The Bad and the Ugly

The words are not coming to me, so I apologize for all of those who have clicked on the blog a million times tonight and found no update.

Melanoma has dealt yet another nasty blow. Brian and I were devastated this morning to learn that his MRI and CT scan from yesterday showed tumor growth. The brain tumor is the biggest threat. The history…no known symptoms of brain tumor, high dose radiation treatment in January, still no symptoms. An MRI in May showed continued deterioration of the tissue and obvious necrosis (cell death), with no swelling. Around June 9th, Brian noticed some weakness in his right leg (good leg) and wondered what was going on. By the 10th, he could barely walk and we got an MRI scheduled. By the 13th, he was basically wheelchair bound with nearly complete paralysis in his right leg, and noticeable weakness in his right arm. The MRI showed that the tumor was still dying, but also showed some possible new growth, and significant edema covering the whole left side of his brain. He had a craniotomy on June 15 to remove this area. You can catch up to speed on that by looking back through our blog to those dates. The Aug. 6 scan of the brain was good, and we had renewed hope. The scan yesterday dashed that hope, as this spot is growing again. The seriousness of this (besides that it is a brain tumor!) is that it is in the same spot that has already had the maximum radiation dosage, as well as already having been removed (some residual melanoma cells were left after the craniotomy to keep from causing permanent brain damage during removal). These facts leave us with essentially no options.

Now onto the body…the right adrenal gland tumor is stable. One small sub-q tumor appeared to have shrunk slightly. The rest of the tumors grew. His biggest issue in the body is this mass that is forming behind the left kidney. It is forming its own army and isn’t backing down. Brian has already had significant tumors removed from this area, to no avail, and he seems to have an issue on his left side. He has had many, many sub-q’s (often very large) removed from this area, yet there are more growing. Today, these aren’t life-threatening; but we can’t get a handle on them.

So where does that leave us? Well, I’m just going to go all out and lay it on the line. Maybe tomorrow I will post again and try to show my optimism. Maybe tomorrow will bring new hope. But today is today, and today the news is bad.

Brian’s oncologist feels we have exhausted our options. This might be a shocker to you; it is not to us. I’m not saying we aren’t devastated, and reeling from the shock of realizing this is happening, just that the information itself is not a shock to us. In the summer of 2005, Brian endured two horribly toxic treatments of biochemotherapy that nearly killed him. This was our biggest gun. He barely remembers anything, as he was in such sad shape. These toxic drugs didn’t budge the massive tumors in his leg, and the doctors were very worried at that point. They wanted the tumors out before they could spread, and he had surgery right away. They told us then that the DNA of his melanoma showed a very strong, if not the strongest, melanoma they had ever seen. They were honest in telling us that this was not good. They wanted us to know that they were not giving up on Brian, and that we were going to make every attempt to fight this; but that this type of disease was often fatal. Radiation on the leg left him permanently disabled, but did indeed kill any lingering disease, as it has never recurred in his leg.

When the disease showed back up in May of 2006, we were able to remove it surgically until it resurfaced on the adrenal gland in July 2006. At that point, we opted for IL-2 treatment, in which he did four rounds last fall. The results were again devastating, with massive tumor growth, despite our efforts. In the midst of trying to solve that problem, an MRI showed the spot on his brain.

Fast forward to now…

Is surgery an option? At this point, no. It doesn’t mean we won’t opt to do a surgery that would improve Brian’s quality of life. But his surgery in Feb. was massive, and he took nearly 12 weeks to somewhat bounce back…and took 200 days to finally get all the drains out. All this, to have it return less than 4 months later.

Those of you that have seen him, you know what I mean. His body is ravaged by this disease. Up until a few weeks ago, I would say he was the same Brian, just different physically. But this disease is taking its toll and destroying his spirit. He told me today that he thinks he has finally cracked. He has played all of his cards in a game that is so unfair.

It was an awful morning. Brian has cried most of the day, and so have I. We were very honest with the girls, and they did not take it well. I can only hope and pray that they be wrapped up in our love and the love of their Dad and Abby, and all their family and friends during this very difficult time. We haven't addressed the issue with Tye much, just in saying that Daddy is sick. Tye has been very clingy lately, and I know he can tell something is out of whack. We intend to be more verbal with him, knowing his level of understanding will be very hard to deal with. Brian’s parents are here, and he is feeling good to have them with us. My dad brought supper over and mowed our yard in the rain!

Brian asked Dr. Anderson how long. I so hoped he wouldn’t ask, but I think I knew he eventually would. He told us he would expect Brian to be very sick in 8 months, maybe 4 or 5. He also reminded us that melanoma is very mysterious, and could take a different path that could make his time here longer…or shorter. He feels that this mostly all depends on what the tumor in the brain decides to do.

