Category Archives: Anti-PD1-Antibody

More good news and a severe allergic reaction

Yesterday was infusion day and the start of my third cycle of MDX-1106 in Boston. The kids are off from school this week so we took them with us and they spent the day skating and playing in the city while I spent my day at Beth Israel for a battery of tests and treatment.

At the start of each cycle Medarex requires trial rats to undergo a CT scan, an EKG, more blood work, urinalysis, and physical exam. I got to the hospital nice and early and spent the first few hours undergoing all the necessary tests. I met with Dr. Cho and team at 1pm and he told me that based on his eyes only (ie, an unofficial read), my CT scan showed more shrinking and stability in the tumors in my lungs. Some have gotten smaller, some stayed the same. Of course I was upset because I had set the bar so high for myself that I wanted them totally gone. He reminded me that my immune system had been suppressed because of the steroids I have been on and that despite that, my body still responded to the treatment. He insisted this was a good scan. The radiologists have not given their official report yet so we are still waiting to hear the final word on actual numbers and size of reduction.

I then walked over to the adjoining building for my infusion of MDX-1106. I saw my regular nurses, we exchanged pleasantries and started the IV. Within 20 minutes or so I started getting very itchy on my scalp and my neck. My skin felt hot to the touch. I couldn’t scratch myself hard enough for any relief. Then I started getting really hot on my face, my throat, my back. I got out of bed and walked to the bathroom in my room and poked my head in to look at my face in the mirror. Well, what a shock; I was red, swollen, and full of hives. I looked like a creature from a horror film.

I paged the nurse and she came in immediately and said “Whoah. OK let’s get this under control.” She left to get help and then my torso started to break out in hives as well. I got lightheaded and dizzy and could feel the reaction to the MDX move throughout my body. The nurses came in and stopped the infusion and gave me a large dose of Benadryl and Pepcid (yes, Pepcid is an antihistamine). I remember asking them if I was going to be OK, but the words didn’t come out right. Talking became very labor intensive, so I just shut my mouth and watched them work on me. One of them asked me to stick out my tongue, which I did, and she told me it was swollen. It is such a strange feeling to have my tongue swollen so much that I could not really talk. As I sat there quietly they told me that some patients have such bad tongue swelling that it blocks their throat and prevents them from breathing. Nice. I didn’t have any trouble breathing and they assured me that was a good sign. My blood pressure had spiked to 175/111 and my head felt like it would pop.

Then the Bendaryl kicked in. I could feel the swelling in my skin go down and the pressure in my head started to disappear very quickly. They had paged Dr. Cho during this mess and he came running in to check me out. He said that sometimes the body will have an allergic reaction to new drugs right away or it may take weeks. In my case, I proved to be in the latter category by reacting badly to MDX-1106 months after my first infusion. He said that when I come back in two weeks for another infusion they would premedicate me with Benadryl and Pepcid before the infusion. He also said that if I had another reaction with the premedication that I was done with MDX-1106 for good. Their worry is that my next reaction, if there is one, could be far more severe, with my throat closing and trouble breathing.

In any case, the nurses said that lots of patients get premedicated before infusions and they do just fine. I have the distinct honor of being the first MDX patient who had an allergic reaction to the drug. I am optimistic that it will all be fine next time when I go in.

Another thing Cho said while he was in my room was that he had seen the radiology prelim report on my CT scan and he said that all tumors had been reduced in size. All this despite the steroids and a suppressed immune system. So as he said, the drug is working so well for me that they want to do whatever they can to keep me in the trial. Right now I am pulling for Benadryl to keep me in this trial. It’s interesting that Benadryl could be the drug that saves me after all!

I’ll have the official radiology report in a couple of days but for now the news is good, minus the allergic reaction. I thought about taking a pic of my face in the bathroom mirror but thought better of it as the nurses ran in and out of my room trying to save me. Now I regret it.

Dare I say it? More great news…shhhhh!

Yesterday was exhausting.

We left the house at 8, left the girls behind with the sitter, dropped my son off at school, left Exeter and got to BIDMC for my 10am blood work appointment on time. Went to my head MRI at 11 and sat in that stinking, loud, noisy tube for 35 minutes, fighting off anxiety and horrible thoughts, and emerged finally with my bearings and a sense of dignity that I made it one more time. Until I looked down and remember I was wearing a gown that was too small with little socks that girls wear. Dignity gone.

