Share this:
amws
@amws

Posts: 3
Joined: May 19, 2016

opdivo

Posted by @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?

REPLY

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?

@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?

Jump to this post

My onc has not yet set up a schedule.

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

@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

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.

@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

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.

@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

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!

Hi @burrkay,
I can imagine your distress at reading the press release from Bristol-Myers Squibb about CheckMate-026 http://bit.ly/2bbVysr that states “a trial investigating the use of Opdivo (nivolumab) as monotherapy, did not meet its primary endpoint of progression-free survival in patients with previously untreated advanced non-small cell lung cancer (NSCLC) whose tumors expressed PD-L1 at ≥ 5%.”

That’s a mouthful of medical jargon! Here’s my attempt at putting this into plain language. The study results so far have shown that Opdivo used alone (monotherapy) has not helped patients with advance non-small cell lung cancer who have not been treated with any other treatment and who have tumors that have PD-L1 biomarker higher or equal to 5%. In an earlier post, you mentioned that your wife had a different chemo before starting Opdivo treatments. Therefore I don’t think the information about the CheckMate-026 trial refers to your wife’s current treatment plan.

Bristol-Myers Squibb published a second press release about the trial called CheckMate-227 http://bit.ly/2bsYtOv. CheckMate-227 is an ongoing study exploring the potential of the combination of Opdivo plus Yervoy for PDL-1 positive patients, and Opdivo plus Yervoy, or Opdivo plus chemotherapy in PD-L1 negative patients.

First-line therapy means the first treatment given for a disease. http://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=346494 I encourage you to talk with your oncologist about how this news affects you and your wife, since Opdiva isn’t your first-line therapy.

I hope this helps a little bit. Please let us know what you find out after talking with your oncologist.

@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?

Jump to this post

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?

Liked by twinskl

@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?

Jump to this post

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.

@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?

Jump to this post

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?

@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?

Jump to this post

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…

@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?

Jump to this post

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.

@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

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?

@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

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

@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.

Please login or register to post a reply.