Husband broke down last night

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mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Husband broke down last night

Postby mpbser » Sun Aug 20, 2017 6:34 am

Today we go to Boston for his 2nd colon surgery and his liver ablation. Last night, he broke down saying that he doesn't want to do ox- and isn't now even sure about doing any chemo. We have a couple of people in our lives who have terminal cancer and appear hopeless so that is affecting husband quite a bit.

He's very annoyed that no oncologist has been able to produce hard data that proves ox- is worth it. He and I spoke about how his oncologist had stated that ox- makes chemo "twice as effective." Well, twice 5% is still only 10% (for example... I am making up these numbers obviously b/c no one has given us any), and that's a difference my husband wants to consider.

I suggested that he make an appointment with his local oncologist for after surgery, maybe in a couple weeks, to discuss how when we asked this question of her, she produced a packet of studies but none of them actually contained the information we were asking for.

Well, I have to start packing for our travels. I hope everyone is doing well!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Husband broke down last night

Postby NHMike » Sun Aug 20, 2017 8:45 am

I'm sorry that his emotional state is rough right now but at least he won't have to deal with the chemo/oxa decision for a while. I get some comfort from folks on this board that have survived what I've gone through and a lot worse. Maybe it would be helpful if your husband spoke to some long-time survivors. I've often found that you have to dig for specific research on what you're looking for if it's somewhat narrow. That might be something that you or your husband could do after the surgery.

Best wishes on the surgery. Sunday is the best day of the week to go into Boston.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

sdino
Posts: 85
Joined: Tue Mar 28, 2017 5:32 pm

Re: Husband broke down last night

Postby sdino » Sun Aug 20, 2017 9:03 am

Hi mb - Sorry for the turmoil and brain wracking you guys are going thru. I can only talk about my experience. We did FOLFOX+Avastin for 12 rnds. Only got to 8 rounds with OXi-. We seen a decent reduction in colon/lung mets with that cocktail. That being said, Both ONCs (Roswell n Sloan) were very very careful administering the OXi, continually monitoring for neuropathy and any other damages which may occur from it's use. Currently on 5FU (pills)+Avastin and my wife is taking it well so far with min. side effects. Wish you folks the best ! sdino
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: 25+ Bilateral ranging 4mm-5.0cm
MSS, KRAS-G12D; TP53
iTCR TIL Trial NCT03412877 4/19 to 7/19 Off trial, - Sept. 2019 TIL trial NCT01174121
CT Scans: 7/2020 lung met shrinkage 36%, 3 lung mets left, two Liver mets destroyed by TILs
Brain tumor removal 3/2020
CEA:16-11/16; 5 -9/18; 63 -8/19; 1 -1/20; 0.8-5/20

Adam24

Re: Husband broke down last night

Postby Adam24 » Sun Aug 20, 2017 12:01 pm

Oh, sorry to hear this. Wish him speedy recovery

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Husband broke down last night

Postby rp1954 » Sun Aug 20, 2017 12:06 pm

If you want more options, you need to do the blood testing - otherwise you're spinning your wheels in the dark. Ya got nothing for a prognostic choice, nothing to steer by bi- or triweekly, no basis for discussions, and you default into standard oncology or simply flying blind.

A number of options have been tried by forums members with pretty good results if you judge by (in)compatible targets. If you can target and monitor better, then you have a reasonable chance of beating the standard chemo results with fewer side effects. The stats are a matter of accumulating papers, and at this point, you'll probably (have to) make a choice before getting answers to all your questions. We were running over on time when we chose and a number of answers didn't surface until later but we mostly made good choices, better than standard, and the expanded bloodwork enabled us to steer off the rocks, even for de novo situations.

Right now your standard chemo options are Folfox, folfiri or xeloda. Avastin or erbitux depending on several things. There are various papers whose stats suggest that daily oral 5FU + well targeted adjuncts can outperform folfox. Only fools skip the targeting part because you need to recognize and avoid knowable pitfalls to make good selections and maximize the good stats.

