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Joining as an advocate for my mother who has stage 4 non-small cell lung cancer since May 2014


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Hello to Everyone,

I do not have lung cancer myself, but am joining as an advocate for my mother. She was diagnosed with Stage 3AB Lung Cancer in May 2014 & now considered stage 4. I joined to be able to research information and help others with information I am equipped with, due to me following her hard journey through this terrible disease. I hope all of you don't mind. I am trying my hardest to help her fight the fight & today she has been in the hospital for 31 days straight & is currently in ICU on a ventillator after undergoing a Bronchoscopy yesterday. My mom started immunotherapy with Opdivo after t was approved in March 2015 & has had lots of success. We are trying to figure out the culprit that caused her to enter the hospital because initially her oncologist thought it was related to the Opdivo but after much research & being by her side for 31 days in the hospital, we aren't too sure the Opdivo is the culprit. It all started with her high blood pressure & kidney problems when she first entered. It appears she had Pancreatitis that went unknown for some time & im thinking that's what caused the domino effect on the other things that occurred after that. She had almost every "Itis" there was. Oncologist said her "Itis's" were immune mediated related. She had Pneumonitis, Paracarditis, Hepatitis, Pancreatitis, & Nephritis. That led to her having issues with her kidneys & she ended up having bilateral Nephrostomy tubes put into her kidneys for them to drain externally & that was after failed attempts by stents being put in her ureter. She then started having problems with her gallbladder and doctors attempted a ERCP to remove gallstones but her bowels were too swollen for them to proceed & they then put in an External Biliary Drain. She had the Bronchoscopy after that, but that was related to her lungs because they found her left lung was collapsed & appeared she had a blockage. They did find a lot of mucus plugs that was blocking her airway & she also had lots of fluid around her lungs. They put in a drain to drain the liquid too. She's currently still intubated & im very hopeful she will overcome this too. She is much stronger than I am, that's for sure. She has gone through so much. She has fought so hard and I envy her for that. 

 

Thats the the basis of her situation but I have a lot more details. I have been watching her heart rate, O2 saturations, ABG results, Creatine & Bilirubin results, & other blood test results; as well as the medications she has been on while in hospital since she was admitted. 

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Welcome here!  Your mom has sure been through a lot!  You'll find hope and support on this site. I hope that you'll get some replies from people who have had experience with Opdivo and "itises" . Hang in there. Your mom is lucky to have you there.

Bridget O

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I join Bridget with a welcome.

Your description of your mother's problems is the most complex immunotherapy side-effect I've ever read.  I hope doctors are able to stop further deterioration and restore her organ function. That said, I wouldn't know where to begin to suggest a remedy.  I am messaging LUNGevity staff to make them aware of your post and see if we can connect you with Opdivo expertise.

Stay the course.

Tom

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Thank you so much to everyone. I can't even begin to say how thankful I am to come here & have this support for her. 

 

I do do know they gave her 2 Rimicade treatments while she's been here to help reverse the side effects, but it's too soon to know if they have worked in full. 

 

On another better note, she got off her ventilator this morning and is on high flow oxygen at 10LPM & her O2 saturations are great so far! Her left lung completely re-inflated.....I am in awwhhh and this is truly a miracle I believe.... 

 

if if I can help anyone about Opdivo, due to my mom having 47 treatments of it; I would be more than happy to. I do know she had two small tumors on her right lung that had no radiation and one large tumor on her left lung that was radiated. Then she had 47 fusions of Opdivo. After Opdivo, her large tumor "turned into scar tissue" & shrunk the two smaller ones some. :-)

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Welcome,

i am just amazed that she had 47 treatments.  My husband participated in a clinical trial for Bristol Myers Squibb that used Nivolumab in combo with Ipilumab prior to approval.  He only had 11 treatments before progression.  He must not of had as many side effects because he did not receive the treatment as long.  They did caution us that it could attack other good parts of your body.  He had neuropathy, fever, rashes and is on Thyroid replacement therapy as a direct result of it.  It sounds as if you are doing as much as you can to help your Mom.  Your an amazing daughter and I'm sure she knows and appreciates you very much.  

Sorry I'm not much help since our experience was much shorter.

Hope someone else can chime in with more info.  

Don't forget to take care of yourself also.  I know it's hard to think about yourself during all this but you must in order to stay strong for her.

ViviAnn

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Hi there,

I am glad you found the Lungevity forums...I too am an advocate for my mother who is fighting a recurrence of NSCLC and this community has been a big help in giving me hope and helpful information.  Although my mom has not had experience with Opdivo (she's on her 2nd does of Keytruda/Chemo) I feel your pain and worry.  It's exhausting sitting in the hospital, I hope you are taking reasonable care of yourself so you can continue the fight with your mom.  I am happy to hear your mom is off the ventilator...one step forward!! Take care!

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Hi Fighting- welcome.

I'm sorry to read about all that your mom has gone through.  47 treatments is alot of immunotherapy!  It's not unheard of as some of the survivors I support have been on it for a very long time too. Very few people have no side effects and one survivor only took it 6 months in clincal trial at Hopkins and he continues to have no evidence of disease 4 years later.

I think right now there isn't enough research to predict what will happen when people stop IOs, so they aren't stopped unless there is marked progression.  IO drugs super-charge our body's immune system to fight the cancer but in doing so many times ramp up autoimmune related diseases and cause a ton of side effects.  (More on side effects here http://www.webmd.com/drugs/2/drug-167499/opdivo-intravenous/details/list-sideeffects )

It sounds like your mom is being watched closely by her medical team and by her best advocate- YOU!  

Keep us updated and know that we are all here for you and hoping for your mom's full recovery.

Best hopes,

KatieB

 

 

 

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Thank you to each & everyone of you for your beautiful & helpful responses. I'm hoping I can give back to people on this forum by giving helpful information. I believe even if one person is helped, that's better than none. I'm learning too with all of this stuff and it's very overwhelming & seems there is always something new to learn about & research.

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