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the cancer guy
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/24/2012 5:52PM - in reply to Brent. Reply | Return to Index | Report Post
They finally got back to me. Apparently my already screwed up genes now have another genetic transcription error. So, I went from a population of about 50 to a population of 1. In short, they have no name for what I have and my presumption is they will treat with the same agents. At this point, it's all wild guesses. They are conferring with MDA on treatment options, but, the truth is, no one knows what to do for me. We went from here are some ideas to "let's see what we can make up" in one week. The wife wants margaritas for dinner. Who am I to deny her?
a fellow
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/24/2012 6:20PM - in reply to the cancer guy Reply | Return to Index | Report Post
I would proceed with caution. Don't be haste in making any treatment decisions. Can they send your samples off to another lab for confirmation? This seems so unbelievable. Maybe their analytical methods are flawed?

I'm so sorry, CG. You are in my prayers, as always.
the cancer guy
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/24/2012 6:32PM - in reply to a fellow Reply | Return to Index | Report Post
Mayo clinic, who originally determined the type of cancer, did the analysis. MD Anderson confirmed. So, they are possibly going to do gene sequencing to find additional targets to open up the pool of potential therapies. I am officially a population of one. Weird.
a fellow
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/24/2012 6:43PM - in reply to the cancer guy Reply | Return to Index | Report Post
Do you know what gene they found the second mutation in? If so, let me know. I'll do my own literature-based research on it. It must be a gene involved in Hematopoetic growth. Did they say whether they think the mutation is directly contributing to your low platelets or if it is an indirect consequence of uncontrolled blood cell growth crowding out platelets?
the cancer guy
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/24/2012 6:53PM - in reply to a fellow Reply | Return to Index | Report Post
Chromosome 13. Quick research suggested missing sections (or transcription errors) on this gene lead to leukemia and similar blood-based forms of cancer. In addition to the other two transcription errors related to the first cancer type it poses a complex scenario.
A fellow
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/24/2012 8:18PM - in reply to the cancer guy Reply | Return to Index | Report Post
Some of these blood cancers can be controlled with chemotherapy and others are slowly progressing and thus dont need immediate treatment. Are they doing further testing of your blood cells to look at the numbers and types of blood cells? If they are trying to distinguish between leukemia vs lymphoma, for example.
the cancer guy
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/24/2012 9:22PM - in reply to A fellow Reply | Return to Index | Report Post
At this point they are still looking at a course of action for therapy. I know my counts changed rather dramatically two months ago, so, it would seem that something is at play. They didn't say it was leukemia, but, the condition that precedes that, maybe myeoldisplasia (spelling?). At any rate, my counts don't like up with leukemia. It's a different set of conditions I have going on. I think I put up my counts on another thread. I'll have to see if I can find it.
the cancer guy
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/25/2012 7:37AM - in reply to the cancer guy Reply | Return to Index | Report Post
Wednesday: 2 (38:33)
joho
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/25/2012 7:42AM - in reply to the cancer guy Reply | Return to Index | Report Post
Good to see that you are able to get back out on the road. Keep plugging away at it.
bleary eyed
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/25/2012 9:20AM - in reply to the cancer guy Reply | Return to Index | Report Post

the cancer guy wrote:

Wednesday: 2 (38:33)



Woo hoo! You're a champ. I passed on my run this morning. Both kids woke last night with a stomach virus- at the same exact moment, weirdly. I was awake the majority of the night cleaning vomit and showering them (and myself) in succession. Maybe I'll try to get outside for a run later this afternoon. Thanks for the motivation! Keep your chin up- you're a fighter.
Flo'da Boy
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/25/2012 9:21AM - in reply to the cancer guy Reply | Return to Index | Report Post
I secknd that! Good to see such determination. Amazing
MeHereYouWhere?!
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/25/2012 9:32AM - in reply to Flo'da Boy Reply | Return to Index | Report Post
CG, you are amazing! Thank you for sharing your battle with us. You, sir, are a real man!
the cancer guy
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/25/2012 11:09AM - in reply to MeHereYouWhere?! Reply | Return to Index | Report Post
"Oh so you want to bring up the real man thing again?" Sorry I couldn't resist. : )
| Conundrum
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/27/2012 11:50PM - in reply to the cancer guy Reply | Return to Index | Report Post

the cancer guy wrote:

"Oh so you want to bring up the real man thing again?" Sorry I couldn't resist. : )


Haha I laughed out loud, too much.
Good to see that you're getting back to the roads again, keep it up!
the cancer guy
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/28/2012 7:33AM - in reply to | Conundrum Reply | Return to Index | Report Post
Woke up this AM to see my blog post on the Microsoft site I mentioned a few days ago. Very cool. I got some extra pimp in my limp this morning! Totally non-running related, but, a really cool event for me!
fattymcgee
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/28/2012 7:37AM - in reply to the cancer guy Reply | Return to Index | Report Post
On the bright side, at least you know your mom was being honest when she told you are special and unique! : ) Praying for a miracle for you, CG.
the cancer guy
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/29/2012 7:44PM - in reply to fattymcgee Reply | Return to Index | Report Post
I woke up early this morning to go for a walk, but, decided to head to the ER instead. My arm was killing me and I had been up all night. Turns out I spent 11 hours at the hospital getting two pints of O+ and the nephrologist I saw in October read me the riot act. He was talking about wanting to put me on dialysis and all this noise. I was so not in the mood to hear all that. Grrrr. Maybe I'll get to walk tomorrow.
Brent.
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/29/2012 9:39PM - in reply to the cancer guy Reply | Return to Index | Report Post

the cancer guy wrote:

