Newly diagnosed and questions

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Newly diagnosed and questions

Postby calico » Thu May 16, 2019 2:50 pm

DH 54 was diagnosed March 8 thru a routine colonoscopy. Rectal cancer. T3N0MO.

During the week he lives and works 3 hours away from home. He starts chemo tomorrow. He had his port put in but also says he is taking chemo pills and they talked to him about a pump. But he refused that because of work.

Im confused. Why is he taking pills along with going every 3 weeks to get hooked up to the port?
Is that normal? I guess I thought it was one or the othe.

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Re: Newly diagnosed and questions

Postby Soccermom2boys » Thu May 16, 2019 7:10 pm

He is doing the XELOX regimen. The XELoda are the pills he takes for two weeks on, one week off. The OXaliplatin is the drug he is getting once every three weeks at the infusion center. Best of luck to him! How hard for the two of you being so far apart during his treatments.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

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Location: Melbourne, Australia

Re: Newly diagnosed and questions

Postby Rock_Robster » Thu May 16, 2019 8:10 pm

Indeed as Soccermom2boys said, the port will be there for the oxaliplatin infusion. It is possible to do oxy without a port (ie via a peripheral vein), however having done two treatments this way I can NOT recommend it - infusion via the port is much more comfortable and it should give him no grief once it’s in and settled. Best of luck.

Male 37; Melbourne, Australia
10/2018 Dx 3.5 cm RC adenocarcinoma, 12cm from AV
Mod diff (G2), EMVI+, LVI+, PNI-
3 local LN; 4 liver mets, resectable
pT3pN1apM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic chemoradiation; complete metabolic response (TRG 3)
07/19 - ULAR (robotic), temp ileo, 1/27 LN
08/19 - Missed liver spot; to resect along with reversal after chemo
08/19 - FOLFOX x 1, FOLFOXIRI x 3

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Re: Newly diagnosed and questions

Postby calico » Thu May 16, 2019 9:15 pm

ok thank you! that clears it up. Do you know how many weeks he will be doing that for? Originally he was told every other week for 10 weeks. But now it is every 3 weeks.

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Re: Newly diagnosed and questions

Postby Pyro » Thu May 16, 2019 9:39 pm

If there is a pump involved it is likely a 5FU pump, and you wear that for 46 hours straight. Then you may have to go back to the doctor to get it disconnected. It’s a miserable few days every few weeks, sounds like he’s not ready to hear it.
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

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Re: Newly diagnosed and questions

Postby calico » Fri May 17, 2019 7:20 am

No pump. He is doing oral pills instead. He goes in for the port today at 9 am. Originally he was told every other week for ten weeks. Now he is being told every 3 weeks but forgot to ask the duration. Im wondering if he still goes in 5 times for a total of 15 weeks? or? He is old school and doesn't ask the right questions and has been told so many things.

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Re: Newly diagnosed and questions

Postby Claudine » Fri May 17, 2019 10:13 am

Welcome here Calico,

My husband had the same treatment last year. He didn't get the port for his first infusion and it was a huge mistake! Got it installed for the second and it made the infusion much easier, so it's a good thing your husband is getting one. My husband got 6 treatments, with an infusion every 3 weeks and two weeks of pills in between - giving him a welcome one-week rest at the end of each cycle.
Good luck to you and your husband XXX
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (activity on PET scan, but no cancer found)
Xelox * 6, 05/2018 to 10/2018
6.7 cm hypermetabolic left adrenal mass 03/14/2019, 4.4 cm 05/21/2019
SBRT L4 02/2019
Folfiri + Avastin
CEA 58 03/15, 17 03/29, 10 04/12, 6.4 04/26, 5 05/10, 4.8 05/23, 4.2 06/07, 3.6 06/21, 3.2 07/07
Scan 05/21: Multiple small lung nodules shrinking or stable compared to 03/14 scan.

