HAD 8 FOLFOX TREATMENTS, SHOULD I CONTINUE

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jmosley86
Posts: 6
Joined: Wed Feb 15, 2017 11:45 am

HAD 8 FOLFOX TREATMENTS, SHOULD I CONTINUE

Postby jmosley86 » Wed Feb 15, 2017 1:00 pm

Hello everyone! I am a new member to this forum but have been reading for about a month. I'm interested in everyone's stories and find I can't stay away. I don't have any pressing questions except I'm not sure what to do about my treatment.

I've had 8 FOLFOX treatments and think I handled them pretty well with the exception of my 7th treatment, which hit me hard. I had horrible fatigue and longer lasting nausea. The neuropathy is manageable.

Here's my story and question(s). I was diagnosed in Oct 2016 with stage IV colon cancer with mets to liver. I am not a candidate for surgery because of the number of mets to my liver. My ONC wanted to start chemo as soon as possible. My CEA at diagnosis was 2256 (which scares me to think about when I read what some people on here had). After 4 treatments, I had PET scan. It showed near complete activity from liver, small activity from tumor in colon. My tumor in my colon went from 3cm to less than 1.5cm. The main liver tumor went from 4.5cm to less than 1cm. I also have a small tumor in my left breast that is a different cancer and we aren't specifically treating it. It's 1cm. My CEA went from 2256 down to 172.1. I am extremely happy with the results!!!

Now, I think I'm overthinking everything. I want to feel right all of the time. Not just on the 4-5 days I don't have chemo brain or the fogginess that goes with it. As I mentioned, I've had 8 treatments and I'm trying to get to 12. My goal is 10 because I will have another PET scan after 10 and get results before 11. If I have good results, I want to stop the OXY in the FOLFOX but I don't know if I should.

My questions:
Is there enough percentage of continuing treatment for 2 more to be beneficial?
Am I normal that I only have 4-5 days between treatments not be foggy? When I first started, I was down for days 3-5 after having my pump taken off. Now, I'm down with nausea but the fogginess lasts until the next week, usually 7-9 days. I'm trying to work on my good days but find the fogginess is a real negative to trying to work. I have been working because I have to but it's hard!

I hope all of this makes sense. I've never posted before but feel like this is a very open, supportive group and I'm just looking for some people who understand what I'm going thru. My parents, who are extremely supportive, have told me it's all my decision and to do what I think is right. I want to do what is right and don't want to make a wrong decision with my life.

I'm 48 and have 2 adult children. My daughter lives with me and could be considered a care giver. My parents live 500 miles away but travel to come stay with us when I have treatments and need extra help. My son lives in another state but is very much aware of what is happening.

Thank you to all who read and respond!
10/16: diagnosed at 48; Stage IV with mets to Liver
CEA at diagnosis was 2256; after 6 treatments was 172
12/16: significant reduction in tumors after 4 treatments
02/17: just finished receiving 8 of 12 of FOLFOX treatments
03/17: Next scan :D

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

Re: HAD 8 FOLFOX TREATMENTS, SHOULD I CONTINUE

Postby ANDRETEXAS » Wed Feb 15, 2017 1:38 pm

Firstly, everyone is different as is their side effects. You can see in my signature, I was Stage IIIb. I finished all 12 FOLFOX sessions, but that was after having blood work before each infusion, as well as a discussion with my oncologist. We went over my side effects and discussed in detail how bad they were. I had the ususal cold sensitivity, but foremost, I was interested in neuropathy. It was quite noticeable by No. 6, but it never reached the level of quitting until No. 12. We went over my symptoms, and the oncologist said he could reduce it, however, my side effects were still not in what you might call any critical stage. I made the decision to take full oxi on No. 12. For me, it was the right decision, For others, it might not have been. I have read where the first 6-8 treatments do the most work, but I'm just one of those people willing to forge ahead if it has a benefit, and I can tolerate it. The neuropathy in my fingers is mostly gone, and the neuropathy in my feet is probably 50% improved since the end of my treatments. There's really no one answer that's right for everyone. Consult with your oncologist, go over your side effects, and make an informed decision together.
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 !

jmosley86
Posts: 6
Joined: Wed Feb 15, 2017 11:45 am

Re: HAD 8 FOLFOX TREATMENTS, SHOULD I CONTINUE

Postby jmosley86 » Wed Feb 15, 2017 1:45 pm

Thank you for responding, Andre!!

I have blood work and see my ONC before every treatment as well. I'm just tired of feeling tired and foggy! I guess I'm hoping to get back to what my life was like before diagnosis, and that's not going to happen!! I don't want to quit but I don't like feeling this way!

I don't want to stop before I've had all 12 but going 4 more treatments and feeling this way is not something I look forward to doing.

Julie
10/16: diagnosed at 48; Stage IV with mets to Liver
CEA at diagnosis was 2256; after 6 treatments was 172
12/16: significant reduction in tumors after 4 treatments
02/17: just finished receiving 8 of 12 of FOLFOX treatments
03/17: Next scan :D

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: HAD 8 FOLFOX TREATMENTS, SHOULD I CONTINUE

Postby AnnClare » Wed Feb 15, 2017 1:48 pm

Welcome, and I'm sorry you have to be here.

I can't answer all of your questions, but I'd like to help and toss my two cents in for what it's worth.

