Hard questions & an introduction

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Reneeoa
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Hard questions & an introduction

Postby Reneeoa » Wed Mar 15, 2017 11:26 am

Hi there,

My name is Renee. I have been reading & searching this site for answers for a while but now I feel like I'm in over my head & need to post.

My husband, Ryan, was diagnosed with stage III (T3 N1) rectal cancer on August 15, 2016. He was 42 at the time. He'd had blood in his stool for a few months, was sent for a colonoscopy thinking it was ulcerative colitis and came out with rectal cancer.

He finished up his xeloda/radiation on October 14 and had his resection done up at Stanford on December 2nd. He ended up staying in the hospital for 9 days because of an Ileus. So much has gone wrong since then that I don't think I can even write it all out! After an abscess & quite a few other bumps in the road, he finally had a port placed and started folfox on January 19th.

Ryan has completed 3 folfox treatments and was set to have his 4th treatment last Monday, March 6th. Unfortunately, his belly started to cramp up on Sunday night and the output from his ileostomy slowed way down. After vomiting Monday morning, he postponed his chemo treatment and we headed to the ER for a possible blockage. He had a CT scan and they found small (possible) obstruction. An NG tube was placed & we were admitted to the hospital for observation.

On Tuesday morning, all hell broke loose. He was having trouble breathing, his blood pressure dropped and his heart rate was 170...he was dying right before my eyes!! He was in the ICU for 6 days with septic shock. His team of 6 doctors still don't know what went wrong...and they all have a different guess/theory! He's been scoped, scanned & poked but we have no solid answers. He is still in the hospital but is improving daily.

Anyhow, his oncologist came by this morning to have a talk with us about what's next. He's not convinced that this isn't chemo related. Ryan has had every weird reaction to folfox and, if this happens again, it won't end this well. His onc. is worried that he could lose all of his small intestine (TPN for life!) or worse. Within the next few weeks, we have to decide whether or not we want to continue treatments.

Have any of you experienced anything like this? Did you stop folfox? If he only has three treatments, does his long-term survival rate go way down? If it were you, what would you do? We have three kids and they need their dad. Help!! For the first time since diagnosis, we are both freaking out at the same time...usually, one of us is strong while the other loses it! :wink:

Sorry that this was so long and thank you if you read all the way to the end.
DH (42) diagnosed w/rectal cancer 8/18/16 (T3 N1)
Radiation/Xeloda (28 treatments) 9/3-10/14
Resection w/temp ileostomy 12/2/26
Port placement 1/19/17
FOLFOX (8 treatments) started 1/23/17

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dianetavegia
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Re: Hard questions & an introduction

Postby dianetavegia » Wed Mar 15, 2017 1:49 pm

HI Renee, and I'm so sorry about your husband. I hope he continues to mend.

I didn't have rectal but in my humble opinion, having 28 radiation treatments and Xeloda (which is part of FOLFOX in a pill form), he's had enough chemo. Chemo kills some of the cells that might have escaped surgery or other treatments. Your husband only had 1 bad lymph node. His chance of a cure from surgery was probably 50% (I'm going by colon info so might have wrong %).

Chemo has damaged a lot of us. I have permanent CNS damage and mechanical allodynia. I have L'Hermitte's Sign. My onc said if I ever had FOLFOX again, 'I'd be putting you in a wheelchair for life'. My chemo ended 8 years ago this August!

FOLFOX has so many side effects and I applaud your onc for not pushing to try a lesser dose. I would forgo the chemo and just keep up with regular scans for a FULL five to SEVEN years because stats show that rectal cancer can tend to recur a bit later than colon. Just be ahead of the game and catch any small spread then have surgery with curative intent.

Wishing you both well,
Diane
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

NED April 2017 Eight yrs, 3 months since original dx. Five yrs. NED post liver resection.
“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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peanut_8
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Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Hard questions & an introduction

Postby peanut_8 » Wed Mar 15, 2017 2:24 pm

Hi Renee,
Sorry to hear about Ryan's diagnosis, and sepsis. That's bad news!

As Diane noted, Ryan did receive chemo with his 28 radiation treatments. However, the dose of Xeloda is quite a bit lower for chemo/rad than what he would get with adjuvant chemo, and the adjuvant phase is considered to be an important part in the overall scheme of things.


It's possible that his adverse reaction was due to the oxaliplatin in the FOLFOX. If that were to be the case, he could continue with Xeloda alone. Perhaps you could discuss this with his medical team? There's also a chance that his bad reaction was because of the 5-FU, which although intravenous, is similar to Xeloda. If that is the case, his options would be limited. Did he have any similar problems during chemo/rad?

