immunotherapy Nivolumab Opdivo

Hi there are a few immunotherapy's and what  had, was  a different one.

I had a list of what side effects could happen, I was the first person my oncologist offered it to. I choses to go on it, and for me was so much better than chemo.

I did it every three weeks, for two years. I finished in 2018.

I wish you well in your desion.

Hi Ellie 73 Thanks for the response , I have have carboplatin and cisplatin  for my chemos already so hopefully not as aggressive , Suppose time will tell oncologist was being quite daunting with the side affect , There is not other option at the minute , All the Best Minmax 

Hi Minmax...i have had this one, for 7 years. It was started in August 2016 and stopped 2023. Chemo did not work for me. But immuno did!!! After 4 weeks all my lymph nodes on my neck and armpits shrank to normal. And i am still alive after now 9 years!!! Was given 10-12 months to live. 

Side effects for me....very dry mouth, thyroid playing up ( still on tablets) , a rash ( but got good steroid cream for it ). 

That was all , so much better then chemo. 

So fingers crossed it will work for you also. It did save my life!!! 

Hi Pet1968 Oh what a wonderful result . I have had chemo twice now , And a salvage neck dissection where they removed 33 lymph nodes 2 being cancerous. Apparently the oncologist said the max is two years on this drug. That is really an amazing story Thank you so much for sharing much appreciated. All the Best Minmax 

Hi I was on the same chemo as you it was brutal, first one gave me a heart attack, so yes immune was minder, as Pet has said, i had a rash and fatigue, though nothing  drastic.

Hi Minmax, When I was diagnosed, immunotherapy was not used yet as it was still being Trialed! My type of cancer does not respond to either RT or Chemo, so the only option I had was a different Trial Drug. The literature for it was 29 pages long, of mostly possible and probable side effects a lot more than with Immunotherapy nowadays.  I had only this option for treatment and nothing else, so I took it, clutching at straws! My oncologist said it might give me another 9 months. I was given 5-7months. She told me by that time I may qualify for immunotherapy!

Firstly I had to have a groin dissection when they removed 26 lymph nodes, 19 of which were cancerous. I was on the Trial for 3 years plus a few months. The CT scan was clear so in discussion with my oncologist, rather than go straight from one treatment to another, we would watch and wait with scans every 3 months and ONLY if cancer was found I would start immunotherapy! That was Oct 2016 & we are still watching and waiting much to everyone’s surprise! You go for it and good luck! I hope like Ellie, Pet and I you will be another success story!

Hi Minmax

I was on Novilumab for over a year. It did work! I'm still here!

yes, the pages and pages of possible side effects were really daunting. I didn't get any of them, though I did get a couple of very rare ones, not on the lists. You can read about this in my profile, if you want.

According to the nurses at my treatment clinic, most people don't get many side effects from immunotherapy, and it is much kinder than chemo.

It is well over a year since I've had any treatment of any sort for my cancer, and everything is still stable. So the Novilumab has done what was planned. I wasn't expecting a 'cure', but it has definitely extended my life!]

Best wishes

Kate

Wow that really is amazing and it's great to hear these stories. . I know we are all different and treatments affect s us  all differently and there is a 20% chance of it working but I remain optimistic. These really  are like miracle stories. I did expect the oncologist to say the cancer in my neck  had grown as I have been having  pains and headaches etc , But apparently it is all ok and no change which is great so pains are down to neck dissection etc  and nothing to do with my cancer and such a relief . Thanks anndav All the Best Minmax 

 Hi Kate  Thanks Oh this is wonderful news to my ears . I just finished my second chemo in June which wasn't to bad cisplatin compared to the first carboplatin which I could only have 4 rounds of . I feel more up beat reading these posts as one has to look at all the facts. Oncologist said I can do whatever I want so long as I feel ok which is great . All the Best Minmax 

Hi again Minmax

i don't want to be a party pooper, as you seem so upbeat about this.....but one thing to bear in mind is that side effects from chemo are usually temporary, and lessen after treatment finishes, whereas some side effects from immunotherapy can be permanent, and quite serious.

It is something only you can decide, in discussions with your oncologist and others involved in your life.

I'd recommend reading as much as you can about the side effects, and not just those on the list you've been given! You can get more info on the internet.

i don't want to put you off, just decide carefully!

I hope you feel happy, whatever your decision!

best wishes

Kate