As for what's 'normal,' that differs for everyone. No two people experience the same symptoms. For me, I felt fuzzy-headed immediately after infusion and a little bit during the 46 hours I was on the pump. Fatigue didn't become an issue for me until the 8th or 9th round, and then it was mostly on the day of my disconnect. Thankfully, the day after that, I was feeling more like myself, though still not 100% "me," which I think is to be expected. But I had enough energy to continue working, which I'm thankful for.

Regarding the nausea, does your doc have you on any anti-emetics? Mine had me receive several pre-infusion (Ativan, Emend, Zofran, plus Decadron which has anti-nausea properties) and I also wore a Sancuso patch (applied the night before infusion and left on for about a week). I did not have any nausea, which was great. There were some days when I didn't have much of an appetite, but I never felt as though I were on the verge of being ill, or close to it. If you're not on any of these meds, you can ask your doc about them as I truly believe they helped me cope.

I think the discussion as to whether to continue with the remaining FOLFOX Tx's is something to be discussed with your onc. I was hoping mine would let me stop after 10, but he encouraged me to do the full 12. Now I'm sitting here with lung mets just a few months after finishing, so personally I'm more than a little p.o.'d. What use was FOLFOX to me? BUTT - I am in no way, shape, or form telling you to stop. Again, that's for you to discuss with your onc. Everyone's cancer composition is so unique that there's no simple, quick, or easy answer and you need informed, educated professionals guiding you to your answer in that regard.

Sorry I can't give you all of the answers you're looking for. Please continue to come here with your questions, concerns, ventings, and of course your updates. This is an unpleasant time in your life, but you'll get through it.
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

jmosley86
Posts: 6
Joined: Wed Feb 15, 2017 11:45 am

Re: HAD 8 FOLFOX TREATMENTS, SHOULD I CONTINUE

Postby jmosley86 » Wed Feb 15, 2017 2:29 pm

Thank you, AnnClare!

I am on anti-nausea meds and when I ask about others, my ONC tells me that's all I can be on. Not sure why.

I realize everyone is different with their treatments, I just wanted to hear others opinions. I have been researching things and I'm sure there are others who are more knowledgeable than I am, so I just want to hear back from some.

I'm trying to make 12 treatments. I mean it's only 4 more!

Thanks,
Julie
10/16: diagnosed at 48; Stage IV with mets to Liver
CEA at diagnosis was 2256; after 6 treatments was 172
12/16: significant reduction in tumors after 4 treatments
02/17: just finished receiving 8 of 12 of FOLFOX treatments
03/17: Next scan :D

Coloncancerqueen
Posts: 25
Joined: Tue Aug 23, 2016 12:37 pm

Re: HAD 8 FOLFOX TREATMENTS, SHOULD I CONTINUE

Postby Coloncancerqueen » Wed Feb 15, 2017 9:33 pm

Julie,
Chemo is hard. Ugh I almost start gagging thinking about it. I only went 11. My neutrophil counts were low and the nueropothy was getting bad. I'm over a year from my last one and almost all side effects are gone. I have a little numbness in my toes and I noticed my right eye is a bit dry sometimes. The cold and dry weather doesn't help either of these.

I agree with all the previous posts, everyone is different I didn't want to make the decision about skipping the last treatment. I let my onc make it. He of course made a recommendation and made sure I was ok with it. Chemo is such a mental game. You will know what is right. hang in there, you can do it.
Dx 5-15
Right hemicolectomy 5-15
11 rounds of fol fox finished 11-15
6-16 elevated CEA 7.7
7-16 more elevation in CEA 13.1
Summer of 2016 2 ct scans, pet scan, MRI, ultrasound
8-12-16 Second opinion sought
8-16 biopsy revealed mets to ovary
9-16 both ovaries removed
10-16 CEA 2.6 clean scan NED
11-16 CEA 1.1, 1-16 CEA 1.5

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: HAD 8 FOLFOX TREATMENTS, SHOULD I CONTINUE

Postby teri3 » Thu Feb 16, 2017 9:01 am

Those last four can really kick your butt! I think I slept through most of the last 2 months of chemo. I ended up only doing 11 because I started getting some neuropathy, that was my oncologists decision I wanted to finish. Honestly I wish I had had that last round, I know one didn't make a difference but when my cancer came back I kept thinking "what would have happened if I had that last round" Listen to your what your oncologist says and try to hang in there. This cancer thing isn't for the faint of heart...you can do it!!

Hugs,
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

jmosley86
Posts: 6
Joined: Wed Feb 15, 2017 11:45 am

Re: HAD 8 FOLFOX TREATMENTS, SHOULD I CONTINUE

Postby jmosley86 » Thu Feb 16, 2017 10:18 am

Teri,

Thank you for replying. I'm dreading the last 4 and that's why I'm questioning having them. I know I'll go thru with them but I was just curious as to the advantage when I have so many days after that are bad! I have a cold now, so I'm not sure if they will postpone treatment 9 for a week or not. I still have to be able to function and work! Having the fogginess is what is bad for me. I'm a teacher and it's hard to work with my students when I'm feeling not 100%.


Julie
10/16: diagnosed at 48; Stage IV with mets to Liver
CEA at diagnosis was 2256; after 6 treatments was 172
12/16: significant reduction in tumors after 4 treatments
02/17: just finished receiving 8 of 12 of FOLFOX treatments
03/17: Next scan :D


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