Checkmate 214 - Nivolumab / Ipilimumab

2

Comments

  • Manufred
    Manufred Member Posts: 241
    Opdivo Open Ended

    I am also receiving Nivo every fortnight as part of the trial, and I have been told I will keep getting it as long as I want, as long as it keeps working and no serious side effects.

    I believe roughly one third of people have serious side effects and another third show no real response.  The remaining third seem to be going quite well, myself included.

    I did lose thyroid function at the beginning of the trial, which I think was due to the Ipilimumab which I also received for the first three months.  The endocrinologist referred to it as collateral damage.  I am now taking thyroxene to compensate and this does not worry me at all.  My bloods are all good.

    Best wishes for your futures.

     

  • foxhd
    foxhd Member Posts: 3,181
    I was on it

    in trial for 18 months. At 3 times the current dosage. It was 10mg/kg of body weight. I would have remained  on it except I had a little growth. Went to Il-2 right after. That was back in 2012-13.

  • Manufred
    Manufred Member Posts: 241
    edited July 2017 #24
    Nivolumab trials

    Hi Foxhd,

    I know there have been a number of trials based on nivolumab for mRCC, including different dosages.  At present they seem to be thinking 240mg is good for everyone regardless of bodyweight (rough average 3 mg/kg).  You would think that tumour mass is more relevant than bodyweight.

    It is my understanding that Checkmate 214 will report in the next few months.  Then we will all know a little more.

    How are you going with the Interleukin?

     

  • AprilandChuck
    AprilandChuck Member Posts: 110
    Chuck has been on the Phase 1

    Chuck has been on the Phase 1 Opdivo/Ipi trial Since April 2013... Almost all tumors gone and he has been consistantly stable...He is on the Maintence phase so gets Opdivo every 2 weeks... Side affects Thyroid issues, Phosphorus dumping.. possible type 1 diabetes seeing an edrocronologist this week...allergies he never had before, some tiredness and some muscle aches overall he is doing very well on the drug...

  • Forger
    Forger Member Posts: 20
    Day One On Opdivo

    Just had my first infusion today, log on here and voila, a thread about Opdivo.

    How long between when you started and when you got results, and how long have y'all been on it?  If you developed side effects, how long before they started showing up and how bad did they get.

    Sorry to bombard y'all with questions, I'm sure you didn't expect The Spanish Inquisition when y'all logged on today, but any answers and info you can share would be appreciated to help fill in the blanks and calm the heebie-jeebies.

    Thanks tons.

  • foxhd
    foxhd Member Posts: 3,181
    Manufred said:

    Nivolumab trials

    Hi Foxhd,

    I know there have been a number of trials based on nivolumab for mRCC, including different dosages.  At present they seem to be thinking 240mg is good for everyone regardless of bodyweight (rough average 3 mg/kg).  You would think that tumour mass is more relevant than bodyweight.

    It is my understanding that Checkmate 214 will report in the next few months.  Then we will all know a little more.

    How are you going with the Interleukin?

     

    Manufred,

    The interleukin was back in '13. It was very rough. Physically and mentally. I was pretty strong and fit. 6'. 215#. Still weight training and running 5 days/week. I believed I could tolerate anything. I would not qualify today. But it gave me a year of no growth.

  • Manufred
    Manufred Member Posts: 241
    Forger said:

    Day One On Opdivo

    Just had my first infusion today, log on here and voila, a thread about Opdivo.

    How long between when you started and when you got results, and how long have y'all been on it?  If you developed side effects, how long before they started showing up and how bad did they get.

    Sorry to bombard y'all with questions, I'm sure you didn't expect The Spanish Inquisition when y'all logged on today, but any answers and info you can share would be appreciated to help fill in the blanks and calm the heebie-jeebies.

    Thanks tons.

    Nivo outcomes

    Hi Forger,

    I developed a skin rash within days of my first treatment, first on my chest and then generally everywhere, just scattered little lumps (lichenoid rash).  Not serious, a little itchy at times but totally manageable using betamethasone cream which I use maybe once a week

    My thyroid was attacked by the treatment - went into hyper mode within a few weeks, then gave up all together so I take thyroxene tablets daily.  That works and does not worry me at all.

