Category Archives: Anti-PD1-Antibody

The title of the blog has changed

When I first got my diagnosis in 2008, I went into battle mode. Raised in NYC, battle has been in me since I was a kid. I had to fight my way through life; kids, school, subways, etc. I approached my metastatic renal cell carcinoma the same way: I wanted to battle it, to kill this invisible enemy by knocking it out and kicking it out of my system.

Well friends, my attitude has changed over the past year, especially in the past couple of months. This is no longer a battle, but a journey. I am learning to make peace with my cancer and as a result, along with great medical help and MDX-1106, it is going away. Don’t get me wrong, it likes to rear its head once in a while but the hold it had over me has dissipated. I talk to it. I meditate and think about my ‘white light’ calming down the rogue cells and finding out what they need to settle down and be a part of my team.

I can’t kick my cancer’s ass. I have to outsmart it, to accept it, to embrace it. Only through finding peace within myself can I be cancer-free. And I am on my way.

RCC patients like to call themselves warriors. I am no warrior. I am a traveler on this long journey who is finally discovering what he is made of. And I like my new self.

31,000 unique visitors!

I started writing about and documenting my entire cancer journey first for me, and then so that my family and friends could keep up with everything we have been going through. Since I started this over a year ago a lot has happened: Three brain surgeries, HDIL2 treatment, MDX-1106, two Cyberknife procedures, we lost our home, my wife lost her job because she took too much time to get me to treatment and appointments, but we are all still here and doing better than ever.

The MDX-1106 has been my miracle drug that has killed almost all my cancer, we are in a beautiful new home, and the love and support of all our network of family and friends, UNH, NHIA, have all helped us pull through so far. A year ago things looked pretty grim for me. Today, I have another chance.

The site has also showed me the kindness and support of strangers. People write all the time offering advice, asking questions, and sharing their stories. We are all in this together until a cure is found.

But this site has also taken a turn. It has become somewhat of a personal repository of MDX-1106 information. People search out the drug on Google and I am one of the first sites that comes up. I will keep building awareness of how powerful this drug has been for all kidney cancer patients involved, something that Bristol-Meyers does not seem to care much about since we represent a smaller segment of the cancer population. Rumor has it that they will not release MDX-1106 widely for kidney cancer patients in the future, so it is our job to keep the pressure up and spreading the good news. The more powerful our response to the drug, the stronger the word on the street about keeping it out there for all of us to use.

Bristol’s CEO retires tomorrow and some new guy will take over. I am trying to come up with a plan raise his awareness on a human level of how successful this drug has been and how important it is to add our names to their profit ledgers.

If you are an MDX-1106 participant and have had the kind of success I have had, it is your duty to get the word out and keep it going. Cancer message boards are alive with questions and excitement about this drug and the trial. Let’s all keep the momentum going and keep the pressure up.

A letter campaign is one thing, hundreds of thousands of us online is even better.

Thank you for visiting and reading. Thank you all for the support and encouragement.

What I am thankful for…

Too many times in this journey I focus on the science of my cancer, my treatments, the effect it has had on me and my family, my friends. I vent my frustrations with medications, the ups and downs of the disease and the disruption of life that it has caused us over the past year or so.

But today I want to take a moment and mention thanks to the following people, places, and things that have all helped me succeed so far in this journey. My wife Melissa has been my lifesaver and caregiver. In addition to helping me get to appointments, be on the right meds, be a pitbull for me when I was in for all my surgeries, she has taken care of our kids and provided them with stability, love, patience, and a sense of strength that they needed to see. She is my number one supporter and cheerleader and even when I used to sink to my lower mental depths, she has always been there to lift me up and remind me of who I am and what I am capable of. I love her for all that and much more. Without her, I can honestly say, I would have had a more difficult time through all this.

My team at Beth Israel, Dr. Daniel Cho in particular, a young man who fought and fought for me to get on this miraculous MDX-1106 trial and sat on my spot till my surgeries were completed. He pulled strings, fought for me, and his passion and energy helped energize me as well. I have had a ‘dramatic response’ in the program and part of is the support I have had from him and his team. It is infectious and makes me want to fight harder to get rid of the rest of this cancer to show them that their belief in me and my attitude helped push me to new heights.

