Doc wants me to do the full 12 cycles

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

Doc wants me to do the full 12 cycles

Postby AnnClare » Thu Aug 25, 2016 1:13 pm

I had my regular onc check up today. He said that we COULD stop at cycle 10 (which will be this Saturday), but since the tumor and 2 lymph nodes still had cancer cells in them at the time of surgery, he'd feel better if I keep going, especially since I'm "doing so well" on FOLFOX. Ha. He should see me when I'm on the pump! Fussy, emotional, cranky . . .but I get it. I can tolerate it, I just don't WANT to.

I hated being reminded of the cancer cells that were in my body. Not that I ever forget about that (I wish!), but hearing him reiterate it out loud just made me feel sad. And angry at my body for short-circuiting on me when all I've done is try to treat it well. I don't want a recurrence, and while I know there are no guarantees, I trust my doc. If he says he'd feel better if I keep going, I'll do it.

Still, I'm disappointed and wish I could've just gone home rather than coming back to work. Then again, what good would it do me to sit home and cry in my proverbial beer, right?

On a positive note, my blood work was good enough that I can skip the Neulasta again this round. Yay! Hoping I can skip it all the way until the end as well.
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

DarknessEmbraced
Posts: 3440
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Doc wants me to do the full 12 cycles

Postby DarknessEmbraced » Thu Aug 25, 2016 1:34 pm

Hope the rest of your chemo goes well and glad you don't have to have a Neulasta shot!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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

Re: Doc wants me to do the full 12 cycles

Postby AnnClare » Thu Aug 25, 2016 2:15 pm

Thanks for the support. :)

My struggle throughout this process has been mostly emotional. Sure, the cold sensitivity, fuzzy/burning tongue, grogginess & fatigue have been less than fun, but it's the mental and emotional aspects that have really throw me for a loop. The meds make me feel so down, and that's not like me.

Also, it would be nice if my sister had offered, just once, to come with me during an infusion. I would've declined her offer because there's no sense in having someone just sit there. But it hurts that she never even offered. I've had people who I'd consider mere acquaintances who've offered to go with me (and I've always declined). I know she went through hell when our mom was battling lymphoma. It hurt me, too, and in hindsight I wish I'd done more for her. (Sometimes I think I got "c" because I wasn't a supportive enough daughter during a time she needed it most.) There's no playbook for dealing with a family member in these circumstances. She's entitled to her feelings, but I'm also entitled to mine. I won't hold her lack of involvement against her, but I can't say it doesn't bother me. The rare times I text her with an update or just a simple, "Ugh - feeling so tired today," I get no response. I realize she probably feels helpless, since there's nothing anyone can do to truly take away what we're going through, but hell - it would be nice if she at least acknowledged I'm going through a s*** time.

This path we have to walk is so lonely. If there's one thing I'd tell people with a loved one battling "c" it's to be there for them, even it it makes YOU uncomfortable. I can't go back in time and be there for my mom, and I certainly hope I never know anyone else who has to deal with this mess, but if I did, I know I'd handle things differently. I'd offer to do whatever I could to make them feel less alone.

Sorry for going off on that tangent. I'm a bit emotional today . . . and I'm not even on the meds! Yikes. :oops:
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

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

Re: Doc wants me to do the full 12 cycles

Postby mike1965 » Thu Aug 25, 2016 4:13 pm

AnnClare,

I understand exactly what you are saying. I am in the middle of my 10th treatment and the hardest part for me has been the mental like u stated. I also have family members who have not acknowledged my cancer. I know it can be hard but I focus on getting better for myself. I look at the finish line and will fight thru the next two treatment. I want to do everything I can do to get rid of this evil cancer. When I first was dx, I did a wait and see approach and it did not work out well. Stay strong and fight this evil. I pray all goes well.
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

patrickt
Posts: 18
Joined: Fri Jun 10, 2016 12:32 pm

Re: Doc wants me to do the full 12 cycles

Postby patrickt » Thu Aug 25, 2016 6:37 pm

Sorry that you need to do more chemo. Hope it goes well.

My mom (58, stage IV) just met with her doctor and was advised to do another 3 cycles of chemo. The initial plan was to do only 3 cycles. The doctor said something about doing 3 cycles, then surgery, then another 3 cycles, and now they're changing the order to 6 cycles then surgery.

