Chemo has caught up to me yall

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AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Chemo has caught up to me yall

Postby AmyG » Sat Jul 13, 2019 7:23 pm

Holy crap. I'm so tired it's beyond stupid.

Normally, the 2 days after disconnect I'm tired but bounce back 100% come day three. Round 5 didn't cooperate that well and 6 isn't much better. All I want to do is be in bed. Unfortunately, that's not really an option with our household.

CT on Wednesday, then round 7 the following Monday. I'm really hoping they tell me no chemo for a month so i can prepare for liver resection. This is just getting ridiculous!

Tell me it gets better. Or I'm almost there. Or I'm a giant whiney baby. Anything will work at this point. :lol:
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

debb
Posts: 191
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: Chemo has caught up to me yall

Postby debb » Sat Jul 13, 2019 9:39 pm

Ugh! Sorry for you!!! The effects are cumulative so not surprising that you’re down for a bit longer as treatment progresses....but you are definitely NOT a big baby!!

I hope you get a break after your CT...breaks always helped me. And if someone offers you help, please take it. That was hardest for me.

You are one tough mama, and you got this!!
2008, Stage 3C, age 42, mom of 4
Folfox 9/08-2/09
Met to right ovary, both removed 7/10
HIPEC 8/10
VATS 7/12, right lung
10/14 Stivarga clinical trial
3/15-7/15 Folfiri & avastin
8/16 Folfiri & avastin
Break! 10 months of freedom
1/18 - 4/23 many Folfiri & Avastin
6/23 Clinical trial REGN7075. Progression
8/23 radiation to femurs and L4
9/23 rechallenged Folfox. Allergic reaction at 4th infusion
11/23 will start Bot/Bal

User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Chemo has caught up to me yall

Postby ginabeewell » Sat Jul 13, 2019 9:47 pm

I wound up with a break after 5 rounds of chemo. I felt much like you do now - I recall we went to Hong Kong for a long weekend around then and my therapist thought I was nuts. By 3 pm each day I would come back to the hotel to sleep.

But chemo was never as tough once I resumed (about 7 weeks later).

Another friend of mine had her doctor tell her that the 5th or 6th treatment is the worst and it gets easier after that.

Now is a good time for outsourcing what you can - MealTrain, accepting offers of help, hiring someone to do what you cannot etc. We ended up hiring a full time nanny even though the kids are at school, and having someone for a few extra hours a day has been a godsend during this time in my life.

Be gentle with yourself. Chemo is no joke.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: Chemo has caught up to me yall

Postby macpudd » Sat Jul 13, 2019 9:55 pm

Hi Amy am sorry to hear how hard it is, i will think as much positive for you as i can. I had 12 cycles of folfox, prblems initialy because of surgey infection but last few cycles left me so tired i think i have some idea of how you feel. Am on Avastin and Lomustine now and it also is part of extreme tiredness. Anyway when I finished folfox , apart from some neuropathy my energy levels quckily came back over the next few months so hopefully yours wii return quckily to.
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

jens22
Posts: 1013
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

Re: Chemo has caught up to me yall

Postby jens22 » Sat Jul 13, 2019 10:21 pm

Lots of fluids and you will feel better. Also talk to your oncologist...they might need to lower the dose a bit. I had my bolus of 5fu reduced before the pump dose. That helped a lot.
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 10 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 57 Mom of 3 boys.

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Chemo has caught up to me yall

Postby Rock_Robster » Sat Jul 13, 2019 10:32 pm

Yep #5 and 6 were definitely the toughest for me - I just didn’t really bounce back fully, at least not until well into the second week. Fortunately after that they let me have my 4 weeks off then liver resection! Will see how #7 is when I come back for adjuvant...

Good luck!
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Chemo has caught up to me yall

Postby AmyG » Sun Jul 14, 2019 6:59 am

Whew.

Thanks for the insight, glad to know this is normal and I'm not just a big wuss. :lol:

I've felt much more human yesterday and today is starting off pretty well so I have high hopes. But I wouldn't be opposed to an afternoon nap!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Chemo has caught up to me yall

Postby Rikimaroo » Sun Jul 14, 2019 10:45 am

Chemo sucks, it just sucks!! I hate it and debating if I want to do it anymore. It is ridiculously hard, makes you super tired, vomitting (FOLFIRI) and just overall just feeling crappy. Sometimes I wonder if its worth it. Taking natural stuff might help, but no statistics on that helping :(...I Just hate chemo!!
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Pyro70
Posts: 156
Joined: Mon Jan 21, 2019 4:25 pm

