Chemo Question

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mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Chemo Question

Postby mike1965 » Tue Mar 22, 2016 8:42 pm

I saw oncologist today. He wants to start Chemo on Apr. 18th. He wants to do six months of chemo with Folfox every other week. He wants to implant a port in my chest. He stated that I would go in on Mondays for six hours for chemo and then they would hook up a chemo pump to run while at home for until I returned to the office on Wednesday. My question is this standard chemo care or are there other options. Thanks
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

User avatar
HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Chemo Question

Postby HopeForJesse » Tue Mar 22, 2016 8:55 pm

Hi Mike,
I am fairly new to this forum too but I can tell you that is the exact same treatment for my DH. In the furture, they can teach someone how to remove the infusion for you after 48 hours so you don't have to always go back in the Wednesday after.
Good luck and lots of prayers for you.
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

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

Re: Chemo Question

Postby midlifemom » Tue Mar 22, 2016 8:59 pm

Mike, there are always options, butt 6 months of folfox with 46 hour pump is standard care.
One other option you may want to investigate/discuss with onc is Xeloda instead of the pump. I never did xeloda so can't offer much of an opinion, butt use the search feature and you will find discussions on both folfox and xeloda.
Best of luck.
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?

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: Chemo Question

Postby mike1965 » Tue Mar 22, 2016 9:13 pm

midlifemom wrote:Mike, there are always options, butt 6 months of folfox with 46 hour pump is standard care.
One other option you may want to investigate/discuss with onc is Xeloda instead of the pump. I never did xeloda so can't offer much of an opinion, butt use the search feature and you will find discussions on both folfox and xeloda.
Best of luck.

Thanks MidLifeMom. I will ask oncologist about Xeloda. I really do not want the port and pump but I want to be aggressive in my treatment. I will see what he says.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

Ajane
Posts: 427
Joined: Tue Jul 23, 2013 3:03 am

Re: Chemo Question

Postby Ajane » Tue Mar 22, 2016 9:44 pm

Mike, if you choose Xeloda, but want to be as aggressive as possible, as a stage 3, of course you'll need to add Oxaliplatin. It can be given intravenously, but can be really hard on the veins. I can attest to the fact that it was hard on my veins via IV, but much easier via the port. If you have any issues with reflux and routinely take PPI's (Prilosec, Nexium, etc), you're not a candidate for Xelox. There was an article presented at the ASCO meeting last May indicating that PPI's interfer with the absorption of Xeloda. Unfortunately, we did not know that when I started my chemo last June. After two horrid rounds when I could not complete of Xelox, at the prompting of another member here, I started researching PPI's and Xeloda. That's when I found the article and presented it to my Oncologist. We switched to Folfox and did fine. I only needed an occasional Zantac to control the gastric upset.
Sorry for the book and the soapbox. I just don't want anyone else to go through any unnecessary pain and ineffective, ill-absorbed Xeloda!
Good luck to you, Jane
Last edited by Ajane on Tue Mar 22, 2016 11:29 pm, edited 6 times in total.
7/13, T2, G3, Ultra-low. CEA 5.7 KRAS Wild, MSS
8-9/13 6 wks Xeloda/radiation
12/13 TEM pCR NED
5/15 CEA 4.6 PET 1.5 cm met, UL Lobectomy
6-10/15: Rounds 1-2 Xelox+Avastin; 3-8 Folfox+Avastin
10/15-4/16: 12 rounds Avastin
9/2016 CEA 4.2, 12 mm AP node
11/2016 CEA 4.3. PET/CT. 16mm AP nodal met removed
4 wks chemorad
2/2017 NED CEA 2.4
Carafate to tx esophageal ulcers caused by rad
Avastin maintenance postponed

2 Corinthians 12:9

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: Chemo Question

Postby mike1965 » Tue Mar 22, 2016 9:54 pm

HopeForJesse wrote:Hi Mike,
I am fairly new to this forum too but I can tell you that is the exact same treatment for my DH. In the furture, they can teach someone how to remove the infusion for you after 48 hours so you don't have to always go back in the Wednesday after.
Good luck and lots of prayers for you.


Thank you for info. I am still learning about this chemo.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

Snapfish
Posts: 50
Joined: Mon Oct 05, 2015 10:42 pm
Location: Washington, DC (dad in Houston, TX)

Re: Chemo Question

Postby Snapfish » Tue Mar 22, 2016 10:48 pm

There is so much to learn in what feels like such a short amount of time, but you have come to the right place for advice and input.

If you do FOLFOX, get the port. Doing chemo via IV can destroy your veins in short order. I'd recommend you also think through what day of the week you want to have your treatment. FOLFOX is different for everyone, but it seems that the days when most people are wiped out is the day of the disconnect and the day after. My dad started on Thursdays and was down for the count over the weekend (Saturday disconnect).

-snapfish
Daughter to 70-year old father dx 2015-Sept-28: Stage IV adenocarcinoma with signet ring cell features
Sigmoid colon primary with peri mets
MSS; RAS wild-type; mutation in exon 8 of p53

2015-Oct: Began FOLFOX-6 at MDA; CEA was 15.1 at baseline
2016-Feb: CEA 5.7; 10 full rounds of FOLFOX-6 completed
2016-Mar-3: Began FOLFIRI
chemo, chemo, chemo
2017-Jan: Total of 29 cycles of chemo down. Back on FOLFOX again after FOLFIRI fail. CEA now 118.

