Finally saw my doctor again today. This one actually went well. It seems they had some sort of oncology dept. meeting and my case was one discussed. They have some new ideas and are FINALLY going to do some tests I think they should have done long ago like sending the tumor in for DNA testing. They also drew blood for some sort of liquid biopsy. Lot's of blood ha. I was also told that both tests would be free as there was interest in my case and the liquid one at least is still fairly new. We will see but at least it seems like progress.
Bad news on TAS-102 compassionate use though. Wash U is totally out of the drug and there is apparently a shortage in general. He said he would check but he was afraid we would end up having to wait for general approval.
He also prescribed some mild diuretics for ascites and told me if I ever feel too bad just call and they will set up the paracentesis.
So we will see.
News from Dr appt
News from Dr appt
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri
-
justin case
- Posts: 4269
- Joined: Sun Sep 04, 2011 8:26 am
- Location: Katy, Texas
Re: News from Dr appt
That sounds encouraging, provided there are no dietary restrictions 
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
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012
Re: News from Dr appt
Ha - not that I know of.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri
Re: News from Dr appt
Glad to hear, sounds like the Drs are putting their heads together for you! Sucks about the drug shortage though.
Last edited by MSJC on Tue Jun 23, 2015 10:32 pm, edited 1 time in total.
Mike, 49 y/o at Dx 1/14 stage 3c
low rectal cancer 7 nodes positive
2/14 5 weeks chemo/rad. 5-fu
4/14 Lar gallbladder removed,
temp ileostomy
5/14 8 rds Folfox
10/14 reversal surgery
5/15 clean colonoscopy
6/15 clean ct scan
low rectal cancer 7 nodes positive
2/14 5 weeks chemo/rad. 5-fu
4/14 Lar gallbladder removed,
temp ileostomy
5/14 8 rds Folfox
10/14 reversal surgery
5/15 clean colonoscopy
6/15 clean ct scan
Re: News from Dr appt
Voxx66 wrote: We will see but at least it seems like progress.
He also prescribed some mild diuretics for ascites and told me if I ever feel too bad just call and they will set up the paracentesis.
I agree buddy, if the docs are in conference and getting heads together = A Good Thing !
Don't let the ascites get ahead of you. Docs can play with the meds and doses etc. and as you mentioned, if needed get it drained.
I know some folks may have voiced different opinions about paracentesis ... BUTT ...
you just knew there HAD to be one ... from me at least
Once had a vet patient we saw regularly for paracentesis and/or thoracentesis on about a 3-4 weekly basis for about 2 years.
Holistic practice, owner declined ANY workup, and dog was great until fluid built up.
We drained fluid and off he went for another month, happy as a clam ... well actually an 85 lb Basset
My point : if you need the fluid drained ... Do It !
JMO
Cheers and Harmony bro'
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Re: News from Dr appt
Voxx - sounds like more good news than not - yea! Hope these additional tests will set you on a course for result oriented treatment. Now that you have a diuretic eat what you want - you'll get lots of exercise running to pee - ha. (My hubby takes them - it is a source of amusement at our house).
Val
Val
Age 53 dx 2a CC 0/21 LN Oncotypedx score: 11
Sigmoidectomy 5/8/14
MSS No lymphovasular involvement,
6/14 PET - NED, 12/14 CT NED, 7/15 CT - NED
6/14-12/9/14 Xeloda 8 cycles
2/12/15 incisional hernia repair - Boooo!
Sigmoidectomy 5/8/14
MSS No lymphovasular involvement,
6/14 PET - NED, 12/14 CT NED, 7/15 CT - NED
6/14-12/9/14 Xeloda 8 cycles
2/12/15 incisional hernia repair - Boooo!
Re: News from Dr appt
Yeah CR some of the posts here make me nervous about draining but I'll do it if I have to.
And Valerie - hopefully the peeing won't be too bad. These are mild and he said I should only take them when I feel I need them.
Been reading on the liquid biopsy. Sounds interesting. Has anyone had one done yet? Not sure what info it will show.
And Valerie - hopefully the peeing won't be too bad. These are mild and he said I should only take them when I feel I need them.
Been reading on the liquid biopsy. Sounds interesting. Has anyone had one done yet? Not sure what info it will show.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri
Re: News from Dr appt
Should have also mentioned I was present with my Dad when he had 3 thoracenteses for his mesothelioma ... before we got to surgery.
Done properly, they may still be uncomfortable... BUTT DOable and not painful ..... when needed.
JMO bro'
CR
Done properly, they may still be uncomfortable... BUTT DOable and not painful ..... when needed.