Does anybody have a similar experience or idea why they're doing another cycle?
Mom (58) has RC stage 4, 1 metastasized to liver, stage 1A lung.
Diagnosed 5/2016
Chemo/radiation 6/2016 - 11/2016
Radiation therapy to treat stage 1 lung cancer 10/15/2016
Liver ablation (colorectal cancer liver metastasis) 11/20/2016
LAR surgery - 11/30/2016
Recovery - tests are looking good 1/1/2017
Radiation completed 3/24/2017
NED 1/2019
Recurrence - liver + spleen - 2/2019
CEA = 19
Chemo - 3/2019
Splenectomy + Liver ablation - 7/2019
Finished 6 rounds of chemo - 9/2019
CEA = 4

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MikeManess
Posts: 86
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: Doc wants me to do the full 12 cycles

Postby MikeManess » Thu Aug 25, 2016 7:38 pm

I was supposed to also do about 3 rounds of Folfox + Avastin and then have my 2nd surgery (2 mets in liver, one in lung), but the oncologist said I would do six instead. Now, he wants me to do the full 12, have surgery, then do more chemo. Ugh!

I've been very, very lucky. My wife always comes with me for chemo. She actually spotted me having an allergic reaction to Oxy, so it was stopped before the reaction became worse. She's always there, sitting (or trying to sleep) in that uncomfortable chair .. from 9am until 3pm. She's a marvel and has been soooo supportive. Family support is so important when you're going through having toxic chemicals pumped into you. It kills more than cancer, but hopefully it kills cancer before it kills everything else. I can totally understand how depressing it is to go into the infusion chair all alone. It would suck (at the very least).

The neuropathy, the cold sensitivity, the steroid crash, taste changes, aches, pains, mouth sores, fever, chills, diarrhea, massive weight loss, carrying around that damned pump, etc, etc, etc, I had no idea what I was getting into. 4 more rounds (I hope!) then I'm cut free of this curse for a while.
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Doc wants me to do the full 12 cycles

Postby Lydia666 » Thu Aug 25, 2016 9:48 pm

I understand about relatives, i've had some really sucky comments from the in laws and from friends.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

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ANDRETEXAS
Posts: 639
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Doc wants me to do the full 12 cycles

Postby ANDRETEXAS » Fri Aug 26, 2016 12:57 am

Hang in there.....you can do it! My oncologist suggested I go for all 12....and I said - "Let's go for the gold." The numbness in my fingers is gone....and the neuropathy in my feet is still there, but much better. On a sad note, I found out my oncologist that turned me over to a new oncologist three months after my last chemo round died less than a month ago of pancreatic cancer. He was 42. I am devastated. He gave me the courage to finish. Best of luck to you. Andre
2014
2/10 - 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
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

AbbyDoo
Posts: 134
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: Doc wants me to do the full 12 cycles

Postby AbbyDoo » Fri Aug 26, 2016 12:59 am

Hi Ann,
I know you had your hopes up to be done with chemo and I'm sorry you have to do two more.
I'm impressed that you have been able to keep working threw this. Two more infusions will go by quick and then you can say you gave it your all. You would feel terrible if it came back and would be wondering if two more would have prevented it.
Your so right about the emotional side of cancer. IT SUCKS and most people don't talk about.I don't think a person who never had cancer could understand.
I was always that tough guy who never showed emotions until cancer hit, it turned me into a whining little bitch butt it gets a lot better when treatment stops.
GO Out and do something fun. Go buy yourself something special.
Your a strong beautiful person.
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

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

Re: Doc wants me to do the full 12 cycles

Postby BeansMama » Fri Aug 26, 2016 1:51 am

I'm sorry you are having such a rough time with the chemo. Pushing through and giving yourself the best chance is the right decision.

I'm sorry you are also having issues with your family, some people just don't know how to handle it. Instead of dwelling on what they aren't doing try and concentrate on the people that are there and supporting you. Family isn't just about blood and dna. I have always been a firm believer that family is who you choose. I have a large "adopted" family. Many of them have been there for me more than some of my "DNA" family.

Try to stay positive, attitude is a major part of getting through this. You can do it!

I will keep you in my thoughts and prayers.
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

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

Re: Doc wants me to do the full 12 cycles

Postby AnnClare » Fri Aug 26, 2016 12:37 pm

As always, I'm so thankful for the responses & support. The kindness & understanding y'all express brings me to tears. (I know what y'all are thinking: what DOESN'T bring me to tears these days, right? :) ) But seriously, the folks here are the best. So compassionate and understanding.

