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Newbie: Ipilumaab and Nivolumab

dancnbear1
Posts: 53
Joined: Dec 2013

I am a newbie to this site but unfortunately not a newbie to cancer. Up until about 3 months ago I proudly stated that I was a three (3) time cancer survivor. I had Skin cancer in 2006 with surgery to remove a chunk of my chest. Kidney cancer in early 2008 with surgery to remove left kidney and renal gland, followed up with a late 2008 surgery for Prostate Cancer which resulted in the removal of the prostate. The three (3) cancers were not related---lucky me.

 

Jump forward and I am one month shy of being five (5) years cancer free but feel a little awkward and tired so I get an early checkup and POW. There is something on the CT scan that looks bad. Well more CT scans followed with some blood workups and then a Pet Scan followed up by  two biopsies and then more visits to the Oncologist with an eventual diagnosis we didn’t want to hear; Advanced Stage 4 Metastatic Renal Cell Carcinoma. Cancer is back and in my thyroid, in two (2) lymph nodes, and with multiple nodules (some 12+) on my lungs. Well it just felt like someone kicked me in the gut or lower.

 

Well I felt sorry for myself for about 2-3 minutes and then decided it was time to fight again. I decided I was going to live and live long so it was time to figure out what to do and that was find the cutting edge, most up to date solution that was out there and sprint to it!

 

The Oncologist recommended Votrient but suggested I see another Oncologist at another Hospital to seek additional advice and get info on IL-2. In between visits to the original Oncologist and the new Doctor I searched the web. I educated myself to learn what was out there. What worked, what didn’t and why it didn’t. I read Blogs and spoke to family and friends seeking support and advice. Early on we decided to tell our family, our friends, and most important our three kids. We wanted and needed for them to know. I learned the first few times we went down this road that it is harder to hide it then to embrace it. Not that anyone wants to embrace cancer but we just didn’t want to play those games if you know what I mean. It takes up way too much time and energy to hide it.

 

Well met the new Oncologist who confirmed the news and we discussed my options including IL-2. He noted that even though the cancer was back I lacked the normal symptoms, that I was in good shape (over weight yes) but organs and blood are good, and that I could always “fall back” to Votrient or IL-2 Therapy. He told me to relax for the weekend and get away from the computer and that he would do the “heavy lifting” and make a series of calls to John’s Hopkins, U of Penn, Sloan Kettering, Fox Chase, and Thomas Jefferson Cancer Centers to see what cutting edge technology was out there and if it would be good for me. He was a God send. I don’t know how many Doctors would have done that but he did!

 

Well he referred me to another Doctor in what would be a third different hospital, a third different Oncologist, and again we went through my history and current situation. I should say that prior to my visit I received a call from their “Nurse Navigator” who made sure that they had all of my records, tests, and pathology slides BEFORE I walked in the door. When the visit started they already knew what was going on and so we were able to focus on how to move forward. They were very organized and I was willing to do whatever we had to do. I didn’t and don’t care if I have to see 500 hundred Doctors. We were not giving up!

 

Jump forward a bit and it would seem that they have a future trial and that I may be a good candidate for this trial. They needed someone with RCC Stage 4 who has NOT gone through any programs with regards to chemo, radiation, or any type of drugs. They wanted someone pure. Never thought of myself as pure at the age of 53 but hey if it works.

 

So what is the trial? The trial would be the use of Nivolumab AND Ipilumaab together/same time. Seems they are having great success with these drugs in the melanoma world and that they think it will work for RCC. I sure hope so. So now I am waiting. I am waiting for the Clinical Trial Protocol to be finalized. Once that occurs (which means the Hospital, Doctors, and Pharmaceutical have defined the trial and signed off on the specs and legal crap) we begin pre-trial testing to make sure I am a good candidate and meet their needs (and hopefully mine).

 

Well the wait has now been three months with my cancer growing slowly (less than 1mm per tumor) but still growing. I am getting a bit more tired and a bit more stressed but looking forward to being able to say I am a 4 time Cancer Survivor. They have given me several scripts for tests and blood work and have scheduled me to come in on January 28-if not sooner. I have had one new CT scan just to make sure things aren’t moving too fast and it seems that things are OK.

