scan at MDA tomorrow... updated

Please feel free to read, share your thoughts, your stories and connect with others!
skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: scan at MDA tomorrow... updated

Postby skypup » Fri Jan 23, 2015 10:34 pm

Well... it could have been better, it could have been worse...

Results: most mets are stable; one has grown a small but significant chunk; unfortunately, there is a new one that has grown pretty fast in four months, the most worrisome met I've had and the first new one in quite a while.

Onc talk: he doesn't believe metronomic chemo or ADAPT is going to be of help in a case as advanced as mine. We settled on an Rx for celecoxib (I have sore hips from the radiation) and a ⅔-sized dosage of irinotecan (to hopefully minimize side effects without losing efficacy). We'll scan again in 3 months to see how it goes. He doesn't think 5-FU does much good and so suggested we leave it out since I don't want to carry the bag anymore. I am going to talk to my local onc about taking Xeloda at reduced dosage.

I feel like my days of lengthy chemo breaks are over. Not sure how I feel. Took herbal meds. :twisted:

Kenny mentioned on another thread that after seeing six oncs that he thinks all oncs are probably all hardwired together. I'm pretty sure I agree. I am grateful for all my docs and I really respect and like my current oncs, but taking chances is not in the oncological black bag. I understand, but am a tad frustrated. Mostly I understand... and will manage to get what I want by a bit of dissembling (if that's what I need to do.)

Thank you, my friends, for your support. Hugs to all!

p.s. the Indian food was fantastic!
Last edited by skypup on Fri Jan 23, 2015 11:09 pm, edited 1 time in total.

User avatar
exaussie
Posts: 618
Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
Contact:

Re: scan at MDA tomorrow... updated

Postby exaussie » Fri Jan 23, 2015 10:50 pm

So the battle is a little intense but you haven't lost the war. Take pleasure when you can ie Indian food YUM and you made need more food after herbal meds...lol
Sleep well friend...
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

DarknessEmbraced
Posts: 3554
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: scan at MDA tomorrow... updated

Postby DarknessEmbraced » Fri Jan 23, 2015 10:59 pm

I'm sorry to hear that it wasn't better news! I'm glad you enjoyed the Indian food!
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! :)

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: scan at MDA tomorrow... updated

Postby KWT » Fri Jan 23, 2015 11:26 pm

sorry you didn't get a little better news, it's no fun finding out we've got a new visitor setting up shop. I hope the new plan keeps you in the race for a long time. two things I've learned lately,one is I'm going to have to redefine the term "good news"or Get used to being disappointed. And a good onc is one that will go along with something YOU want even if they don't agree.

Thank goodness for herbal remedies. :D

annalexandria
Posts: 682
Joined: Wed Sep 28, 2011 11:46 am
Location: Seattle, WA

Re: scan at MDA tomorrow... updated

Postby annalexandria » Fri Jan 23, 2015 11:46 pm

I'm glad you had your herbal remedies, skypup, and wish the results had been more positive.
Hugs~AA
Mom, librarian
Dx age 43, Sept. '09, Stage IV Carcinosarcoma of the colon
5 surgeries, 2009-2011:
colon/sm. bowel res., node removal, peritoneum, hysterectomy
FOLFOX/Avastin Feb.'10-Aug '10
Carbo-Taxol Dec. '10-Feb. 2011
NED since Dec. 2011.

User avatar
CRguy
Posts: 10270
Joined: Sun Feb 10, 2008 6:00 pm

Re: scan at MDA tomorrow... updated

Postby CRguy » Sat Jan 24, 2015 12:49 am

Sounds like a " don't retreat, gather the troops, reload and set a plan " time.
Do what ya' gotta do to keep fightin' the good fight.

Harmony
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
Voxx66
Posts: 1844
Joined: Wed Jul 24, 2013 10:22 pm
Facebook Username: Michael Void Ward

Re: scan at MDA tomorrow... updated

Postby Voxx66 » Sat Jan 24, 2015 2:21 am

It isn't what I was hoping to hear but it sounds like you are still in the game. I did the full Folfiri dose btw and pretty much wishing I hadn't. Your plan sounds like a good one.
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

User avatar
singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: scan at MDA tomorrow... updated

Postby singingholly » Sat Jan 24, 2015 3:09 am

Is it possible for some of these mets, new or old, to add local procedures to reduce the disease burden? For example, while on chemo sbrt here and rfa there...?
I believe it's always worth it when possible, even if I know not everyone agree on this...
Olivia
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

