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.

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.