 

I will try and come back once the trial starts to let you know how it is going.

 

As each of you come in to this Holiday Season remember to live and try not to get too down (I know that it is easier said than done) but enjoy the moments that we have. Talk to those that maybe you haven’t spoken to in a while, hug your kids, your significant other, and keep kicking ass! We will win!!!!!

foxhd's picture
foxhd
Posts: 2057
Joined: Oct 2011

Good luck with the trial. I benefitted from nivolumab for 18 months nearly curing me. I had a couple new mets bump me from the trial which was too bad. New protocol allows for some tumor growth which would have allowed me to stay in the trial. It is the greatest thing to come along yet. Others on this forum have the nivolumab plus other drugs in combo and are doing great. Keep us up to date.

Jojo61's picture
Jojo61
Posts: 477
Joined: Oct 2013

It is unfortunate that you continue to be challenged to fight cancer. But your attitude is fabulous! Keep up the good work!

I hope your words will encourage us all to savor the moment, emjoy our Christmas, kiss our spouse, hug our children and be happy for our blessings!

 

Jojo

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

I've been on Nivolumab alone for two years . It knocked out two tumors including one pretty big one and all is going well .

You have a great attitude and obviously a very strong constitution and I wish you all the good fortune in the world .

Darron's picture
Darron
Posts: 242
Joined: Jun 2013

I am on Nivolumab and Sutent since Feb 2013 and had a 3.8 cm tumor in my adrenal gland. It is now classified as scar tissue, swollen adrenal, or trace of cancer.

I am still on the trial but have dropped the sutent for now, just Nivo every 3 weeks until NED.

I have a good friend on the same trial (but with Votrient - since Nov 2012) and he is seeing continued stable of shrinkage on all of his tumors.

I believe Chuck (of AprilandChuck) is in about the same state I am and on the same trial.

 

It is good stuff. I do hear that the Ipilumab is a little tougher, but also accelerates results quite a bit.

 

Good Luck, keep us posted.

 

dancnbear1
Posts: 53
Joined: Dec 2013

Darron can you give me some info and the Ipilumab and how it is tougher? Thanks

 

db

Darron's picture
Darron
Posts: 242
Joined: Jun 2013

There was a melanoma patient I talked to that was on the Phase I trial of Ipilimumab and Nivolumab. She was in her 50's and was stage IV melanoma. She was early in her treatment and said that she had a bit of a rash, some fatigue, and had stomach "issues". She was excited to be on the trial and was hopeful for here results.

I say it is a little tougher than Nivolumab, but to be honest, other than a bruise on my arm every three weeks, and slightly high blood pressure, I have not had any issues at all with Nivolumab (by itself). I did have a number of issues while on the combination of Sutent and Nivolumab, but they always coincided with my Sutent cycles. For that reason, I attributed the side effects to the Sutent and not to the Nivolumab. Since dropping Sutent in October, my eyebrows have come back brown (from Sutent Grey), and I have gone from 168 lbs to 190 lbs (pre surgery weight). I did have a touch of gout (as does my friend on Nivo), but mine was treated in a few days and has not recurred.

I didn't mean that it was an extremely difficult combination, more that Nivolumab has given me no problems to speak of, and the lady I spoke with seemed to have a toucgher time tham I was having....The common name for it is "Yervoy". Side effects and comments from those with Melanoma are pretty easy to find. The treatment regiment is farther along for Melanoma than it is for RCC. I am a huge fan of trials and particularly a fan of the immunotherapy trials. It don't think it is a coincidence that the results have been promising for drugs that impact the immune system. After all, our only proven cure is IL-2, an immune therapy.

Ipi and Nivo (saving my fingers I hate to type) both impact the T-cells and how they are "turned off" by cancer cells. My understanding is that you effectively break an "off" switch that the cancer cells have been exploiting to keep from being attacked.

