Checkmate 214 - Nivolumab / Ipilimumab

grafer
grafer Member Posts: 20

Hi- I'm in Brisbane Australia.

This is a great site with alot of info on offer.

I'm currently 4 mths into the Checkmate 214 trial.

Previously diagnosed March 2015 with Stage 4 RCC.  - Mass on left kidney, with some extension into diaphragm. Numerous mets on both lungs up to 19mm.

Surgeon says cannot recommend op until lungs under control. I believe because of extension into diaphragm it is not a simple kidney removal.

Initial treatment was 4 seperate doses nivolumab & ipilimumab every 3 weeks for 12 weeks, now every 2 weeks with just nivolumab. First scan after double drug shows 'stable' disease.Having my next scan this week.

Only side affects so far are- 1 mouth ulcer, moderate rash on back, feeling a little tired. Otherwise all good. Before treatment had a persistent cough but that has since disappeared.

I am really interested to hear from anyone else that has been involved with this trial to see how you are travelling. And anyone with advice / info pls feel free to respond.

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Comments

  • Darron
    Darron Member Posts: 310
    Old school trial

    I am on the phase I trial of Nivo and Sutent. The response profile is very similar to ipi- Nivo trail, just more side effects in my aem of the trial....so new enrollment stopped some time ago. If you are stable on your first scan and tolerating the combo, it is great news.

    I have had almost no side effects from Nivo, almost all SE's have been Sutent related.

    Best of luck

  • grafer
    grafer Member Posts: 20
    Darron said:

    Old school trial

    I am on the phase I trial of Nivo and Sutent. The response profile is very similar to ipi- Nivo trail, just more side effects in my aem of the trial....so new enrollment stopped some time ago. If you are stable on your first scan and tolerating the combo, it is great news.

    I have had almost no side effects from Nivo, almost all SE's have been Sutent related.

    Best of luck

    Trial

    Thanks - I assume that being a phase 1 trial you have been on it for some time and had some success ?

  • Texas R.E.
    Texas R.E. Member Posts: 5
    I have been on 214 trial for

    I have been on 214 trial for 5mo. First scan37%reduction in lung met . second scan 13% third scan results today stable but no reduction. Only side effects are mild flu like feeling for 2or3 days and tired at times.wish you the very best.

  • GailN
    GailN Member Posts: 14
    Nivolumab/Ipilimumab arm of Checkmate 214

    Hi Grafer, I am also from Brisbane, Australia. There are so few trials available in Australia, yet alone in Brisbane, so great to see you drew the best arm of this trial and hopefully you will have good results.  Keep us posted on your progress.   regards

  • PK_Chicago
    PK_Chicago Member Posts: 58
    I am about to start treatment

    I am about to start treatment with Opdivo in the next few weeks - I have a few bone mets in my shoulder and hip and some activity in the area where my left kidney was.  I was first diagnosed in 2012 and went through a round of Torisel in 2013 - but have had nothing else (except for on going Zometa treatements). I'm a chromophobe and if I had not qualified for the Opdivo I would have gone on Everolimus.

    It's great to see positive results - and manageable side effects.

    I will keep updating as the treatment goes on!

    PK

  • grafer
    grafer Member Posts: 20

    I have been on 214 trial for

    I have been on 214 trial for 5mo. First scan37%reduction in lung met . second scan 13% third scan results today stable but no reduction. Only side effects are mild flu like feeling for 2or3 days and tired at times.wish you the very best.

    214 trial

    Thanks for well wishes. Texas- you have had some great results. I Just had 2nd scan results today.  No increase in primary tumour, most lung mests show small decrease in size - a couple have resolved completely. Classed as stable.

    Still feeling A1 with no side effects.

