› Forums › General Melanoma Community › Immune Therapy – Opdivo
- This topic has 15 replies, 5 voices, and was last updated 5 years, 2 months ago by
mortalMike.
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- February 28, 2019 at 8:19 pm
Sorry folks been gone a while. I'm starting immunotherepy with Opdivo. Anybody have any thoughts on this drug? At the moment they say I'm cancer free.
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- February 28, 2019 at 8:39 pm
Hi Mike!
My husband started on Opdivo in January. Headed for his 3rd treatment next week. I think I recall you previously saying you were consulting with Moffitt. Is that where you will be having the treatment? That is where my husband goes.
From everthkng I hear Opdivo is an amazing drug and has helped many people. So far the only problem my husband seems to be having is bad insomnia. There are no reports of Opdivo causing this so I think it is most likely a side effect from anxiety.
Best of luck to you as you start this treatment!
Tania
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- March 1, 2019 at 12:22 am
Yes, Moffitt Tampa. Thank you
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- February 28, 2019 at 8:47 pm
The primer I shared with you a bit ago breaks down immunotherapy and opdivo in pretty good detail. I'm sure others will share their story. I took Opdivo for 2 1/2 years as an NED Stage IV patient. My last dose was in June of 2013 and I remain NED for melanoma with no further treatment. I wish you my best. Celeste
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- March 1, 2019 at 12:22 am
Thank you. Did you have side effects?
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- March 1, 2019 at 12:30 am
Yes…more than some…less than others…fatigue (but worked full time throughout, missing only 3 days of work), itchy rashes (used moisturizing lotion, hydrocortisone cream, and benadryl), joint pain (still ran, used advil), and wheezing (am a known asthmatic…would have flares after each infusion….managed with inhaled albuterol and inhaled corticosteroids). My most difficult problem was significant mouth ulcers….but that is actually pretty rare….though a few on this board have dealt with them. c
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- March 1, 2019 at 2:06 am
Hi Mike!!!
My son was Stage 3 when he was diagnosed last February…he started a years treatment with Opdivo last May…we have 6 more treatments to go and I am actually more nervous for him to stop!!! He has had very little if any side effects, a little tired I think after treatments but he is a teenager so sometimes it’s hard to tell the difference!!!
He was considered NED after surgery and half way through his treatment, his 6 months scans remained clear. So still NED!!!
I think it is a great option as adjuvant therapy…better to do something than nothing is what I thought when we made the decision to move forward with the treatments!!!! Good luck with your treatments!!!
Kelly 🙂
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- March 1, 2019 at 2:49 am
Thank you. What are the costs? Nobody has actually said yet
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- March 1, 2019 at 2:58 am
Costs are high. For me, its right around $10,000 a treatment. Then there is bloodwork prior to each treatment, periodic scans and oncologist oversight appointments. The Opdivo immunatherapy is covered by my insurance based on my staging status, but my annual maximum catastrophic yearly out of pocket costs were met in less than two treatments. Make sure that you check with your paticular insurance coverage and get pre-approval. My onclologist office did all of that for me, and I backed it up by calling the insurance company prior to starting treatment. There may be assistance programs to help with the patient costs if you meet certain criteria.
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- March 1, 2019 at 3:23 am
$10000 a treatment??? I have medicare and GAP insurance. This sounds like rich mans medicine. Nobody has told me I have a "stage". As a matter of fact, they said since I "dont have cancer right now" that I dont have a stage. Am I missing something? It seems now that before the treatment tomorrow, I need to have a "come to Jesus" meeting with them. Any thoughts??
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- March 1, 2019 at 4:00 am
Mike
Didn't mean to scare you with the costs. However, I certainly would have expected that you would have been presented with the financial information as well. Costs will vary some, as some providers have contract costs with insurers, and I assume Medicare but I don't really know about that. If Opdivo immunatherapy was recommended, From what I know, I would think that you certainly must be in the Stage III level and had metastized tumors in your lymph nodes and a SLNB procedure and positive pathology of the tumors. Are you working with a treatment team of oncologists that specialize in melanoma? Your words of their diagnosis "you don't have cancer" yet a recommendation of starting Opdivo immunatheraphy does not seem to jive to me.
I feel reluctant to give you advice on stopping treatment, but I personally would delay treatment until I had more information about the status of your disease including the staging contained in the pathology and scans/iimagery as well as the recommended long term adjuvnant treatment including the costs and out of pocket share of those costs. Finances are important, but there are ways to get financial relief and the treatment you need.
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- March 1, 2019 at 4:29 am
No worries, thank you. I am going to postpone my appointment for tomorrow. I have to get this costs thing and "staging" cleared up.
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- March 1, 2019 at 2:37 am
MortalMike
I am a just a little farther along than you in the recovery path, and had the same questions initially after all of my surgeries were completed and Opdivo was recommended as an adjuvant treatment. The National Comprehensive Cancer Network (NCCN) issues guidelines for Cutaneous Melanoma treatment that most oncologists use for baseline recommendations for treatment. For Stage III B/C/D staging (sentinel node positive) the use of Nivolumab (Opdivo) alone or Observation only were the options in the latest NCCN Guidelines (Version 1.2019) that my Oncologist presented. In his words, if you were my brother or best friend the Opdivo treatment is what I would be wanting you to do. There was a recently issued update to the Checkmate067 trial after 4 years that examined the results of trial patients use of Opdivo monotherapy (only Opdivo) and it remained statistically consistent with the prior trial results, that Opdivo monotherapy shows a 20% increase in the patients not having reoccurrence of disease after the four years over those that did nothing other than observations. So, statistics are statistics, and there are no guarantees that you will have the same results, but it is a basis of going forward with it as a best approach. My oncologist and oncologist surgeon explained that it helps "mop up" and potential disease remaining in body at the cellular level by letting your immune system to attack it. So, I would not argue with what you were told, but I personally was told you never know if after surgical dissections that you are completely "cancer free", as tools like PET-CT scans, CT scans or X-rays cannot tell at the cellular level if you have any melanoma in your body, as the imagery tools don't have that resolution, and will only show metastasized cancer.
There are lots of good recent information on the Opdivo site or other YouTube videos that explain how it works.
As far as side effects, everyone is different, but in general the data in the Checkmate trials and experience in the field show far fewer adverse effects than many other immunotherapies. For me, I have had three infusion treatments, and I have had minor fatigue and some Grade 1 nausea lasting only a day or two. There has been recent changes to the recommended treatment, either given as 240mg every two week or now they say 480mg every 4 weeks. You can search this forum, some people have no problem using the 480mg, but others not. I have been hesitant to start the larger dose due to not sure I want to experience a more significant adverse side effect.
Good luck to you, I would go for it if you have the means to do so if only for "putting everything on your side" in kicking the devil named melanoma.
Peace
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- March 1, 2019 at 2:51 am
Thank you. Do you know what the cost is?
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