Here is a link to ipilimumab - http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/ipilimumab

 

Hope that helps, I didn't mean to scare you off from the trial. I have seen incredible results from the trial and would be in 100% if I had a chance to try the combination. I recall being upset that I got on an early arm of the trial and missed the Ipi arm.

Let us know how it goes!

 

 

 

dancnbear1
Posts: 53
Joined: Dec 2013

Well, it has been about 5 months since I was told the Cancer was back and as I mentioned I have bounced around a bit with several Doctors but found myself in a holding pattern for a specific Clinical Trial. I have had 2 CT Scans since September. The first showed small growth across the board. The last one showed 4 of the tumors to be stable with no growth and the other 3 to have grown very little so I should be glad for that.Hey maybe the Vitamin C I have been taking has helped to build up my immune system---LOL.

Chest hurts a bit and sometimes I have problems breathing. Kind of like that feeling you get when you are around an indoor pool with too much chlorine. You just cant seem to get a good breath and it hurts a bit.

Blood work up's have been great and show no signs of abnormality. Spleen is now a bit enlarged which I am assuming is part of the desease starting to work its way around.

Good news is that the Clinical Trial I have been waiting for was posted today and is now open. Have an appointment with the Oncologist on the 28th to re-confirm I am still in the trial and to get things going. That is assuming they didnt change the protocal which could put me out but out.

I guess we all know the feeling but the wait is so hard. You try to keep positive and laugh around your friends and family but there are times.......thank god for beer and wings!

 

Darron's picture
Darron
Posts: 242
Joined: Jun 2013

Great to hear of the trial opening. Hope it works out.

dancnbear1
Posts: 53
Joined: Dec 2013

Signed my contract for the trial today. Been a long 5-6 month wait to get to this point. Seems like a lifetime. Next steps are a few pre-trial tests to make sure the ole ticker can take the stress. If that goes well then my first infusion is the first week of February. Dont know whether to cry or jump for joy. Think I will jump for joy!

 

danbren2's picture
danbren2
Posts: 202
Joined: May 2013

Dancnbear1,

     You are already a remarkable winner and a force to be reckoned with!  I hope everything goes great for you and that we hear soon from you that everything is shrinking, or better yet gone and you are doing just fine.  I have had three surgeries and have not been placed on any meds, oral or infusions.  I had my right kidney removed Aug 2011), right lower lung (Mar 2013), and a tumor in the brain in November of 2013.  I am waking up smiling every day and thanking God!

     The people that I have met on this site helped to keep me going with my head up and a perseverance to win this battle!  With what you have already won is amazing to me!  I will be one of your groupies with wishes and prayers that you also beat this beast once again!

                                             Love and prayers for good health!

                                             Brenda

    

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

I hope all goes smoothly for you . You are plenty tough to handle whatever comes your way .

Darron's picture
Darron
Posts: 242
Joined: Jun 2013

Jump and Cry....Then do the same thing when it is GONE!

dancnbear1
Posts: 53
Joined: Dec 2013

Well a quick update but looks like I passed all pre-clinical trial tests and I am in the program. I was told that they are only taking 75 people across the US so I count myself lucky. First infusion 2/10/2014. I am told they take a total of 4 1.2 hours. Hope no major side effects.

 

db

Darron's picture
Darron
Posts: 242
Joined: Jun 2013

I only infuse Nivolumab, not ipilumamab, but I remember texting friends minute by minute on my 1st infusion. It is exciting to say the least (only to me I am sure). My infusions are only one hour of drip time, 30 minutes flush time.

1st time went something like this:

1) I am very nervous, just got IV, they took blood

2)connected to bag, not dripping yet.

3) started drip, no reaction yet, they took blood, again

4 thru 59)no reaction yet, they took more blood

60)done, they took more blood

 

hope that prepares you for the excitement. I did sneeze like I had a touch of hay fever during my IV flush on infusions up until the last three. I am usually tired that evening and sleep for a few hours.

give us exciting minute by minute updates, trust me, you will have time. Hope they are just as exciting as mine are (Very boring if you didnt see the sarcasm)

I am anxious to hear how the ipilumamab does for you. Please keep us posted and take good notes on your reactions for your research team.

Good luck!

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