opdivo

Posted by amws @amws, May 22, 2016

I will be starting opdiva for treatment of lung cancer that has mestisised to lymphs. Does anyone have any feelings/opionins on it?

@lynnkay1956

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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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?

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@lynnkay1956

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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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

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@lynnkay1956

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

Jump to this post

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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My boyfriend begins a nivo-ipi trial tomorrow after first line chemo/radiation did not work. Originally diagnosed with Stage 3 NSCLC, shortly after ending first line treatment, bone pain led to a PET which showed metastatic NCSLC. It was likely Stage 4 all along, but was to micro to detect. He is really struggling with breathing, energy, appetite, etc. How long before we know if this treatment is showing positive results?

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