I woke up early this morning to go for a walk, but, decided to head to the ER instead. My arm was killing me and I had been up all night. Turns out I spent 11 hours at the hospital getting two pints of O+ and the nephrologist I saw in October read me the riot act. He was talking about wanting to put me on dialysis and all this noise. I was so not in the mood to hear all that. Grrrr. Maybe I'll get to walk tomorrow.


What'd you do to get read the riot act???

CG, please check your mail. I had sent you a few and am still waiting for a response. Responding to just the latest, at least, would be great. I really hate to make any demands on your time. So, sorry! Don't take this as another riot act.

For others' eyes:

http://fight-like-a-runner.blogspot.jp/

http://www.giveforward.com/fight-like-a-runner

WWPD
the cancer guy
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/31/2012 7:11PM - in reply to Brent. Reply | Return to Index | Report Post

Brent. wrote:


the cancer guy wrote:

I woke up early this morning to go for a walk, but, decided to head to the ER instead. My arm was killing me and I had been up all night. Turns out I spent 11 hours at the hospital getting two pints of O+ and the nephrologist I saw in October read me the riot act. He was talking about wanting to put me on dialysis and all this noise. I was so not in the mood to hear all that. Grrrr. Maybe I'll get to walk tomorrow.


What'd you do to get read the riot act???

CG, please check your mail. I had sent you a few and am still waiting for a response. Responding to just the latest, at least, would be great. I really hate to make any demands on your time. So, sorry! Don't take this as another riot act.

For others' eyes:

http://fight-like-a-runner.blogspot.jp/

http://www.giveforward.com/fight-like-a-runner

WWPD


The kidney doc saw my numbers and wanted to get me on some sort of therapy because the levels he look at for his area of specialization are extremely (read dangerously) high. So, he saw my inaction as unresponsiveness to his knowledge. Little did he know it has been sitting at 3 since June of last year. For normal people I am in bad shape. For me, these stats am pretty much normal.

So, fast forward to today's doctor's visit. My oncologist told me he had been working with the fellow down at MDA we use. He came up with a plan to give me etoposide (VP-16) and ifex. My doctor laid out the risks and said I am not really a candidate for any trials with my counts being what they are. If this plan works 100%, which he said is unlikely, it would buy me some time and bring my back to my current level of well-being, but, I would probably be in a hospital for a month at a time for each round. He said it would take 2 rounds to know if it was really doing any good although we would have hints at the end of round 1.

Needless to say, hearing you can die now or die later is hard to take. The plan they outlined has never been tried because no one with my tumor type has ever had it progress straight to the marrow. In other words, there are no stats because I am the first. They determined the malignancy in my marrow is a variation of my original tumor type, but, different. When I used the two agents in the 10 rounds before my surgery is really messed me up. We added it on top of my standard agents at the suggestion of my surgeon. It did a number on me. Honestly, I am thinking about not pursuing therapy because if I do it could very easily kill me, and, the best they would expect is to get me back to where I am. The chances of it only buying me time with little to no side effects is maybe 5%. If it was a known, effective course of action, I might be thinking differently, but, I have to accept I am basically at the end of my options. In other words, I need to begin accepting and preparing to die.

This is a weird place. I never thought about what death would actually look like, much less, like this. Having to tell your boss, thank you for the opportunity, but, I must now leave work to go and never come back. Telling my kids I can't play with them because if I get an infection it could kill me. Essentially having to systematically and methodically close up shop and prepare to depart. Man, what a weird scenario! We have a little time to decide, yet, even if I do therapy and it does work, the same message stands as did before: this is incurable, and, now, is twice as deadly since it's in two bodily systems. Not sure if I'll ever walk or run again. My body just ache more and more these days. Walking is painful. Breathing is hard. And, the thought of running is frightening.

I appreciate all the support and help I have gotten from folk on the board. Thanks everyone for letting me share my story and encouraging me. I have had some low places and this is one of the few spots I have been able to be honest because I don't fear the effects it will have on my relationships if I bare my soul here as I might in face to face conversation. Even when I was no longer a runner this place took me and made me feel like I belonged and that's important and special. So, I will try to keep updating as time passes, but, at some point, there will be a last post and I won't be around any more. I don't know how far off that is, but, I suspect seeing new years would be a pretty surprising thing. Well, off to bed at 7:15 cause sleeping 10 hours today wasn't enough. Probably just depressed, but, fatigue and pain are heavy today. Talk to everyone soon.
joho
RE: Here's to breaking 20 for 5k ( la EddyLee) 7/31/2012 8:36PM - in reply to the cancer guy Reply | Return to Index | Report Post
Dude, You will always be a runner. You absolutely epitomize what being a runner is all about.

Don't quit because it hurts.
Never give up.
One day at a time.

You are truly inspiring those of us following you and your battle.
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