instability-high or mismatch repair deficient mutations. These mutations are rare and we were told less than 10% of Colorectal Cancer patients have them. So I want to stress to anyone new to diagnosis reading this be certain that you have the genetic testing done early on your tumors! Some insurance companies are still refusing to pay for it....but do it anyway! You want to come up with a more targeted therapy and the sooner then better. My husband was unable to join several clinical trials for these mutations because the doctor put him on other therapies first. While Folfri and Folfox are the "standard of care" in chemotherapy drugs, there are some rare mutations that just don't respond well to these.....my husband has those mutations. 

There are many scary possible adverse side effects, so with any drug you have to really think long and hard. DO THE POSSIBLE RISKS OUTWEIGH THE POSSIBLE BENEFITS? Sorry to be so morbid, but Jim decided that he want's to live as long as possible, since this could give him that, he would rather die trying than die doing nothing. This choice is very individual becuase naturally at the end of the day no one want's to suffer and the possible side effects can be painful and catastrophic. All drugs are really like that and it's unfortunate that when you look for Opidivo in all the fb groups and colon cancer groups you just don't see anyone on this so you are looking at documents and not hearing first hand experiences and that is kind of overwhelming. 

As far as regime goes there are no colon cancer patients on this in his cancer center...as for the studies I have not seen a single one with my hubby's combo of meds so really he is like a lab rat I suppose. He is taking Strivarga with the Opdivo. Studies have been conducted with Opdivo given with 2nd line chemo in Colorecatal cancer and not 4th line like Jim is on. There are studies of Opdivo given in conjunction with the drug Yervoy, they have yet to discuss placing him on this and are saving it for the next drug. So when the next scans are done, it would really be hard to deduce if it is effective of not for others because as I said it's just not given in this order or as this combo. Maybe it will be a miracle, maybe it will at least offer progression free, or maybe it will be in vain but at least the doctor at the center will know not to prescribe that regime again, so there are benefits for future patients. 

So that's were he is at....so far so good what more can you ask for? We keep saying to eachother that everyday there are breakthroughs in cancer research. It's just a matter of it coming in time and that's what we are hoping for...time

abita's picture
abita
Posts: 609
Joined: Dec 2017

Are the adverse effects you mentioned that in some cases the immune system goes into overdrive? I really hope for y'all that this is his miracle! I think his fighting spirit is great!

Twinzma
Posts: 211
Joined: Jan 2018

Yes I belive some are. The list was pretty extensive...taken from their site inclued adversce reactions could be Pneumonitis, Colitis, Hepitis, Endorinopaties,  Renal dysfunction, Encephalitis. Then off hand, there were the more common side effects of Skin reactions (falling off of hands of feet), Rash and hives, Irregular heartbeat, muscle pain and weakness, mouth sores, cough, respitory infections, fatigue, shortness of breath, joint pain, psorisis and many more...It seemed to go on and on in the "instruction session" he was given before the first infussion. 

karyns_dad's picture
karyns_dad
Posts: 24
Joined: Oct 2015

I am another lurker since 2015.  Started stage 1 and now stage 4.  Three recurrences.  Liver and lung both resected.  I am on the opdivo and yervoy combination.  I am not MSI High but have high tumor mutation burden and lymphocytes.  The therapy is pretty easy as far as side effects so far.  On my second cycle.  Joint pain and mild rash.  Any questions about the therapy or anything else feel free to ask.  I will not lurk anymore.  Scan planned after 4th cycle.

Twinzma
Posts: 211
Joined: Jan 2018

If it helps you any I want for you to know that while my hubby is the only one on Opdivo for Colon Cancer they have given to a few Lung cancer patients at our center 2 have had awesome success and are now NED the other patient has shrunk incredibly! Hopefully this is the answer that you and my husband are looking for. Thank you for reaching out and sharing your experience so far. I will add you to my prayers. 

karyns_dad's picture
karyns_dad
Posts: 24
Joined: Oct 2015

I will keep the board updated of progress and when CEA drops.

karyns_dad's picture
karyns_dad
Posts: 24
Joined: Oct 2015

Cea jumped from 4.8 to 7.7 after first treatment.   Oncologist said this is not uncommon.  I experienced same thing on Folfiri.  

Annabelle41415's picture
Annabelle41415
Posts: 6185
Joined: Feb 2009

I'm not familiar with that treatment but it sounds like he is handling it well so far.  You are right, there are breakthroughs all the time so keep that hope.  Thank you for the update, and hope that this treatment works for him.

Kim

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