experience with Opdivo?

Hi , is it just Nivolumab/opdivo you’re having?

Nivolumab is very similar to Pembrolizumab the single treatment I’m on, with not many side effects just tiredness for a few days after each dose. I am not a straightforward adjuvant case though. My long story is in my profile. I think as your melanoma was on the large side perhaps they are offering you the choice of adjuvant treatment to give you more protection. After breast cancer patients always have adjuvant treatment after their surgery. The thing with melanoma adjuvant treatment is it’s always just in case of a spread when no one knows wether it would have or not. It acts on any melanoma cells that are too small to see, but your immune system might have been able to deal with them itself, or perhaps not. I wondered if this was your first melanoma, and if there was any other risk that you have spoken about to your team like family history or an occupation that meant you have been in the sun a lot in the past for example. A few years back adjuvant treatment didn’t exist for melanoma, you would be on just watch and wait to see if it did or didn’t spread. If the side effects are too much you, you and your medical team can presumably discuss stopping it, but you could discuss that with them before you start. 

My tips would be, make sure you are hydrated prior to your Iv being inserted, take something with you to do, although the treatments quite short 30 mins plus cannula and saline drip before and after, plus any hanging around in queues = between 1 hour and 2 hours when I go in for treatment. The first time I had it they gave me tablets for diarrhoea just in case to take home with me. I haven’t used them but I have needed antihistamine for a rash. They should give you a card which has there 24 hour number on it to report any side effects ASAP and to carry with you at all times to make other medical people aware that you are on an Immunotherapy, as this may affect any treatment they were planning for you if you were to go to an emergency place instead of seeing your own team.

when do you start treatment ? 

Good luck and I hope some others pop to say hello.

Hi KT,

Thank you so much for your long message and your encouragement! I read your story and you've really been through a lot, but it's so encouraging how effective the treatments have been. Good for you!

This is my second melanoma, but the last one was twenty years ago. Luckily it was also completely removed and the lymph nodes came back clear. I'm Australian (so massive sun exposure as a teenager) and have very fair skin and lots of moles and over the years I've had lots removed as well as a basal cell carcinoma. They have staged this melanoma as 3C because of the local metastasis. I will go ahead with the treatment (yes, it's only Nivolumab/opdivo). I'm now booked to have the first infusion next week (two nights in hospital) and after that it will be fortnightly 60 minute infusions for a year. I have my first appointment with an oncologist on Monday and I'm looking forward to that to ask all my questions. I will be able to go to that practice hopefully for the fortnightly infusions, and it will be great to have one person to talk to. In the hospital they have no time and it is a different doctor every time.

Thanks so much for your tips. You've helped me feel more positive about it!

Best of luck with your continued treatment too!

Hi ana ri (and KT - "Hi KT"),

      I am in exactly the same boat as you. I had a lump under my arm which came back as a metastasis of a melanoma. It was removed along with the lymph node it had gone into and all the nodes around it, the pathology from those came back clear. They could not find my original melanoma. I had blood tests, CT scan, PET scan, full skin checks etc. etc. and nothing. So, I was put on a 12 month treatment of immunotherapy using Opdivo because my oncologist said it was better to treat me as a Stage 3 rather than a watch and wait Stage 1 just to be safe. Before my treatment I had an education session with one of the nurses regarding side effects etc. and came out dreading it as there were potentially so many. Everybody has obviously heard the side effects of chemo and this seemed as bad if not worse. However, after 5 treatments I have had little or no side effects whatsoever except feeling a little tired once or twice. My treatment is once every four weeks and lasts just over an hour, as KT its the waiting around that is the most monotonous part of it. I am English but living in Australia and thought because of my dark complexion and the fact I was over 40 when I came to Oz (I'm 57 now) I wouldn't be affected by skin cancer. All I would say is, having spoken at length to the nurses and other patients having immunotherapy there is nothing to be worried about. The chances of any major side effects are very, very small.  I hope your treatment goes well and you have a positive outcome. Take care. Chris

