Let's Play Catch Up
April 19, 2010 08:38 PM Filed in: Cancer
Okay, if I’m going to get this blog going again,
there are a few things I want to get out of the way
first.
Most important is that I want to give my friends and readers an update on my health situation. The short answer is that things are going very well. If you want more detail, see below. But I want to say right here that because things are going so well, I certainly don’t intend to turn this blog into a “Jim’s Cancer Update” blog. There are a lot of things that I want to write about and share. But I know many of you will want to know the latest health news, so here it is...
My forced retirement from blogging started last October. At the time, I was involved in a drug trial for a drug called ABT/888. And it was working wonders for me. Things were going so well, in fact, that it was for this very reason that I stopped blogging. I wanted to live life directly, and not be so concerned about writing about it.
But then last January, that remarkable drug seemed to have run out of steam. It was no longer being effective at holding back the growth of my tumors. The January CT scans showed my tumors growing again.
I was taken off of ABT/888 while my doctors tried to formulate a plan B. One option my doctors were considering was putting me on a drug (I forget the name) that would almost certainly lead to kidney failure (and necessary kidney surgery) and almost total loss of hearing. Hmm, sounds like fun, huh?
But in fact, that plan was more of a Plan D, not B. Before things got that bad, there was one other major opportunity. You see recently a new class of cancer fighting drugs has been developed and this new drug happens to be pretty darn effective in cases of advanced melanoma. The drug shows so much promise that the New York Times recently ran a three part article on the new drug.
Part 1
http://www.nytimes.com/2010/02/22/health/research/22trial.html
Part 2
http://www.nytimes.com/2010/02/23/health/research/23trial.html
Part 3
http://www.nytimes.com/2010/02/24/health/research/24trial.html
This new drug, called RO5185426, was not being studied at UCSF, where I was getting my care, but it was being studied at UCLA. By the time my doctors suggested this study as my best option, it was now early March. So now please consider this. Since I was taken off of the previous drug in January, I had not been involved in ANY cancer treatment for two months. During that time, my cancer had free reign over my body and it felt like it.
Throughout March things got much much worse for me. I was in a great deal of pain. I was eating pain meds like popcorn. Maybe worst of all, a lump had appeared on my back under my skin. My new doctor identified it as a melanoma tumor. It was about the size of a grape and very easy to feel between my skin and my ribcage.
It was during this painful period that I had to fly down to LA and make the arrangements to be in the study. I was very lucky to get in on the day they stopped taking new participants, but I was discouraged to hear that before I got the new meds, I would have to participate in two weeks of preliminary drug-free tests. These would be spent in the hospital at UCLA. I have very little memory of those two weeks because I was so wacked out on pain meds. It seemed like the day I would get the cancer meds would never arrive.
But thankfully, it did arrive. And here is where the story gets very interesting. The drug therapy involves taking four pills in the morning, and four pills in the evening. I started the pills on a Friday. The following Tuesday morning, I woke up and habitually reached around to feel the familiar lump on my back. It was gone. Yes. Gone. It was not just smaller. I could not feel a single trace of it.
I can tell you that my mood improved considerably! And then, almost as amazing, the following Saturday I discovered I no longer needed to take any pain medication. I was completely comfortable.
I have now been on the new drug for four weeks and I can tall you that I have not felt this good in years. Also, I forgot to tell you the most amazing thing about this new drug. Because it is targeted to a specific gene mutation that only exists in the cancer cells, the drug can be delivered in very high doses with very little side effects. The drug basically ignores the rest of my body. This is NOT the full body carpet bombing of chemotherapy. I do not feel any effects of this drug AT ALL.
Truthfully, many other patients on the drug get some severe rashes. I have been spared these. I seem to be tolerating the drug pretty well.
A few days ago I returned from my second and final extended stay in Los Angeles. My doctors there are encouraged. My next CT scan will be in May and it should be very interesting to finally get empirical evidence of what I suspect is happening. And what I suspect is happening is that I am getting better. Not a little better.....A LOT better.
I have energy. I have no pain. I am suffering no side effects from the medication. I am having no trouble breathing or participating in extensive physical activities.
And now? Now I can actually start thinking about OTHER things! And that is the motivation behind getting my blog going again. I find that my imagination is wandering to other subjects and ideas. And it is those that I want to share here.
