Wednesday, November 23, 2011

A Celebration of Mike Brockey's Life November 27 @ 3pm

Mr. Michael Alan Brockey, 33, of Adamstown, passed away at home on Nov. 18, 2011 after a very courageous battle against cancer. He was the husband of Amy Brockey, whom he married on April 15, 2005.

Born March 10, 1978 in Front Royal, VA, he was the son of Paul, Jr. and Darlene Brockey of Middletown. He graduated from Gov. Thomas Johnson High School in 1996, and co-founded Entropyzero Consulting in 2005. He loved his kids, camping, riding his motorcycle, and dreaming up ideas for new software products.

In addition to his parents and his loving wife, Mike is survived by his three children, Kaige, Ella, and Addison Brockey; his two brothers, Timothy Paul Brockey & wife Annie, and Anthony Paul Brockey, all of Middletown; his grandparents, Paul, Sr. and Barbara Brockey of Cumberland, MD; his grandmother, Flora Mae Wilson of Wiley Ford, WV; his mother-in-law, Joni King of Frederick; his father-in-law, Terry King of Annapolis; his best friend and business partner Steven Buxton & wife Sarah of Broadlands, VA and many nieces, nephews, cousins, friends, and other relatives.

A celebration of Mike’s life will take place on Sunday, November 27, 2011 at ThorpeWood, 12805-A Mink Farm Road Thurmont, MD 21788- 1402 at 3:00 p.m. In lieu of flowers, contributions may be made to Hospice of Frederick County, P.O. Box 1799, Frederick, MD 21702, or to a charity of one’s choice.
me.

PLEASE USE THE DIRECTIONS ON THE WEBSITE (http://www.thorpewood.org), YOUR NAV SYSTEM AND MAP QUEST WILL NOT GET YOU THERE!!

Monday, August 22, 2011

I am now on Vemurafenib and feeling pretty good

Who knows at this point if this is just another one of those times where I've just had a dip in my health condition and I'm starting to feel better again or if this the new drug providing relief. All I can tell you is that I am feeling much better. There is pain that remains in my leg, but I am happy to say that I am only using the cane about 10% of the time. I am simply starting to feel better.

For those that are not following me on Facebook, I spent last Thursday in Philadelphia receiving my first month's supply of Vemurafenib. They say that this drug works quickly, but after only a day or two, I'm back up and walking on my own again. This drug is fantastic! There are the obvious issues with the drug as we talked about before, but I think at this point we are going to take what we can get.

Anecdotally, this drug causes new pain which is supposedly the process of the tumors breaking down. I can tell you that there is new pain in my body going on right now. Could this be Vemurafenib doing it's thing? I sure hope so ...

Wednesday of last week, Vemurafenib received it's FDA approval. Now they can officially start their clinical trials which are combining both Vemurafenib with Ipilimumab. Thought being that the combination of drugs could provide the knock out punch. Dr Lynn Schuchter, who is the oncologist overseeing my Vemurafenib treatment is one of the main researchers who started this clinical trial. As you can imagine, she was ear to ear with excitement when she found out that I am basically her first clinical patient as I've already taken the combination. Hopefully we can provide her with some great study information prior to her actually starting her new trial.

I'm not quite sure yet what the timeline is for scans and reports etc. I do know I'll be in Philadelphia again next month to get another round of pills. I'll get more information then. This last time, I think I was more anxious just to get my hands on the drugs.

I'm feeling good now. Taking it easy on the work front again, basically working from home. I plan to show my face from time to time, especially as I start to get even better. I'm just trying to take things slow and not get ahead of myself.

Wednesday, July 27, 2011

Preparing for Vemurafenib to Wipe Out my Melanoma and my Pain

I just received my sixth and what should be my final dose of Yervoy. Let me take a step back and tell you what I've been up to. I met with Dr Lynn Schuchter in Philadelphia about two weeks ago which turned out to be very informative. Dr Schuchter works at UPENN and is the study coordinator for Plexxikon's Vemurafenib, or PLX4032 as I used to reference it on this blog. She has been working with Melanoma patients for many years, and is probably one of the leading and most recognized names in Melanoma research in the world.

