Is the Chemo Working?

Please feel free to read, share your thoughts, your stories and connect with others!
crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Is the Chemo Working?

Postby crikklekay » Thu Apr 05, 2018 10:19 am

I read so much about the side effects of Folfox and especially Oxaliplatin that when we went to my husband's first appointment in early February I came prepared. Thankfully after his first treatment all he had was a mild tingling in the back of his throat and tingling in his hands if he touched frozen things (pulling from the fridge didn't bother him but the freezer did). Other than that, some mild fatigue and constipation were it. Unfortunately he missed the next two treatments thanks to a MSSA infection in his port, but since then he has had 2 more treatments under his belt. They were a little less than the first one because they didn't want to suppress his immune system too much with the MSSA treatment, but he still only has had the mildest of symptoms. I thought this meant he was one of the lucky ones who just isn't as effected by the drugs, but friends and family keep questioning that if he isn't having horrible side effects does that mean it isn't working? Should we be worried instead of relieved that the chemo isn't making John completely miserable?
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

cbsmith
Posts: 87
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Is the Chemo Working?

Postby cbsmith » Thu Apr 05, 2018 4:20 pm

For folfox and folfiri I have never heard that the side affects were indicative of how successful the treatment is. When I had folfox I did all 12rounds with oxi and didn’t find it too bad but we had to reduce the oxi level a few times due to my neutrophil count being so low, and also the 5fu was lowered once. I think the reduced dosages made a big difference in how I felt.

When I switched to folfiri it was given at normal strength and I found it a lot worse than the folfox was.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Is the Chemo Working?

Postby Caat55 » Thu Apr 05, 2018 5:31 pm

crikklekay wrote:I read so much about the side effects of Folfox and especially Oxaliplatin that when we went to my husband's first appointment in early February I came prepared. Thankfully after his first treatment all he had was a mild tingling in the back of his throat and tingling in his hands if he touched frozen things (pulling from the fridge didn't bother him but the freezer did). Other than that, some mild fatigue and constipation were it. Unfortunately he missed the next two treatments thanks to a MSSA infection in his port, but since then he has had 2 more treatments under his belt. They were a little less than the first one because they didn't want to suppress his immune system too much with the MSSA treatment, but he still only has had the mildest of symptoms. I thought this meant he was one of the lucky ones who just isn't as effected by the drugs, but friends and family keep questioning that if he isn't having horrible side effects does that mean it isn't working? Should we be worried instead of relieved that the chemo isn't making John completely miserable?


I just had my first treatment two weeks ago. Side effects are gone, never experienced nausea. I am asking myself same questions? Afraid the next treatments will hit like a hammer.
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: Is the Chemo Working?

Postby Mercy110 » Thu Apr 05, 2018 6:53 pm

My mum has ten rounds of folfox and the side effects are accumulative. Side effects are tolerable at first then gradually develop. CEA is an better indicator for the usefulness of chemo.
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: Is the Chemo Working?

Postby Basil » Thu Apr 05, 2018 9:18 pm

My onc told me side effects have no correlation to the effectiveness of the chemo.

I did have greatly improved bowel function at about round three. As I hadn’t had surgery yet, my onc said that was a great sign. It was.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

lovelife789
Posts: 161
Joined: Thu Aug 24, 2017 5:28 am

Re: Is the Chemo Working?

Postby lovelife789 » Fri Apr 06, 2018 3:23 am

I had 13 rounds of FOLFOX, 6 rounds of 13 I did it with Erbitux. The Folfox part was very tolerable for me, I had a lot of vegetable juice to help with constipation and some meds for nausea. I think most of us who had Oxaliplatin had neuropathy and some first bite syndrome, but it wasn't too bad for me. Just the fatigue part got to me because I used to be very active.

By the 6th round, Dr already saw most of my tumors shrunk by 1/2 making me a candidate for operation compared to "let's get your life in orders" prior to chemo and CEA went from 80 to 2.5.

Now I'm 4 months since my last chemo round, 99% of the neuropathy are gone. I'm very lucky with little side effects (even with Erbitux, I had breakouts but they went away after chemo stopped) and an example of side effects have nothing to do with effectiveness of Chemo.
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

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

Re: Is the Chemo Working?

Postby crikklekay » Fri Apr 06, 2018 11:42 am

I'm so glad to hear that severity of side effects doesn't correlate with how well the treatment is working! I had read those symptoms can get worse over time with each treatment so I'm trying to keep a good record of how bad and how long they are compared to the previous treatment. His CEA levels were always low, I believe 2.something when the mass was originally found, but I'll ask the Oncologist if they've tested for it recently since I don't think that information is on the blood-work sheets we get. We also have a follow-up CT scan this month to see if the what they think is septic emboli are gone or if they're actually lung mets, as well as to see how his blood clot is doing, so fingers crossed the scan comes up showing improvement. We've had so many problems in the last three months it's hard not to feel like we're constantly cringing for the next shoe to drop.
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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot], Thomasnug and 122 guests