Help plz- discouraged after 3rd Folfox

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

Help plz- discouraged after 3rd Folfox

Postby HopeForJesse » Sun Mar 06, 2016 9:55 am

Hello- I am looking for encouragement and experiences with extreme nausea after 3rd dose of FOLFOX. DH had minor side effects to first 2 treatments but as some of you warned, the cumulative nature of this has caught up to us in round 3. He has not been able to hold anything solid down in 3 days. Very tired, diarrhea and extreme nausea. The dr has ordered a motion sickness patch in addition to the zofran, compazine and Ativan that have been in place. DH does not want any more chemo ( infusion every 2weeks) but I really want him to get 3 more so he can have next scans done and see if this is working at all. I don't want to be pushy but want him to fight if there is any chance this can be temporary and he gain quality time. Am I being selfish? Do I need to step back here and respect his rights as the patient or is this where I need to hold my ground for his sake to get him through it? Thanks in advance for your time and praying for you all.
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!

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Help plz- discouraged after 3rd Folfox

Postby jhocno197 » Sun Mar 06, 2016 10:52 am

If he doesn't want any more chemo, I would not try to force him. It is his decision.

Maybe you can make a bargain with him, though. That they will adjust his meds, and he will give it one more shot? Is he starting the nausea regimen the day before, & not waiting for the nausea to kick in to start stuff?

:(
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

kandj
Posts: 301
Joined: Sun Sep 27, 2015 11:29 am

Re: Help plz- discouraged after 3rd Folfox

Postby kandj » Sun Mar 06, 2016 11:10 am

Is he getting Emend in his pre-chemo meds? they added that to my DH's regime after round two. Like your DH, he could not keep anything down. It has been a lifesaver and really helped.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again

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

Re: Help plz- discouraged after 3rd Folfox

Postby BeansMama » Sun Mar 06, 2016 11:14 am

I have found with the Folfox you really need to head the nausea off before it starts, take the meds regularly even if you aren't nauseous. He may benefit from starting the meds before the treatment. My onc offered an iv med that would last a few days, can't remember the name of it, but I haven't needed it yet.

I found piggybacking Zofran and Phenergan help the most, I take the Zofran then 4 hours later take the Phenergan then in another 4 hours the Zofran again.

Hopefully your husbands dr can find a combo that works for him.
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

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

Re: Help plz- discouraged after 3rd Folfox

Postby midlifemom » Sun Mar 06, 2016 11:27 am

MK,
It's a tough position you're in.
Butt, side effects can be managed. The only time I had a real problem with nausea was after my first folfox. Ended up in DRU for drugs and fluids. After that I started getting Emend and that was the end of nausea. I now take 2-3 compazine per cycle and that is it. Contact your onc tomorrow and say you want emend. Also, if Jesse is still not holding much down, going in for iv fluids may help.
For the diarrhea, what are you using? If Imodium isn't doing the trick (and you can take more than what's listed on label, I think 8 is the max per day) ask for Lomotil. Getting the diarrhea under control can help with the fatigue.
As for fatigue, I found a subscription to Netflix to be my best friend.

Regarding stopping - perhaps Jesse would go for trying one more with these extra meds - the lomotil and emend.

Let us know if you have more questions or just need to vent.
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?

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

Re: Help plz- discouraged after 3rd Folfox

Postby HopeForJesse » Sun Mar 06, 2016 2:28 pm

Thanks all. He does get Aloxi via iv with the chemo but I will ask about Emend. They sound similar but something just is not working this time even with the anti-nausea before and after.
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!

kandj
Posts: 301
Joined: Sun Sep 27, 2015 11:29 am

Re: Help plz- discouraged after 3rd Folfox

Postby kandj » Sun Mar 06, 2016 3:03 pm

HopeForJesse wrote:Thanks all. He does get Aloxi via iv with the chemo but I will ask about Emend. They sound similar but something just is not working this time even with the anti-nausea before and after.