As it turns out, Dr Schuchter was extremely pleased with my Yervoy pretreatment and has been timing our plan in a way that I was still able to receive this final dose before switching over to Vemurafenib.

Much like how I had been granted access to Yervoy, Vemurafenib is now in a phase 4 open access compassionate use trial setting. This means that I nor my insurance company will be paying for it, but it also means that I have to qualify for this new trial. There are three things that are happening now as prerequisite to my trial admission. I am scheduled to receive a brain MRI this morning and chest CT next week. Also my melanoma block was transferred from Frederick Memorial Hospital to Plexxikon so that they can re-run the BRAF studies to ensure that I am in fact a match for their drug.

One reason that I've been dragging my feet with this drug is that you hear so many times the story of great success and regression followed by a period of relapse and even more aggressive tumor growth. This still scares me. What is different now is that while the relapse might still occur when new "pathways" open up and trigger the cancer to start rapidly multiplying once again -- there are now other drugs in the pipeline that are beginning to target these other pathways. This remission period has been know to be anywhee from 3 to 13 months on average. There are some subjects who have been in complete remission for well over two years and are still going strong.

When you combine the the fact that my tumors have always been of the slow growing type, I've managed to change my entire life style and eating habits, I've now been pretreated with six doses of Yervoy which has trained my body to look for and fight Melanoma -- I actually like my odds moving into this round of drug treatment. The side effects are low, the promise of releif is huge -- it's all about the duration. If I could get another 13 months (or more) of pain free living -- I'm game.

Wednesday, June 29, 2011

Radiation treatment is complete. But what about BRAF?

For those of you who have friended me and have been following me on Facebook, you know that I've been back to see the radiation oncologist and decided to receive another round of treatment. This time I was treated with CyberKnife technology which is a lot more accurate and allows us to hit a more defined area of cancer with even more radiation. I will likely receive more intense side effects than before, but the treatment area is smaller so the long term effect would be minimized.

This morning, I finished my second and final CyberKnife treatment for this round. Now we wait and see what happens. I'll go back and get another CT on August 25 to see the status of the melanoma in my leg.

I also just this morning received a call from Dr Spira, who indicated that I do in fact have the BRAF mutation! The number seems to change based on who you speak with, but considering that only 20 - 30% of melanoma patients have this mutation, I am quite lucky to be one of those.

This news of course opens up new opportunities for me on the treatment front. The recently named Vemurafenib from Plexxikon, formerly known as PLX4032, has been making headlines of late showing amazing durable remissions in treated patients. You may remember my TV interview when Vemurafenib made it's media break through. I'm pretty excited about finally being eligible.

There of course some caveats. Dr Spira believes that I will "get more mileage" from the BRAF drug over my current Ipilimumab treatment. There are rules that prevent one from being on both drugs, so once we find a program to have me enrolled, I will stop receiving Ipilimumab, possibly for good.

So far the closest treatment facility appears to be in Philadelphia. What's nice about this drug is that it is a pill. I will have a vial of pills, and I'll simply take two pills a day. Forever.

For many who have been on the drug there is a window of time where the drug remains active. Because cancer doesn't play by any given rules, it is also well known to stop responding to this treatment where the cancer then comes back, usually more aggressive. Worse yet, if this happens we are at the end of treatment options. That's it. That's all we have.

There are documented cases where patients who have been receiving this drug and have shown continued durable complete responses for well over two years. All we can do is hope that I can be part of that group.

Wednesday, May 25, 2011

Latest PET Result Indicates Progression

I know that it's been a couple of months since I've last posted. I had just received the results that indicated my treatment plan was working. I was basically living with a clear head and not scared about my melanoma, after all it was the cancer, not me that was dying. -- I know that I've worried some of you by not posting but, after two years of living with stage IV melanoma, it was nice to have a period of time where I could live a little and spend some real time with my family while not worrying about cancer.