We don't fool with local oncs for blood tests, they're stuck in a rut. We've already tapped a lot more expertise and just order them ourselves, spread sheet them, and have them ready for any dr anywhere for consultations.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Re: Husband broke down last night

Postby JJH » Sun Aug 20, 2017 12:55 pm

rp1954 wrote:... We don't fool with local oncs for blood tests; they're stuck in a rut. We've already tapped a lot more expertise and just order them ourselves, spread sheet them, and have them ready for any dr for consultations.

Yes, that's what I do now for monitoring during my followup period. I do my own research and then I order my blood tests myself whenever I want to and I pay for them myself.

I like it better that way. So far there haven't been any problems revealed by any of these tests, but I rest assured in that now I have a stockpile of past bloodtest results and past biomarker results of various kinds that give me peace of mind and that help me feel that I am in control of my surveillance.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

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JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Re: Husband broke down last night

Postby JJH » Sun Aug 20, 2017 1:17 pm

mpbser - For local oncologist, is there any way you could switch to another oncologist? According to your hospital website, there are 2 oncologists there.
The one that you were assigned to is listed online as a Hematology Oncologist. with "Areas of Focus: Women's cancer care: Coagulation"

Maybe the other oncologist on staff would be a better choice. Have you ever tried switching your local oncologist?
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Husband broke down last night

Postby LPL » Sun Aug 20, 2017 3:46 pm

Hi mpbser,

I am taking a brake from Colon Club at the moment but checked in today to see if your DH had had his surgery.
I'm sorry your husband & you have to deal with this - a lot of emotions can surface before a mayor surgery. Having been in your shoes, I remember and understand, even though my DH's case/every case(!) is different. Please know that I will send good vibrations for your DH's upcoming surgery.

I am Very(!) impressed how rp1954 and his wife are taking charge of her treatment. Maybe, I don't know, if DH's tumors had been inoperable, it would have been different and DH would have chosen another treatment? The only thing we (read: I) do is that I (using my own pen) add tests to DH's blood tests. So far no one is protesting... At times I have asked for a test not on the Lab 'paper' and DH's Onc have said: "good idea". They are listening.
To not do the Folfox treatment was not an option DH & I talked about - the trusted surgeon (professor) recommended Folfox to DH and they (incl. Onc etc) work as a team at the hospital.
If your DH react badly to the oxiplatin - they will stop/change it - won't they? Or you can decide 'no more'.
What is it, in trying it, that he is so afraid of?

All the best to you both
/LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: Husband broke down last night

Postby TXLiz » Sun Aug 20, 2017 4:51 pm

It's such a crap (literally and figuratively)process from diagnosis onward. There are millions of questions nobody can answer, truly. I don't think there are absolutes for anything, anyone, anymore.

I hope you and your husband weather his next surgery well.

I research some. I sometimes close my eyes to it all and just have "normal" days where I don't try to figure anything out...don't read any stats, ponder the future, look at med info. Then some days I am consumed by it.

I don't think the article I am going to post is scientific enough for you, but it seems it has some decent information on oxi and its effectiveness. It's def written for people who glance at the surface, I get it.

My neuropathy was pretty bad, but it fades more each day. Although we all have different levels of concern about different aspects of treatment, I can say for myself, I was going to give full recommended chemo a go from the moment I was diagnosed.

Props to those that go above and beyond researching and doing all the extras I don't think I'd ever do. Sometimes I wish I had the gumption to do so. Sometimes I just don't care. I just want to live a little while and be happy and go about my day humming a jaunty tune and smelling the roses.

Anyway, you are still in the thick of it right now, so of course no jauntiness is to be had. I am sorry. It's awful.

Even if it's not super science research that gives you any info you want...I will still post it. It may help someone.