Ajane
Posts: 427
Joined: Tue Jul 23, 2013 3:03 am

Re: Chemo Question

Postby Ajane » Tue Mar 22, 2016 11:26 pm

Honestly, I agree with snapfish on both issues. I remember during cycles 3-4 telling my nurses how much I loved my port. As far as scheduling goes, my chemo was on Thursdays but the clinic was always open for disconnects, etc on Saturdays till noon. I would always need fluids by Saturday (plus the following Monday and Tuesdays). I managed fine with this schedule. But the unknown factor is that some patients will need fluids before the disconnects, some not at all. So to be be on the safe side, ask for Mon or Tues.
7/13, T2, G3, Ultra-low. CEA 5.7 KRAS Wild, MSS
8-9/13 6 wks Xeloda/radiation
12/13 TEM pCR NED
5/15 CEA 4.6 PET 1.5 cm met, UL Lobectomy
6-10/15: Rounds 1-2 Xelox+Avastin; 3-8 Folfox+Avastin
10/15-4/16: 12 rounds Avastin
9/2016 CEA 4.2, 12 mm AP node
11/2016 CEA 4.3. PET/CT. 16mm AP nodal met removed
4 wks chemorad
2/2017 NED CEA 2.4
Carafate to tx esophageal ulcers caused by rad
Avastin maintenance postponed

2 Corinthians 12:9

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: Chemo Question

Postby mike1965 » Wed Mar 23, 2016 12:05 am

Thanks for the input. The doctor said it would be on Monday. I emailed him and asked about xeloda. He responded that I could do xeloda but I would have to do oxaliplatin by IV therefore would need a port.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Chemo Question

Postby BeansMama » Wed Mar 23, 2016 12:34 am

Having the port makes things much easier. No fishing for a vein, fewer blown veins etc. They can use the port for more than just chemo. I have labs drawn from mine, have had a regular IV through mine when I was hospitalized, they also use it for the contrast for a CT scan.

As others have said, the chemo your onc is recommending is the standard. The pump really isn't that bad. I was getting my infusions on Tuesday, my worst days are the day after infusion and the day after the pump comes off. I recently switched my infusions to Wednesdays, I start that tomorrow, we will see if I miss less work this way (fingers crossed!)
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: Chemo Question

Postby mike1965 » Wed Mar 23, 2016 1:54 am

Ajane wrote:Mike, if you choose Xeloda, but want to be as aggressive as possible, as a stage 3, of course you'll need to add Oxaliplatin. It can be given intravenously, but can be really hard on the veins. I can attest to the fact that it was hard on my veins via IV, but much easier via the port. If you have any issues with reflux and routinely take PPI's (Prilosec, Nexium, etc), you're not a candidate for Xelox. There was an article presented at the ASCO meeting last May indicating that PPI's interfer with the absorption of Xeloda. Unfortunately, we did not know that when I started my chemo last June. After two horrid rounds when I could not complete of Xelox, at the prompting of another member here, I started researching PPI's and Xeloda. That's when I found the article and presented it to my Oncologist. We switched to Folfox and did fine. I only needed an occasional Zantac to control the gastric upset.
Sorry for the book and the soapbox. I just don't want anyone else to go through any unnecessary pain and ineffective, ill-absorbed Xeloda!
Good luck to you, Jane


Ajane thanks for the info. It appears I have two options to have Xeloda with Oxaliplatin where I am taking 6 pills a day for 14 days and Oxaliplatin in IV every 3rd week. Or I can do Folfox with the chemo three days a week every other week. Tough Decisions. Since it appears the Oxaliplatin has to be done I think I am leaning toward Folfox since it is three days every other week versus taking lots of pills.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Chemo Question

Postby Nik Colon » Wed Mar 23, 2016 8:08 am

If you have the pump, I had a nurse come to my house to disconnect, my insurance paid for it, so this is an option also.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

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

Re: Chemo Question

Postby mike218 » Wed Mar 23, 2016 8:34 am

mike
recheck with MD about if you need to be Monday (or is it just the day they do it in his office) I ended up getting mine in the hospital Infusion room and did THursday-after the 1st few rounds actually went to work Friday (kind of a stationary job) and disconnect Saturday-(wife is a nurse) --push for what makes your life better-not blowing 3-4 days midweek because it fits MD schedule-
First few sessions wore me out but it got better -and hydrate-even if you find that you need to run IV fluids pre chemo its worth it --did 12 rounds Folfox with Emend IV for nausea
now on Folfiri /Avastin after CEA crept up and new lymph node

mike218
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
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Chemo Question

Postby Nik Colon » Wed Mar 23, 2016 11:07 am

For me, the first 2 days I had more energy cuz the steroids, then I crashed, horrible fatigue on 3rd. Fatigue throughout, but day 3 was my worst.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

User avatar
kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Chemo Question

Postby kellywin » Wed Mar 23, 2016 12:42 pm

Mike - I'm going to add my 2 cents about considering Xelox (Xeloda + Oxaliplatin). I didn't have Folfox, so I can't speak to that, but I can tell you I'm glad I chose Xelox. Having 3 weeks in between infusions gave me more time to feel better and it was easier for me to work full time on that schedule. I had zero issues with Xeloda (pills). I was on it for 5 days a week for 5.5 weeks during radiation and then 6 rounds after surgery. There's no carrying around a pump and it is possible to have it in the vein (no port). Some people have an issue with the vein, I did 5 rounds (I was supposed to do 6, but the last round they ended up scrapping the Oxi due to side effects and was only Xeloda). If I were doing much more than 6 rounds, looking back, I'd probably have gone with the port, but 6 rounds is definitely doable in the vein (at least for some people). The pills were no big deal, 3 in the morning and 3 at dinner, down in one swig.

Everyone has their own personal choices, it just depends on what works for you.

Good luck!
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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