Aloxi and Emend are different. DH's oncologist said about 10% of patients aren't completely covered with just Aloxi and zofran/phenegran. He added it to the premeds and that was the combo we needed. The Ativan helped as well. DH doesn't take the zofran because it constipates him, but he takes phenegran starting the night he gets home from Day 1.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again

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

Re: Help plz- discouraged after 3rd Folfox

Postby canadiandaughter » Sun Mar 06, 2016 3:10 pm

My dad had similar issues with the folfox. They reduced his dosage twice now and also added gravol to his anti nausea meds and that seems to have done the trick. He starts taking his meds prior to infusion and takes them for a few days after disconnect. I hope you can come up with something that works for your husband. My dad was very discouraged as well, but his last 2 infusions have been a lot better.
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

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

Re: Help plz- discouraged after 3rd Folfox

Postby HopeForJesse » Sun Mar 06, 2016 7:35 pm

Thanks again all. Quick question: is it normal for DH to sleep the entire day? He has managed so far to hold down 1/2 chicken salad sandwich and some fruit ( was up for 15 minutes to eat at 2:30) and got up again later at 5:30 for 15 minutes to shower. Otherwise has been sleeping or resting all day. Getting worried but hoping the rest is healing the chemo effects.
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!

Nik Colon

Re: Help plz- discouraged after 3rd Folfox

Postby Nik Colon » Sun Mar 06, 2016 7:46 pm

HopeForJesse wrote:Thanks again all. Quick question: is it normal for DH to sleep the entire day? He has managed so far to hold down 1/2 chicken salad sandwich and some fruit ( was up for 15 minutes to eat at 2:30) and got up again later at 5:30 for 15 minutes to shower. Otherwise has been sleeping or resting all day. Getting worried but hoping the rest is healing the chemo effects.

Yes, extreme fatigue is normal unfortunately

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

Re: Help plz- discouraged after 3rd Folfox

Postby HopeForJesse » Sun Mar 06, 2016 8:10 pm

Thank you Nik for the quick reply and reassurance! I was not sure to what extent and getting very worried. Hope it subsides soon so he gets some good days before we have to discuss next round.
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!

Rebequita
Posts: 18
Joined: Fri Jul 10, 2015 6:54 pm

Re: Help plz- discouraged after 3rd Folfox

Postby Rebequita » Sun Mar 06, 2016 8:31 pm

I just finished my last round (6th) of Folfox/Oxaliplatin. I had a really tough time with severe, delayed nausea. I tried Zofran, Compazine, Ativan, and Emend, and none of those regiments had any effect on my nausea. On Round 4, they implemented Zyprexa, which I took for four days following my chemo infusion. It knocked me out for a good five days, and it also brought my nausea down from a 10 to a 6. It made the last three rounds of chemo tolerable for me.

http://www.medpagetoday.com/HematologyO ... rapy/32735

I think most folks have good results with Emend, but I wanted to share in case it doesn't end up working for your husband.
6/15 Diagnosed RC Stage IIIb at age 38
7/15 Neoadjuvant Radiation and Xeloda
10/15 Lower Anterior Resection and temporary ileostomy; tumor shrunk to "in situ" and removed with clean margins; 0/19 nodes positive for cancer
11/15 Began 6 rounds of Oxaliplatin infusion/oral Xeloda
12/15 Negative for Lynch
3/16 NED
4/16 Ileostomy reversal
8/16 NED

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

Re: Help plz- discouraged after 3rd Folfox

Postby HopeForJesse » Sun Mar 06, 2016 8:37 pm

Thank you Rebequita - do you just take it for those 4 days each round? Or daily while on chemo?
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!

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

Re: Help plz- discouraged after 3rd Folfox

Postby BeansMama » Sun Mar 06, 2016 11:38 pm

HopeForJesse wrote:Thanks again all. Quick question: is it normal for DH to sleep the entire day? He has managed so far to hold down 1/2 chicken salad sandwich and some fruit ( was up for 15 minutes to eat at 2:30) and got up again later at 5:30 for 15 minutes to shower. Otherwise has been sleeping or resting all day. Getting worried but hoping the rest is healing the chemo effects.


Definitely normal! I am useless the day after my infusion, I do nothing but sleep. I am usually better the second day, still tired but I don't need to sleep. Once the pump is disconnected the fatigue lessens for me.

Everyone is different though. I seem to be having more nerve issues than other problems.
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

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

Re: Help plz- discouraged after 3rd Folfox

Postby canadiandaughter » Mon Mar 07, 2016 9:04 am

You might want to get some boost or ensure to help keep him getting some nutrition. My dad also sleeps a lot more on folfox than he did on folfiri and it also upset my mom. We
have to keep reassuring her that it is NOT the cancer, it's the chemo!!!!
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


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