Efficacy of Oxaliplatin in the Treatment of Colorectal Cancer


Review Article | December 01, 2000 | Gastrointestinal Cancer
By Mace L. Rothenberg, MD
ABSTRACT: Colorectal cancer is one of the leading causes of cancer death. The mainstay of chemotherapy in colorectal cancer patients for the past 40 years has been fluorouracil (5-FU). Oxaliplatin (Eloxatin) is a novel platinum compound with promising activity in colorectal cancer. As a single agent, oxaliplatin has produced response rates of 12% to 24% in patients with previously untreated advanced colorectal cancer, and 10% to 11% in patients with relapsed or refractory advanced colorectal cancer. In phase II trials, oxaliplatin combined with 5-FU, with or without leucovorin, was associated with response rates of 60% and higher when used as front-line therapy, and when used in patients with relapsed or refractory advanced colorectal cancer, response rates ranged from 25% to 50%. In the front-line setting, two randomized trials of 5-FU and leucovorin, with or without oxaliplatin, demonstrated that the addition of oxaliplatin significantly increases response rate and time to tumor progression, but not survival, over 5-FU plus leucovorin alone. The reasons for this discrepancy are unclear, and several possibilities are being considered. Additional phase III trials are underway to clarify the contribution of oxaliplatin in the treatment of patients with locally advanced and metastatic colorectal cancer. [ONCOLOGY 14(Suppl 11):9-14, 2000]


http://www.cancernetwork.com/review-art ... tal-cancer

(Full article at link)

Good luck and best wishes.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: Husband broke down last night

Postby Basil » Sun Aug 20, 2017 7:30 pm

Oxi sucks, no doubt. There were times when I didn't think I could take anymore. But it can do wonders. It killed my tumor in three months. I can't blame your husband for whatever decision he makes but my advice is to bitch, complain, get drunk and yell at God. And then go get that oxi infusion.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Husband broke down last night

Postby LeonW » Mon Aug 21, 2017 8:03 am

TXLiz wrote:I don't think there are absolutes for anything, anyone

Basil wrote:Oxi sucks no doubt [ but ] bitch, complain, get drunk and yell at God. And then go get that oxi infusion.

x2

Yeah, me too discovered that the chemo effects got worse when the Oxi was added, but it killed off all my liver mets. On hindsight, the liver resection might not even have been necessary :oops: . But, as there ain't no guarantees (100% correlations) in the cancer game, one can do only look at the odds and opt for treatments that have (somewhat) better outcomes on average, and hope that you're among the lucky ones (against all odds, if necessary).

I did CAPOX. Yes it was difficult; had plenty of effects but not so bad that stopping even entered my mind. There was always room for *one* more cycle (did the 8 x '2-weeks-on' / '1-week-off' cycle each with '1-week-feeling-bad'/ '1-week-feeling-better' / '1-week-holiday').

My advice: Don't fear the chemo yet. Go get that oxi and see how it goes. Don't throw in the towel before knowing how things turn out. Keep a diary to help shape expectations. Bad days are so much easier to take if you know there are better days around the corner.

Best wishes, L
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Husband broke down last night

Postby NHMike » Mon Aug 21, 2017 8:25 am

LeonW wrote:
TXLiz wrote:I don't think there are absolutes for anything, anyone

Basil wrote:Oxi sucks no doubt [ but ] bitch, complain, get drunk and yell at God. And then go get that oxi infusion.

x2

Yeah, me too discovered that the chemo effects got worse when the Oxi was added, but it killed off all my liver mets. On hindsight, the liver resection might not even have been necessary :oops: . But, as there ain't no guarantees (100% correlations) in the cancer game, one can do only look at the odds and opt for treatments that have (somewhat) better outcomes on average, and hope that you're a lucky one (against all odds, if necessary).

I did CAPOX. Yes it was difficult; had plenty of effects but not so bad that stopping even entered my mind. There was always room for *one* more cycle (the eight were over; did the '2-weeks-on' / '1-week-off' cycle caused '1-week-feeling-bad'/ '1-week-feeling-good' / '1-week-holiday' cycle.

My advice: Don't fear the chemo yet. Go get that oxi and see how it goes. Don't throw in the towel before knowing how bad things turn out to be. Keep a diary to help shape expectations. Bad days are so much easier to take if you know there are better days around the corner.

Best wishes, L


You guys are scaring the crap out of me with this talk. But I'm getting used to it. I complained a little about the radiation to the tech this morning and he said that there's tuff that they can give me - lotions, meds, etc. I'm probably not that bad yet - just worried that it gets a lot worse. Worry is a big problem of mine though getting started did help. He said that the end of this week (#4) would be the worst of it. Well, okay. I've gone this far.

