› Forums › General Melanoma Community › The thin line between wellness and otherwise
- This topic has 16 replies, 8 voices, and was last updated 12 years, 6 months ago by
JerryfromFauq.
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- September 25, 2011 at 3:08 pm
Two weeks ago today, I went to Madison, Wisconsin, and completed my Ironman journey. No – scratch that – I raced, I struggled, and I triumphed. I finished my 2.4 mile swim, 112 mile bike ride, and 26.2 mile run in 12 hours, 38 minutes, and 22 seconds, right about the top quarter of the field. Beyond healthy – I was unstoppable.
Two weeks ago today, I went to Madison, Wisconsin, and completed my Ironman journey. No – scratch that – I raced, I struggled, and I triumphed. I finished my 2.4 mile swim, 112 mile bike ride, and 26.2 mile run in 12 hours, 38 minutes, and 22 seconds, right about the top quarter of the field. Beyond healthy – I was unstoppable.
Friday, I went back to Madison for my 3-month scans. While I was training over the summer, even while I was enjoying one glorious Sunday two weeks ago where everyone makes you feel like a rock star, mm was growing. If brain mets were bad, leptomeningeal mets are worse. It looks like I have at least three spots on the brain lining, plus a new one within the brain. The met in my left breast that IL-2 knocked out appears to be growing again, too, but that's the least of our concerns at the moment.
The immediate plan is to start whole brain radiation as soon as Monday. After I finish that, Dr. Albertini and I will figure out what to do next. He mentioned re-inducing ipi; he's had some people have success on Temodar. Then there's the intrathecal route, like Amy did. Or studies – some don't exclude leptomeningeal disease if you are asymptomatic, which I am. Does anybody have a really good medical oncologist with lots of brain experience we could consult?
I choose to live my life on the wellness side of that thin line. I ran 10 miles yesterday, and now I think I shall go to the grocery store. You can bet you'll see my bald little head bopping along the trails later this fall. Well, actually you won't because I'll be wearing a hat, but you get the picture.
KatyWI
PS. A special thank you to those who donated to the MRF through my race. Together we raised $1600. If you consider that a career development grant through the MRF is $50,000, we just funded a week and a half of research. Somewhere out there, there's a week and a half worth of work that's going to change the world. Maybe our little contribution will be the one.
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- September 25, 2011 at 4:13 pm
Katy,
I don't know your story until today but, wow, you are a survivor. Your attitude is inspirational, sorry for the cliche, but sometimes they fit. And I mean inspirational is an understatement. You remind me of my husband Peter who iwas so positive when he was going through the worst of his treatment during stage IV. The odds were I believe lower for stage IV in those days. He only had one brain met, so I can't compare. You can read a little more about his history in my posts from yesterday.
I didn't post that he also got leukemia and it was pretty much supposed to take us down. I didn't, however, see him doing quite the athletic things that you are!!!
Hey, I'm just a caregiver. I've seen this thing from the outside looking in. But, to watch people like you take advantage of every opportunity to have a sense of humor, to squeeze every ounce of joy out of their life…that's a lesson we should all learn.
I will be sending you t thoughts and prayers. I wish I could meet you bopping down the aisles in my grocery store.
All the best to you and your family.
Judy Clifford
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- September 25, 2011 at 4:13 pm
Katy,
I don't know your story until today but, wow, you are a survivor. Your attitude is inspirational, sorry for the cliche, but sometimes they fit. And I mean inspirational is an understatement. You remind me of my husband Peter who iwas so positive when he was going through the worst of his treatment during stage IV. The odds were I believe lower for stage IV in those days. He only had one brain met, so I can't compare. You can read a little more about his history in my posts from yesterday.
I didn't post that he also got leukemia and it was pretty much supposed to take us down. I didn't, however, see him doing quite the athletic things that you are!!!
Hey, I'm just a caregiver. I've seen this thing from the outside looking in. But, to watch people like you take advantage of every opportunity to have a sense of humor, to squeeze every ounce of joy out of their life…that's a lesson we should all learn.
I will be sending you t thoughts and prayers. I wish I could meet you bopping down the aisles in my grocery store.
All the best to you and your family.