My cardiologist at The Brigham and Women’s Hospital, the wonderful and empathetic Michelle Albert. This wonderful woman took a personal stake in our case and was involved in every step of the way to make sure my cardiac health did not suffer through all my treatments and surgeries. She is an amazing person (from Brooklyn also!) and I just saw her yesterday for a followup. She greeted me with a big long hug and I was so happy to see her that I actually got emotional. It’s so amazing to feel that even in these big Harvard research hospitals that I am a human being and that this woman is interested in me personally and my family’s well-being. I love her attitude and her passion for me and my case.

I never thought I would ever thank an insurance company, but Harvard Pilgrim Healthcare Insurance has been a lifesaver. Everything has been covered with no issues, the copays are manageable and as recently as last week a representative from the company called me asking me if there was anything else they could be doing to help me get through all this. She asked me if I was happy with the service and I told her how thrilled we all have been so far. See, insurance companies don’t have to be cutthroat profitseekers with little regard for human life. This company has shown me a humane, kind side that is interested in my getting better with even more help. I have cost this company hundreds of thousands of dollars and they keep giving. I am thankful. I have had bad insurance policies in the past but this time, especially with the disease, this amazing company came along at the right time.

I am thankful for my parents, my sisters, and my brothers-in-law. They have extended us a helping hand many times through this ordeal by watching our kids, visiting us, providing moral support, and even extending an invitation for us to move back to NYC so that they can be there for us more often as we need help. Family support has been indespensable and I feel it every day when I hear from them asking how I am and how we are all doing. They are my cheerleaders as well and I love them all for it. All of this support can get overwhelming at times.

Finally, my friends, cancer and otherwise. Shaun T, Tracey M, Rebecca S, Liz L, and others who have been amazing supporters and beacons of light. We are all in this together and these people always have great advice and support and we can share a laugh about our situations and crazy diseases. Sometimes I run scared from other cancer patients but these folks make it easier for me to deal with the reality outside my body.

Thank you everyone! Lovefest is over.

Saw the MDX-1106 proof today

I went in for my bi-weekly MDX-1106 infusion today at BIDMC. I had the usual litany of tests beforehand: Blood, urinary, EKG, examination by the nursing staff and then a meeting with Dr. Cho. While we sat and talked with him he pulled up my torso CT from last week and showed us exactly how much the cancer has disappeared. I have three tumors left, all under a centimeter in size. A year ago these were triple and quadruple in size. There is one that remains to the right side of my heart in the lung that measured 11mmx17mm in February that is now 5mmx6mm! The other two are way under a cm as well. This is amazing news regardless, but the fact that the MDX-1106 worked through the steroids in my system from my last Cyberknife procedure is nothing short of miraculous. This drug is my savior. I owe Dr. Cho of course for fighting for me to be one the lucky 16 in this trial and so far it has worked miracles.

We think these will disappear within the next scan or two and hopefully they will stay away. I have to be more vigilant with the ones in my brain from now until they stop popping up in there as well. For some reason the drug has not crossed the brain barrier, but as long as we get them up there while they are tiny, like they are now, they will respond and disappear. I just hate being on the steroids, but that’s a small price to pay for my organs working and my torso being clear.

A sidenote to today’s conversation: We asked him about wide release of this drug and he was unsure. He said if Bristol-Meyers (the behemoth who bought Medarex) sees that there is not enough profit to be made from kidney cancer patients then they would not release it for all of us to use. They want the money that comes from sexier cancers like lung and breast (and even colon) all of which have powerful lobbies and activists. It was kind of a depressing take but one that prompted me to take action. I will start writing to Bristol and send them my case history and see if we can keep the interest going on this miracle drug.

Hopefully their CEO would want to be remembered like Jonas Salk and not some corporate pharma profitseeker. I just felt helpless there today as my cancer is withering away and many others many never have the same opportunity. Capitalism blows. And yet the Teabaggers and Sarah Palin disseminate fear that the government health plans would do just this, while corporate America is doing so already.

OK off my soapbox. Today was a great day!

Before and after Cyberknife

Here is my Julius Caesar bust getting fitted for a hot mask that would hold me in place during the 2 hour procedure.

After the mask took the mold of my face, the Cyberknife robot circled and circled my head for over two hours nailing the three small mets, unleashing very targeted points of radiation to the heart of each one. Small waves of radiation emanated outword to kill any remaining loose cells.

Here is the official printout of what happened in that room. Notice all the rays that went into killing three tiny lesions. Pretty impressive arsenal.

After it was all over, I felt tired and went home and slepped a few hours. I feel much better now. It’ll be another day before I get back to normal. My eyesight is already better and everyday will bring me more and more energy and mental control over the situation. This could have been so much worse, so I forced my docs to be more vigilant about brain scans in the future until these mets settle down. We’ll get an MRI every 60 days instead of the usual 90, catching them early, while they are still small. The smaller they are the faster they will disappear.