If you have questions, ask away in my new fancy smancy comment board. My old comment company went out of business and I must say that the new service has some very cool features. I hope you like it.
Most important is that I want to give my friends and readers an update on my health situation. The short answer is that things are going very well. If you want more detail, see below. But I want to say right here that because things are going so well, I certainly don’t intend to turn this blog into a “Jim’s Cancer Update” blog. There are a lot of things that I want to write about and share. But I know many of you will want to know the latest health news, so here it is...
My forced retirement from blogging started last October. At the time, I was involved in a drug trial for a drug called ABT/888. And it was working wonders for me. Things were going so well, in fact, that it was for this very reason that I stopped blogging. I wanted to live life directly, and not be so concerned about writing about it.
But then last January, that remarkable drug seemed to have run out of steam. It was no longer being effective at holding back the growth of my tumors. The January CT scans showed my tumors growing again.
I was taken off of ABT/888 while my doctors tried to formulate a plan B. One option my doctors were considering was putting me on a drug (I forget the name) that would almost certainly lead to kidney failure (and necessary kidney surgery) and almost total loss of hearing. Hmm, sounds like fun, huh?
But in fact, that plan was more of a Plan D, not B. Before things got that bad, there was one other major opportunity. You see recently a new class of cancer fighting drugs has been developed and this new drug happens to be pretty darn effective in cases of advanced melanoma. The drug shows so much promise that the New York Times recently ran a three part article on the new drug.
Part 1
http://www.nytimes.com/2010/02/22/health/research/22trial.html
Part 2
http://www.nytimes.com/2010/02/23/health/research/23trial.html
Part 3
http://www.nytimes.com/2010/02/24/health/research/24trial.html
This new drug, called RO5185426, was not being studied at UCSF, where I was getting my care, but it was being studied at UCLA. By the time my doctors suggested this study as my best option, it was now early March. So now please consider this. Since I was taken off of the previous drug in January, I had not been involved in ANY cancer treatment for two months. During that time, my cancer had free reign over my body and it felt like it.
Throughout March things got much much worse for me. I was in a great deal of pain. I was eating pain meds like popcorn. Maybe worst of all, a lump had appeared on my back under my skin. My new doctor identified it as a melanoma tumor. It was about the size of a grape and very easy to feel between my skin and my ribcage.
It was during this painful period that I had to fly down to LA and make the arrangements to be in the study. I was very lucky to get in on the day they stopped taking new participants, but I was discouraged to hear that before I got the new meds, I would have to participate in two weeks of preliminary drug-free tests. These would be spent in the hospital at UCLA. I have very little memory of those two weeks because I was so wacked out on pain meds. It seemed like the day I would get the cancer meds would never arrive.
But thankfully, it did arrive. And here is where the story gets very interesting. The drug therapy involves taking four pills in the morning, and four pills in the evening. I started the pills on a Friday. The following Tuesday morning, I woke up and habitually reached around to feel the familiar lump on my back. It was gone. Yes. Gone. It was not just smaller. I could not feel a single trace of it.
I can tell you that my mood improved considerably! And then, almost as amazing, the following Saturday I discovered I no longer needed to take any pain medication. I was completely comfortable.
I have now been on the new drug for four weeks and I can tall you that I have not felt this good in years. Also, I forgot to tell you the most amazing thing about this new drug. Because it is targeted to a specific gene mutation that only exists in the cancer cells, the drug can be delivered in very high doses with very little side effects. The drug basically ignores the rest of my body. This is NOT the full body carpet bombing of chemotherapy. I do not feel any effects of this drug AT ALL.
Truthfully, many other patients on the drug get some severe rashes. I have been spared these. I seem to be tolerating the drug pretty well.
A few days ago I returned from my second and final extended stay in Los Angeles. My doctors there are encouraged. My next CT scan will be in May and it should be very interesting to finally get empirical evidence of what I suspect is happening. And what I suspect is happening is that I am getting better. Not a little better.....A LOT better.
I have energy. I have no pain. I am suffering no side effects from the medication. I am having no trouble breathing or participating in extensive physical activities.
And now? Now I can actually start thinking about OTHER things! And that is the motivation behind getting my blog going again. I find that my imagination is wandering to other subjects and ideas. And it is those that I want to share here.
If you have questions, ask away in my new fancy smancy comment board. My old comment company went out of business and I must say that the new service has some very cool features. I hope you like it.
. . . . . . . . . .