It is what it is

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trbiggins
Posts: 163
Joined: Mon Dec 09, 2013 7:20 pm
Facebook Username: Richard Biggins
Location: North Carolina

It is what it is

Postby trbiggins » Thu Jul 09, 2015 3:34 pm

Hello folks. Been lurking lately and not posting. Here's my update if anyone is wondering.

My CEA continues to rise. It was in the 330s yesterday. Apparently my mets are still growing despite TACE, FUDR, and Folfiri. Dr. Kemeny is bringing me in in two weeks for a scan to be sure this is the case, but inside I know what's happening. My CEA has always been a good indicator for me. We are going to try Sir spheres if the scans show progression. I don't know what to think or how to feel. Kinda numb really. I worry more about my wife and daughters than myself. I know that when I go they will be left to pick up the pieces. Its funny because I still don't look or feel sick. No one would know I had cancer if I didn't tell them. I am not giving up yet, as I am not certain that all my options are over. But I am starting to think more about the end than I usually do. I went and talked to the guy today that I want to do my funeral (among other things, he is my pastor). I know everyone doesn't agree with me on religious thoughts or God, but my faith remains strong. I believe God has a plan for me and is using me daily. I've had many tell me that I have strengthened them as they have watch me fight. Not that I have been trying, but if I can lift anyone up through my struggles I will gladly take that. If you think I'm crazy for keeping faith in a God that might sit by and watch me pass away in my 40s, that's your right, but He is where I find my peace though this craziness. I am resolute in my faith and hopefully that will be the case until I take my last breath. Prayers for me are always welcome, but pray for my family also. They didn't choose this and I hate that I am putting them though this crap. I am starting to wonder about the effectiveness of continuing chemo. Every two weeks is rough, especially if it's not being effective. Why bother? I could see myself stopping it and enjoying what time I have left. This thought has never crossed my mind but today I am really considering it. We'll see. I should be able to make more informed decisions once I try this last option. Anyway, hope everyone is doing well.

Richard
42 male at DX
Husband, father (girls 13 and 16)
Stage IV mets to liver Oct 2013
Xelox Dec 13-Apr 14
Avastin, Xeloda Apr-July 2014
Vectibix July
Vectibix/Irinotecan Dec 2014
Colon resect/ HAI pump Jan 2015
Folfiri/Vectibix/FUDR ongoing

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: It is what it is

Postby canadiandaughter » Thu Jul 09, 2015 3:43 pm

Sending prayers to you and your family! Hopefully Dr K will have a plan that works for you after yous scans.
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

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

Re: It is what it is

Postby KWT » Thu Jul 09, 2015 3:53 pm

That's rough news Richard, maybe it's clinical trial time?

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: It is what it is

Postby cathy123 » Thu Jul 09, 2015 4:13 pm

Sorry to hear this news - I hope the next treatment is more successful. It sounds like you are facing this awful disease with strength and grace - I am sending prayers and hope your faith continues to be a source of comfort.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

trbiggins
Posts: 163
Joined: Mon Dec 09, 2013 7:20 pm
Facebook Username: Richard Biggins
Location: North Carolina

Re: It is what it is

Postby trbiggins » Thu Jul 09, 2015 4:14 pm

Kenny
I think trials are the plan if the spheres fail.

Richard
42 male at DX
Husband, father (girls 13 and 16)
Stage IV mets to liver Oct 2013
Xelox Dec 13-Apr 14
Avastin, Xeloda Apr-July 2014
Vectibix July
Vectibix/Irinotecan Dec 2014
Colon resect/ HAI pump Jan 2015
Folfiri/Vectibix/FUDR ongoing

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

Re: It is what it is

Postby KWT » Thu Jul 09, 2015 4:24 pm

trbiggins wrote:Kenny
I think trials are the plan if the spheres fail.

Richard

Best of luck with that, there's some interesting ones out there.

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: It is what it is

Postby juliej » Thu Jul 09, 2015 4:48 pm

Richard, sending strength and prayers to you and your family. You're not out of options yet, but I can understand your feelings. I had some pretty dark days during my treatment, especially when I saw others pass me by and go on to resection while I was told that was impossible for a lung/liver stage IV patient. Eventually it did work out for me, but living with uncertainty has to be one the hardest parts of dealing with cancer. I'm sure Dr. K will never stop searching for a way to destroy your tumors. Stay well and go from strength to strength, my friend. God's strength or the strength of friends. We're here for you, now and always.

Hugs to you,
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

hart2hart
Posts: 796
Joined: Wed Nov 23, 2011 10:46 pm

Re: It is what it is

Postby hart2hart » Thu Jul 09, 2015 6:40 pm

Dear Richard --

We also had some very dark days as well. Please try to be positive (Damn, I know it's very hard)
and get the scan in two weeks and we're sure Dr K has a plan. You are at the best place for treatment. (JMHO)

I'm sending you a PM now.


