No hypermetabolic lesions identified to suggest metastatic

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Redtexa5
Posts: 181
Joined: Thu Aug 02, 2012 11:41 pm
Location: Austin, Texas

No hypermetabolic lesions identified to suggest metastatic

Postby Redtexa5 » Tue Dec 16, 2014 3:23 pm

Got to love those words on the radiologist's interpretation of a PET scan. So I guess I am now almost five years out from treatment and six years out from diagnoses and still NED. Who would have thunk it. Oncologist wants another Colonoscopy, my fourth since end of treatment, I guess she just can't get over the fact that I am alive. Well no real guess she thinks I am a miracle she keeps introducing me to her baby docs as her "Bona Fide Modern Medical Miracle" not the type of fame I recommend, but better than an Obit in the local paper any day of the week. Only complaint I have is she still won't cut me lose to once a year. Oh well, the woman did save my life I can't really complain.

I keep having the line from a Joe Ely song go through my head, " The road goes on forever, but the party never ends.", but damn does it have some wild twists, curves and switchbacks on it. And while the place the road has led was not where I was looking to go its not a bad place to end up. I hope I can give this to all the folks who are starting their journey through treatment. You have to keep in mind that none of us was born with a guaranty that our lives would be good, comfortable, or safe, but when things go wrong sometimes you just have to deal with RIGHT NOW and not worry about what the end of the journey is going to be since if you don't get through right now there will be no arrival anywhere.

Damn not putting that as clear as I would like, but it is as clear as I can make it right now.

Hope everyone is warm and safe.
Start of symptoms 9/08
Dx Stage IIIc/IV CC 2/09
T4bNxM0
Colostomy 2/09
Radiation/5FU 3/09-5/09
FOLFOX 6 6/09-8/09
9/09 Tumor removed Colostomy reversed
10/09-1/10 FOLFOX 6
3/10-2/15 NED
2/14 Colonoscopy NED
2/15 Colonoscopy NED
6/15 PET/CT NED
2/17 7 years NED

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: No hypermetabolic lesions identified to suggest metastat

Postby lpas » Tue Dec 16, 2014 3:31 pm

Wow, that's fantastic. Congratulations and here's to another five (and five on top of that, and on top of that...). Thanks so much for sharing your story!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: No hypermetabolic lesions identified to suggest metastat

Postby DarknessEmbraced » Tue Dec 16, 2014 3:31 pm

Congratulations on still remaining NED! You made perfect sense! It's best to deal with now instead of focusing too far into the future. It's hard to do but definitely worthwhile. :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

pukalania
Posts: 454
Joined: Mon Aug 06, 2012 2:54 am
Location: Honolulu, Seattle

Re: No hypermetabolic lesions identified to suggest metastat

Postby pukalania » Tue Dec 16, 2014 10:42 pm

Thank you for the happy post and so happy to hear from you redtex! :)
wife 34 dx DH stage IV
Feb10 col res
May10 12 x FOLFOX
Aug12 tumor in sig colon,mets in liver
Aug12 Xeliri Ava
Oct12 xel celebrx rad
Feb13 liver/colon res
Sep13 ill reversal, fistula,
Folfiri SBRT,ADAPT ava
Apr 15 continued growth liver and lungs

Outdoorsy
Posts: 20
Joined: Wed Apr 09, 2014 9:29 am

Re: No hypermetabolic lesions identified to suggest metastat

Postby Outdoorsy » Thu Dec 18, 2014 10:10 am

Contrats of 5 years and heres to wishing for many, many more! I would like to point out that the song line you referenced, unless it's been redone is Robert Earl Keen. One of our favorites!
Wife diagnosed stage IV Aug 11, Colon Resection Aug 11, 4 rounds FOLFOX, Liver Resection Dec 11, Finished FOLFOX, Currently NED

Redtexa5
Posts: 181
Joined: Thu Aug 02, 2012 11:41 pm
Location: Austin, Texas

Re: No hypermetabolic lesions identified to suggest metastat

Postby Redtexa5 » Thu Dec 18, 2014 12:24 pm

Yes, the song was written by Robert Earl Keen, but Joe Ely released it in 1992 on his "Love and Danger" album. I think old Robert Earl Keen was broke, and at the time Joe Ely was a much bigger deal around town than he was so a deal was cut and Robert's bar tab got paid.

Damn I feel old that was over twenty years ago.
Start of symptoms 9/08
Dx Stage IIIc/IV CC 2/09
T4bNxM0
Colostomy 2/09
Radiation/5FU 3/09-5/09
FOLFOX 6 6/09-8/09
9/09 Tumor removed Colostomy reversed
10/09-1/10 FOLFOX 6
3/10-2/15 NED
2/14 Colonoscopy NED
2/15 Colonoscopy NED
6/15 PET/CT NED
2/17 7 years NED

User avatar
NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: No hypermetabolic lesions identified to suggest metastat

Postby NZJay » Thu Dec 18, 2014 4:55 pm

Congratulations to you, my fellow T4B friend. Sounds to me like you are cured... not sure if you like that label or not, but I say roll with it.

Best of luck for the colonoscopy and I hope you have an awesome holiday season. You have received your biggest present early.

I have my 1 year scan (actually 14 month) impending on the 16th January so I hope to have a late present.

Best wishes
Jay
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: No hypermetabolic lesions identified to suggest metastat

Postby justin case » Thu Dec 18, 2014 9:47 pm

Redtexa5 wrote:Got to love those words on the radiologist's interpretation of a PET scan. So I guess I am now almost five years out from treatment and six years out from diagnoses and still NED. Who would have thunk it. Oncologist wants another Colonoscopy, my fourth since end of treatment, I guess she just can't get over the fact that I am alive. Well no real guess she thinks I am a miracle she keeps introducing me to her baby docs as her "Bona Fide Modern Medical Miracle" not the type of fame I recommend, but better than an Obit in the local paper any day of the week. Only complaint I have is she still won't cut me lose to once a year. Oh well, the woman did save my life I can't really complain.