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Re: Newly diagnosed and questions

Postby kellywin » Fri May 17, 2019 11:24 am

The very 3 weeks is a fairly normal schedule for Xelox (Xeloda pills +the nasty Oxaliplatin). I did it, originally scheduled for 6, but we didn't do the 6th Oxali due to a bad reaction on the 5th infusion, 6th round was Xeloda only. I was only scheduled for 6 because I did Xeloda with Radiation prior to surgery so I got "credit" for that chemo. Personally, I think the every 3 weeks is a good solution for people who need to work during chemo, you have more time in between infusions to feel more like yourself. You can do it in the vein, it's not a picnic, but it can be doable, although if he's scheduled for 10, I don't know that I'd want 10 rounds in the vein. If he's not opposed to getting the port, it would be easier.

Good luck to your husband.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

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Location: New Jersey

Re: Newly diagnosed and questions

Postby Beckster » Fri May 17, 2019 4:34 pm

Capeox is given in 8 cycles...14 days on and 7 days off. I did my first infusion with oxi without the port and it is really painful. He is probably better off with the port. Another thing to remember is that Xeloda can cause hand and foot...stay on top of any side effects. The oncologist can adjust the Xeloda without interfering with quality of treatment.
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
LN: 0/24
LVI present
Surgical margins: clear
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion
1/2/17 to 6/9/17- Xeloda monotherapy
6/17, 12/17, 6/18, 12/18, 6/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1
Clear Colonoscopy 10/17 :D

justin case
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Location: Katy, Texas

Re: Newly diagnosed and questions

Postby justin case » Mon May 20, 2019 2:51 pm

The Oxi can take up to 5 hours even with port. I had a port and in was not much of a problem.
7/11 diagnosed Stage 2 colon and rectal cancer
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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Joined: Sat Oct 21, 2017 1:34 pm

Re: Newly diagnosed and questions

Postby retiredteacher » Tue May 21, 2019 12:30 am

The pill is capecitabine; Xelox is a brand name. The pill is the oral version of the 5-FU ( ... racil.html) Your hubby is on the standard best practice for this type and stage of cancer - a cycle of 5-FU and another chemo. If he gets the 5-FU chemo in a pill form, it goes every three weeks - two weeks on, one week off (or so.) If it's a pump form, it's every two weeks (or so) for some number of hours each time, different number of weeks. Studies have determined that best results occur if the 5-FU (in any form) is paired with a second chemo, oxaliplatin. So, you will hear that he is on Xelox or Capox - it's the pill 5-FU plus the infused oxaliplatin. The docs target for a certain number of cycles - let's hypothetically say six - that science so far demonstrates best survival rates that some number of people can well tolerate for this stage of cancer. Beyond this, it is dependent upon individual variables - what individuals can handle. My oncologist targeted five cycles Capox - he would have been happy. But neuropathy and liver numbers made him call off the chemo after four. ( He was still satisfied.) Other folks have gone five or six. It was frustrating to not be able to pencil this thing on a calendar. Cycles might be delayed and take four or five weeks rather than three - the entire program may be off one month or more. I hope this answers your question. I had a rectal cancer. My hubby had a colon cancer 13 years ago and is also a SMALL CELL lung cancer survivor from seven years ago. So we are pretty much veterans in the cancer survival situation. This is the best place to be for questions and the folks here are very kind and generous with their knowledge.
RC, F, 63 at diagnosis, Sept. 2017
Adeno 6.3 - 7 cm tumor (PET) MSS, G2,
Est. T3N0M0 PET
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018, 0.6 Oct. 2018
MRI Feb. 2018 Presurg yT2 N0 12 cm from AV 3 cm
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm
CAPEOX March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues, liver enzymes
Clear CT and colonoscopy November 2018. NED. :-)

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Re: Newly diagnosed and questions

Postby calico » Sat May 25, 2019 7:27 pm

Thank you everyone. Sounds like he is going to get 6 more cycles. You have all been very helpful

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