Re: Chemo has caught up to me yall

Postby Pyro70 » Sun Jul 14, 2019 3:10 pm

You could have a cumulative impact on your blood counts. After about 9 rounds of FOLFOX my hemoglobin was low and made me tired. One blood transfusion helped take care of it. Check your CBC and ask for blood if you think it could help.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

kiwiinoz
Posts: 1170
Joined: Thu Jan 03, 2013 11:44 pm

Re: Chemo has caught up to me yall

Postby kiwiinoz » Sun Jul 14, 2019 6:10 pm

Hi Amy,
I remember that on FOLFOX round 7 really started to hit me. I felt the lowest at that point, I started to loose sensation badly due to the neuropahthy, I couldn't run as I was so tired, I got a really bad case of GI issues and had diarrhea, which turned into vomiting and I vomitted for 2 days straight and ended up having to get IV Fluids as I was so weak.
However it turned a corner after that, and whilst chemo still sucked, it was never as bad as that 7th round.
I hope you get a break and feel better after this one Amy.
Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Chemo has caught up to me yall

Postby boxhill » Sun Jul 14, 2019 7:56 pm

Yeah, I remember sometime around round 8 when people would ask how I was feeling, I'd say "You know, I have to admit that this is starting to wear on me."

it's cumulative. At a certain point, you start to bounce back less--and less rapidly--than in earlier rounds, even if you have been lucky up til then. But eventually it does get better. Then you can start to feel the effects of the next kind of treatment, such as immunotherapy, LOL!

As I think I said elsewhere, I used to bound into the infusion center like the youngest and healthiest person there. Now, on Keytruda, my much longed-for miracle drug, I'm hobbling in like a crippled old lady.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Chemo has caught up to me yall

Postby AmyG » Mon Jul 15, 2019 10:46 am

So I am feeling much better today. Nicholas is up every morning around 0500, so apparently I'm an early riser now. :lol:

Took him for his 4 month appointment today, he's over 16 lbs, no wonder I can't hold his fat self after disconnect! :shock: His pediatrician is well aware of my diagnosis and asked me how I kept such a positive attitude. I'm like dude, my life is wonderful. Cancer is just a bump in the road. I have a husband that adores me, 8 wonderful, happy, healthy children and some dogs that think I'm the best thing on earth. Plus we have a thriving garden this year! Why in the world wouldn't I be living every day to the fullest? Other than the days that I'm really tired..... :lol:
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Gloriamazz
Posts: 89
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Chemo has caught up to me yall

Postby Gloriamazz » Mon Jul 15, 2019 11:30 am

So sorry amy stay strong the lord has you in his arms.

Post your ct result finger crossed
June, scope
2.6 adenocarcinoma
8/8/18 APR
Stoma
March 19 CT 2 lung N.
April 29, 2019 Pelvis TMR 1.8 x 1.8 cm

7/22 - 7/29/ 2019 5 radi
no chemo 10 mo.
6-10-19 Folfox, Oxill
2nd Irinotecan , Folferi, FU5
12/14/2020, off folferi lung nods new
break going on pill drug Jan 2021
1/19/22, appt 2nd opinion wait to start Vectivix
2 mos no CHEMO
MMR
MSI/stable/HER2
1/2/2021 - round 1 Vectibix
Oligometastatic (NSCLC)

k0chr
Posts: 20
Joined: Wed Jun 05, 2019 5:08 pm

Re: Chemo has caught up to me yall

Postby k0chr » Mon Jul 15, 2019 2:03 pm

I'm really new here, but from reading a bunch of your posts, Amy, I can tell that you're certainly not a wimp or whiner. Your amazingly positive attitude is one of the things that gives me hope that I can do this on the days when I'm so pooped that I barely make it out of bed. I can't imagine doing this with a 4 month old!

Anyway, I read further down the thread and see that you're feeling better. I'm glad and hope that it keeps up. :D
DX: 54
05/24/19 DX: CC rectosigmoid adenocarcinoma
06/07/19: laparascopic
5.8cm tumor, clear margins
G2 IIIA T2N1AM0
1/10 positive
07/08/19: starting FOLFOX, 12 cycles
08/14/19: gallbladder removed
08/19/19: DVT left internal jugular vein, subclavian, & axillary veins, daily Lovenox injections

User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Chemo has caught up to me yall

Postby ginabeewell » Mon Jul 15, 2019 5:40 pm

AmyG wrote:So I am feeling much better today.


I remember telling my therapist that I started to recognize a pattern - a side effect (or two, or three) would get me down for a while, and I'd feel like crap both physically and emotionally. But always at some point I would start to feel a little bit better. She encouraged me to find a mantra to remind myself of this and out of nowhere into my head popped: "You know how to bounce!"

it looks like you know how to bounce, too. Just keep reminding yourself of that when you start to feel run-down. Sometimes, bouncing requires that you hit the ground - hard. But it's not forever.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts


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