27

‘Nuff said

Still no side effects…

Thank you cancer for making me so damn paranoid.

I’m always waiting for something new and horrible to happen evey day (in my body only) but I am happy to report that so far, MDX-1106 has produced no issues. My blood workup came back normal (no anemia) and we await my thyroid test results (I’ve been tired lately but that might be due to three children, six chickens, a mortgage, etc) today but they should be fine also.

I go in for my second injection on Monday.

Thank you to everyone for the emails and kind words of support. It is emotionally overwhelming at times to know so many people are rooting for me. It takes a village to beat this thing and I love all your support.

Now if the Yankees can closeout this underrated team from Philly tonight, all will be well.

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).

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 a 3 of 3 success rate so far with RCC patients in the initial round of the trial. Two have been complete responders and one has had a partial response so far. Of course we both said that 3 is not 300 and we should be cautiously optimistic, but this is all very exciting. He also told me that this is the first time that they had seen such success in a Phase 1 trial for RCC patients.

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.

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

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.

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.

Third brain surgery in 6 months!

I swear I had thick hair in January!!

It’s been a while since the last post and I have been completely avoiding airing any of my dirty laundry in public, but it’s now time.

First, the good news. My irrigation infection brain surgery went fine. I have been out of the hospital for a couple of weeks and am hooked up to a PICC line that pumps Nafcillin into me every four hours. I can unhook myself after the hour-long infusion and I am free for three hours, so it’s really not that bad. The side effects of this industrial strength antibiotic are annoying: Nausea, anemia, elevated stomach acid. Overall, the effects are all tolerable and this thing is helping kill any remaining infection in my head, so I can deal.

My surgery was on Friday, August 28th and I think the whole thing lasted about 2 hours or so from start to finish. It was no big deal really. I woke up and they brought me to a private room in the neurosurgery floor. Everything went well until the following day during lunchtime. Melissa had left to go pick up the kids from Connecticut, where my sister met her halfway to NYC to drop them off. My nurse, this young professional woman named Vanessa came in to help me go for a walk around the floor before I got my food. I told her my left foot felt really tight, like I had some serious nerve pain all over it. She thought it might have been a simple vascular issue and we would just watch it.

I got back to my room and I sat down to have lunch in the easy chair. Vanessa left and I was fine. A few minutes later I could no longer feel my left leg or the left side of my torso. I stood up quickly and stumbled out my door to the nurses’ station. I said “I think I’m having a stroke.” They were all busy running around. I yelled “I’m having a stroke!!” They all turned around. Vanessa had a serious look on her face and told me to turn around and go into the room and lay on my bed.

The left side of my body was completely numb and I began flopping on the bed uncontrollably. Vanessa called some emergency code into a microphone and about 8 people flew into the room with equipment and cables and needles. Two resident physicians also came in who were on the floor, both of whom I had gotten to know while they made their rounds daily. I asked one of them, a young guy named Xavier, what was going on with me. He very calmly said “You could be having a seizure or a stroke, we don’t know for sure but we’ll find out.”

As the team assembled around me and started working on me the left side of my body flopped tremendously. I was out of control and started to panic. “I can’t feel the side of my face!!” I yelled. Vanessa stood over me and told me that I would be OK as long as they were there. I asked her if I was dying and she answered “We’re all here for you. We’ll take care of you.” And I really did think this was it. I remember thinking “This is it, really? Dying on the 10th floor of this place, no family around me?”

Then one of the residents came in and looked at me and said “I don’t think this is a stroke, look at the way he is moving. This is a seizure.” They gave me a shot of Ativan to break the seizure and whisked me down to radiology to do an emergency CT scan of my brain. All came back negative, even though I still could not stop moving spastically. The team was happy and calm.

It was a seizure, I was just unlucky enough to be awake and alert for this one. I calmed down after the third shot of Ativan and they gave me IV Keppra (yes, my old enemy is back) and I was fine after that. I had a few small left side twitches while in the hospital, but nothing major. I could just sit and let it pass after a couple of minutes.

I came home that following Monday and had a few twitching episodes while my brain swelling went down and I have not really had any since. They seem to be under control. I can’t drive or ride my bike once again (fuck!) until Neurology gives me the green light at my next appointment.

I had my stitches removed this week and my wound is healing nicely.

Could this be? An actual break ???

I heard back from Daniel Cho’s office today regarding that ‘dot’ on my brain MRI and here is their opinion:

Hi Angelo,

I looked through my files and I do have a report from Exeter Hospital’s
6/24/09 Head MRI which remarks:
“High in the vertex of the brain posteriorly on the right there is a
focus of increased signal and T2 bright signal intensity that may be
sequela from the recent surgery.”

If you would like me to fax this report over to them or yourself let me
know. I’ll just need the fax number/name to put Attn to.

Dr. Cho believes the finding on your most recent BWH scan is not new but
it might help if they have the report or could obtain the scan from
Exeter.

I hope you are feeling well,
—-

Good news for now, no? I am cautiously optimistic. We’ll see how this plays out for now. Needless to say, the stress has waned just a little at the moment. More on this as the story develops (or goes away).

Scalped again (and an update)

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.
—-
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.

In the hospital again

Believe it or not, I am at the Brigham once again. This time the culprit is an infection that started on my scalp scar ! It has been oozing for about a week. We came to Boston today to get the wound checked out by the neurosurgery team and lo and behold – I need a ’superficial’ surgery so that the surgeon can go in and irrigate the area under my scalp so that the infection can go away. Estimated surgery time: less than an hour. This will be followed by weeks of antibiotics.

I am destined to never have hair again.

This is a real letdown. I am pissed that this kind of bullshit keeps happening to me. What’s the point?

I’ll post more as I get information this evening. We are still in the admitting office right now.