It feels like the whole process just keeps ratcheting things up. But there are so many here that have made it through it.

I hope that mpbser chimes in soon with the results of the surgery.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: Husband broke down last night

Postby TXLiz » Mon Aug 21, 2017 9:55 am

LeonW wrote:
TXLiz wrote:I don't think there are absolutes for anything, anyone

Basil wrote:Oxi sucks no doubt [ but ] bitch, complain, get drunk and yell at God. And then go get that oxi infusion.

x2

Yeah, me too discovered that the chemo effects got worse when the Oxi was added, but it killed off all my liver mets. On hindsight, the liver resection might not even have been necessary :oops: . But, as there ain't no guarantees (100% correlations) in the cancer game, one can do only look at the odds and opt for treatments that have (somewhat) better outcomes on average, and hope that you're among the lucky ones (against all odds, if necessary).

I did CAPOX. Yes it was difficult; had plenty of effects but not so bad that stopping even entered my mind. There was always room for *one* more cycle (did the 8 x '2-weeks-on' / '1-week-off' cycle each with '1-week-feeling-bad'/ '1-week-feeling-better' / '1-week-holiday').

My advice: Don't fear the chemo yet. Go get that oxi and see how it goes. Don't throw in the towel before knowing how things turn out. Keep a diary to help shape expectations. Bad days are so much easier to take if you know there are better days around the corner.

Best wishes, L



Great post...

Sorry if I scare anyone with my posts. Truly not my intention.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Husband broke down last night

Postby NHMike » Mon Aug 21, 2017 9:58 am

TXLiz wrote:
LeonW wrote:
TXLiz wrote:I don't think there are absolutes for anything, anyone

Basil wrote:Oxi sucks no doubt [ but ] bitch, complain, get drunk and yell at God. And then go get that oxi infusion.

x2

Yeah, me too discovered that the chemo effects got worse when the Oxi was added, but it killed off all my liver mets. On hindsight, the liver resection might not even have been necessary :oops: . But, as there ain't no guarantees (100% correlations) in the cancer game, one can do only look at the odds and opt for treatments that have (somewhat) better outcomes on average, and hope that you're among the lucky ones (against all odds, if necessary).

I did CAPOX. Yes it was difficult; had plenty of effects but not so bad that stopping even entered my mind. There was always room for *one* more cycle (did the 8 x '2-weeks-on' / '1-week-off' cycle each with '1-week-feeling-bad'/ '1-week-feeling-better' / '1-week-holiday').

My advice: Don't fear the chemo yet. Go get that oxi and see how it goes. Don't throw in the towel before knowing how things turn out. Keep a diary to help shape expectations. Bad days are so much easier to take if you know there are better days around the corner.

Best wishes, L



Great post...

Sorry if I scare anyone with my posts. Truly not my intention.


It's not a real problem - it's a shot of reality. Being scared, angry and afraid are all a part of this thing.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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ANDRETEXAS
Posts: 662
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Husband broke down last night

Postby ANDRETEXAS » Mon Aug 21, 2017 11:06 am

From the beginning, I knew I was going to be on FOLFOX and was aware of the side effects. Knowing what I know now, I'd do it all again. Three years later, I still have neuropathy, but it seems to be getting better month by month. I was 3B, and I see that your husband is 4A (so that could make a difference). Does he trust his doctors and their recommendations? He can't compare himself to others. I was told FOLFOX was my best option, and I concluded. I guess I would have tried almost anything to get something to work for me. Everyone has to decide what they are willing and feel comfortable doing. If you don't trust your doctors, then I would search for new ones. I hope your husband finds comfort in a treatment and a doctor. All the best...Andre
2/10/14 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT

3/2/15 - Clean colonoscopy & port removed
3/4 - clean CT
9/21- clean CT

3/23/16 - clean CT

2/22/17- clean CT

3/21/18 - clean CT
4/1 - clean colonoscopy

3/11/19 - clean CT
9/23 - Five-year release - Annual visits now !

4/13/23 - clean colonoscopy

ONE DAY AT A TIME !


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