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Checkmate 214 - Nivolumab / Ipilimumab

grafer
Posts: 20
Joined: Aug 2015

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.

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

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
Posts: 20
Joined: Aug 2015

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

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

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's picture
Racinreggie
Posts: 16
Joined: Jul 2015

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

Texas R.E.
Posts: 5
Joined: Jun 2015

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.

grafer
Posts: 20
Joined: Aug 2015

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.

Texas R.E.
Posts: 5
Joined: Jun 2015

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.

GailN
Posts: 14
Joined: Dec 2013

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

grafer
Posts: 20
Joined: Aug 2015

Thanks Gail.  Fantastic that you are NED. 

PK_Chicago
Posts: 58
Joined: Mar 2012

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

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

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

Racinreggie's picture
Racinreggie
Posts: 16
Joined: Jul 2015

Thanks alot. Been looking for a great one.

Nehemiah
Posts: 2
Joined: Sep 2015

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's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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

Nehemiah
Posts: 2
Joined: Sep 2015

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

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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!

Jeffris1
Posts: 40
Joined: May 2018

Please tell me your side effects.

grafer
Posts: 20
Joined: Aug 2015

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's picture
Manufred
Posts: 239
Joined: May 2017

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
Posts: 63
Joined: Feb 2013

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

 

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Abunai
Posts: 173
Joined: Oct 2016

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!

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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's picture
Manufred
Posts: 239
Joined: May 2017

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?

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

AprilandChuck's picture
AprilandChuck
Posts: 110
Joined: Feb 2013

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's picture
Forger
Posts: 20
Joined: May 2017

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.

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Manufred
Posts: 239
Joined: May 2017

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's picture
Forger
Posts: 20
Joined: May 2017

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's picture
rhominator
Posts: 232
Joined: Nov 2015

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
Posts: 23
Joined: Jun 2018

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
Posts: 479
Joined: Aug 2017

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
Posts: 40
Joined: May 2018

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
Posts: 40
Joined: May 2018

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

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

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
Posts: 40
Joined: May 2018

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

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

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

Fred

Jeffris1
Posts: 40
Joined: May 2018

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.

EBFRCC
Posts: 23
Joined: Jun 2018

Sorry your insurance is being a pain. Can the doctor file an appeal on your behalf? The doctor should have billing folks that can work with you and your insurance to understand what they will cover. This treatment has been approved by the FDA so, it should be covered!

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

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's picture
Supersum
Posts: 103
Joined: Aug 2017

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.

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Gtngbtr58 @aol.com
Posts: 204
Joined: Oct 2017

All around!!!!  June

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