Sigh - Here we go again

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sinewaves
Posts: 16
Joined: Tue Dec 18, 2018 9:44 am

Sigh - Here we go again

Postby sinewaves » Thu Mar 18, 2021 8:59 am

Just posting to vent mostly.

Story is in sig, but I thought I was out of the woods after getting my permanent colostomy in 2019 and doing 4 (out of 6) rounds of XELOX. Doctor had said studies showed 4 treatments might be just as effective as 6. CT in December of 2020 showed growth in a lung nodule that originally they ruled was calcified but too small to worry about. After a biopsy they ruled a met from the removed tumor in my rectum. They moved the lung met and didn't see anything else, but my oncologist wants another 6 rounds of Xelox.

So getting ready to deal with chemo again, but this time I got a port put in instead of using the IV like before. Hopefully the port makes the infusion less painful, but not looking forward to the Oxaliplatin side effects. (First bite syndrome is the worst!)

I'm hopeful this is it, this time the cancer is really gone and it's not going to be another "oh wait, there's another growth we thought was nothing but is actually bad." However, I get with this disease, that's never out of the question. Lots of stage 4 survivors on here at least, and I'm thankful for this community.
DX @ 40, married, no children
11/2018 - Dx "MALIGNANT NEOPLASM of DISTAL RECTUM" (Stage 3a, T3N1M0)
1/7/ - 2/14/2019 - Radiation + Xeloda
4/26/2019 - APR surgery, removed rectum. Permanent colostomy.
5/10/2019 - Started Xelox through IV (didn't get port put in)
8/30/2019 - Ended Xelox after 4 rounds (out of scheduled 6)
1/2020 - Lung nodule found in CT, ruled met from previous malignancy, re DX stage 4
2/2020 - Nodule removed, recommended another 6 rounds of Xelox

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Sigh - Here we go again

Postby catstaff » Thu Mar 18, 2021 9:14 am

The port is far superior to IV. You will probably get advice about icing (feet, hands, mouth) during treatment. My husband didn't do that and probably should have.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

sinewaves
Posts: 16
Joined: Tue Dec 18, 2018 9:44 am

Re: Sigh - Here we go again

Postby sinewaves » Thu Mar 18, 2021 9:20 am

catstaff wrote:The port is far superior to IV. You will probably get advice about icing (feet, hands, mouth) during treatment. My husband didn't do that and probably should have.


Interesting - one of the side effects I had was cold sensitivity - even reaching my hand into the fridge sucked! I wonder how bad icing would be.
DX @ 40, married, no children
11/2018 - Dx "MALIGNANT NEOPLASM of DISTAL RECTUM" (Stage 3a, T3N1M0)
1/7/ - 2/14/2019 - Radiation + Xeloda
4/26/2019 - APR surgery, removed rectum. Permanent colostomy.
5/10/2019 - Started Xelox through IV (didn't get port put in)
8/30/2019 - Ended Xelox after 4 rounds (out of scheduled 6)
1/2020 - Lung nodule found in CT, ruled met from previous malignancy, re DX stage 4
2/2020 - Nodule removed, recommended another 6 rounds of Xelox

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Sigh - Here we go again

Postby catstaff » Thu Mar 18, 2021 10:03 am

You do it during the infusion. It reduces blood flow to the peripheral regions which reduces the accumulation of oxaliplatin in the nerves there, at least in principle. Same idea as ice caps to reduce hair loss for other types of chemo.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Sigh - Here we go again

Postby Claudine » Thu Mar 18, 2021 11:04 am

Oof I'm impressed you managed 4 rounds of xelox without a port! My husband had the first one (of 6) done that way and it was total agony. It went much better after he got a port installed, although I wish his onc would have prescribed only 4 rounds... The last two gave him permanent neuropathy in his feet, and the whole mop-up treatment didn't even work!
Good luck with this second batch!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

sinewaves
Posts: 16
Joined: Tue Dec 18, 2018 9:44 am

Re: Sigh - Here we go again

Postby sinewaves » Thu Mar 18, 2021 11:48 am

Claudine wrote:Oof I'm impressed you managed 4 rounds of xelox without a port! My husband had the first one (of 6) done that way and it was total agony


I think you were one of the people I ignored when I originally asked a few years back, and man did I regret it at the time. Thanks for the extra information and hopefully this is it!
DX @ 40, married, no children
11/2018 - Dx "MALIGNANT NEOPLASM of DISTAL RECTUM" (Stage 3a, T3N1M0)
1/7/ - 2/14/2019 - Radiation + Xeloda
4/26/2019 - APR surgery, removed rectum. Permanent colostomy.
5/10/2019 - Started Xelox through IV (didn't get port put in)
8/30/2019 - Ended Xelox after 4 rounds (out of scheduled 6)
1/2020 - Lung nodule found in CT, ruled met from previous malignancy, re DX stage 4
2/2020 - Nodule removed, recommended another 6 rounds of Xelox

DarknessEmbraced
Posts: 3815
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Sigh - Here we go again

Postby DarknessEmbraced » Sat Mar 20, 2021 12:37 pm

I'm sorry your cancer came back.*hugs* I hope your chemo goes well.*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! :)

CancerBum21
Posts: 29
Joined: Fri Feb 26, 2021 6:27 am

Re: Sigh - Here we go again

Postby CancerBum21 » Sun Apr 04, 2021 4:12 pm

sinewaves wrote:
catstaff wrote:The port is far superior to IV. You will probably get advice about icing (feet, hands, mouth) during treatment. My husband didn't do that and probably should have.


Interesting - one of the side effects I had was cold sensitivity - even reaching my hand into the fridge sucked! I wonder how bad icing would be.



I’m interested in learning more about iceing feet/hands. I’ve heard about it a few times on here. I asked my oncologist and phymarsist about it and they told me absolutely not to do it with FOLFOX. I’m starting FOLFOX in about a week.
34/M
DX:(Rectal Cancer) 2/15/21
Stage: T1N0M0
TAMIS Surgery 3/10/21
Pathology: T1NxM0 - LIV positive, 1/1 lymph positive Stage IIIA
FOLFOX 6 rounds
Radation & Xelota 5 weeks

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

Re: Sigh - Here we go again

Postby NHMike » Mon Apr 05, 2021 8:19 am

I did XELOX starting December 2017 in New Hampshire so it was pretty challenging. I think that keeping warmer clothes around during the day is helpful. The cold can affect your eyelids, mouth, throat, fingers and toes - those were the worst areas for me.

The chest port is a bit of a pain as it's hard to move your right arm above your shoulder. The doctor recommended against weights and tennis when I asked. The painkiller wears off after a day or two and you may need some OTC stuff for a few days afterwards.

In general, I didn't eat anything out of the refrigerator. I bought an electric kettle which was a great help. I just drank hot drinks. I bought ginger products as well to help deal with the nausea. Though you can ask for a prescription for stronger stuff.
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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