    My tumours were essentially stable with only minor growth for the first three months, and then started to shrink by about half every six weeks.  After a year, there was nothing there to see and I have just had another CT scan this week (2 years all up now) with still nothing to see. As I started with 2 mets in my pancreas and another ten or so scattered throughout my abdominal cavity, I am delighted with my experience to date. 

    I hope it works as well for you.

    Best of Luck,

    Manufred

  • Forger
    Forger Member Posts: 20
    Manufred said:

    Nivo outcomes

    Hi Forger,

    I developed a skin rash within days of my first treatment, first on my chest and then generally everywhere, just scattered little lumps (lichenoid rash).  Not serious, a little itchy at times but totally manageable using betamethasone cream which I use maybe once a week

    My thyroid was attacked by the treatment - went into hyper mode within a few weeks, then gave up all together so I take thyroxene tablets daily.  That works and does not worry me at all.

    My tumours were essentially stable with only minor growth for the first three months, and then started to shrink by about half every six weeks.  After a year, there was nothing there to see and I have just had another CT scan this week (2 years all up now) with still nothing to see. As I started with 2 mets in my pancreas and another ten or so scattered throughout my abdominal cavity, I am delighted with my experience to date. 

    I hope it works as well for you.

    Best of Luck,

    Manufred

    GREAT!!

    Congrats on your good news!!  And thanks for the ray of hope, it's good to hear from the horse's mouth that Opdivo can be so effective.

    My next treatment's not 'til the 17th and months until I get my first scan, but hurry up and wait has never been my strong suite but your results give me something to be cautiously optimistic about.

    Thanks.

  • rhominator
    rhominator Member Posts: 233
    Forger said:

    GREAT!!

    Congrats on your good news!!  And thanks for the ray of hope, it's good to hear from the horse's mouth that Opdivo can be so effective.

    My next treatment's not 'til the 17th and months until I get my first scan, but hurry up and wait has never been my strong suite but your results give me something to be cautiously optimistic about.

    Thanks.

    On Opdivo for ~6 mo

    I've been on Opdivo for 6 months now after being on Votrient for ~3 years. No clinical symptoms and only a skin rash from Opdivo. I'm scheduled for my 6-month PET/CT scan later this month. The 3-month scan showed (scary) psuedo-progression, however I'm expecting good results from the upcoming scan.

    I can get used to this!  I'm getting my fitness back, as well as some of my brown hair (some of it is staying white).

    I hope Opdivo works for you too.

  • EBFRCC
    EBFRCC Member Posts: 23
    Bumping this thread

    Not sure how I missed this thread when I joined. I will have my second infusion next week. 

    The first week after my first infusion was fine. The second brought tiredness and gastrointestinal issues. Cry 

    This week has been more normal. But I am so itchy! No idea if its the meds or the MN state bird (mosquitos).

    Not sure if I should expect the same sort of cycle next go round or if things will get progressively worse. We’ll see.

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    Hope it goes well for you

    we just got media reports yesterday that the European committee is recommended that this combination is not approved in Europe

     No indiciations of the reasons but it is very unexpected 

    its has helped so many people on here

    Annie

  • Jeffris1
    Jeffris1 Member Posts: 41
    Husband will start this on monday

    My busbandcwill start checkmate 214 on Monday. Can he drive himself? Can you eat before you go? Can you drink beer between treatments? He is healthy and has no symptoms. He had kidney removed 6 weeks ago. On no drugs yet.

  • Jeffris1
    Jeffris1 Member Posts: 41
    Do you have a port or just iv

    They said something about putting in a port. Do you have a port of only iv. How many hours does it take?

  • Manufred
    Manufred Member Posts: 241
    Should be OK

    Jeffris,

    One of the real benefits of immunotherapy is that is does not knock you around.