  • grafer
    grafer Member Posts: 20
    GailN said:

    Nivolumab/Ipilimumab arm of Checkmate 214

    Hi Grafer, I am also from Brisbane, Australia. There are so few trials available in Australia, yet alone in Brisbane, so great to see you drew the best arm of this trial and hopefully you will have good results.  Keep us posted on your progress.   regards

    Trial

    Thanks Gail.  Fantastic that you are NED. 

  • Darron
    Darron Member Posts: 310
    grafer said:

    Trial

    Thanks - I assume that being a phase 1 trial you have been on it for some time and had some success ?

    Grafer

    yes, I have been in the trial since Feb 2013. I can't tell you how many infusions or how many sutent cycles. I started with 50 mg sutent and dropped to 37.5 to help reduce side effects. I just passed 1 year NED. Scan results are in my bio. I lucked out and got a great dose in the phase I trial. I am hopeful it gets approval soon for everyone's sake.

  • Racinreggie
    Racinreggie Member Posts: 16
    Darron said:

    Old school trial

    I am on the phase I trial of Nivo and Sutent. The response profile is very similar to ipi- Nivo trail, just more side effects in my aem of the trial....so new enrollment stopped some time ago. If you are stable on your first scan and tolerating the combo, it is great news.

    I have had almost no side effects from Nivo, almost all SE's have been Sutent related.

    Best of luck

    Darron

    May I ask where are you going for treatment? Are what Doctor are you seen by? Trying to find a great RCC oncologist. Thanks

  • Darron
    Darron Member Posts: 310
    Racin Reggie

    Dr. Amin at the Levine Cancer Institute in Charlotte, NC. I believe one of the best!

  • Racinreggie
    Racinreggie Member Posts: 16
    Darron said:

    Racin Reggie

    Dr. Amin at the Levine Cancer Institute in Charlotte, NC. I believe one of the best!

    Darron

    Thanks alot. Been looking for a great one.

  • Nehemiah
    Nehemiah Member Posts: 2
    Checkmate 214

    Hi, I'm in London, England.

    I'm new to CSN.  Can I first say how encouraging all the notes are. I have been on 214 for around 4 months -  side effects: very tired, swollen joints particularly hands and initially some high temperatures.  Right kidney removed in Sep 14, lymphs around extracted kidney clear. In April 15 found that cancer had spread into lymph system with a met in the lymphs in chest.  CT scan after four treatments on 214 showed tumour reduced by 30%.  Just had first infusion of nivolumab alone so hoping the side effects will reduce over the next month or so. I, but probably more so my wife, have wondered about other participants experience on 214 so your comments have helped us and I hope my story is helpful to others.

     

  • Footstomper
    Footstomper Member Posts: 1,237
    Nehemiah said:

    Checkmate 214

    Hi, I'm in London, England.

    I'm new to CSN.  Can I first say how encouraging all the notes are. I have been on 214 for around 4 months -  side effects: very tired, swollen joints particularly hands and initially some high temperatures.  Right kidney removed in Sep 14, lymphs around extracted kidney clear. In April 15 found that cancer had spread into lymph system with a met in the lymphs in chest.  CT scan after four treatments on 214 showed tumour reduced by 30%.  Just had first infusion of nivolumab alone so hoping the side effects will reduce over the next month or so. I, but probably more so my wife, have wondered about other participants experience on 214 so your comments have helped us and I hope my story is helpful to others.

     

    Maybe its because I.m a Londoner

    From East Ham living in the States. May I ask where youre getting treatment?

  • Nehemiah
    Nehemiah Member Posts: 2

    Maybe its because I.m a Londoner

    From East Ham living in the States. May I ask where youre getting treatment?

    London calling

    Hi Footstomper, I'm receiving treatment at Barts (St Bartholomew's Hospital). Hope all is going well for you.

  • Footstomper
    Footstomper Member Posts: 1,237
    Nehemiah said:

    London calling

    Hi Footstomper, I'm receiving treatment at Barts (St Bartholomew's Hospital). Hope all is going well for you.

    Even a Clash Reference!

