← Return to opdivo

amws (@amws)


Lung Cancer | Last Active: Oct 5, 2017 | Replies (16)

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Welcome to Connect @amws.
I’m tagging @lynnkay1956 on this discussion as she has recently written several messages about Opdivo (nivolumab) and its use for metastasized lung cancer. You may also wish to connect with @burrkay on this thread https://connect.mayoclinic.org/discussion/my-wife-has-had-stage-iiib-lung-cancer-she-had-2-lobes/ His wife also has lung cancer.

Amws, when will you be starting Opdivo treatment?

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Replies to "Welcome to Connect @amws. I'm tagging @lynnkay1956 on this discussion as she has recently written several..."

My onc has not yet set up a schedule.

I have recently read an article on immunotherapy drugs Nivolumab etc. and their drastic side effects. It said in summary that the body starts attacking itself (healthy organs etc.) at the same time it shows immediate shrinkage of tumors. What percentage of patients are reacting this way?

Any drug can have side effects, just keep in mind each body is different, so don’t be put off by side effects. When one is on Opdivo or Yervoy, one is monitored very closely so the serious side effects are caught early. I am a case in point. I have had 5 years of melanoma resections, then multiple melanomas occurred (19) so the Dr at MSKCC put me in a clinical trial doing a chemo infusion of the leg along with Yervoy (Ipilimumab) infusions – every 3 weeks for 4 infusions. Did not work, and I got diarrhea for 2 mos that was managed very carefully by my Dr. She saved me from colitis which is one of the side effects of this drug.

We then waited a month and I was given Opdivo (Nivolumab) which targets/shuts down the PD1 protein so the immune system can effectively attack the cancer. After 2 infusions, all 19 melanomas on my leg disappeared. I continued on for 6 infusions but had to go off as a result of the severe side effects: from vision and oral inflammation to pancreatitis, adrenal insufficiency, anemia, bone and joint issues, reactive/osteo arthritis, and skin itching. It has taken a year to resolve all the inflammation, but after almost 2 years, I am still cancer free and melanomas have not spread to liver, lung, or brain. It was upsetting not to be able to continue the Nivo (some patients get biweekly infusions for 2 years) but Dr’s feel the combo of the Ipi followed by Nivo may have worked in my favor and given me longer survival time. Some clinical trials at MSKCC are actually using both Ipi and Nivo in combination and having great survival rates – up to 60%. Moral of the story is don’t worry about the side effects as they can be managed most of the time but you must be vigilant and follow Dr’s orders. For the first time melanomas are being used in the same sentence as “curable” and that is truly amazing.

Welcome to Connect @allisonsnow and @twinskl
Allison, are you able to share where you saw the article to which you refer?

Twinskl – you share a truly remarkable story. I bet @lynnkay1956 can also relate to Nivolumab treatment for melanoma. Might you be able to restart treatment if necessary after a break?

Yes, the Dr said that is possible if necessary. Might have to be on a lower dose, will have to see how my body reacts. I also asked if Keytruda would be a possibility in the future, but Dr said it is the same drug as Nivo so would make no difference. Dr’s also mentioned a repeat of the isolated limb infusion, as well as IL2. Hopefully, will not have to go there…

I wish I could remember ! It was one of those times that you are searching for one thing (droplet metastisis) and then are lead on a path to many interesting things. I do believe it was a medical Journal but not sure which one. I know this is a drug that has great promise.
I have been diagnosed with both Thymic Carcinoma and Thymoma so I have spent hundreds of hours trying to find detailed information on these TWO cancers, as recently as 10 yrs ago some Dr.s considered them one and the same and/or Thymoma was not even listed as a cancer. Many times it happens that the more information I get the more confusing it becomes. So am hoping to find some people with Thymic Carcinoma , even my dr.s at Mayo-Rochester do not know why I am still alive my last onc. called me his miracle patient and I have truly been blessed.

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