Anyone with a Similar Experience?

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crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Anyone with a Similar Experience?

Postby crikklekay » Mon Aug 13, 2018 1:51 pm

We have had such a rollercoaster of a time with treatment and we're so close to the end, so I was wondering if anyone else has had a similar experience? Because I did the math and John has only received 5 full doses of Folfox6 out of the 12, is that abnormal?

His first dose was a little light to test how he'd react, then we had almost a month wait before treatment could start again between a staph infection/sepsis and CDIFF, and the next two treatments were reduced because of the CDIFF. We then had a good run at full strength until treatment # 8 where his hand/foot got really bad so they reduced the next two treatments so that could clear up, but then at treatment # 11 we were delayed again due to neuropathy and Oxaliplatin was removed for that treatment and the last one coming up. So his first 3 treatments weren't at full and it looks like his last 4 won't be either.

I'm a little worried that he wasn't able to get as many full doses as we would have liked, has anyone else had this sort of issue before?
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Anyone with a Similar Experience?

Postby susie0915 » Mon Aug 13, 2018 3:47 pm

I only had 6 rounds of Xelox, and my dosage levels of both the xeloda and oxi were reduced 2-3 times due to diarrhea. I think it is pretty common to have reductions when needed.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

User avatar
mobrouser
Posts: 174
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Anyone with a Similar Experience?

Postby mobrouser » Mon Aug 13, 2018 4:07 pm

My first 2 treatments with Folfox were at 100% oxaliplatin. 3rd and 4th were at 90% due to low neutrophils and platelets. 5th to 12th were at 75%, again, due to low neutrophils and platelets.

My oncologist debated about dropping the oxali all together prior to the 8th treatment because it is the flouracil that does the most effective job of killing cancer cells. However in the end we decided to maintain oxali at 75% for the balance and added neupogen injections to boost neutrophils.

We have to trust and accept that our bodies can only accept so much when it comes to chemo. There are many here who dropped oxali completely because of the side effects and quite possibly the number of patients who have dropped or taken lower dosages might exceed the number who have completed all treatments at 100%.

Wishing you both all the best for that last treatment.

8) mob
Last edited by mobrouser on Mon Aug 13, 2018 4:10 pm, edited 1 time in total.
CC Dx 102017 age 58
Lap. right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX start Jan/18 end Aug/8 (felt like a year)
CEA - 01/15/18-2.8; 07/29/18-5.3; 09/19-2.4; 03/20-2.7; 09/20-2.9
CT scan 08/18 - Clear; 10/19 - Clear; * 10/20 - 8mm & 6mm nodules in liver
PET scan 09/18 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Anyone with a Similar Experience?

Postby crikklekay » Mon Aug 13, 2018 4:45 pm

It's not the Oxy I'm worried about, I see a lot of people mentioning getting Oxy reduced or removed. It's the 5FU that has been reduced recently since it was causing the hand and foot, and then everything was reduced in the beginning thanks to MSSA/CDIFF. I just haven't heard of a lot of people getting the 5FU reduced so I was wondering if we're a weird case. Probably not, but it was on my mind and it's always nice to know you're not alone haha!
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Anyone with a Similar Experience?

Postby Lee » Mon Aug 13, 2018 5:23 pm

I think he should be okay, because it sounds like he has been getting some chemo. Butt my question is, if no 5FU and no more Oxaliplatin, what will he get for round 12?

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: Anyone with a Similar Experience?

Postby WarriorSpouse » Mon Aug 13, 2018 5:54 pm

Crik,

Reductions of dosage is normal. Every patient is different, and the reason why the Oncology department checks the blood work before treatment is to make sure the patient is being treated based on the patient's individual numbers; and reactions to the current treatment plan. It sounds like you guys are on the right path.

Good luck in the process going forward.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Anyone with a Similar Experience?

Postby NHMike » Tue Aug 14, 2018 5:39 am

I had two or three delays, one reduction of Xeloda and a few reductions of Oxaliplatin. The biggest benefit is from the first half of the treatment which is why there are trials with fewer cycles as the second half of treatment is the one that results in stronger side-effects, permanent neuropathy being the main concern.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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