So we do have options. A biggie is palliative care, which is basically taking care of Brian, without attacking the cancer. It differs from hospice essentially, just in the fact that hospice is actually end-of-life care, and this palliative care would be helping Brian live with this disease for as long as possible.

What’s behind door #2, is that what you’re asking?

Dr. Anderson is not giving up on Brian. He is extremely concerned with his quality of life, given what he knows about this specific cancer, as well as others. Many times patients continue with treatment, only to lose precious time with their loved ones, with the same end results. Patients end up incoherent and hospital bound, and at the expense of precious quality of life. Brian doesn’t want to stop, yet, but he has some limits. He is worn out, and knows that everything we have done hasn’t budged this. Yes, something out there might work. But the big ammo has been used, which leaves us with a randomized Russian roulette that won’t be taking into consideration Brian’s dignity or quality of life, and won’t treat him as a whole person, a man who wants moments that are slipping away. Yes, there could be that one drug out there that might do something. His history has shown that to nearly for sure not be the case. It is almost like having a huge gash that we keep stitching up. It keeps busting open, despite our efforts, and each time, the gash gets bigger. And now that it is so big that it can’t even be stitched…well, now is not the time for bandaids. Yes, we could wage a holocaust on his body, none of which will likely address the brain issue, which is ultimately his biggest threat. The big drugs gave us less than a 20% chance, so you can imagine what we are facing with the piddly ones.

A decision has already been made. It was an easy one. Brian isn’t ready to stop, so we will trudge forward. He has basically decided that this is it, this is the one thing left in our arsenal. We have opted to explore and investigate another treatment. This is an anti-CTLA4 drug, such as Medarex or Ipilimumab. The 411 on melanoma is that it is somewhat of a failure of the immune system, to put it in laymen’s terms. Melanoma is highly resistant to chemotherapies, and the only real successful drugs have been those that boost the immune system. I say successful, meaning maybe 10-15% chance. Heck, Brian even had a 1 in 8 chance of winning a free Mt. Dew today on his lid!

We are moving forward with this antibody, with the help of Dr. Anderson and Melanoma International. It is a trial drug, so Brian will have to fit the criteria. The good news is that he is not excluded by his brain met. The obstacle is that he is excluded if he is HLA2 negative, which we are pretty sure he is. That is just a marker in the blood. Again, the deck is stacked against us. We have learned today that there appears to be some trials open that offer compassionate use of the drug, and these trials have no requirements, as far as the HLA2 neg/pos., and no other exclusions that would affect Brian. Compassionate use sounds a little like biding time or a “we feel sorry for you” approach, but what the hell else are we going to do? We have some more details to iron out, and hope to know in a few days whether this is even an option for Brian. We can play nasty at this game too, and we can only hope to have a fair chance at a future together.

So if you want to pray specifically, pray for Brian to be able to have the anti-CTLA4 drug. This drug, albeit in small percentages, has shown itself to bring stage 4 melanoma patients back from the brink of death to no evidence of disease. Brian and I have agreed to never give up hope, to continue to pray for a miracle, to trust in God to hear our plea, and we’re not backing down from that. We also ask for special prayer for the kids, as they are faced with something we all hope as parents that we can protect our children from, and we sadly cannot.

Thank you for being part of our journey. I pray that you are all in the midst of a miracle, one that will change your life forever, one that will change what is important to you. I pray that you might hug your kids a little tighter tonight. I read somewhere recently, and I say this seriously in fear…that each of you is only one diagnosis away from being where we are. And in that knowledge, I can only hope you will treat each day and each moment as a precious gift.

So I’m going to pull a Halley and end on a lighter note. Brian is just baffled, I mean perplexed at this whole Lewis and Clark deal. He keeps seeing signs along the highway…you know, the brown and white ones that show Lewis and Clark pointing? They are everywhere. Yesterday he went on and on as to who is the expert on all of this and who really knows exactly which way Lewis and Clark went. Come on, it seems as if they went right up Providence and past Faurot Field at MU…how odd. Then we would see signs in other places in Columbia, and again, it seemed they were making little pit stops around town. He got on a roll about this, as only Brian Halley can do. He said he wondered if they really expected us to believe that so many years ago, when Columbia was just wide open field, that they just zigzagged all over, and that they have record of that. Crazy, what 2 social studies teachers talk about! Then today came…It was the only real chuckle we got…I was driving, he was crying, and there were the dynamic duo, right there on I-70 again. Brian pointed through his tears and just shook his head and laughed.

Many blessings from our family to yours,
Jenni