A news story followup

FoxNews reporter Josh Miller called me a couple of days ago to get my reaction to the shuttering of Taylor, Bean, and Whitaker. Josh is the guy who did the story on us originally.

Here is the latest.

To be honest, I had no idea my case would be the centerpiece of this article. I thought I was going to be just another voice to bash TB&W and their horrible business practices.

Remember these crooks?

I just found out from a friend of mine on Facebook that our mortgage company has been shut down by the federal government. If you remember, this is the same corrupt company that tried to foreclose on our home during our family’s health and financial crises.

It isn’t clear what prompted the FHA to suspend Taylor Bean and Whitaker. On Tuesday, the Department of Housing and Urban Development, which oversees the FHA, said the company had failed to submit a required financial report and to disclose “certain irregular transactions that raised concerns of fraud.” Taylor Bean on Wednesday disclosed a similar suspension by Freddie Mac, the government-backed mortgage investor that has purchased a large share of Taylor Bean’s production in recent years.

In typical Taylor, Bean, and Whitaker fashion, they never informed any of their customers about these developments, nor did they tell us about our current payments and what we need to be doing next.

While I am thrilled that this entity will cease to exist and that its’ top officers will face a legal inquiry, I do feel for all the newly-unemployed Taylor Beaners across the country who will now have a hard time paying their mortgages. Maybe those rude people who hung up on us, called us names, refused to work with us, and treated us like pieces of garbage will finally know what it feels like to be in need.

Growth

I went in to Beth Israel this past Monday for my scan and results meeting. The news was not what we wanted and hoped for: Growth in the two target lesions. The good news is that the growth is minimal and very slow -2mm in each lesion over a period of two months. My doctors think that I have very little cancer that is hard to find and that it is very slow growing. So, the IL2 did not educate my immune system to recognize the tumor cells and kill them.

OK what do we do now?

Dr. Cho told me about Phase 2 testing at Beth Israel
of Medarex’s anti-PD1-antibody and I have a slot for the September phase. For those of us not familiar with this new treatment, they give patients four shots – one every other week – in the leg. They scan a couple of months after the last shot. There are no side effects and it is an outpatient procedure. They have had some great results with a variety of cancer
patients including RCC and melanoma.

Here are some links about the treatment and what it does:

http://bit.ly/zmTp2

http://bit.ly/19js4F

http://bit.ly/QbAvV

And a promising conclusion:
The combination of PD-1 blockade with GM-CSF-secreting tumor cell
immunotherapy leads to significantly improved antitumor responses by
augmenting the tumor-reactive T-cell responses induced by the cellular
immunotherapy. Readministration of the cellular immunotherapy with the
anti-PD-1 antibody in subsequent immunotherapy cycles was required to
reactivate these T-cell responses.

I’ll post about the personal side of this setback later tonight. I’m not a wallower mind you, but this was indeed a suckerpunch (thank you Shaun for the metaphor).

Goodbye Keppra, my friend and enemy

EEG

I met with my fine neurologist (and an all around great human being) yesterday morning and he gave me the clearance to begin weaning myself off Keppra, the anti-seizure wonder drug that has turned me into a seething, raging hulk. I have one week of half dosage and then I am done.

Let me backtrack a moment. When I had my seizure last December and doctors found the subdural tumor on top of my brain, they immediately put me on Dilantin to prevent additional seizures. That drug turned me into a walking zombie; I was stiff, weird, forgetful, not talkative. I turned into a quiet mess. I asked to be switched to something else and Dr. Logan put me on Keppra, which allowed me to live a somewhat normal life but it created this angry, angry, man who would sit at the table seething, waiting for something to happen so that he could blow his stack. I wound up saying horrible things to Melissa and the kids and would get so upset about this feeling that I had no control over my emotions. I felt upset, depressed, even suicidal. I told Melissa one night that I hatched this whole plan of how I would kill myself if the cancer progressed. I had the plan down to every detail.

Then in quieter moments I started researching Keppra and side effects and guess what? Keppra sparks rage in patients. Real rage. Seething, uncontrollable anger, fits of fury, depression, suicidal tendencies. People have even created a term for all this: Kepprage.

So, I vowed that after my brain surgeries, I would get off this drug as quickly as possible once the danger of seizures passed. The next step would be to undergo an EEG, a recording of electrical activity along the scalp produced by the firing of neurons within the brain. Basically, a test that would tell Dr. Logan if I was in danger of having any more seizures. I had the test on July 8th in Exeter and the results were negative. There is no more danger of seizure. This information was coupled with a recent brain MRI that showed no lesions or suspicious activity, and I was on my way to a Keppra-free existence. I went in to see Dr. Logan yesterday morning and he is certain that I am OK now and we started the weaning plan today.

My time on this drug has been a wild ride. The mood swings have been intolerable. I am thankful that I have a kind family, full of people who have been patient and understanding that while this drug protected me, it also drove me mad.

And now it is time to say goodbye to Keppra. Thanks for the ride.

Reschedule: Scan and results next Monday

For reasons too ridiculous to mention, he CT scan had to be rescheduled for next Monday. Thank you for all the emails and wishes. I’ll keep you posted.

Scan and results on Monday

I haven’t posted in almost a month. That’s a good thing: Seems that life is somewhat back to normal. I wrote a lot when things were crazy and intense and now that my health is back and life is saner, there is less to say, at least about my cancer.

I have my scan at 2pm on Monday, followed by my meeting with Dr. Cho at 4. This is the first time I am getting the results on the same day and I do like it. Its a big scan for me. We’ll get a sense if the IL2 worked or not. I am hopeful, he is hopeful, and we’re all pushing for the best outcome, but hell, we’ll take stability once more.

In the meantime, we have been swimming, hiking, visiting family in NYC, and enjoying what’s left of this New England Summer.