That time has once again ended. My latest scan results shows that the cancer that was dying out in my last scan has returned and is active once again. This progression qualifies me for another round of Ipilimumab (Yervoy).

Over the past few weeks, I had the same skin irritations and flare ups as I did during my first treatment phase which indicated that the drug was working. Because of this I had high hopes heading into this PET scan. At the same time, I had new pains as well as my leg pain had started to get worse which were all signs leading towards progression. I suppose I was in denial, which is probably why I was a little lackadaisical in getting the scan scheduled in the first place.

June 3rd -- I'll go back in and discuss further treatment options. I believe I'll start the re-induction phase of Ipilimumab. We also talked about it being time to get a biopsy of a live tumor to see if I have the BRAF mutation which would make me eligible for another trial drug that has had some real success recently.

Tuesday, March 15, 2011

Ipilimumab is working, here is the whole story.

Many of you received my Facebook update regarding my latest news, though it was very exciting I wanted to share with you the whole story. I don't know why I scheduled that particular doctor's appointment to fall on my birthday. Maybe after two years, I was simply gambling on receiving some good news so that I could really enjoy this one. Whatever the case, as the doctor closed the door and wished me a happy birthday, he confirmed for me that he had some really good news for me.

After reading the reports from the scan myself, I'll tell you it is not as cut and dry as he stated. He told me that the real trouble with Ipilimumab is that it acts so differently with each case. Results are solely based on the individual and include a number of varying factors. This is when Dr Spira told me that many of my tumors are either already dead or are currently in the process of dying. I have large areas of necrotic tissue where the tumor mass remains, but there is no longer any cancerous activity. I have other areas of small growth, but when all things are considered -- I've received a great benefit from this drug, and I am now classified as a respondent.

We always knew that I would get worse before getting better on this drug. The belief is that inflammation around the tumors as they were dying has been causing the pain that I've been feeling. I continue to have pain on my side, which is a result from the dead tumor which sits on top of my spleen. If my condition continues to improve and all the tumors do wind up dead, I am told there is a process in which the body will eventually absorb this dead tissue, but this will all take some time.

From what I've read, the FDA is supposed to report their findings by March 26. We should find out if Ipilimumab will receive approval for it's commercial use. If this happens, I can guarantee that I will "qualify" for another round. Otherwise, my case will have to be approved by the company's medical review board to determine if they think I can benefit from another treatment.

My next appointment with Dr Spira is on the 12th of April where I'll learn more about future treatment options. Though I got really good news this last time, this battle if far from over. As we all know by now, cancer is ugly and can become resistant and even come back with a vengeance.

Monday, February 28, 2011

Finally some good news. Possible delayed response from Ipilimumab.

I had a doctor's appointment on Friday which for the first time since starting this melanoma battle I got some good news. I though that Dr Spira might start doing jumping jacks in the exam room as he over and over again expressed how good that I looked. The last time time he had seen me was right after my hospital stay where I was doubled over in so much pain that they had me drowned in all sorts of pain medication. At that appointment, he was talking about hospice care and he even called me "sick." His gave me his personal cell phone number to call him if I needed help while we were away on our Disney vacation, he was certain that he'd receive a phone call from me. He was telling a different story this time. He was really excited to see me in such good condition especially knowing that I've been greatly reducing my pain medication. You see, pain from cancer just doesn't go away. Unless, of course, the cancer is going away.

"Clinically speaking, from everything we see, I think you have received a delayed response from Ipilimumab. I now think that the drug is working.", I believe were his exact words.

The original timeline was for me to get another set of scans in the beginning of March as it is known that the drug can take some time to activate. It is also known that patients tend to get worse before they get better. This is the frustrating thing about Ipilimumab. The hope is that patients are not so sick that they can afford to get a little sicker in the first place. For many this is just not the case. I'll now go back to Washington Hospital Center and get another scan to find out for sure. If the results show that I am stable or that the tumors have in fact regressed, I may be eligible for another round of Ipilimumab.

