well went threw chemo and rad.for stage 4 lung cancer,now my doctor has me on imunotherpy (opdivo)any one ever dealt
with this before.doctor says if it works i will have up to 2 yrs if not then 1 yr.
stage 4: well went threw chemo and rad... - Lung Cancer Support
stage 4
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foreverinbjeans
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DenzieModeratorVolunteer
There are other types of chem that can be given if/when this fails and there are several new drugs in development. You might want to consider being seen at an NCI/NCCN designated Comprehensive Cancer Center. You need a dr who will fight for you.
Odivo is still a relatively new drug. We really don't know what the long term results will be. There have been patients who have experienced that the immunotherapy retrained their immune systems and their cancer has completely disappeared. Others have had their immune system go into overdrive and turn on their body leading to organ failure. There is no way to predict where you will place within that range.
I have had chemotherapy and radiation , imunetheophy is what my Dr. Wants to try next, when the lung tumors grow more.
If it works for you, it's great!
Side effects are scary, but all of is..
I agree start within yourself, change your diet, drink healthy water. Do what you can and what works for you in your battle!
It helps me when I have a plan in my fight, I feel like I'm doing my part. I do my research, put it through my filter and do what works for me! I have a great "Warrior soup"
Take care and God bless , please continue to share!! It all helps!
SerreckoVolunteer
I took part in a clinical trial at Johns Hopkins in Baltimore, MD but after about 2 months I was removed due to complications. But, I was also told it did not appear as if the immunotherapy was helping. So I started chemo soon after.
I had a set of scans this past Friday at Hopkins, and it appears the lung cancer has slowed down, and almost stopped, and some tumors appear to have shrunk a little. However they spotted what looks to be cancer on my right femur. However, I am still in the fight.
Watch Cancer: The Emperor of All Maladies on Netflix or Amazon Prime, or just buy the DVD from your local PBS station. The program talks about immunotherapy as the next field of research that shows promise, and how way back in the late 1800's it was first raised as the best defense to fight cancer. BUT please, find it, and watch it.
I would always suggest cancer patients take part in clinical trials. It might not save YOUR life, but it will help down the line.
Mike
So much to think through, I am glad you are reaching out to this community. The advice and support given is priceless. I would urge you to remember that you are not a statistic; your body is unique, your life is unique and so those numbers lose their importance. If you are interested in reading a little more about immunotherapy and even about what statistics mean in a diagnosis, feel free to go to our website (freetobreathe.org). Please know that we are all thinking about you and cheering you on!
This is same Immunotherapy my dr is putting me on next wk. Scarey but if it helps, I'm in for it. Keep me updated on how your doing. God bless you!
you know this wont get rid of it,it just helps(in my case anyway)Hope everything works for you.........keep in touch with me
Unfortunately I was told that too. It just prolongs my life a lil longer.
yea dont know which one is better tho,going threw this again is hard,i will be stopping after nov.11th.thats wene the doctor says if it helping or not.just dont know if i want to keep prolonging this nasty crap.
What are your side effects on it so far? I've been reading about it & it's scary but what do I got to loose? I had a rib bone biopsy 3 wks ago for clinical trials that they thought would help me. Low & behold they did a MRI on my brain & found a 6 mm x 4 mm lesion on right frontal lobe on my brain. Cancelled me out of clinical trials. Hang in there, we can live a lil longer. I pray this helps us stay longer.
so far i am backed up(if ya know what i mean)been trying everything.and a slight headache that just doesnt want to go away.would you like my email?do you do facebook?
Sorry I don't do any of those. I wouldn't be on here if it weren't for my wife telling me all yalls support ok n here would help me. I agree with her, it helps
ok then, we will keep in contact here.have a good day and ask away anything i might be able to help you with.
I have been having problems with both of them for a month now. Had a cathader for 6 days. I made them take it out. I can't deal with that. They said my prostate is swollen. My organs are not functioning like normal. Don't know how much longer I have. Dr said 2 yrs no, 1 yr no so I guess few months. Hurts to no end
I'm sorry you are having so much problems.have you gone threw chemo and radiation?and back to chemo that you will be doing next week.doctor told me the same thing too.But i want to do the right to die drug,as i dont want to totally fall apart.i want to go out with some dignity.the doc says he will call in hospice,when he does then i will be searching for it.I dont hurt now,i feel lucky that way,i think it bothers me more not to hurt then to hurt,because if i hurt then i know something is wrong,now its just a waiting game.....I am truly sorry you hurt...........
I'm so sorry to hear this about what your dealing with. It's a million things running through our minds. I keep having these emotions of anxiety, jaws wanting to clinch, anger. Thought it was steroids but it's a lil of everything. I've done Chemo & Radation & start Obdivo next wk. Dr want call Hospice yet
hang in there....remember you decide how much you can take....feel better,i am doing the opdivo too,have an doc appt on the 11 to see if we will continue or not,if so they will put a port in,had a pic wene i was doing chemo.wow looks like we are in the same position....take care,keep in touch
Dr is starting me on Obdivo tomorrow at 9 AM. Side effects are scary enough to frighten me away. My brain is swollen. I have to do this though. I have to live longer. We have 8 grown kids & 10 young grandkids. My wife is so amazing, love her deeply. I have so much to want to live for. We all got to fight. Hang in there with me, us.
