joining a trial-emotional roller coaster

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mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

joining a trial-emotional roller coaster

Postby mike218 » Tue Oct 10, 2017 1:23 pm

I'm 4 years since dx. Most recent surgery in NY (april) for removal of residual colon tumor and liver pump-did not go as planned they found 3 peritoneal spots -in June developed hip pain- though it was due to positioning-turns out its bone mets (who gets bone mets from colon cancer???) --anyway

Oncologist thought we should go for a trial-seems belief is to attack what we can now vs waiting until we are desperate (basically my thought was he felt all was lost) so
got selected but suddenly depressed at thought of no chemo (until or if trial fails) and using new MD's

on top of that now an issue with getting into trial due to increased blood pressure (still on Avastin so likely main cause) though I am prob the only overweight person with cancer in this world (I thought 2 colon resections and chemo would surely end the battle with my weight)
this constant yo-yo of change -no change is wearing me down-going for repeat blood pressure in AM--finger crossed and prayers

mike
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

User avatar
WriterGirl1969
Posts: 455
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: joining a trial-emotional roller coaster

Postby WriterGirl1969 » Tue Oct 10, 2017 8:07 pm

mike218 wrote:I'm 4 years since dx. Most recent surgery in NY (april) for removal of residual colon tumor and liver pump-did not go as planned they found 3 peritoneal spots -in June developed hip pain- though it was due to positioning-turns out its bone mets (who gets bone mets from colon cancer???) --anyway

Oncologist thought we should go for a trial-seems belief is to attack what we can now vs waiting until we are desperate (basically my thought was he felt all was lost) so
got selected but suddenly depressed at thought of no chemo (until or if trial fails) and using new MD's

on top of that now an issue with getting into trial due to increased blood pressure (still on Avastin so likely main cause) though I am prob the only overweight person with cancer in this world (I thought 2 colon resections and chemo would surely end the battle with my weight)
this constant yo-yo of change -no change is wearing me down-going for repeat blood pressure in AM--finger crossed and prayers

mike


Mike - so sorry to hear you're going through this. For the record, I'm the poster-child for overweight person with cancer, so don't think you're alone there. ;-) I understand how your mind would go there, but then there are SO many recent advancements that are really making a difference, if your doctor is possibly going to help get you on a short-list to get new/trial treatment that could help, why not check it out. To hell with why he offered (pardon my french). It's so hard not to let this disease get you down, but don't lose hope. There are so many stories of hope. Try not to let it get into your head. Also, make sure they take your blood pressure at least 3 times. For me, since diagnosis, the first 2 times are always high just due to nerves, even if you feel calm, cool and collected. I'll be saying some prayers for you tonight. Let us know how it goes.

Smiles, hugs and prayers,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear
NED at 1 year
“If I can help somebody as I walk along, then my living shall not be in vain.”

mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

Re: joining a trial-emotional roller coaster

Postby mike218 » Wed Oct 11, 2017 8:42 am

Thank you--bp still up this AM so from what I can tell no go with this trial--told them thank you for their effort (nicely) and decided that what is meant to be is meant to be-
will see oncologist Monday for better meds to control bp..just so we don't add stroke to the list of illnesses

at least now I know I want to be in a trial

mike
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

User avatar
WriterGirl1969
Posts: 455
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: joining a trial-emotional roller coaster

Postby WriterGirl1969 » Wed Oct 11, 2017 7:30 pm

mike218 wrote:Thank you--bp still up this AM so from what I can tell no go with this trial--told them thank you for their effort (nicely) and decided that what is meant to be is meant to be-
will see oncologist Monday for better meds to control bp..just so we don't add stroke to the list of illnesses

at least now I know I want to be in a trial

mike


Sorry to hear it was still up, glad to hear that now you'll be getting some meds to control it. Hopefully going through this at least has you on a path that will get you where you need to be for something else. I'll definitely keep prayers coming.

Hugs,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear
NED at 1 year
“If I can help somebody as I walk along, then my living shall not be in vain.”

benben
Posts: 229
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: joining a trial-emotional roller coaster

Postby benben » Wed Oct 11, 2017 9:05 pm

I hope you have excellent response to the trial!

Best wishes to you on your tough battle/Journey.

Warrior ON!
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

Re: joining a trial-emotional roller coaster

Postby mike218 » Fri Oct 13, 2017 9:16 am

thank you -proceeding with trial but need to get BP down, no chemo x 28 days , scary...
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

DarknessEmbraced
Posts: 2849
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: joining a trial-emotional roller coaster

Postby DarknessEmbraced » Sat Oct 14, 2017 5:46 pm

I hope your BP goes down and that the trial goes well!*hugs*
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


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