This is extremely exciting news!! We've never had this kind of possitive news from the medical insitution. Sure they've been happy to see me before and unable to explain why I look so good so far into a melanoma diagnosis. Never have any of these doctors been able to tell me that they actually think something is working. This is exactly what I needed as it is once again refreshed me mentally for the continued fight. I will, of course, update again once I know the results for sure.

Monday, February 14, 2011

Home from Vacation -- Let the Radiation Begin

We've been home from vacation for a few days now and I realized that I never posted an update on the blog. Everyone who follows me on Facebook already knows that we had an amazing and successful trip without too much drama. The pain stayed away and everyone had a great time!

Now that I am back, I had my appointment with Dr Lee, the local radiation doctor. Because the cancer is in my leg and away from more sensitive areas, I should receive quite a bit of benefit from the treatment without too many side effects. Dr Lee indicates that generally results with bone cancer are very good. -- I do have my reservations. I've managed to stay away from hard core chemotherapy and radiation up to this point and I've managed to stay quite healthy. I'm nervous that starting now might put me into a tail spin that I cannot control. We are at a point where the benefits outweigh the risk and it's worth a shot. That therapy will begin on Thursday and will be daily for about 3 to 4 weeks.

Anyone who has been following my story via the blog is certainly a friend in my book and in order to receive more frequent updates, I would recommend that you friend me on Facebook.

http://www.facebook.com/PHaldon

Be sure to include a message indicating that you are following my story on the blog so that you don't get categorized as spam, but please do get in touch. I've uploaded a bunch of photos from the trip to my Facebook account.

Wednesday, February 2, 2011

Today has been a long day coming. How all of a sudden a thing can change.

Today has been an eye opening for me if I have ever known one. I explained it at one point as the being the single most strangest in all my 32 years. Let me just update to let everyone know that I had my update with my oncologist yesterday and things were a little less "normal" than they have been in the past. They weren't based on any real findings or new results, but from the general images that were gathered from my previous trip to the hospital, things have gotten worse.

Things are bad enough where Dr Spira is no longer hopeful that Ipilmumab is working, and I am now what he considers a "cancer patient." He certainly could have pulled the plug in my upcoming vacation, but he didn't -- and for that I am glad. I think we're gonna need the break. He didn't draw any new blood work, but he did order a BRAF mutation screen against my original melanoma block to see if I am eligible for one of his other pills. Now certainly, Ipi could still be working, where they have reported regressions at over year after treatment. For the first time, it no longer looks like time is playing very nicely into my hands.

Since the hospital I've been hiccuping and have been in pretty severe pain. Dr Spira calls this reference pain that is being felt near the bottom of my liver by the nerve endings on the capsule. I've been able to come off the morphine but am on a pretty loyal dose of Oxycoton and a fentanyl patch on my arm. Over the past few days it has also been increasingly difficult to keep foods down. Now I'm not sure if I had just been a brain fuzz with all these new drugs, but this a'int good news folks. It's been difficult to keep down foods even throughout today, until Amy made me, you guessed it some vegetable broth and a potato. It was while I was finally holding this food down when it call came back so clear to me, why I did Gerson in the first place. I did Gerson before I was ever even sick, and so I don't know that even how vigorous we were following to the therapy, that I totally grasped the full ideas behind it.

My leg pain has been at it's worst today than ever before. Because of the hospital visits, I never got it for my initial alignments etc so that'll be the first thing I do when I return from Florida. I need to get some relief.

Of course I've joked about this in the past, but today was the first time I've even considered using "medical marijuana" to help keep down some of the food. In the weeks ahead, maryland legislators are working to pass a bill to make it legal in the State of Maryland. There are still obvious time considerations and federal jurisdictions to consider.

I had a reiki healer introduced into my life today. She was kind and gave me an hour of her time of what I considered to be a very peaceful, spiritual and eye opening experience. I'm not a very spiritual person, but now after speaking with her I now believe that my grand father is watching over me, helping me fight.