Lots of hugs,


Julie and Pete
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2020
Hai Pump/Port Removed - 1/2020

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: It is what it is

Postby midlifemom » Thu Jul 09, 2015 6:57 pm

Richard,
Thanks for posting an update. I was really hoping that TACE was going to be your answer. I fully understand about not continuing chemo if it isn't working. I've had the same thought myself. But, I do believe (have to believe) that the chemo is at least slowing the progression.
I'm glad you have your faith to help you. I hope your family also has something to give them strength.
Sending strong thoughts and prayers to you and your family.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: It is what it is

Postby midlifemom » Thu Jul 09, 2015 7:06 pm

They didn't choose this and I hate that I am putting them though this crap.

Another thought, I doubt your family is feeling that you are putting them through crap.
I also used to apologize to my husband for putting him through all this crap and it took some doing, butt he finally did convince me that it wasn't my fault, so shouldn't apologize and that he and our son were doing fine. I now try to see that while this stupid disease has changed our life, it isn't crap. My son has become more mature and independent and my relationship with my husband has improved.
I hope you can also see that while things may be different and not what you want or planned for, that there is still some good.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

User avatar
chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: It is what it is

Postby chrissyrice » Thu Jul 09, 2015 8:21 pm

Allow yourself some time in the dark .... just don't stay there too long.

Thinking of your family is so real and necessary. Have you talked to them about how you feel?

Opening the door to discuss is okay and gives both you and your family time to share the stuff that needs to be said.

It's all in how you approach the subject as well by letting them know it's what you want and helps them down the road to be able to fulfill your wishes. Keeping it light not too grim because you still have options.

My MIL did this for us and it sure meant so much to us when she passed away. We found some beautiful notes she left among her personal items and we cherish reading them when we found them weeks and months after she left. Very sweet.

Everyone has there own style of how they choose to leave when it's time to let go.

Acknowledging your feelings is living ... just where you are right now.

Big hugs, Richard. Hoping for your peace and comfort as you move ahead in your treatment and may your scans bring more answers.

Chrissy
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

Stanfordmom
Posts: 612
Joined: Wed May 14, 2014 1:32 am

Re: It is what it is

Postby Stanfordmom » Thu Jul 09, 2015 8:26 pm

Richard,

So sorry to hear your news about CEA. Sometimes when cancer cells are dying, they release a lot of CEA. So maybe TACE is still working, please at least wait till your scan two weeks later to see if it is working.

It was great meeting and talking to you and your beautiful wife. She seems so kind and supportive. I am sure she didnot think you put her and your kids through this crap. having cancer is no your fault!! I am in tears when I am writing this as I know exactly how you feel. I still feel guilty of putting my elderly parents through this when they should be enjoying their retirement years :(

Sending you prayers ad strengths.

Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

trbiggins
Posts: 163
Joined: Mon Dec 09, 2013 7:20 pm
Facebook Username: Richard Biggins
Location: North Carolina

Re: It is what it is

Postby trbiggins » Thu Jul 09, 2015 8:41 pm

Thanks for the replies everyone. I like talking to people who "get" what I am going through. I know my family doesn't blame me for this mess, but I can't help but feel somewhat responsible. They are so good to me. I just want to be able to be around to protect them. I feel like that's my job. I feel a little better after talking to a couple of friends today. I am not giving up! I will fight until they refuse to give me anything else. But the thought does creep in from time to time that I may just be spinning my wheels. I guess that will continue to be a daily battle I have with myself. For the last little while, I have been keeping to myself emotionally. That changes today. I am going to try to spend as much quality time with my peeps as I can. I figure I should be the best dad and husband possible whether I have 4 months or 40 years left on this Earth. Again, thanks for your ears and your compassion. It means a lot.

Richard
42 male at DX
Husband, father (girls 13 and 16)
Stage IV mets to liver Oct 2013
Xelox Dec 13-Apr 14
Avastin, Xeloda Apr-July 2014
Vectibix July
Vectibix/Irinotecan Dec 2014
Colon resect/ HAI pump Jan 2015
Folfiri/Vectibix/FUDR ongoing

Danieljt
Posts: 309
Joined: Sun Aug 10, 2014 10:32 pm

Re: It is what it is

Postby Danieljt » Thu Jul 09, 2015 8:53 pm

Dear Richard, I'm reading your post and thinking you have got to have faith and carry on. I'm Also sitting here thinking I want to take all my pills and be done with it. Don't know how much more I can take. What a hyprocrate I am.

Jackie
70 male stage 3b cc
Dx 5/9/14
Resection 7/1/14
dx 9/14
65 yr wife DLCl
Sct 3/21/19 Ned last 8 mo.

Danieljt
Posts: 309
Joined: Sun Aug 10, 2014 10:32 pm

Re: It is what it is

Postby Danieljt » Thu Jul 09, 2015 9:52 pm

Sorry
70 male stage 3b cc
Dx 5/9/14
Resection 7/1/14
dx 9/14
65 yr wife DLCl
Sct 3/21/19 Ned last 8 mo.


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