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amws (@amws)


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

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Opinion????? I was in the first trial using this when it was still called MDX 1106 in 2010! Then it was called BMS-936558 when it was purchased from Medarex..then it was called Nivolumab…and finally has the newest name Opdivo!! I did a 30 month trial starting out with infusions every 2 weeks and then later in the booster phase of once every 3 months for a couple years. I was given 6 months to live…I was diagnosed stage 4 melanoma. I have been no evidence of disease now for over 6 years…this is the most awesome treatment! You don’t lose your hair, you can even work …my worst side effects were achy knuckles…and I got white patches on my skin called vitiligo…which is actually a good sign. I had mild flu like symptoms a couple days following the infusion but they lasted only a few hours. There was the achy arm/shoulder after the infusion. Stay hydrated and it doesn’t happen so much. It did blow out my thyroid which is typical, but they have synthroid that can fix that!! It’s my drug of choice and I call it my magic bug juice…it is saving hundreds of my friends with melanoma and now with other cancers it is working miracles! It basically exposes the cancer to our own immune system…there is this thing called PDL-1 that is on the cancer cell and this stuff basically hides the cancer from the immune system…but the Opdivo exposes the cancer to the immune system and the immune system can then kill off the cancer . It has been shown to keep 40% of us in durable remission. They believe after 5 years of no evidence of disease we are ‘cured’ …not guaranteed, but since I was in the first trial…I am a lab rat that is being watched carefully 🙂 Congrats that Opdivo was just FDA approved for your cancer as well!!- Lynn

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Replies to "Opinion????? I was in the first trial using this when it was still called MDX 1106..."

Thank you so very much. You gave me so much information. that I was not aware of or had even considered. I have a much better attitude about the future. I hope that my future will be the same as what you described.

I had previously read your post, and now my wife has had a recurance of her NSCLC cancer. The scan last week shows additional development of lesions, and the Oncologist has ordered a PET scan and brain scan to be done this week.
Not sure what the recommended treatment will be, but we are anticipating the outcome and would like more info on Opdivo. How many and what are the cycles between of the infusions.
We currently are being looked after in Jacksonville, but have a friend who would allow us to use her condo in Northfield, if needed. Nice huh!
We would like to do the treatment at Mayo, for obvious resons, but the hotel costs mount up quickly.

Okay, my wife has had her first Opdivo treatment and now on Friday Bristol Myers did a press release that the Opdivo tests are failing!??
Further checking into it it looks like the “first-line” tests are failing.
Does anybody have more info on this press release and what it means? Too much technical jargon gets me confused!

Mayo clinic in Rochester Mn. has a Hope House for cancer patients and families I believe. Maybe someone here has info on how to contact them?

Yes, Hope Lodge provides housing for Mayo Clinic patients and families visiting Rochester for cancer treatment. Here is more information about the Sandra J. Schulze American Cancer Society Hope Lodge in Rochester, MN http://bit.ly/2jcqvR7

There is Gabriel House in Jacksonville: http://www.gabrielhouseofcare.org/ We stayed there when my husband had a kidney transplant in 2012. At that time it was $35/night.

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