Onc appt

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beach sunrise
Posts: 216
Joined: Thu Mar 05, 2020 7:14 pm

Onc appt

Postby beach sunrise » Wed Aug 12, 2020 12:00 am

Hi, had appt today. Asked about doing 8 days on 6 days off or 7 days on 7 days off with the xeloda. Answer was to keep going with 14 days on 7 days off as my bloodwork is not concerning. They always say "bloodwork looks good" (but really it doesn't to me anyway). OH and, weight is up to 100.5!!! Just 20lbs more and I'll be back at my normal weight. So, that's my update for today.
On aside: Looking forward to IVC tomorrow and appt with Lexington on Monday.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1
7-2 CEA 11.1
7-16 CEA 10.3
7-28 CEA 8.8
8-11 CEA 7.8
9-1 CEA 8.8
9-8 CEA 9
9-16 CEA 9
9-22 CEA 8.6
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

boxhill
Posts: 589
Joined: Fri Apr 06, 2018 11:40 am

Re: Onc appt

Postby boxhill » Wed Aug 12, 2020 5:10 pm

beachsunrise, I have 20 lbs I'll happily give you. :) Would you take 30? :D
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes 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
5/19 MRI stable/NED
Suspend treatment

User avatar
beach sunrise
Posts: 216
Joined: Thu Mar 05, 2020 7:14 pm

Re: Onc appt

Postby beach sunrise » Wed Aug 12, 2020 7:16 pm

YES YES I would!!!! Thank you for offering :D
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1
7-2 CEA 11.1
7-16 CEA 10.3
7-28 CEA 8.8
8-11 CEA 7.8
9-1 CEA 8.8
9-8 CEA 9
9-16 CEA 9
9-22 CEA 8.6
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

boxhill
Posts: 589
Joined: Fri Apr 06, 2018 11:40 am

Re: Onc appt

Postby boxhill » Thu Aug 13, 2020 12:02 pm

Now all we have to do is invent some way to effect this transfer and we will both be not only at a better weight but unimaginably rich! :lol: :lol:
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes 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
5/19 MRI stable/NED
Suspend treatment

NHMike
Posts: 2478
Joined: Fri Jul 21, 2017 3:43 am

Re: Onc appt

Postby NHMike » Fri Aug 14, 2020 6:40 am

You sound like you're doing great. Yes, your bloodwork does look scary but the Oncs say it's okay.

I gained weight during chemo which happens but most seem to lose weight through it.
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

User avatar
beach sunrise
Posts: 216
Joined: Thu Mar 05, 2020 7:14 pm

Re: Onc appt

Postby beach sunrise » Fri Aug 14, 2020 2:08 pm

Ya, I feel great! Bloodwork is scary concerning. I wanted to move to less days of xeloda for a lil bit anyway because WBC, RBC, neutrophils and platelets are taking a hit and afraid it may mean stop completely for a while to let them rise. My logic was 8 or 7 days on to give my counts enough time to recover but onc decided to continue with 14 days on 7 off and recheck the first of Sept. So ya, I'm concerned but what do you do!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1
7-2 CEA 11.1
7-16 CEA 10.3
7-28 CEA 8.8
8-11 CEA 7.8
9-1 CEA 8.8
9-8 CEA 9
9-16 CEA 9
9-22 CEA 8.6
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

NHMike
Posts: 2478
Joined: Fri Jul 21, 2017 3:43 am

Re: Onc appt

Postby NHMike » Fri Aug 14, 2020 2:38 pm

beach sunrise wrote:Ya, I feel great! Bloodwork is scary concerning. I wanted to move to less days of xeloda for a lil bit anyway because WBC, RBC, neutrophils and platelets are taking a hit and afraid it may mean stop completely for a while to let them rise. My logic was 8 or 7 days on to give my counts enough time to recover but onc decided to continue with 14 days on 7 off and recheck the first of Sept. So ya, I'm concerned but what do you do!


I let the onc worry about the numbers and I focused on the side-effects. You want the side-effects to clear up in the rest period. If they don't, you get a cumulative effect and they may become permanent. It's tricky to time it and you have to let your onc know what is happening with the side-effects. I have some permanent neuropathy and probably should have dropped the Oxaliplatin or taken another break week.
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

Rikimaroo
Posts: 316
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Onc appt

Postby Rikimaroo » Mon Aug 17, 2020 12:51 pm

Beach,

I am going to be starting xeloda/avastin this week, wednesday 7 days on 7 days off on the xeloda, every 3 weeks on avastin. I will let you know how it goes, but from what I understand the side effects are minimal to none, but I know I will have hand feet syndrome with the xeloda, as I did before with Chemoradiation, but that was higher dosage.

