Choice of immunotheraphy drugs pembro or combined ipi and nivo ?

Hi Tinliz

I am Stage IV my melanoma is quite a rare strain Mucosal (only 2% of cases). I had Pembro, unfortunately I did not respond and was taken off after 3 months scan. I had very little side effects, infusion every 3 weeks. I dont know much about Nivo (understand it is similar to Pembro). I have had 3 out of 4 Ipi - could not make all the recommended 4 as I had a spell in hospital for pain management, my Onc thinks the pain was due to the disease, not the treatment. I have tolerated Ipi well and will see the Onc in 3 weeks to see if this has had any positive effects.

What treatment is effective for one case can be so different in another. I tended to be led by the Oncology team as to which treatment had the best statistics for my particular cancer, taking the probability of unpleasant side effects.

Your team should be able to give you the factual statistics but again this is not an exact science as individual cases will differ. The end choice will be yours - I hope this will not be too difficult for you.

Good luck and take care.

Penny

Welcome Tinliz, congratulations for making it over here. 

I noticed you said you weren’t BRAF positive, that you are a fit 70yrs young, and that your children had been doing some research and were leaning towards Pembro. 

I don’t know if you or your children have seen the melanoma patient conference videos on YouTube, I think I’ve given the link for this one before, during this talk there’s a slide on IPI, IPI + Nivo and Nivo survival and another one on side effects (I haven’t double checked the side effects slide I’m doing it from memory) 

MPCUK2017 latest developments in treatment  

I’ve already given you the melanoma focus patient decision aid link previously as well. The cancer research site gives info on the drugs and side effects as well, if you want me to give you a link to them just ask, but you might have that already.

So a bit like a financial adviser has to gauge what risk your willing to accept when they advise on products, I suppose a dr now needs to know what’s important to you, are you fit enough to risk side effects for a possible long term gain in life expectancy. The Drs don’t know yet which meds will work on what people and what side effects we will get and how severe they will be but they must have built up some experience of what they would feel happiest with. I think in most cases they are offering Pembro, or the combo IPI + Nivo, and they swing towards Pembro if they think someone isn’t fit enough to risk the potentially worse side effects with the combo. But if someone is fit enough the combo, has a higher % of success so many would like to improve their chances by having the combo. 

I don’t actually recall being offered a choice but Pembro had just become available and the press was full of Jimmy Carter, when I was moved onto it,  I think the combo might only have been available on a trial at the time, but Ipi was potentially going to be offered if Pembro didn’t work. 

I think it’s great to gather info and talk through what you think you might do, and of course the dr will offer advice and might give a preference that they would choose and if they don’t you can always ask that question. I also looked for people who had been on Pembro before I started my treatment. 

Sometimes people make the decision based on how often they would have to go to the hospital as it interferes with their work, it sounds like that isn’t a consideration for you or perhaps you look after grandkids and it is?

I think if you ask the dr what they would do, also ask them why they came out in favour of that one. 

As I’m not a medical professional I don’t want to sway you either way myself but I think the video presentation is info all oncologists have and to some extent will base their decisions on. Of course the fact I’m clear and had Pembro (my story is in my profile) with little side effects might influence you but not everyone reacts the same, but isn’t it great to hear success stories.

Good luck with you decision.

For information's sake, I wondered if you would like to hear from someone who had Ipi alone. I was treated with Ipi before the combination was available.

Ipi has a low success rate (~15%). It has a higher incidence of major side effects (like mine, it destroyed my anterior pituitary gland). However, it is a one-off treatment (four infusions at three week intervals). Some of those treated are 'complete responders' (the tumours can no longer be detected - I am in this category).

So why do they combine Ipi with Nivo? Most importantly, they have different targets, so the success rate is much higher with the combination, even higher than adding up the separate treatments.

Secondly, patients who develop major side effects can stop taking the Ipi but continue with the Nivo.

Thirdly, an experienced team will be aware if the patient has had a 'classic' complete response to the Ipi (like mine) and will probably suggest 'pausing' the fortnightly Nivo treatments.

(For someone like me, who has a phobia of hospitals, Ipi was better because I was not facing spending one day a fortnight in a clinic for a open-ended amount of time.)

It is possible that you may be one of the small number of people who do not respond to Ipi alone or to Pembro/Nivo alone, but responds only to the combination. This means that you will miss out if you have Pembro, it fails, and then you try Ipi.

The combination is more risk, better chance of positive effect.

Thanks MoiraA, that has been a factor in my thinking and sometimes I think go for it and I know my partner would like me to choose that option as he feels it's worth the risk. At clinic on Thursday and if surgeon decides not to operate and start treatment instead, then I'll probably decide which to choose on the day ! My philosophy on life is have no regrets so hopefully which ever way it goes I'll still think the same way, thanks again for your reply

Thanks Penny for your advice and good wishes, apparently whatever choice is the right one at the time , so I'm sure I'll make the right one

Just thought I’d throw in my twopence worth of experience, extremely limited as it is. My melanoma started on my back and now spread into the lungs.

I have had two treatments of Ipi + Nivo and had mild side effects (small rash, dry eyes). However, I then developed a fever and was hospitalised due to a collapse at home. Loss of apetite and, more importantly, fluid intake meant I became extremely dehydrated meaning more time in hospital.

The latest reaction is Colitis. Another wek in hospital now sees me at home on a high steroid dose for review with the oncologist next week.

Basically the outcome is that when eventually I get back on the treatment it will be Nivo only. So far it is too soon to tell if the treatment has had any effect on the melanoma but it’s certainly doing something to the rest of me.

As most folk have said, we are all individuals and if nly they could say how the drugs will effect us each, not just a leaflet saying it could be anything from your head to your feet.

I wish you all the best for your treatment whichever option you choose.

Mel

Hi Tinliz, I am 69, and had the same problem. After neck resection and lymph gland removal, second time round, had a suspicious nodule in my collar area, which they biopsied, which annoyed it somewhat, and it swelled to the size of a large walnut, and looked about to burst. This happened with the one on my neck, which led. To the lymph removal and resection and paratid surgery. I started on Pembrolizumab (keytruda) about 7 weeks ago. By week 4 my melanoma was huge, and even shocked the doc! 3weeks later, ie: week six, it's gone! Went for infusion last Monday, blood came back perfect, and doc was happy! So yes, at this point, Pembro works for me! I am not saying that will always be the case, but doc seems to think it's good. CT scan on week 12, so we will see. I have had two bouts of Sepsis too! Unrelated!

Good luck.

Keep in touch. You can beat it! Oh yes!

Larry k

Hi Mangledmel thanks for your reply . Three hospital visits after only 2 doses sounds pretty gross for you but I'm sure you've read similar to me that it could be actively working even if you stop the combined dose so hopefully you've kick started it , and the nivo will do its job. 

You have certainly given me a lot to think about, I'm at the clinic tomorrow and still waivering on my choice ,not always a good thing to have a choice ! I hope you feel better soon and the treatment is working for you.

Hi Larry thanks for your reply and great to hear things are looking positive for you at the moment, though you certainly have your hands full personally, I wish things were different for you but that's life unfortunately. Just wondered if you were offered the ipi and nivo combination? If so what made you choose the pembro ? 

Im at the clinic in Leeds tomorrow see whether surgeon wants to operate on second lump under arm or whether they will start treatment instead, its all a waiting game isn't it? Anyway thanks for your positive attitude and yes we can beat this, will let you know how I get on tomorrow 

Margaret

Hi Margaret, I was only ever offered Keytruda, so that's what I am on! I am at the Royal Marsden in Chelsea, and the care is superb! They have never let me down through all the surgery!

Larry k