Free to Breathe

Opdivo..What do You Know

Help. Doctor has changed mind again. He is now checking my insurance to see if it will approve me trying Opdivo. I have read about the side affects and am worried. Has anyone tried this immunotherapy drug? I read an article recently that Keytruda was doing better for certain people but it appears I didn't qualify (not the right markers) for Keytruda. Just a reminder I'm 4th stage lung cancer, has gone to brain (waiting to do next brain scan end of December as don't know if tumor is gone and have scar tissue or if tumor is growing). Last chemo was Alimta which I had such bad chemo fog that I had no quality of life...did get me time but at a large price. Help if you have any information on Opdivo. Thanks.

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Marymac, I’m on opdivo right now. I’m doing great. You should start with some radiation - it helps prepare/makes it more effective. The major side effects for me are dry eyes and dry mouth. It’s annoying but NOTHING like my previous chemotherapy - cisplatin and gemcitabin in 2009 and cisplatin and etopaside in 2016. I began opdivo in April.

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Thanks!!!

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Of course. Let me know if you have any other questions or concerns. I'm happy to help if I can. Sending you tons of positive vibes!!

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Hi Marymac, my mum was stage 4 lung cancer with mets to liver and bone as well as fungating lesions that appeared at the scar sites from previous lobectomy.

Mum has had a total of 23 treatments of opdivo and for the last 3 months mum has had the all clear with no cancer showing on her scans.

The only side effect she has had is or still has is her arthritis has gotten pretty bad. The oncologist said it can sometimes cause a type of RA which she is currently on steroids for.

I haven't posted on here for quite a while as I've been very busy with work as well as mums appointments but I posted some photos of mums progress quite a while ago.

I hope this helps.

Wishing you all the best xx

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Thanks!!!

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My husband has been on Opdivo for 7 months. He was inoperable and standard Chemo and radiation failed. We were concerned after reading and hearing side effects as well but he has done really well with it. He will be having another Pet scan in 4 weeks. I pray all goes well with you.

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Thanks!!!

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Hi, I hope you find a drug that will help. I am on Opdivo for 2 years and no serious side effects. Itchy skin , episodes of mouth sores. These side effects are manageable. See you Doctor and if insurance approved consider a trial.

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Thanks!!

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I have been on Opdivo for over 2 years. It has worked well for me. My side effects have been dry eyes and mouth, minor joint pain. I had to start a low dose of an antidepressant, Lexapro. I just found out people on Opdivo should not take steroids for three days following treatment. I think it makes the Opdivo ineffective. I have stage 4 NSCL and thyroid cancer. It has worked on both. My cancer was diagnosised in April of 2013. I had chemo, radiotherapy and more chemo. Opdivo is so much better than chemo. The chemo side effects can be brutal. I have a 6mm nodule in my left lung. Everything else has disappeared or is stable. I am wishing much success.

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Thanks so much. Just had my first treatment of Opdivo. Still nervous but you helped.

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Because Opdivo treatment is so new every time I had a side effect the local Oncologist didn’t know what to tell me. If you get eczema buy a steroid cream. Some people complain about rashes.

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Hi. Did you have a certain brand you preferred? Thanks.

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Not really. Over the counter steroid creams are low dose and all the same active ingredient. You can ask your doctor for a prescription for a stronger one. Mouth rawness can be an issue. Buy mouth wash and tooth paste made for sensitive mouth. Joint pain comes and goes. I use alieve as needed.

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Thanks

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Yes, generally they are mild.

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I have been on Opdivo for 2 years next month (stage iv nsclc) with great results. Main tumor shrunk from 17cm to just over 4cm. My side effects have been fatigue, moderate joint pain and one episode of a rash. The side effects for me are way less severe than the traditional chemo treatments I received. Wish you the very best!!!

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