Opdivo

I am new here. My husband was dx with inoperable NSCLC in March 2016. Had 6 weeks of radiation and Taxol and Carboplatin without success. He still has metastasis and now a new area. They want to start Opdivo. The reviews are horrible that I have read. Anyone have experience with this med? I wonder if we need to get second opinion not just because of the suggestion of this med but they stated he can't get anymore chemo either. After his chemo cycle he also had triple dose of each Taxol and Carboplatin twice in August. He really trust his oncologist but I feel as they are giving up.

Thanks

30 Replies

oldestnewest
  • Janice. I too was dx with stage 3b nsclc in March of 2016. I flew to Mayo and they treated me with carboplatin and taxol with 30 radiation treatments. My tumors were completely dead after 4 weeks. This is very unusual. My reason for telling you this is if cancer reappears my drs say opdivo or katruda will be an option. Hopefully someone on here will have taken opdivo. Please do not give up ever! I take a supplement called AHCC. PLEASE GOOGLE IT Read the research and see if this is something you would consider. My dr gave it to me when I was dx. It stimulates the immune system and several other things. You can buy this at your health food store or on the internet. You and your husband are in my prayers. The tumor was also inoperable for me. God Bless

  • I will look up this AHCC for sure. We started to go out of state but he wanted to remain near our home town but now I think he will be willing to try anything. Thanks for your information. He was dx March 2016 also. After his 30 radiation treatments and all that chemo making him sick it was like we were in total shock when the pet scan came back with bad news.

  • It was likely a mix of both the high intensity radiation and the Carboplatin that makes him feel like hell. I had 12 rounds of Abaxane/ Carboplatin. Which appeared to totally wipe out the cancer cells. Six months later,it came back in a much more aggressive form. Oncology switched to the combination of Gemcitabine/Carboplatin for 16 rounds. My body started rejecting the Carbo by the 4th round. Then they started steroids and benadryl pre chemo,to control the side effects. Round 12 of 16,I had a major reaction in the chemo clinic.

    And still,they completed the 16 infusion protocol. I have never felt so bad,for so long,in my entire life.

  • Janice. Absolutely get a second opinion.

  • I think we are going to. Afraid not to.

  • A second opinion is always s great idea. Opdivo is Standard of Care now following progression after a course of a platinum based chemo. Like any cancer drug it has risks.

    It is not the miracle drug but it's close for some. Like most chemo agents it works in about 15% of patients who use it. It works better in individuals who had multiple risks for lung cancer -especially smokers. It is not recommended for patients who have autoimmune diseases

    For the patients for whom it works, the side effects are much easier to tolerate than standard second line chemos.

    This link is to another thread here that shows just how well opdivo can work in s very short period of time. The pictures are of a cancerous lesion that has broken through to the outside and were taken just a couple short weeks apart.

    healthunlocked.com/freetobr...

  • Hi, I am on Opdivo after failed chemo. Had a left lower lobe lobectomy after the Opdivo stopped the growth. I still have one inoperable lesion that is non-active. I receive treatment every 2 weeks. I am an ex smoker. I am so thankful. Just research all options ,will be rooting for success!

  • Hi Frisk. I don't know where you live, but have you looked into Gamma knife therapy?

  • Thank you I will check out this link also.

  • A second opinion can never hurt. I am on my 5th primary cancer and chose to have a 2nd opinion this time. Turned out it was a very good choice. Some docs are behind the times, and others ahead of the times. I do not know anything about Opdivo, but the option might not be as bad as you read. My oncologist told me to never read anything older than 6 months, and even then be very careful because things change fast and what we read is at least 2 years old (peer review, re-writing and another peer review often delay publication) and often no longer relevant.

    Also. I have a friend who finally listened and got a 2nd opinion - turns out his doctor's protocol was 6 years out of date. He chose to go with the newer protocol and is now leukemia-free.

    If you feel the doctors are giving up, perhaps it is time for a 2nd opinion to check your options. It can never hurt, and if the original doc doesn't like it, then he doesn't have your best interests at heart.

  • I told David we need a second opinion we can't worry about hurt feelings at the present. I truly don't think the center we are going to is as up to date as some I have read. I will say though his oncologist is a very caring doctor.

  • Janice,

    If you want to see what cancer centers are designated by the National Cancer Institute (and locate one in your area), take a look here: cancer.gov/research/nci-rol...

    It is easy, you just type in your state and region and there it is!