On an unrelated note, on my way home from work yesterday, I was at a red light and the vehicle in front of me started to make a right turn.I followed suit, then she stopped short, so I tapped, literally TAPPED her bumper. My little 11 year-old Civic against an SUV. When I tell you there was NO evidence on her bumper, I'm not exaggerating. My car got the worst of it. Thankfully neither of us was hurt (I didn't have my foot on the accelerator, just took it off the brake, so no speed involved.) Yet she's filing a claim with my insurance company. Sheesh. What a day. The Mr. was not happy with me when I told him what happened. (As if it was on purpose. Really dude? My car is totally driveable & I'll get the bumper replaced when the rest of my life has settled down into some state of 'normal.' Kinda have bigger fish to fry at the moment!) I'm beginning to think I expect too much from people & need to be more self-sufficient and not rely on or expect hugs & "it's okay" when the proverbial shiz hits the fan. I get tired of myself at times, so I'm sure those around me must, too!

Anyway, it was just a crappy ending to a rather crappy day.

The good news is that today I woke up feeling optimistic. It's a new day, and I've got some of my favorite, lovely clients on the books. Tomorrow is Tx day, and like the past 9 times, I'll crush it. :D

Thanks again, guys, for your words of wisdom & understanding. Y'all rock!
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

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Annemiek
Posts: 304
Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

Re: Doc wants me to do the full 12 cycles

Postby Annemiek » Fri Aug 26, 2016 3:03 pm

Hi Anne,
Idon't visit as often as I should anymore, and when I do, I mostly read and symphetise and don't really know what to say.
But, I so recognize what you are saying, on folfox every single time i felt like I was not going to get through it, that the world is coming to an end, that I'm not able to finish this. I planned my bloody funeral the first two rounds!
The folfox had a terrible effect on my hormone balance, causing me to become depressed. Although with anti depressants the effect dampened I was still very very sad.
Frankly my sister told me that if I ate more healthily, I wouldn't gotten in this situation because she hadn't.... And although on one hand she said she'd help, everytime she was either too busy or the kids were ill or... She didn't come to the hospital once during my chemo. It feels like a sort of betrayal that even after a year I still can't forgive her for, yes I still talk to her, but i will not be able to forget.
Only thing I can say, you've come far already, you can do this! Take it two weeks at a time, plan things to spoil yourself in the week without the pump. The last bits are definitely the worst, but you are almost The! Only two more! Count the days, do something nice every day that makes you feel glad to be alive, spoil yourself as much as possible, go easy on yourself.

Good luck!!

Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

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

Re: Doc wants me to do the full 12 cycles

Postby AnnClare » Sun Aug 28, 2016 2:00 pm

Annemiek - I'm so glad to see that you're NED - that's awesome!

Not to step on any toes where family is concerned, but I think it's positively unconscionable that your sister essentially blamed you for your diagnosis. There have been numerous people who've had impeccable eating habits and an overall healthy lifestyle who have STILL had to tackle this nasty beast. I can't imagine her saying that and my heart goes out to you.

ANDRETEXAS - so sorry to hear of your former doctor's passing. For some reason, pancreatic seems to be one of the worst, and most fast-moving. Not sure why that is. Seems once people are Dx'd with it, it's too late. How tragic.

Beans Mama & AbbyDoo - thanks for the cheerleading. I know I HAVE to do this, and that I CAN do this. At this moment, the whiny bastard it pumping away, giving me my much-needed meds. Yesterday afternoon my infusion, I picked up my husband's b.day cake (apologizing once again that his birthday this year was a dud, on account of my sucky, but temporary, situation. He says he just wants me to be healthy & not to worry about the b.day business.) Then I hit up a local chain drive-thru for chicken tenders & fries. About half an hour after eating lunch, I fell asleep sitting up on the sofa. Sheesh. This stuff knocks you down. I think it was the Ativan crash. I slept off & on most of the afternoon. No worries as I imagine I needed the rest. Still a little tired today, but it's manageable. No strong, crazy food cravings like I'd been getting while 'juiced,' but that's fine by me. Had some eggs & toasted sourdough bread for breakfast - yum - then coffee, of course.

Enjoying a lazy Sunday at home. Ahhh. :)
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


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