I keep having the line from a Joe Ely song go through my head, " The road goes on forever, but the party never ends.", but damn does it have some wild twists, curves and switchbacks on it. And while the place the road has led was not where I was looking to go its not a bad place to end up. I hope I can give this to all the folks who are starting their journey through treatment. You have to keep in mind that none of us was born with a guaranty that our lives would be good, comfortable, or safe, but when things go wrong sometimes you just have to deal with RIGHT NOW and not worry about what the end of the journey is going to be since if you don't get through right now there will be no arrival anywhere.

Damn not putting that as clear as I would like, but it is as clear as I can make it right now.

Hope everyone is warm and safe.

Joe Ely, heck, at your stage of the game, I might go on over to the hill country for Xmas. Perhaps Wimberley, for the sights , and catch a little Music say in New Braunfels, or Gruene Hall . ( and of course a brew or two)
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Redtexa5
Posts: 181
Joined: Thu Aug 02, 2012 11:41 pm
Location: Austin, Texas

Re: No hypermetabolic lesions identified to suggest metastat

Postby Redtexa5 » Fri Dec 19, 2014 12:39 am

I was checking to see if Billy Joe Shaver was playing at my favorite Hill Country Dive bar but he is down in the Houston area until after the first of the year and then out of state. And while Willie is playing here in town on the 30th and 31st, I don't really like the venue. To many damn foreigners, read Yankees and Californians, there and I am just not in the mood to deal with it. If you weren't born in Texas or been here since Ronald Regan was president all you are going to do is get on my nerves these days. Nothing personal I am just feeling kind of old and grouchy. I want an old dive bar hidden back in the Cedars in the Hill Country and somebody making some noise with the right attitude on stage. Its still out there I just need to call some folks and remind them I am still alive and get up to date on what is going on.

Jay while I would like to say I am cured I am going to defer to my Onc on that, and the best I have got from her is "Well, we can talk about that eventually." And as I said in an earlier post the woman has kept me alive this long so if aint broke I am not going to fix it. Sucks but what can you do? And by one year scans I hope you mean a Colonoscopy, they should have been giving you CT scans etc all along. As I have had reason to check into the standard of care, at least in the US, is a colonoscopy after one year post resection and then two years after that if all is clear then five years after that if everything is clear. Now that is for "Normal" colon cancer patients as you and I have discussed we are on the razor's edge of being stage IV, and as such we probably should be checked more often. To put it in perspective, the upcoming colonoscopy I am having is number four since my resection. That maybe a bit excessive, but we don't really fit any of the normal parameters so better over kill than under kill in my opinion.
Start of symptoms 9/08
Dx Stage IIIc/IV CC 2/09
T4bNxM0
Colostomy 2/09
Radiation/5FU 3/09-5/09
FOLFOX 6 6/09-8/09
9/09 Tumor removed Colostomy reversed
10/09-1/10 FOLFOX 6
3/10-2/15 NED
2/14 Colonoscopy NED
2/15 Colonoscopy NED
6/15 PET/CT NED
2/17 7 years NED

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: No hypermetabolic lesions identified to suggest metastat

Postby justin case » Fri Dec 19, 2014 6:41 pm

Redtexa5 wrote:I was checking to see if Billy Joe Shaver was playing at my favorite Hill Country Dive bar but he is down in the Houston area until after the first of the year and then out of state. And while Willie is playing here in town on the 30th and 31st, I don't really like the venue. To many damn foreigners, read Yankees and Californians, there and I am just not in the mood to deal with it. If you weren't born in Texas or been here since Ronald Regan was president all you are going to do is get on my nerves these days. Nothing personal I am just feeling kind of old and grouchy. I want an old dive bar hidden back in the Cedars in the Hill Country and somebody making some noise with the right attitude on stage. Its still out there I just need to call some folks and remind them I am still alive and get up to date on what is going on.

Jay while I would like to say I am cured I am going to defer to my Onc on that, and the best I have got from her is "Well, we can talk about that eventually." And as I said in an earlier post the woman has kept me alive this long so if aint broke I am not going to fix it. Sucks but what can you do? And by one year scans I hope you mean a Colonoscopy, they should have been giving you CT scans etc all along. As I have had reason to check into the standard of care, at least in the US, is a colonoscopy after one year post resection and then two years after that if all is clear then five years after that if everything is clear. Now that is for "Normal" colon cancer patients as you and I have discussed we are on the razor's edge of being stage IV, and as such we probably should be checked more often. To put it in perspective, the upcoming colonoscopy I am having is number four since my resection. That maybe a bit excessive, but we don't really fit any of the normal parameters so better over kill than under kill in my opinion.

I love some of the little dives around here in Katy. There's Mo's place, and features a lot of old and new Texas talent, ( Was dancing with Clint Blacks mother there 20 years ago). Willie used to do New Years in the old Astrodome, and it was quite awesome when he brought Waylon Jennings with him. Of course that was when Lukenbach only had 19 inhabitants. I almost don't qualify with your Texas heritage thing, Butt I have been here near Houston, going on 40 years :roll:
I'm sure if you love the hill country, you are familiar with Shake Russell. I left Kansas City, about the same time he did 8)
I always have an ugly air about me in a bar, people leave me alone. ( No it's not the internal rumblings) I go for a few beers, just to get out of the house nowadays. Sometimes James Earl, plays at the racetrack!
Pleasant thoughts ( Have a damn good Texas Christmas),
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012


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