Hi Chris,

Thanks so much for your message! In the meantime I've had two treatments and about to have my third tomorrow. So far I haven't felt anything at all, which makes me feel fantastic and very healthy in fact! I also had a doctor explain it to me - which mainly consisted of listing all the side effects (she didn't even sit down when she talked to me). She certainly didn't say how common/uncommon they are or what the chance of success is, or even really why they were recommending it. That was in the hospital. At a private oncologist's office, a doctor took a lot more time and seemed really surprised that I was so concerned. He made me realise it really was seldom a problem. The first treatment involved two nights in hospital (just in case I had an allergic reaction I guess), and I was worried about it, but just before they gave it to me they said, you won't feel anything and if you get any side effects, they won't come for a couple of months at the earliest. And I was like 'oh, if you'd told me that before!!!!' And so it was ;-)

My treatment is once a fortnight and last time it took 90 minutes. I'm feeling very positive. It sounds like your doctors are taking good care of you. Will you also have 3 monthly ultrasounds, skin checks and six-monthly CT and Mri scans? It is interesting to hear what they are doing in Australia. I always think Australia must be at the forefront because they have so many cases, but I don't know really.

I'm 57 too, but the damage to my skin was certainly done as a teenager or kid. On the other hand, a lot of Germans are getting skin cancers and they've spent most of their lives in the cool north!

All the best for you and your treatment!

Ana

Hi Ana,

     Thanks for your reply. It sounds like your treatment is going really well which is great. It is amazing the inconsistencies between the same treatment in different countries. Every 4 weeks (I have 480 mg of Nivolumab (Opdivo)) I stroll in at 8am and I am in and out in 90 minutes, no fuss (except for the odd miss of a vein by the nurses). I have my blood tests 4 days before and after my treatment the oncologist needs a chat, mainly so he gets his fee - I'm in Bundaberg and he flies up every Thursday from Brisbane. I've had my oncologist explain how the immunotherapy works and have also read a couple of useful papers on it from reliable sources like the Cancer Council Australia so am aware how it all works. What they don't seem to be able to answer is "Will it work for me?". There seems to be no explanation as to why it helps some but not others which, for me, mentally is difficult. Is it helping me or not ? Does the fact I'm having little or no side effects mean it is not effecting my immune system at all ? If I was having side effects would that be good as it shows it is helping my immune system? I don't know. What is also interesting is the different follow up on going checks various people have in different countries. I see my surgeon once every 3 months, I have a full skin check every 3 months, I have blood tests for my surgeon (once every 3 months where he checks tumour markers) and blood tests before each treatment (every 4 weeks to check my blood count and liver / kidney functions etc.). I haven't had a scan yet since the initial CT and PET scans but believe I will have one every 6 months. I started my treatment in January so my first one is June. Others seem to have scans every 3 months. My treatment is planned for 12 months however my follow ups will last for 5 years decreasing in regularity over time. As you are obviously aware skin cancer here, especially in QLD is rife. I am a member of a golf club and there are literally dozens of members who regularly have bits cut out.

I actually worked in Germany for 4 years 30 years ago. Loved the place.

Take care and please keep me updated how you are getting on.

Chris

Hi Chris

It sounds like the schedule for your scans is the same. I think there are international recommendations based on the stage they place your melanoma at. After some probing I found out they've put mine at 3c due to the fact there was a small local metastasis near the original which they found after they'd done the surgery (it was in what they removed around the original tumour), it was also my second melanoma, although the first one was 20 years ago, and it was pretty deep (4.5mm). Apart from that though, they think they got it all out and the lymph node was clear. This staging is quite complicated because every case is different, but the recommendations are internationally recognised (I think!). A doctor pointed me to a document on the internet which lists all this in great detail. It's in German though.

I get 156mg every 2 weeks, but the oncologist did say that they might make it a bigger dose every 4 weeks if I don't have any side effects. The amount you get is directly related to your weight. I think it's a good sign that you don't have side effects. I see it as my body working with it to kill any cells! If your immune system overreacts, they might have to take you off it for a while, and that would be more of a concern.

I'm going to a hospital for the infusions at the moment. I have to get there at 8 to get the infusion at 11! Although the first one took 60 mintes, it's taken 90 minutes the last two times. I don't know why. So I end up getting out about 12.30. I could go to an oncologists for it though, and that would take only about 2 hours in total. They do the blood tests at the same time for the following time, which struck me as a bit strange at the beginning. At the hospital I have to supply blood results a couple of days before, so at least the effects of the last infusion would show up. I might switch to the oncologists though after a while, when I feel pretty certain about the whole thing.

All the best for you! Keep me updated too!

Ana