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

Jacques
Posts: 301
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Re: Hard questions & an introduction

Postby Jacques » Thu Mar 16, 2017 3:25 am

Reneeoa wrote: ... Have any of you experienced anything like this? Did you stop folfox? If he only has three treatments, does his long-term survival rate go way down? If it were you, what would you do? ...

Renée - I'm very sorry to hear about our DH's problems. Yes, I did experience something very much like this after my 3rd cycle of adjuvant Xelox. There are quite a few similarities between our two cases, including the fact that my medical team was completely baffled after having gone through all the treatment options that they knew about for septic shock, with no success.

I don't remember much about the experience, though, since I was unconscious much of the time and on TPN for several weeks. All I can say is that I had no choice about continuing chemo. After I finally recovered, my oncologist told me that he would not approve any kind of chemo for me from that point onward, under any circumstances.

So, that's how it has been for the past 4 years -- no chemo, ever. And I'm still here to talk about it.
DX(2012): RC
Stage II, T4 N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0
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PainInTheAss
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Joined: Tue Jul 02, 2013 3:08 am

Re: Hard questions & an introduction

Postby PainInTheAss » Thu Mar 16, 2017 6:17 am

That is terrifying.

I would suggest you get several second opinions and get a consensus from experts. Whether three rounds would be "enough" has more to do with how he tumor responded to the chemorad. If he had a complete pathological response, or even a very good response (with just trace cancer cells left) then his prognosis would be very good even with just three rounds. If he had a poor response, or the tumor grew, the additional chemo rounds of oxiplatin might be more important. If that is the case, they might be able to try a reduced dosage and see if he can handle it. I would get several opinions from other Oncologists. We aren't doctors and you have to compare apples to apples when making decisions. None of us have the exact same apples you do. Stage IIas often don't do chemo, but it can make a big difference for a IIIc, for example. Stage and risk factors have to be taken into consideration.

I did have a lot symptoms with the oxi after the first few rounds. They had to look them up to see if I was having a reaction or just having symptoms, because they were weird, like not being able to talk and muscles freezing. None of it was so bad that I needed to stop, though.

I'm so sorry you're going through this.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6

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chrissyrice
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Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Hard questions & an introduction

Postby chrissyrice » Thu Mar 16, 2017 11:04 am

IMO... from what you have posted here it does sound wise to stop chemo for now.

Does he have any active cancer sites that can be seen on a CT or PET scan right now?

His body needs to heal for now, especially if he is just doing mop up chemo.

Did the doctor do any tests for his toxicity to chemo/oxaliplatin? This would show why he had such a severe reaction.

Chrissy
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon Resection
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU & Leucovorin
12-16-2010 PET/CT Scan Cancer Free
07-05-2012 CT Scan NED 2 years
10-13-2013 NED 3 yrs
08-01-2014 NED 4 yrs
06-30-2015 Stage 4 iliac lymph node(s)
08-11-2015 Surgery removed 3 cm tumor and iliac artery graft done.
Positive margins in the abdominal aorta, on active 3 month surveillance.
03-16-2016 CT Scan Stable, 06-16-2016 CT Scan Stable, 09-21-2016 CT Scan Stable

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

Re: Hard questions & an introduction

Postby bitchslapped » Fri Mar 17, 2017 5:22 pm

Reneeoa wrote:On Tuesday morning, all hell broke loose. He was having trouble breathing, his blood pressure dropped and his heart rate was 170...he was dying right before my eyes!! He was in the ICU for 6 days with septic shock. His team of 6 doctors still don't know what went wrong...and they all have a different guess/theory! He's been scoped, scanned & poked but we have no solid answers. He is still in the hospital but is improving daily.


Reneeoa wrote:Have any of you experienced anything like this? Did you stop folfox? If he only has three treatments, does his long-term survival rate go way down? If it were you, what would you do?


Reneeoa, Was any member of the "team of 6" an ID doc (infectious disease)? I would ask for a referral to a board-certified one or find one yourself to be a part of your DH's medical team. Too often referrals out to ID docs don't happen soon enough or at all. Where did I learn that, you ask? From our pharmacist. You may never know the exact source; could have been the abscess or the chemo port. An ID doc w/b helpful in managing infections in immune-compromised patients (that's what they do) & assisting in some of the decisions moving forward. Anyway, that's what I would do.
My DH went into septic shock. The suspected source was the chemo port which was only being used for blood draws as he was done w/chemo. Out came the port. He did get sepsis again due to liver cysts/abscesses @ which time I brought in ID doc to manage antibiotics during the last 6 mos. of his life.

Sounds like your DH has had lots of chemo/radiation.
Let us know what you decide & how things are coming along.

Best Wishes
BS
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
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


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