I joked with the MRI tech that as long as no radiologist came out from the booth like last time, this was a good sign. He laughed nervously and probably thought I was insane, and ushered me out. Typical brain cancer nut.

We went back to Cho’s office for our pre-infusion meeting and checkup. My blood work was all fine and normal, so we had the bi-weekly green light for more MDX-1106 juice at 2pm. Cho and team joked about my steroid rage and facial swelling ( I look like I am hoarding 40 acorns in each cheek plus I have gained 20 lbs since i started this dreaded drug) and we all had a chuckle. Then I picked up Cho and threw him through the wall. No one laughed then.

But before throwing him, Cho did tell me that he had a quick, unofficial glimpse at the MRI that showed the Cyberknife had actually shrunk all three lesions and that swelling around them had reduced significantly. He said that Wong would give us the details but that it all ‘looked good’.

We said our goodbyes and moved on to the treatment area and got my infusion. No issues as usual, no side effects. All went well. I have become friendly with the nurses over at Feldberg 7 who administer the MDX-1106 drug and we all get along well. They know us, we know about their kids, they stick me with large needles, laugh about my steroid side effects and we all have a great time. It’s like being a part of a large family that pokes fun while doing what they can to save my life. I like it.

4pm comes and Dr. Wong’s meeting looms. Wong is my neuro-oncologist and he deals specifically with tumors of the brain, both primary and metastatic. He is professional. thorough, serious, and can be brutally honest about his assessments, which I really, really like and respect. We looked at the films from 12/21/09 side by side with the films from yesterday and the difference is remarkable!

The two smaller one that were on the left side of my brain have shrunk by 75%. One of them is barely there, as it looks like a shadow on the image. The other one is now the size of a lentil, with a bright spot in the middle that makes it seem hollow. Which is exactly the process that they want to see. The Cyberknife radiates the center of these lesions and kills it from the inside out. And what we have here on the left side are a couple of dying lesions, necrotic, if you will.

On to the right side. The biggest of the three was a lesion the size of a hazelnut that was pushing into the ventricle. They did not want to operate (and neither did I – four brain surgeries in one year would have done me in) and so Cyberknife killed that one in the middle as well. It’s greatly reduced in size, there is no ventricular involvement, and the process of the great cancer cell mop up by my body has begun.

Wong, a man of few words said “This is a good scan. You have had responses in all three, the process is still evolving and by next scan we should see them gone or dead completely.” I asked “So, will I be OK?” To which he answered “You *are* OK. There is nothing more I can do for you now. We have it on the run. Go live life and we’ll see you in two months for a followup. This is all good news.”

This is all good news.

This is all good news.

I don’t think we have heard that phrase more than once in the past 18 months Last time was when Cho told me the cancer in my lungs was gone. I almost feel guilty or scared or ashamed to take it all in. Or worried about jinxing our good fortune. Part of me feels like doing a victory lap but am worried that it’s too soon to celebrate. What to do?

On the rainy drive home last night I just stared out the window, exhausted from the day’s events, pondering this crazy day, thinking about the past year or so and the hell that we have survived. Trying to put it into context, which of course I could not, I struggled with how to actually deal with good news. I know it sounds like I am whining but as an RCC patient there is always this dread that this disease will come back. It does often, unexpectedly. But in the end, I do have to savor this small victory. Hell, this big victory. It’s gone from my lungs, it’s disappearing in my brain. I can’t ask for more than that right now.

We called my family on the way home and we all shared the good news and celebrated on the phone. My mother cried, my father talked for a record 5 seconds, and my sisters and I caught up and just took it all in.

It was a beautiful day. Now how to move ahead and enjoy everything without as much worry???

Thank you to everyone for all your support, prayers, wishes. I keep saying that it takes everyone to win this thing. And I think that is true. I owe you all.

A full day on Monday in Boston

Fellow travelers, I go into Beth Israel Deaconess on Monday for a full day of tests, infusions, visits, and am anxious about hearing some more good news.

