1. < Lung Cancer

Anyone on Opdivo (nivolumab) for metastic lung cancer?

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?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

twinskl | @twinskl | Jan 6, 2017
In reply to @colleenyoung "Welcome to Connect @amws. I'm tagging @lynnkay1956 on this discussion as she has recently written several..." + (show)
@colleenyoung

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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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...

REPLY
allisonsnow | @allisonsnow | Jan 6, 2017
In reply to @colleenyoung "Welcome to Connect @amws. I'm tagging @lynnkay1956 on this discussion as she has recently written several..." + (show)
@colleenyoung

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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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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allisonsnow | @allisonsnow | Jan 19, 2017
In reply to @lynnkay1956 "Opinion????? I was in the first trial using this when it was still called MDX 1106..." + (show)
@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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 19, 2017
In reply to @lynnkay1956 "Opinion????? I was in the first trial using this when it was still called MDX 1106..." + (show)
@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

REPLY
Gaybinator | @gaybinator | Sep 25, 2017
In reply to @lynnkay1956 "Opinion????? I was in the first trial using this when it was still called MDX 1106..." + (show)
@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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keeks | @keeks | Oct 5, 2017

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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