From Computer Tyme Support Wiki
Hello Friends and Family,
I had thought that I would have more definite results one way or the other this time but that's not the way it is. And I'm still in the process of absorbing the information. But the good news is the news isn't bad. And the bad news is the news isn't good. But whatever is happening I feel great and except for an occasional cough I would not know I have cancer and would rate my health as better than the average 62 year old. And I'm not likely to be dead any time soon. I'm doing well enough that I don't even qualify for pity anymore.
The scan showed slight growth and was lit up brighter possibly denser. My first question was if this showed that it didn't work. My doctor replied no, and he still thought that it might still be inflammation. I had thought that at 22 weeks out that we would be past that, but he was far more optimistic than I was. I think he's taking into account that I did get the fever, and that I'm still alive at 16 months in and I'm feeling great. And I have had no conventional cancer treatments and shouldn't be alive and healthy if something wasn't going right. He thinks I definitely got a process started and he thinks the process might still be active. I think the process started but might have fizzled out. But we both think we're on the right track. And the solution might require it be repeated more than once, that it needs to be boosted. It might be more effective the second time.
My oncologist at this point is more enthusiastic about this treatment than he was the first time, and we are putting together a plan for a second attempt. We agree on several things and are still putting together a plan.
1. We are definitely going to do it again. 2. Switching to Cyberknife for greater precision and more interesting geometries. 3. Target will be several remote tumors rather than the main one. 4. More interesting drug combinations. (Yervoy, Opdivo, gm-csf ?)
I wasn't really expecting to be fully cancer free in one attempt. In fact when it seemed to work so well the first time I was suspicious. It just seemed too easy to believe it. So none of this is a surprise to me. And I have to admit part of me wants to experiment, as weird as that might sound. I have a lot of ideas to improve the process. I was looking forward to walking into my cancer support group tomorrow and say, "See you around LOSERS!", but I'm not going to get to do that - yet.
Part of my new plan will also include bringing in more minds to work on the problem. I am definitely onto something and I need more people to understand this process and build on this idea. So I want to bring as much attention onto this as I can. I'm asking Kaiser to set up so I can do a presentation to their oncology staff to get more input and ideas. I'm also asking all of you who know medical people to spread the word to get more minds focused on this problem. I'm not a doctor and there's a lot I can be missing. Here's a link to the latest how to version of what I've done so far. If you know anyone who is dying of cancer and they have no other options, this is worth trying.
I wish the results weren't so mixed and confusing because it's hard explaining something I don't fully understand myself. I have noticed however in other accounts of abscopal effect that scan results stayed confusing for them too. It would be easier to get publicity if I were cured, but that hasn't happened. And - as I said the last time - I might be on the right track but ultimately it might not work for me. And it would be a shame for the rest of you if I got close and just missed it. Fortunately for me I'm not the one who will ever have to grieve over my loss. I'm the one feeling sorry for the rest of you. I'm never going to have to live in a world without me in it.
So - the bottom line is - I'm still alive - I'm feeling great. No new metastasis. If it's getting worse then it's getting worse slowly and I'm going to be around for a while longer. And we have new things to try. At this point I don't know what the ultimate outcome will be. But my opinion is that it is more likely that I'm going to cure this than not.
Thank you all for being my friends and all the support you have given me.
Follow me on Twitter @mperkel
(I'm still a BAMF)