Judy Clifford
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- September 25, 2011 at 4:14 pm
Temodar didn't work very long for my wife, she is about to start Abraxane/Avastin combo.
Nick
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- September 25, 2011 at 4:14 pm
Temodar didn't work very long for my wife, she is about to start Abraxane/Avastin combo.
Nick
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- September 25, 2011 at 4:34 pm
Katy, I was wondering how the triathlon went, what an incredible accomplishment! You are truly an inspiration to myself and my husband (diagnosed stage IV in July) and are a beautiful example of not letting melanoma rule your life. I am confident that with your positive attitude and superior physical conditioning you will handle your next treatment with ease. Keep up the good fight and know that there are plenty of people cheering you on. God bless! Valerie(Phil’s wife) -
- September 25, 2011 at 4:34 pm
Katy, I was wondering how the triathlon went, what an incredible accomplishment! You are truly an inspiration to myself and my husband (diagnosed stage IV in July) and are a beautiful example of not letting melanoma rule your life. I am confident that with your positive attitude and superior physical conditioning you will handle your next treatment with ease. Keep up the good fight and know that there are plenty of people cheering you on. God bless! Valerie(Phil’s wife) -
- September 25, 2011 at 10:31 pm
Katy — I've been a runner for 24 years, but I know I will never have the discipline to do what you have with this ironman — it's truly an incredible accomplishment.
As for treatments, I like the looks of the Abraxane results that Nick posted above.
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- September 25, 2011 at 10:31 pm
Katy — I've been a runner for 24 years, but I know I will never have the discipline to do what you have with this ironman — it's truly an incredible accomplishment.
As for treatments, I like the looks of the Abraxane results that Nick posted above.
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- September 25, 2011 at 10:56 pm
Katy,
I'm so sorry with your latest scan results. Who would have thought that you could do so well in a triathelon and have mel growing like that. Your body is in top conditioning and will hopefully be able to beat this back.
If I remember correctly the treatment that Amy had worked on the leptomeningeal mets had worked. Hopefully someone else can respond to that.
Your attitude is amazing.
Linda
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- September 26, 2011 at 6:38 am
Yes, the work Dr Pappa did worked for Amy. She had clear test results on the leptomeningeal mets front. Gsk had promised her that if she had two months clear, they would restart her on their BRAF drug. After her being clear for the 60 days, they refused Dr. Pappa's request for the restart, in spite of their previous promise. She told me this the week before she died. She believed the restart would have worked for the other tumors that grew whill she was off the GSk drugs.
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- September 26, 2011 at 6:38 am
Yes, the work Dr Pappa did worked for Amy. She had clear test results on the leptomeningeal mets front. Gsk had promised her that if she had two months clear, they would restart her on their BRAF drug. After her being clear for the 60 days, they refused Dr. Pappa's request for the restart, in spite of their previous promise. She told me this the week before she died. She believed the restart would have worked for the other tumors that grew whill she was off the GSk drugs.
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- September 25, 2011 at 10:56 pm
Katy,
I'm so sorry with your latest scan results. Who would have thought that you could do so well in a triathelon and have mel growing like that. Your body is in top conditioning and will hopefully be able to beat this back.
If I remember correctly the treatment that Amy had worked on the leptomeningeal mets had worked. Hopefully someone else can respond to that.
Your attitude is amazing.
Linda
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- September 26, 2011 at 1:05 am
Katy,
So sorry to hear your news. I have been thinking about you a lot and hoped we cross paths Friday at Dr. Albertini's office. I am at a loss for words. I truly felt we'd both have NED status to report. I am so angry at melanoma but so encouraged by you as I know eventually I will find myself in your shoes. FIGHT LIKE A GIRL AND KICK mels ASS!
Prayerfully yours,
Mary (NED 2 years)
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- September 26, 2011 at 1:05 am
Katy,
So sorry to hear your news. I have been thinking about you a lot and hoped we cross paths Friday at Dr. Albertini's office. I am at a loss for words. I truly felt we'd both have NED status to report. I am so angry at melanoma but so encouraged by you as I know eventually I will find myself in your shoes. FIGHT LIKE A GIRL AND KICK mels ASS!
Prayerfully yours,
Mary (NED 2 years)
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