  • Your husband and I could be twins. I had the exact same dx at same time with same treatment. I had some success with shrinking tumors but still got mets to brain. That was radiated with success. Now i am on Keytruda. Had my third round 2 weeks ago. Going in Friday for CT to see ifits been effective. I feel great so I'm optimistic. I realize there are conditions for this drug but it doesn't hurt to ask. I'll keep you informed. Good luck.

  • Please do keep me updated!

  • Janice,

    Welcome! So glad you joined us, as you can see people in this community really want to help and they are great at supporting one another. If you are interested in information on second opinions, take a look at cancer.gov/about-cancer/man... just scroll down to Getting A Second Opinion From Another Doctor. It is always a good idea to get another opinion - please consider it seriously! If you have questions, feel free to email me pbezruki@freetobreathe.org or call 844.835.4325.

    Please keep in touch!

  • My name is Renee I was dx a year ago chemo did not work for me. I been on Opdivo for 9 months my tumors went from 6cm to 3cm! My hair has grown back my energy level is good, no nausea or vomiting. I am doing great on Opdivo treatment is once every two weeks for an hour. I hope you husband the best with his treatment. I was first dx I was given 6 months but with prayers and Opdivo I am still here and doing well.

  • Thanks so much for the information.

  • Hi Janice. I was DX Dec of 15. Went through chemo and radiation cancer came back in August. They tried opdivo and didn't like the looks after three treatments. Put me on ketruda and I went for my first scan today. I have not had any side effects so far. I will find out how it is working on the seventh. So far I feel great. Hope this helps you make your decision.

  • Dragracer, will be anxiously waiting to hear how it goes!

  • Janet..stay far away from Opdivo..I believe that it definitely contributed to my wife's passing away on Jan 2nd 2017..One of the major side effects is Pneumonitis or what I'd rather call Pneumonia ! Not good especially when the immune system, kidneys and liver are already compromised. She went to the hospital twice after being given Opdivo twice..i would not recommend this stuff at all..

  • I saw Pneumonitis was a side effect and that is what has me worried. He has had Pneumonitis for the past 4 months have been on treatments for that also without results. CT and PET is also still showing

  • Janice..If your husband has already had Pneumonitis for the past 4 months..it seems that it is ultimately giving him new issues that he has to worry about.This pneumonitis is, I believe, nothing to fool around with. I'm not a doctor but I just would not continue with Opdivo. of course i cannot prove it, but I really believe that it contributed to my wife's passing. She too was on carboplatin and also abraxane which did not work, plus 5 days of Direct Beam ( i think that's what it's called) Radiation which contributed to her immune system being seriously compromised. Janice, everyone's immune system is different. My wife's oncologist said that he had some good results with a FEW people taking Opdivo so that is why she tried it. Again, i believe if your husband is still suffering from Pneumonitis that, to me, is a definite red flag not to continue with Opdivo. I am praying for you and your husband for his healing. God Bless You..

  • Thanks for the info and yes he still has Pneumonitis. Was on steroids several months without any results at all. This why I was afraid of Opdivo since this was one of the side effects.

  • Exactly Janice..I really believe that this Opdivo is very dangerous..God Bless you and your husband and I wish him success..

  • Opdivo works miracles, if,your body has the receptors it can connect to.

    The new commercials for Keytruda,do a good job of saying who their immunotherapy drug will work with. They flat state,without the receptors, they won't even consider you a candidate.

  • Not true Angie..They did consider my wife as a candidate and no mention was ever made regarding receptors.. End result.. Pneumonia ( not pneumonitis) but full blown Pneumonia and Kidney Failure..followed by death...

  • I was on Opdivo during it's trial for 8 cycles. At first, it connected with my immune system. I could feel a difference. Saw the way the mucus cleared up,the coughing reduced. Then I tell when my immune system quit accepting it as well. It was following the 6th cycle oncologists told me it wasn't working, but they'd give it 2 more cycles to be certain. Believe me,there was nothing I wanted more wished for,hoped for, prayed for than for the drug to work. A chance at a cure. It was a chance I had to take.

    Angie

  • hello Angie..im going for my 2nd Obdivo tomorrow..i have melanoma in my lungs . I'm doing allot of reading on hemp oil and frankincence . Some tell me I'm crazy but I don't have 100% faith in cancer meds . The Obdivo hasent had any bad affects on me yet , like I was told to expect , but I just started a couple weeks ago . I hope and pray the best for you . dadeo776@aol.com...if you want to contact me....Spiro

  • Thanks so much for your reply. My husband and I will learn Tuesday f he starts Obdivo. I will also send prayers up for you as well.

  • if 1957 is your birthday.. mine is 1956 :)

You may also like...