Anyone with Stage IVa just do Xelolda or 5-fu?

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Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby Achilles Torn » Mon Nov 20, 2017 4:15 pm

FOLFOX is hard on the liver so adding alcohol seems to be discouraged. I had a few beers during some cycles and it showed up in my liver numbers on bloodwork. That being said an occasional drink isn’t going to shift the needle that much.

It wasn’t until about cycle 4 that my Liver numbers started to trend up out of the norm so maybe it won’t be an issue for him.

Hope that helps
AT
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Mon Nov 20, 2017 4:26 pm

Thanks, everyone! Much appreciated!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby cbsmith » Mon Nov 20, 2017 5:52 pm

When I was on folfox and now I’m folfiri my oncologist said I could have a couple drinks at the end of my 2week cycle if I wanted. She advised not drinking heavily and not doing it during the first part of my cycle when I was getting the actual drugs, not that I would have wanted to then.

I do have the odd drink or two as she approved, sometimes it takes my mind off everything, sometimes I just crave something to drink that doesn’t taste funny. I find my taste of water for a while after every treatment tastes different, but for some reason beer always tastes normal.
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

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Wed Nov 22, 2017 12:19 pm

Husband decided he wouldn't bother, for now. He's thankfully not the kind of person who "deals" with stress by drinking. He's at the cancer center now having infusion #3. Oncologist says his bloodwork looks great and he seems to be handling this one well, so far.

3 down, 1 to go (until the Spring, maybe)
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby LPL » Wed Nov 22, 2017 6:04 pm

Hi mpbser,
Your update sounds very good :-)
Best of luck finishing this ’4 chemo’ treatments.
To answer your question, my DH was not given any advice to Not drink alkohol during his treatments.
Perhaps it is different with folfox compared to the xeloda + oxi? Or maybe it is different in France :wink: We normally have vine to our dinner and hubby did not change that during the treatment periods.
Kind Regards /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Sat Dec 02, 2017 3:57 pm

Just popping in for a quick update. Husband will be completing Cycle 3 on Wednesday and he is doing really great. The only noticeable side effect at the moment is darkness under his eyes. He LOOKS exhausted but he claims to be feeling great. He has loads of energy the past couple of days. He still works 6 days a week and isn't showing any signs of slowing down anytime soon.

I've been making sure he gets supplements that are designed specifically to align with his chemo rounds, so maybe that is helping with his energy level.

He had blood drawn for a doctor appointment he has coming up (had to reschedule due to his work) and it all looks really wonderful.

Very interestingly, his LDL was ~60 and HDL also was ~60. I have never seen such low numbers in my life!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby LPL » Sat Dec 02, 2017 5:18 pm

Hi mpbser,
Your update sounds good :)
I presume the worry about chemo is not so bad now when everything seams to go well. Great that it doesn’t affect his ability to work!
So what is the reference numbers at your lab for LDL & HDL? Are your DH’s numbers normal?
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby LeonW » Sat Dec 02, 2017 5:56 pm

mpbser wrote:. . . Husband will be completing Cycle 3 on Wednesday and he is doing really great . . .

Thanks for the update. Congrats that round 3 is almost under the belt.
Hope that things continue to be manageable and that you can celebrate more victories.
Best wishes, L
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

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

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby NHMike » Sat Dec 02, 2017 6:41 pm

mpbser wrote:Just popping in for a quick update. Husband will be completing Cycle 3 on Wednesday and he is doing really great. The only noticeable side effect at the moment is darkness under his eyes. He LOOKS exhausted but he claims to be feeling great. He has loads of energy the past couple of days. He still works 6 days a week and isn't showing any signs of slowing down anytime soon.

I've been making sure he gets supplements that are designed specifically to align with his chemo rounds, so maybe that is helping with his energy level.

He had blood drawn for a doctor appointment he has coming up (had to reschedule due to his work) and it all looks really wonderful.

Very interestingly, his LDL was ~60 and HDL also was ~60. I have never seen such low numbers in my life!


It sounds like things are well under control with his cancer and I attribute that to all of your hard work in the early days and I'm sure that it's still a fair amount of work managing things.
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

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Sun Dec 03, 2017 6:46 am

Thanks, everyone. Re: the question about his labs, his total cholesterol was 150 mg/dL (RANGE < 200 mg/dL), LDL was 61 mg/dL (<100 Optimal), HDL was 65 mg/dL (RANGE 40-60 mg/dL). I don't understand why his medical center uses that range for HDL as I believe the higher the better for HDL. My doctor uses a bottom threshold of some number like 90 or 100 for HDL. If mine falls under that, he reminds me of the risk associated with low HDL. I will be looking at my medical records later today to see if the measuring unit is mg/dL because I am very curious about this rather wide discrepancy.

Chemo is said to be hard on the liver... and since the liver is the CPU for cholesterol, my husband's numbers are showing one of the ways chemo can affect it. Very interesting!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

sdino
Posts: 85
Joined: Tue Mar 28, 2017 5:32 pm

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby sdino » Sun Dec 03, 2017 12:25 pm

Wife was on Xeloda (3000 mg/day) + Avastin IV since 8/2/17. Been through 6 full treatments. CT scan showed slight growth in lung mets.
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: 25+ Bilateral ranging 4mm-5.0cm
MSS, KRAS-G12D; TP53
iTCR TIL Trial NCT03412877 4/19 to 7/19 Off trial, - Sept. 2019 TIL trial NCT01174121
CT Scans: 7/2020 lung met shrinkage 36%, 3 lung mets left, two Liver mets destroyed by TILs
Brain tumor removal 3/2020
CEA:16-11/16; 5 -9/18; 63 -8/19; 1 -1/20; 0.8-5/20

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Mon Dec 11, 2017 5:46 pm

Just stopping in for a quick update. Husband saw his primary care doctor today. He wasn't alarmed by his A1C being a 7 and attributed the diabetes setback primarily to the chemo. Husband has gone off his strict diet somewhat in the past couple of months, but I suppose not horribly. All the rest of the bloodwork is looking phenomenal for someone who has had three rounds of chemo. His doctor was extremely optimistic and told husband he is going to beat this.