We leave Exeter at 8am, get to BIDMC by 10 for blood work. This is followed by an MRI of my brain to see how the little buggers that are left are doing after Cyberknife, After that I meet with Dr Cho and team briefly before my MDX-1106 infusion, which takes place at 2. At 4pm I meet with Dr. Eric Wong, my neuro-oncologist who will go over the MRI results with me and give me the news.

Of course, we are hoping for the best, but you never know. I had three small final holdouts left in my brain and the Cyberknife machine *should* have knocked out all three by now. We’ll see what he says.

I am really hopeful that they are dormant or gone but I am also hopeful that my swelling has gone down and I will be taken off these horrible steroids once and for all. I went in for a CT scan of my brain New Year’s Eve and on a CT, which mind you is not as detailed as an MRI, they only found two tumors and both had minimal swelling. So, what that may mean is that the Cyberknife procedure worked and is killing them off and my swelling has reduced.

I am not placing too much emphasis on a CT scan from 3 weeks ago, but the fact that only the two larger tumors showed up is encouraging. I hate sharing any good news unless it’s a lock. The ER doc here at Exeter Hospital, who is a great guy, by the way, assured me that everything looked great.

You all know that I am a devout atheist but I can be a whore for your prayers and religious leanings no matter what they are. I could use some good thoughts on Monday.

Thank you for everything!

More MDX-1106 on Monday

Me and my mask undergoing Cyberknife radiation

Now that my Cyberknife procedure has passed, I am taking my steroid-filled body (Ugh, bloated, frustrated, angry, short, and always hungry) to Beth Israel Deaconess on Monday for another infusion of MDX-1106.

After the Cyberknife procedure to my head, they put me on Decadron once again to reduce and cranial swelling that develops, a normal side effect of the localized radiation. The steroid has been doing its job but the side effects I can live without. I am in the process of tapering off now, but it will take another couple of weeks before I am totally done with it. The only other side effect from the procedure is some hair loss in the spots where the radiation went in. I am patchy right now, on my head.

Meanwhile, thanks to the roids, all I do is stew, eat, get angry, bloat up, and eat some more. Why do athletes choose to do these stupid drugs?? I can’t stand their side effects.

The good news on Cyberknife so far: One of the small ones that was on the left side of my head was gone as of last week. The other two seem to have shrunk. We’ll know more on the 25th when I have my MRI.

Meantime, steroids or not, MDX wants me back on the trial on Monday since my response was so dramatic. The goal is a Complete Response and from the last scan, I am almost there.

I have blood work at noon, meetings with Cho and team at 1, and infusion by 2pm or so. This has been a miracle drug so far for me. Let’s keep it going.

Thank you and a quick update

We have moved to the new house and I have been without a connection until today. My apologies for not getting back to you with details about MDX-1106 but I will do my best to get some answers out to you over the weekend.

We killed off the last pesky pockets of resistance with CyberKnife surgery on Monday and hopefully I will be on a cancer vacation for a while. The MDX-1106 has produced ‘dramatic results’ in my body and the team at Beth Israel is very excited and optimistic about all the news, as am I. Long term durability is always the question, but for now, this is the first bit of great news we have had in a long, three-year period. And we’ll take it. The cancer is on the run right now and this drug, the love and support of my family and friends, my mental state, and my physical well-being have all helped in the battle.

2009 was a really, really rough year for us. We lost our home, my cancer spread, I underwent three brain surgeries, and HDIL2. But I’m still here.

2010 will be a lot better, I promise.

Fatigue!!!

I got my second MDX-1106 injection on Monday and everything is fine. Except for my fatigue. And that pretty much sucks. But its a small price to pay for being in this exciting trial.

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MDX-1106 pumping into my veins

I got my usual flushed face after the injection began and a small temple headache, but that was it. I felt fine and normal. I started getting tired Monday night and then by Tuesday morning I was zonked. I woke up, had coffee, and hit the bed once again for a few more hours. I asked about this side effect and the team assured me that it was nothing serious; my blood work had come back normal and fine. They think that this may be just how my body reacts to the drug. Fine with me.

Today is Wednesday and I am still tired but slowly coming back to life. I slept a total of 4 hours during the day today and hopefully will normalize tonight. The kids know something is up and we have been talking to them about this new treatment and why I am tired for the first few days.