User avatar
pollo65
Posts: 1564
Joined: Thu May 20, 2010 3:11 pm
Facebook Username: pollo2
Location: central valley, calif

Re: scan at MDA tomorrow... updated

Postby pollo65 » Sat Jan 24, 2015 11:13 am

Skypup,
I know we don't always get the results that we want but at this stage of our game I think we pretty much get what we expect. Sorry your scan wasn't clear but mostly stable keeps you in the game. I am doing rso(rick Simpson oil) which is no picnic either but at least I feel like I am doing something of course my onc doesn't approve but I feel like this far out it is my life and I am gonna do what I want. I know you have caught your breath by now and are thinking about your new plan... I kinda think that's pretty much the way it is.
Wishing you nothing but great luck with the new plan.
Pollo 65
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
Iri+avastin
chemo break

lauragb
Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: scan at MDA tomorrow... updated

Postby lauragb » Sat Jan 24, 2015 11:47 am

Sending thoughts of a successful new plan. Sorry it wasn't all stable.

Laura
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: scan at MDA tomorrow... updated

Postby skypup » Sat Jan 24, 2015 11:57 am

Voxx, I had wondered which direction you had gone with the chemo. Full-strength FOLFIRI sucks, for sure, but I hope it is as effective for you as it has been for me. I've gotten a couple of years of going on and off it for a combined pretty decent QOL.

Pollo, you put it really well. Yea, at this stage of the game we have been run through the mill a few times, know what's coming, and it's about how we play the hand we've been dealt--on our terms, as much as possible.

This morning it has settled in that my years of being able to take breaks are over, that a page has turned and it is a true "chemo-for-life" now. I never thought I'd say that. There was a time when I said I'd never do it. Ha. But I'll try to eek out all the QOL I can, hence my pushing to take smaller doses.

I just look at my nearly blind not-a-pup anymore buddy and hope I live just a day longer than her. That's the master plan. :wink:

bitchslapped
Posts: 1534
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: scan at MDA tomorrow... updated

Postby bitchslapped » Sat Jan 24, 2015 1:13 pm

Skypup, I hope your compromise knocks this new met on its can, & yes, our furry little friends bring so much...they never disappoint.

Best Wishes
Bitchslapped
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

User avatar
Voxx66
Posts: 1844
Joined: Wed Jul 24, 2013 10:22 pm
Facebook Username: Michael Void Ward

Re: scan at MDA tomorrow... updated

Postby Voxx66 » Sat Jan 24, 2015 1:26 pm

I refused the biologic but looking at the CEA rise I wanted to be aggressive. I am now probably going to have it dialed back.
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

orcasres
Posts: 836
Joined: Mon Jul 01, 2013 10:23 pm
Location: Orcas Island, WA

Re: scan at MDA tomorrow... updated

Postby orcasres » Sat Jan 24, 2015 4:57 pm

Sorry the news was not better, but hopefully the new treatment plans keep that QOL coming. A shout out to your pup from our 13 and 2 year old pups (and the cat since he thinks he's a dog occasionally also). Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

Faith42
Posts: 31
Joined: Mon Sep 01, 2014 4:37 am
Location: New Mexico

Re: scan at MDA tomorrow... updated

Postby Faith42 » Sun Jan 25, 2015 8:28 am

Well Skypuppy, it has been a while since I got on here. Everyone in the family had the swine flu. What a season. I go back to MDA in 2 weeks. Already all stressed out, but glad you are getting your answers. Just wanted to tell you since we never got to talk that I am taking vitamin c and alpha Lipoic acid lipospmally. Supposedly, you can get an IV dose so much cheaper. I just tested my CEA so we'll see how that comes out. Not doctor approved, but I am listening to my intuition. Also read, radical remission. That book was uplifting for a change. Message me if you want to know more. Glad you are limiting the chemo so that you can enjoy life! You are always a source of inspiration on here. If you ever find yourself back in SF, they have an awesome new Indian restaurant. Would love to meet up with you. Good luck. Blessings.
Mom 42 at Dx
Child 11 yo
Dx 1/12 Stage IIIT N2b. 11/57 nodes
Chemo 3/12
Dx 8/14 Stage IV to lung
10/14 2 lung mets surgically removed. 2 VATS left and right
Chemo 4/15
Rising CEA and met to right lobe of liver 1 cm. surgery in 6/15
Rising CEA and cryoabeltion 10 mm on left lung in 12/16
Rising CEA and met to liver. Surgery 10/17
Cryoabeltion 12/17
NED 2/14/18
Warrior and Fighter


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot], krs029, NHMike and 6 guests