JMO bro'
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far
-
chrissyrice
- Posts: 1171
- Joined: Thu Sep 23, 2010 8:44 am
- Location: Atlanta, Georgia
Re: News from Dr appt
Voxx, some good news and some options.
Don't worry about taking those diuretics ... you are not going to piss your life away
My MIL took them and the best time to take them is during the day ... not at night...then you will piss your sleep away
We had to limit her water/liquid intake a bit but it was also important to keep her potassium levels up by eating potassium rich foods.
I am with CRguy go for the "draino" don't wait too long and suffer or make it worse.
Hanging in there with you, Voxx
Don't worry about taking those diuretics ... you are not going to piss your life away
My MIL took them and the best time to take them is during the day ... not at night...then you will piss your sleep away
We had to limit her water/liquid intake a bit but it was also important to keep her potassium levels up by eating potassium rich foods.
I am with CRguy go for the "draino" don't wait too long and suffer or make it worse.
Hanging in there with you, Voxx
Last edited by chrissyrice on Tue Jun 23, 2015 7:47 pm, edited 1 time in total.
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months
-
justin case
- Posts: 4269
- Joined: Sun Sep 04, 2011 8:26 am
- Location: Katy, Texas
Re: News from Dr appt
Valorie wrote:Voxx - sounds like more good news than not - yea! Hope these additional tests will set you on a course for result oriented treatment. Now that you have a diuretic eat what you want - you'll get lots of exercise running to pee - ha. (My hubby takes them - it is a source of amusement at our house).
Val
Val, who is amused most ? You just gave me my first belly laugh in quite awhile.
Bro nut
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
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012
Re: News from Dr appt
Sounds like a plan to me. And I love that you were the center of attention at their meeting! Do what makes you comfortable & feel better soon. Hope you don't have to wait long for approval. XXOXO, Delinda
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."
-
WifeOfMike
- Posts: 1495
- Joined: Thu Dec 20, 2012 9:53 pm
- Facebook Username: https://www.facebook.com/vbass123
- Location: San Diego, California
Re: News from Dr appt
Voxx,
I'm glad your medical team thinks YOU are as Special, as WE do!
Pretty remarkable if you think about it.... you get cutting edge treatment & Lots of attention as they decipher the news.
The rest of the post about running like the wind to pee- only WE can laugh about things like that
Also, pretty remarkable
Wishing you the best, buddy!
Vicki
I'm glad your medical team thinks YOU are as Special, as WE do!
Pretty remarkable if you think about it.... you get cutting edge treatment & Lots of attention as they decipher the news.
The rest of the post about running like the wind to pee- only WE can laugh about things like that
Also, pretty remarkable
Wishing you the best, buddy!
Vicki
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS
Re: News from Dr appt
Bro Nut - Glad to oblige on the laugh.
Voxx - if you will, post what you find out about the liquid biopsy - it does sound interesting.
Val
Voxx - if you will, post what you find out about the liquid biopsy - it does sound interesting.
Val
Age 53 dx 2a CC 0/21 LN Oncotypedx score: 11
Sigmoidectomy 5/8/14
MSS No lymphovasular involvement,
6/14 PET - NED, 12/14 CT NED, 7/15 CT - NED
6/14-12/9/14 Xeloda 8 cycles
2/12/15 incisional hernia repair - Boooo!
Sigmoidectomy 5/8/14
MSS No lymphovasular involvement,
6/14 PET - NED, 12/14 CT NED, 7/15 CT - NED
6/14-12/9/14 Xeloda 8 cycles
2/12/15 incisional hernia repair - Boooo!
Re: News from Dr appt
I haven't found much on liquid biopsies online but here is some info. I think I am very glad I won't be paying for this.
http://www.techtimes.com/articles/52136 ... cancer.htm
http://www.techtimes.com/articles/52136 ... cancer.htm
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri
Re: News from Dr appt
Thanks for posting the link Voxx. It will be interesting to see what comes from this test for you.
Val
Val
Age 53 dx 2a CC 0/21 LN Oncotypedx score: 11
Sigmoidectomy 5/8/14
MSS No lymphovasular involvement,
6/14 PET - NED, 12/14 CT NED, 7/15 CT - NED
6/14-12/9/14 Xeloda 8 cycles
2/12/15 incisional hernia repair - Boooo!
Sigmoidectomy 5/8/14
MSS No lymphovasular involvement,
6/14 PET - NED, 12/14 CT NED, 7/15 CT - NED
6/14-12/9/14 Xeloda 8 cycles
2/12/15 incisional hernia repair - Boooo!
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