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Only a couple of vials this time

Everything so far has been smooth and easy to deal with. I was more concerned with this treatment than I was before heading into IL2. At least with IL2 I knew what to expect. Since I am now a notch above lab rat I worried about new side effects that the team did not expect. But, again, all is going well.

I have a fantastic team and it does feel like everyone is rooting for this treatment to work. I am happy with the choices I have made in my healthcare options.

P.S. – I am writing like a zombie ’cause I feel like one.

Day one of MDX-1106 treatment

Melissa and I spent the entire day at Beth Israel in Boston yesterday for my first MDX-1106 treatment. The day began with a chest X-Ray to make sure my lungs had no infection. They don’t. Then I went up to Oncology for a blood draw. They took 13 vials of blood and two urine samples before I got my first injection. (Sorry in advance for the quality of the photos – I took all of them with my cell phone).

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Next up, meetimng with Dr. Cho and nurse Rose C (who heads up the patient care or the trial). Cho was particularly enthusiastic yesterday and his excitement is contagious. He told me that they have had an encouraging success rate so far with RCC patients in the initial round of the trial.

He wished me luck and we headed out to another building for my treatment. The appointment for the injection was set for 2pm but when we got there we still needed to wait for my registration to go through since I was a new patient. This nice nurse came in and put in my line and told us we would have to wait a while for the drug to come up to the floor. After about two hours the MDX-1106 came and she began my infusion. It lasted about an hour and she monitored me closely for any side effects right away.

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The wait was killing me. I just wanted this stuff in me already

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I received 1278 ml of the juice and we watched closely for any allergic reaction in the first 20 minutes (difficulty breathing, tickle in the throat, hives, etc) but nothing happened. The only minor side effect I had was a flushing in my face. It felt really hot for a few moments and then it went away. I did not turn pink as some patients do temporarily, nor did I lose pigmentation color. It was all fine.

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Being melodramatic for the camera

They monitored me for another hour after the infusion was completed. My blood pressure had fluctuated throughout the treatment but that was probably because of stress. I mean, I was two steps ahead of the lab rat and I worried about side effects and issues that had not been observed yet in the trials.

But nothing happened. We left at 6:30 and drove north to New Hampshire. The treatment had virtually no side effects, I presented no issues, and I felt fine. A little tired, but fine.

I return to Beth Israel in two weeks to have another injection. I will get three more, one every two weeks, and then we scan and see what’s up. If all goes well, we have a happy holiday season.

If anyone has any questions about the trial or the drug, please contact me. Hope this has been helpful…It was a helluva lot easier than IL2!

No more anvils falling on my head

Guess who got into the anti-PD1 antibody (MDX-1106) trial??????

We got the great news in Boston yesterday. The white dot has been ruled as being ‘indeterminate’ since its too small to even tell what it really is (2-3 mm), and I have been given the green light for my slot. I still have to get eligibility through bloodwork and other criteria, but this was the big hurdle we had to jump.

This has been a great day and cancer-wise, I have not had too many of these.

More details to follow…

And now, the bad news…

While I was at the Brigham for my third brain surgery, surgeons ordered the necessary brain MRI before surgery to see how deep this wound infection had gotten. They saw the infection had reached the bone, as expected, but radiologists found a small, white dot in the right side of my brain by the ventricle with ‘minimal edema’ around it. Not a good sign. Generally, when a tumor presents itself in the brain, it has swelling around it, so we all have a good idea of what this is. It is so small that the radiologist termed it a ‘punctate.’ But it’s there.

I am going in to have the films of the MRI reviewed by Dr. Eric Wong at Beth Israel this Tuesday. he is a Neuro-oncologist and he should be able to give us the definitive opinion as to what this thing actually is. The location of this punctate and its small size makes it a great candidate for cyberknife radiosurgery, where I have small, pinpoint lasers pointed at this thing and knock it out with high dosages of local radiation. This radiosurgery is so precise that it spares damage to any surrounding brain tissue while killing these type of small tumors. It is a highly desirable outpatient procedure with minimal side effects and NO ACTUAL SURGERY!