Since my two year battle started, I am finally at a point where I consider myself "sick." Not really a place that I ever wanted to consider myself, and I am scared. I don't know if I've been living under a rock this whole time or what, but I feel like my cancer survivorship started today. And now that it is all written down, I feel like I can still be a winner. I know that I can beat this.

Sunday, January 30, 2011

An update from home

I have now been home from the hospital since Thursday. I've been doing much better pain wise, though they have me pretty well medicated at home. I would prefer a reduction, they still have me on a bunch of oral morphine and a daily fentanyl pain patch. My current goal is to make make a good impression for the doctor on Tuesday so that I'm allowed my upcoming family vacation.

Nights have been interesting and the days have been getting better. I've been going longer and longer without needing a day time nap to reenergize. A few more days like this, I'll be good as new.

The Brockey's and the Buxton's have a family disney cruise vacation scheduled just ahead. We'll be spending a few days in the park and then heading off on the brand new Disney Dream ship! I plan to enjoy this year's super bowl on ship's huge family deck monitor. It should be a real blast!

I wanted to thank everyone for their warm comments, thoughts and flowers and send this quick update to let everyone know that I am where I need to be, back home with my family.

Thursday, January 27, 2011

Recent occurrences of pain have me in the hospital.

After experiencing a few recent incidents of absolute crippling pain in my right side and a couple trips to the emergency room, I decided it was time to update everyone as best I could. Though the pain is now under control, our best guess is that the tumor is finally pressing up against something and potentially causing some inflammation.

This series of events all started after receiving Zometa treatment on the 14th of January. I was supposed to get a slight fever and have a day or two of flu like bone stiffness. Instead what I got was a fever that lasted until Monday at times each over 104.3. I was seen by the doctors on Tuesday where they drew a couple bacteria cultures, regular blood work and we as a flu culture. Nothing yet has come back abnormal, which means that it could have been an unfortunate consequence of flu bug that was just gone by time it was tested for.

The next Friday on the 21st while sitting at the office. I started having some strong pains in my stomach. I went home and by the evening I found a couple positions that I could lay i that would help reduce the pain. I was able to sleep but woke up at about 2 AM with that same pain coming back on strong. I fought the pain until the morning, but then decided it was time to visit the ER. After some blood work, CT scan and a couple pieces of chocolate the Dr diagnosed me with possible pleurisy (inflammation around the lung tissue) or muscle spasms in my chest wall. He mentioned that even if he were totally wrong and the pain was somehow tumor related, the treatment would pretty much be the same. So he prescribed me valium and recommended 600mg Ibuprofen every 6 hours to keep down inflammation. He sent me home and I was doing pretty well taking it pretty easy.

Back to work on Monday and things started changing agains pretty rapidly. Though I already had a follow up at my oncologists's office for the next day, they wanted me to come in right away to see what was going on. They wanted me on a stronger pain medication but were pretty adamant about not covering any signs on additional fever so they sent me home with a bottle of Oxycodone. I took one immediately and another soon after when the pain didn't seem to go away. The pain got bad enough so I asked Amy to drive me home. We didn't make it out of the parking garage before we decided I just need to get get to the ER. I was bent over in agonizing pain, I just litterally could not breathe. We called our research nurse who told me to take another 2 oxy and get to the ER. We called Steven down from the office and he drove us to the closest hospital where they immediately doped me up on morphine. Needless to sy, at that point ... I wasn't feeling much of anything.

I've since been transferred to INOVA Fairfax Hospital. This is where my oncologist, Dr Spira and his associates have hospital practicing privileges. It has been a lot of wait and see. I'm on some steroids to treat the inflammation now. Ive been having a tough time keeping anything down (I blame all the dope) but they have me scheduled for an MRI. Seems like that will happen sometime this morning.

Af of last night, I've been able to keep down some food and some drink, so I'm heading in the right direction. They moved we away from the constant pain medicine drip. I'm now on a much less aggressive pain patch with access to a patient controller pain med button should I need it.



All things considered after living with Melanoma for more than two years, this has been my first real complication. Let's just hope that the Ipilimumab will pick up the pace and rid my body of this disease.