It's Teddys wife Lisa. My email is donlia2004@gmail.com & my Facebook is Lisa Ann Harley Huson. Teddy has a FB but he never gets on it. How are you today?
Thinking of both of you, just need to let you know that.
I am glad your doctor talked about hospice, so many people don't consider that help - they provide that extra support and dignity that is so important. But only when it is time - having the discussion is just giving you information, not making a decision for you...
Forever, forgive me for asking, but have you told someone on your medical team about being "backed up"? You shouldn't have to endure that too.
Again, thinking of you both, please keep in touch.
I have Stage 4 lung cancer. I was diagnosed with Stage 3B non small cell lung cancer in August 2003. I had 4 treatments of aggressive chemo and 30 treatments of radiation. I was in remission until December 2015. I am now Stage 4, had fluid in my lungs and have nodules on my abdomen. My oncologist tried the same treatment as before but I had a severe reaction to it. I have been on OPDIVO since February but it has not worked for me.
My husband did his hr of Opdivo per IV yesterday plus a shot of Zoledronic Acid to help bone cancer. We ended up at the ER at 6 this morning. 102.9 fever, chills, dehydrated, sore throat, aches & pains & rash. He was given benadryl, Adivan, Tylenol & Tordol. Given 3 IV bags of fluid. They said his body didn't accept the Opdivo.
oh no...... so sorry he is having so much trouble. I have been looking for you in my email,so glad you wrote.sounds like it wasnt good for him,whats next?you keep in touch now.thinking of you .
When I saw Zoledronic Acid in your post it quickly got my attention.
I am stage 4 lung cancer, and it appears as though I have bone cancer on my right femur, near the ball joint. A week ago I was given my first dose of Zoledronic Acid to help, or at least attmept to strengthen my bones and the foloowing morning my left shoulder hurt just to move it. Part of the side effects of Zoledronic Acid could be joint pain. Well, my left shoulder is still painful, but if that is all I have to deal with, for now, I'm good.
Hopefully your husband was able to recover fully after the trip to the ER. Having cancer or being the caregiver of someone with cancer is the best way, I can think of, to find out exactly what one is made of, and how strong your relationships are.
Keep us posted and keep up the fight.
Mike "Serrecko" March
It's Teddys wife Lisa. Hospital called 2 hrs ago & said his blood work from hospital yesterday morning, 1 of the test came back & shows bacteria in his blood stream. So here we are back at hospital again. Their giving him IV antibodics now. He just can't catch a break! Mike his right shoulder is hurting him so bad. They say it's the cancer. Ty for writing it helps him when I read that yall are going through the same thing. Foreverinbluejeans, thank you we have been worried about you as well. I know everyone don't just sit on this site all day but he has me constantly seeing if anyone has wrote anything new about their situation. I take my heart & lay in on the floor for all of you. It hurts so bad to know everything yall are going through. Horrible to have to deal with this. My husband doesn't even have color, he's all grey looking. I pray yall have the best comfort, love & support to help yall. Hugs!!
I am so deeply sorry for everything you are all enduring. Thank you so much for what you do for one another, and may you find some peace in today, and rest tonight. May tomorrow offer you something to hang onto. You deserve nothing but kindness. Hugs to everyone.
Thank you so much! Teddy is in so much pain. Dr's got his meds all screwed up today & lowered his Morphine from 30 mg he's been taking to 2 mgs. It took me all day to get it right for him. How they can let a cancer patient suffer so much is beyond me. Teddy will be in here 4 days. We're praying for everyone!!
I am so sorry , and i dont know why they make people suffer so much,from the sounds of it maybe he should find another doctor.just doesn't seem right or fair to me.thats what i would do if i was in his posstion.esp.when they make mistakes on his meds.hope he is doing ok now.keep your chin up !
they wouldn't take me because im on medicare and arrp my dr, started me on odivo june 8 had cat scan 2 weeks ago and my cancer is in remission I had it in both lungs liver and bone
I'm in my 4th year of treatment for adenocarcinoma I've been on Alimpta till last Monday they started me on opdiva due to new activity, no side effects so far
yes great medication you can contact bristol myers squibb & the medical education folks will assist you
always look at clinical trials
Thanks everyone for responding. Oncologist finally came to his room in hospital yesterday after I called them again to please come fix his pain control. He is now on 75 mg Fentenol Patch. Pain level is still at 5 or 6.
well i'm glad that he is doing alittle better.5-6 is still so much pain.hope he gets feeling better.keep in touch
We're finally home. There's no place better than home. Dr prescibed different meds. I called Oncologist & she said by all means don't take them. She said I could die of respiratory failure. So back to Oncologist tomorrow. How are you doing?
doing ok,i have my treatment on wed.I just cant believe how easy it is for doc's to give people that could kill them.it seems to me that doctors should at least talk.I just dont get it.glad your home tho.