    I live a totally normal life, and walk out of the chemo-lounge feeling exactly the same as when I walk in.  I drive there unless when I walk as we live close enough to the hospital to do that.  Yes, eat before you go, and drink lots of water to keep the veins swollen.  I have never had trouble having the canula fitted, and therefore never even thought about a port, but let the staff there advise you on that.  Sometimes I get a bit of fatigue and have an afternoon nap, but I regard that as a benefit, and consistent with being a bit older than I used to be.  I am back to swimming regularly which has always been my main form of exercise.

    I drink beer almost every day, and eat whatever food I want including spicy things.  Of course everyone is different, but I hope it goes as well for your husband as it did for me. 

    I am still on it after three years but am now considering stopping.  They seem to think there is not much risk of the cancer coming back now, and people starting on Nivo/Ipi nowadays are only given it for two years.

    Best wishes,

    Fred

  • Jeffris1
    Jeffris1 Member Posts: 41
    Manufred said:

    Should be OK

    Jeffris,

    One of the real benefits of immunotherapy is that is does not knock you around.

    I live a totally normal life, and walk out of the chemo-lounge feeling exactly the same as when I walk in.  I drive there unless when I walk as we live close enough to the hospital to do that.  Yes, eat before you go, and drink lots of water to keep the veins swollen.  I have never had trouble having the canula fitted, and therefore never even thought about a port, but let the staff there advise you on that.  Sometimes I get a bit of fatigue and have an afternoon nap, but I regard that as a benefit, and consistent with being a bit older than I used to be.  I am back to swimming regularly which has always been my main form of exercise.

    I drink beer almost every day, and eat whatever food I want including spicy things.  Of course everyone is different, but I hope it goes as well for your husband as it did for me. 

    I am still on it after three years but am now considering stopping.  They seem to think there is not much risk of the cancer coming back now, and people starting on Nivo/Ipi nowadays are only given it for two years.

    Best wishes,

    Fred

    Thank you, that helps a lot

    I read my husband your response, that makes him feel a lot better. So a big thank you from both of us.

  • Manufred
    Manufred Member Posts: 241
    Happy to Help

    I just hope it all goes well for you two.  Keep us informed, please.

    Fred

  • Jeffris1
    Jeffris1 Member Posts: 41
    Manufred said:

    Happy to Help

    I just hope it all goes well for you two.  Keep us informed, please.

    Fred

    He got through the first

    He made it through the first treatment on Monday 7-30-18. Today he had some hot and cold sweats and his bones are hurting, just not feel all that well. 

    Dr office called and said that my insurance won't cover the treatment and that I will need to pay the cash price.  Great, just what I needed.  They are going to put him in for clinical trial or through the medical supplier or something, but they don't know if he will be accepted.  I told them our insurance wouldn't pay for it orignally, I guess it is just another way to get more money out of me.  Up to $30,000 so far out of pocket and counting.

  • Manufred
    Manufred Member Posts: 241
    edited August 2018 #39
    Sympathy

    You have mine.  I hope that the sweats and the aches and pains go away or remain manageable.

    I don't know a lot about how the health insurance system works in the States - where I live I would now be covered for this treatment by the universal health benefits scheme but, still being on the trial, the drug company picks up all the bills.  I wish you could be in a similar situation.

    Best wishes,

    Fred

  • Supersum
    Supersum Member Posts: 109
    Learn more about the drugs if you want

    Hi I am not sure if you have already researched these drugs but there is some general information about them online.

    Here is a general guide to nivolumab side effects:

    https://www.drugs.com/sfx/nivolumab-side-effects.html

    Here is a general guide to ipilimumab side effects:

    https://www.drugs.com/sfx/ipilimumab-side-effects.html

    There also might have been some information about these if you signed a consent form.

    When you combine the monoclonal anti-bodies (mabs) there is much greater chance of experiencing side effects from one or the other, or possibly both.

    If you can endure them and continue just remember they are a sign that there is some physiological change going on and we can only hope that this includes the drugs doing what is intended.

    The lists of side-effects are only a general guide they have mostly been developed in relation to the treatment of unwell people who might have comorbidities but nevertheless they can give you an idea about what you might experience.

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com Member Posts: 206 Member
    Good luck

    All around!!!!  June