With the MDX-1106 still killing everything south of my neck, I am still thrilled. Most RCC people don’t get this chance. I am fortunate and thankful for everything.

It’s the small victories

The docs called me from Beth Israel this morning to tell me that my CT scan has shown even more reduction in the remaining tumors in my lungs and some of the smaller ones are totally resolved. Nothing new has shown. Despite all the roids of the past couple of months, MDX-1106 is still my miracle drug.

I go into Cyberknife tomorrow with a clear head.

Whew…

A brief respite, or how I am trying to keep sane

Well, I enjoyed about two months of peace and quiet until two Saturdays ago. I woke up at 6am and my eyes were shifting violently left to right out of control. I woke Melissa up and told her I needed help immediately. She ran downstairs and called 911 and our fire department came up with a wheelchair for me. I started to black out at that point. I remember them asking me questions about where we lived and who the president is. I had the answers in my head but I could not utter them through my mouth.

Melissa told me afterwards that I kept asking for “Tire… ambulance… mouth” which in my head meant ‘Decadron” (the cursed steroid). My body knew that I had some new brain issue going on and that I needed the roid to keep swelling down. The guys took me via ambulance to our local hospital where the ER docs looked a little spooked. Melissa told them to give me Ativan, which breaks seizures, and I started coming to a little bit. My memory of the ER is somewhat intact.

They did a CT scan on me which found nothing, as they usually don’t in the brain, and then Melissa asked them to bring me to Boston to go to Beth Israel where they know me and my history. After some observation in the ER down there they admitted me to a room. I had an MRI and the radiologists found three new small ones in my brain that had been causing a lot of swelling. And with little room in the brain for expansion, there was little place for the brain to go but into seizure.

We got the bad news Saturday afternoon and they had me on Decadron once again to reduce swelling. Cyberknife was in my future again, thankfully. Dr. Cho had told me that these would probably come back at some point but I never expected them to return so soon. They are also messing with my peripheral eyesight at this point. When I look from left to right sometimes I suffer from palinopsia, or I see ‘old visions’. The quickness of their return and their effects on my sight have me worried. Really worried. So far the MDX-1106 is working from my neck down but not in my head.

From what I know of metastatic disease, when it gets into the lungs and takes over is when it spells real danger for the rest of the organs. My lungs have been clearing up thanks to my treatment and as of last scan there are no lesions anywhere else in my torso. The MDX-1106 is working and I hope it stays that way. Now to keep these things out of my head.

I undergo Cyberknife on Thursday morning in Boston and will be on Decadron for another month. I hate this steroid and its side effects, but what can I do? I just want to get these out of there and move on with my life. The faster I get off the steroid the better my immune system will respond to the cancer with my trial. The steroid is the ultimate double-edged sword: It keeps the swelling down in my brain but it also suppresses the immune system so that it slows down how the MDX works on the remaining lesions in my lungs.

I am once again a pariah in my own home, taking leave of the family and staying in the bedroom so I don’t lose my temper or depress anyone around me. I hate being this way and I see that the kids don’t have an understanding of what is going on. So I just leave. I feel terrible.

I enjoyed my two months off, but I need a real break from all this garbage. I felt so good over the past 60 days and felt back to my normal self. Now it’s back to the same ole bullshit of worry and woe. I don’t like to wallow in my condition and that is what has kept me well for so long, but this time feels a little scary for some reason. I can tire in the middle of this, right? I just want to be well and live my life for myself and my family.

A couple of interesting side notes: I passed my doctoral exams a few weeks ago with these things in my brain! Now that is an accomplishment. I remember sitting down for the written segment, two 4 hour days in an office in the history department and the screen was blurry, my mind was fuzzy and yet I still managed to write for all 8 hours. A few days later I faced my committee of oral examiners and passed with a ‘superb’ review. Go figure. I managed to do all that despite these bastards in my brain. I guess I can hang my hat on that.

The other interesting development is that my family is pushing for us to move back to NYC to be closer to them so they can offer us more regular support. They realize that we are in crisis and that we could use all the moral and physical help we could. When anything major like this comes up we feel all alone up here, leave our kids with strangers and then deal with all this drama all on our own. Having family around sounds very appealing. We are considering the move and are so thankful they are in our lives. We love them all.

More after Thursday…