I had 6 months of Opdivo and my oncologist took me off of it last week. It didn't work for me. Now , I don't know what to do. I'm frightened.
yea well i dont think its helping me either.but i have only been on it for 2 mths.we will see.It cant cure us but keep us comfortable.if it helps me my oncologist gives me 2 yrs and if not 1 yr.i just wonder wene they start counting,the time.dont be scared,i'm ready and knowing that helps me alot
I was given 3 months to live in 2006, Then I received Avasten, under protest of my then oncologist. I took it well for a year in combination with Taxotere and Carboplatin. I had my port removed in 2012, then it resurfaced in 2013. Very slow growing. I had a biopsy in fall of 2015, it showed the KRAF mutation. Nothing much out there for that.
I just completed 6 months of Opdivo , and my doctor took me off last week.
Now ,I'm scared.
How did you change your diet/ what do you eat ??
What a roller coaster ride you are experiencing, please keep advocating for yourself. Thinking of you.
All of you are in same boat as me. I had 1st treatment of Opdivo last wk & been in hospital the rest. Ran fever all night. Somethings going on that's not right. I have another treatment next wk & scared it's going to do same thing to me. I'm scared too. I know I'm dying but what to expect is scary. I honestly think hospice would treat me better but then I loose all hope of more time. God bless you all. My prayers are for each one of us to live a peaceful life what time we have. When the man above is ready for us that we go peaceful not painful. Hugs everyone 
Thank you for answering me and all the information.
I am generally an upbeat individual , but when the doctor took me off the Opdivo, it came as a surprise, rather a shock.
I feel good, I really felt it was helping.
Oh well, I will go the very healthy route .
Thank you again, Lea
Dr started me on 100 mg Fentenol Patch today. Pain is horrible.
I thought I would write for my husband Ted, (Gaines). He's hanging in there & each day is another day together. Radation on his right rib bone for 2 wks. He's done 3 Opdivo Treatments. Going November 23rd for Catscan. He's on 150 Fentenol Patches & 60 mg Morphine release tabs plus Ativan & Gavabentin don't know how to spell it, 2000 mg a day. I hope everyone is hanging in there. Sending love & prayers yalls way
I am on hospice care now,but what a juorney,someday i will right you eveyrthing when i figure how to put things in perspective.its a good ride
Foreverinbjeans God bless you! Please write me. My email is donlia2004@gmail.com
I just lost a beautiful friend 2 wks ago from same thing my husband has. She was given 6 months by drs. Went on Hospice and lasted a month. Broke my heart. Beautiful soul she had.
How are you doing? We've been thing about you & praying for you.
Bless you all for carrying one another with such kindness and courage. I pray that you know no more pain, that you have loved ones close to you, and that you know how priceless you all are - simply beautiful souls gracing us with your presence here. Hugging each one of you.
My husband has been running fever on & off for 3 wks now up to 103.4. They said it's tumor related & nothing they can do. So I keep giving him Tylenol & Advil to break it. We're still waiting on his Catscan on November 23rd to see if Opdivo has helped. We think it hasn't because we feel a huge tumor under his right arm and backside. He lays in bed all day & night, sleeping mostly. I pray for him constantly. They uped his Fentenol Patches to 300 mcg now plus 60 mg Morphine release tabs & 2100 mg of Gavabentin a day. I pray for each one of you as well.
Lisa, I will certainly be holding you both close in my thoughts and prayers on the 23rd. It sounds like you are doing everything you possibly can to keep Ted comfortable.
I hope you are finding moments of ease in all of this, a time to remember your value and worth too. You are strong, but also very fragile right now. Please take a moment now and then to honor your soul: listen to a favorite song, remember sweet times, cry or laugh or both, reach out to a friend, pet a dog...
Your loving care and advocacy for Ted shines through, and that kind soul of yours needs nurturing along this hard journey, just please remember that.
Hugs to both of you and will be waiting to hear how things go - thank you for keeping us updated!
Thank you so much! I often walk around outside to shed tears. It's a hard road for all of us. Everyday he's worse. Fever was up to 103.6 at 4 AM. It takes hrs to get his fever to break. I catch myself asking God is this the day? My heart goes out to each one of these people on here. The care giver is in the fight with them. I caught myself going downhill with my husband when we found out he has cancer. I wasn't eating, my happiness was at his level of why try to be happy. I had to have a day away with my kids. They lifted me back up. I'm strong for everyone including myself.
Lisa,
I am so glad to hear that you took a day with your kids. There is nothing like time with those closest to us, they remind us that there is still something wonderful in our lives. Hang onto that and please know we are all with you. Bless your sweet heart.
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