I will keep you posted on if any side effects doing it this way. I too would be concerned about CBC Panel testing, but let our Oncologist worry about that.

Keep strong and keep fighting, lets win!!

Riki
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
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

User avatar
beach sunrise
Posts: 216
Joined: Thu Mar 05, 2020 7:14 pm

Re: Onc appt

Postby beach sunrise » Mon Aug 17, 2020 4:08 pm

Thank you, Riki! Please let me know how its going with you.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1
7-2 CEA 11.1
7-16 CEA 10.3
7-28 CEA 8.8
8-11 CEA 7.8
9-1 CEA 8.8
9-8 CEA 9
9-16 CEA 9
9-22 CEA 8.6
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Rikimaroo
Posts: 316
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Onc appt

Postby Rikimaroo » Sat Aug 29, 2020 4:25 pm

Hi Beach,

I wanted to update your on how things are with Xeloda/Avastin. I started 8/19 got Avastin infusion in the AM and took 3 pills Xeloda that night, since I didn't take in the morning, was ok to skip one. Took it from 8/19 to 8/25 basically 7 days on 7 days off, I am on the break now from it. Other the the anxiety of taken the pills, no sides effects have been present. Well my hands are getting a bit darker from pigmentation, I am a brown man LOL....I don't know how it affects white people, or black people, but brown guys hands start to get hyper pigmented dark. It is so much easier to tolerate this then FOLFIRI or FOLFOX. I really hope and pray it works cause I am ok with this to keep everything at bay. Some folks stopped xeloda after a year or two and just do avastin, maybe that is an option down the road.

Hope your doing ok, hang in there we are all in the same boat, keep paddling :)

Riki
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
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

User avatar
beach sunrise
Posts: 216
Joined: Thu Mar 05, 2020 7:14 pm

Re: Onc appt

Postby beach sunrise » Sun Aug 30, 2020 11:22 am

Thank you for the update, Riki! Thanks for sharing the side effect of hands getting dark. I was wondering why lines on my palms are dark. No pigmentation on the back of my hands yet. I didn't have that with the pump.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1
7-2 CEA 11.1
7-16 CEA 10.3
7-28 CEA 8.8
8-11 CEA 7.8
9-1 CEA 8.8
9-8 CEA 9
9-16 CEA 9
9-22 CEA 8.6
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

NHMike
Posts: 2478
Joined: Fri Jul 21, 2017 3:43 am

Re: Onc appt

Postby NHMike » Sun Aug 30, 2020 12:33 pm

beach sunrise wrote:Thank you for the update, Riki! Thanks for sharing the side effect of hands getting dark. I was wondering why lines on my palms are dark. No pigmentation on the back of my hands yet. I didn't have that with the pump.


It's a common side-effect. Back of the hands and top of the toes.
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

User avatar
beach sunrise
Posts: 216
Joined: Thu Mar 05, 2020 7:14 pm

Re: Onc appt

Postby beach sunrise » Sun Aug 30, 2020 12:57 pm

Looking at my toes now, nothing there yet. LOL
Glad to know its common!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1
7-2 CEA 11.1
7-16 CEA 10.3
7-28 CEA 8.8
8-11 CEA 7.8
9-1 CEA 8.8
9-8 CEA 9
9-16 CEA 9
9-22 CEA 8.6
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Rikimaroo
Posts: 316
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Onc appt

Postby Rikimaroo » Thu Sep 03, 2020 11:04 pm

Beach,

Did they include Avastin with your Xeloda therapy? I noticed in your other post you mention CEA 8.8 which went up, CEA is such an anxiety booster. If you are not doing Avastin, perhaps that regimen can be added, hoping that it doesn't have any side effects which i why perhaps you didn't mention?

Let me know.

Riki
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
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

User avatar
beach sunrise
Posts: 216
Joined: Thu Mar 05, 2020 7:14 pm

Re: Onc appt

Postby beach sunrise » Fri Sep 04, 2020 1:46 am

Hey Riki, no avastin at this point. The PET will determine whats next or just continue on with xeloda.
How are you doing with xeloda 7 days on 7 off? Is it keeping cea stable, do you tolerate it better?
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1
7-2 CEA 11.1
7-16 CEA 10.3
7-28 CEA 8.8
8-11 CEA 7.8
9-1 CEA 8.8
9-8 CEA 9
9-16 CEA 9
9-22 CEA 8.6
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"


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