    Barts is a really good hospital. I'm great, thanks mate, apart from a slight case of Stage 4 renal cell carcinoma! 30% reduction in your tumours is bloody good news. I was dead lucky to achieve the same on my last drug. Sadly that drug (which I wont name - coz I know other people have had good experience with it) also stopped me eating, drinking, and kept me permanantly enthroned on the loo, before I finally collapsed with dehydration and pneumonia. Which was interesting.

    Needless to say I am profoundly jealous of your apparently minor side effects. Unless your understating the case, of course. Your last sentence touched me. I think this whole thing is so much harder on my missus who has been a rock and a star throughout. I'm sure its much harder watching your spouse go through this than it is to have the cancer and I dont have the words to tell her how much she means to me.

    Soppy sod that I am.

    Anyway, I'm still alive. No intentions of dying antime soon and West Ham are third in the table, so what have I got to worry about? (Apart from a bloody hurricane heading my way)

    Look after yourself and keep shrinking them lumps!

  • Texas R.E.
    Texas R.E. Member Posts: 5

    I have been on 214 trial for

    I have been on 214 trial for 5mo. First scan37%reduction in lung met . second scan 13% third scan results today stable but no reduction. Only side effects are mild flu like feeling for 2or3 days and tired at times.wish you the very best.

    4th scan results  today. 8%

    4th scan results  today. 8% reduction in lung mets. Very mild side effects. Have been in BMS trail since March. Now only on Nivolumab and have had a total of 58%reduction in 7 months. Again I thank everyone very much for sharing all the information and support. Never give up and always Believe. Praying for y'all.  Texas R.E.

  • grafer
    grafer Member Posts: 20
    Checkmate 214 update

    3rd scan results today (5 mths on trial)-Nivolumab every 2 weeks.

    No change in primary but very small increases in lung met sizes - and a couple of new ones.-Still classed as stable

    Disappointing after last scan showed some shrinkage- but, gotta roll with the punches I guess.

  • Manufred
    Manufred Member Posts: 241
    Checkmate 214 Update

    This dialogue seems to have dried up since late 2015.  I am still in the trial and am interested to hear from others about their progress.

  • saintmont
    saintmont Member Posts: 63
    nivolumab

    Hi, I have being on opdivo for 19 months have infusion  every 2 weeks. Have no problems as such. Last blood test thyroid elevated hopefully that was just aberation as being on holiday and went to the states for 19 days. I have blood test every 2 weeks. I have 5 months to go on opdivo hopefully i will finished as my onc told me only 2to 3 % of people get throughthe full 2 year of opdivo. As my Onc said its unchatered waters once finished it will be a watch and wait and see what happens if i finish the course. I had a number of mets in lung which now seem to have disappeared one was over 2cm in a bad place but thats gone. I have 1in the neck which has being stable for 4 years with a little bit of shrinkage.

    Regards saintmont

     

  • Abunai
    Abunai Member Posts: 173
    saintmont said:

    nivolumab

    Hi, I have being on opdivo for 19 months have infusion  every 2 weeks. Have no problems as such. Last blood test thyroid elevated hopefully that was just aberation as being on holiday and went to the states for 19 days. I have blood test every 2 weeks. I have 5 months to go on opdivo hopefully i will finished as my onc told me only 2to 3 % of people get throughthe full 2 year of opdivo. As my Onc said its unchatered waters once finished it will be a watch and wait and see what happens if i finish the course. I had a number of mets in lung which now seem to have disappeared one was over 2cm in a bad place but thats gone. I have 1in the neck which has being stable for 4 years with a little bit of shrinkage.

    Regards saintmont

     

    Two year opdivo?

    Saintmont,

    Can you elaborate on what your oncologist meant by the "only 2 to 3% of people get through the full 2 year of opdivo" comment?

    Is Opdivo only given for two years? Do people not get through those years because of side-effects or lack of efficacy?

    Thank you!