Dr. Cho called me yesterday morning and gave me the bad news: If this is indeed a new brain met, yes, we would treat it through cyberknife, but then we would have to watch it for at least 8 weeks before I could start the anti-PD1-antibody clinical trial. The problem is that by then, I will be way too late for the trial. There are 16 slots nationwide for this next cohort and my slot would quickly go to someone else while I sit and wait to get my brain scanned once again to make sure the brain met is gone or stable.

The team at Beth Israel is really excited for this new vaccine and they thought I would make a great candidate for it since I already had immunotherapy and they have had success with patients who had already undergone HDIL2 in the recent past. Needless to say, Cho and I were really bummed on the phone about all this. I am still reeling to be quite honest. This was a bad development. While Dr. Wong has not given us his professional opinion as to what this new thing is, I saw it on my films while my stitches were being removed. My neurosurgeon showed me the film of the ‘punctate’ and the surrounding swelling. While its really small, it does look suspicious based on the swelling alone.

Granted, we don’t have the official bad news just yet, but Melissa and I are bracing ourselves for the it. Cho told me that while my cancer is slow moving we would still need to act right away, even though I would not make it into the trial. We could try other immunotherapies that they are not as excited about, we could go on maintenance drugs like Sutent, or we could talk about travel to other hospitals where they are running other trials to give it a shot.

We’ll get the official word on Tuesday at 1pm. If Wong says that this thing is a tumor, we’ll deal with it like we’ve dealt with everything else. If he says it is doubtful that this is a tumor, then I begin the trial. Cho said he needs to hear from Wong that there is at least some doubt as to what this is. If Wong expresses doubt then we can go on to this exciting trial.

But again, the way things have been going, my hope is running out. I know I have other options, but this is a setback for me. Rotten timing.

Scalped again (and an update)

Oozing

Oozing

So here I am again at the Brigham and Women’s Hospital in Boston. As a recap, I came in on Monday to get this wound examined by the neurosurgery team and they quickly admitted me into the hospital for tests, scans, and possible surgery to clean out the infection. We were touch and go about surgery until earlier today when the brain MRI showed some possible tissue involvement. So, I go in at some point this week after my blood levels have normalized. We now sit and wait.

It is unknown how exactly the scar became infected in the first place. I thought I remembered banging my head a little bit on the car door as I put one of the kids in their car seat, but I’m not sure. I just remember scratching my head one day and feeling some liquid up there. After a week of the wound not healing, we came in to Boston.

The procedure will be a ‘superficial surgery’ where there is no brain involvement and possibly no bone involvement as well. We’ll see how this all plays out. The bacteria *seems* to be confined to the tissue but there is a chance that it has reached the bone, which would then lead to Dr. Du removing the bone permanently. I would have a soft spot on my head, similar to the one babies have before it gets covered over.

Let me backtrack a moment. When they operated on my brain last time, they had to cut a piece of scalp bone off to get access to the brain itself. The piece is then simply placed back in and it covers the brain. It never attaches itself to the remaining bone tissue, but it simply floats there, acting like a cover for a sensitive spot. Now the problem with this is that since this bone has no blood circulating through it, it is prone to infections that cannot be attacked by the immune system or antibiotics. It essentially becomes a breeding ground for bacteria. So, Dr. Du will probably remove the bone to decrease the chance for bacterial infection in the future. At some point in the future she wants me to come in to replace the missing bone with a piece of plastic. More surgery even though that one also is deemed superficial.

I should be under for an hour of actual surgical time but the prep and zipping up will make the whole procedure last a couple of hours longer. There will be no need for Keppra (thank you!) or steroids, so the recovery should be pretty anger-free.
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Now the other news today is a little more unsettling. The radiologists found a small (size of a dot) white lesion in the right parietal area of my brain near the ventricle. Its too small to tell what it is right now. It could be a brain met, it could be a vessel, it could be calcification of some sort. I am trying not to worry about this one just yet. I am having Dr. Cho look at this scan side by side with my last one from a month and a half ago to see if this thing was there. He spends his days looking at spots on scans for RCC metastases so he may be able to tell with more certainty what this is. My only worry, my main worry, is that if this is a new brain met, that it may exclude me from my anti-PD1-antibody vaccine trial at the end of September. As soon as I know more I will post about it.

When will life stay boring and predictable? I used to like excitement and curveballs but this is too much.