Husband has his fourth infusion on Wednesday, just in time for 18 degree F temperatures to hit our region. He had cold sensitivity the last round which lasted a few days, so he will be very careful this round. I have reserved the day to take care of him and the rest of week for my work will be kept light.

Also on a positive note, his work has brought him closer to home for the next couple of weeks so he won't have to commute 3 hours every day, 6 days a week for work. I feel like god is protecting him, despite my religious skepticism.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby NHMike » Mon Dec 11, 2017 6:27 pm

mpbser wrote:Just stopping in for a quick update. Husband saw his primary care doctor today. He wasn't alarmed by his A1C being a 7 and attributed the diabetes setback primarily to the chemo. Husband has gone off his strict diet somewhat in the past couple of months, but I suppose not horribly. All the rest of the bloodwork is looking phenomenal for someone who has had three rounds of chemo. His doctor was extremely optimistic and told husband he is going to beat this.

Husband has his fourth infusion on Wednesday, just in time for 18 degree F temperatures to hit our region. He had cold sensitivity the last round which lasted a few days, so he will be very careful this round. I have reserved the day to take care of him and the rest of week for my work will be kept light.

Also on a positive note, his work has brought him closer to home for the next couple of weeks so he won't have to commute 3 hours every day, 6 days a week for work. I feel like god is protecting him, despite my religious skepticism.


The low in my area this week is forecast at 7 degrees. Then it warms up into the 20s. I'm pretty curious as to how this is going to feel as we're looking at a pretty cold winter and I typically clear off one roof after snowstorms. Also, clearing ice off of windshields will be interesting. I'm also planning on working from home a lot (my commute is only 20 minutes) because my office becomes an echo chamber of coughing when there's a cold or flu going around. I just got a new project that's going to keep my quite busy for the next two months and I'll need to move my home office because it's in an unheated part of the house. Or get a space heater.

There are a lot of people that commute from my area into Boston every day. It's a one-hour trip with no traffic and probably two with traffic in busy times and worst-case three. I really have no idea as to how people do that kind of commute but they do. I've seen it in my trips to Dana Farber, Brigham and Women's and Mass General. Fortunately the trips aren't very frequent and hopefully they will be fewer going forwards.

Your husband has made remarkable progress.
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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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby susie0915 » Mon Dec 11, 2017 6:55 pm

NHMike wrote:
mpbser wrote:Just stopping in for a quick update. Husband saw his primary care doctor today. He wasn't alarmed by his A1C being a 7 and attributed the diabetes setback primarily to the chemo. Husband has gone off his strict diet somewhat in the past couple of months, but I suppose not horribly. All the rest of the bloodwork is looking phenomenal for someone who has had three rounds of chemo. His doctor was extremely optimistic and told husband he is going to beat this.

Husband has his fourth infusion on Wednesday, just in time for 18 degree F temperatures to hit our region. He had cold sensitivity the last round which lasted a few days, so he will be very careful this round. I have reserved the day to take care of him and the rest of week for my work will be kept light.

Also on a positive note, his work has brought him closer to home for the next couple of weeks so he won't have to commute 3 hours every day, 6 days a week for work. I feel like god is protecting him, despite my religious skepticism.


The low in my area this week is forecast at 7 degrees. Then it warms up into the 20s. I'm pretty curious as to how this is going to feel as we're looking at a pretty cold winter and I typically clear off one roof after snowstorms. Also, clearing ice off of windshields will be interesting. I'm also planning on working from home a lot (my commute is only 20 minutes) because my office becomes an echo chamber of coughing when there's a cold or flu going around. I just got a new project that's going to keep my quite busy for the next two months and I'll need to move my home office because it's in an unheated part of the house. Or get a space heater.

There are a lot of people that commute from my area into Boston every day. It's a one-hour trip with no traffic and probably two with traffic in busy times and worst-case three. I really have no idea as to how people do that kind of commute but they do. I've seen it in my trips to Dana Farber, Brigham and Women's and Mass General. Fortunately the trips aren't very frequent and hopefully they will be fewer going forwards.

Your husband has made remarkable progress.

Mike I have a big walk in closet that gets so cold in the winter it's over the garage and the vent in there doesn't do a great job. We got an edenpure space heater and it does a great job. My closet it 24 ft long and I can feel the heater all the way at the other end. Before it was like an ice box. Maybe it would be good for your office this winter. I don't think it's very expensive. Wear warm slippers, boots hats and gloves when you're outside. You may want to cover your face if you're out in the cold for long.
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

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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 Stage IVa just do Xelolda or 5-fu?

Postby susie0915 » Mon Dec 11, 2017 6:56 pm

mpbser wrote:Just stopping in for a quick update. Husband saw his primary care doctor today. He wasn't alarmed by his A1C being a 7 and attributed the diabetes setback primarily to the chemo. Husband has gone off his strict diet somewhat in the past couple of months, but I suppose not horribly. All the rest of the bloodwork is looking phenomenal for someone who has had three rounds of chemo. His doctor was extremely optimistic and told husband he is going to beat this.

Husband has his fourth infusion on Wednesday, just in time for 18 degree F temperatures to hit our region. He had cold sensitivity the last round which lasted a few days, so he will be very careful this round. I have reserved the day to take care of him and the rest of week for my work will be kept light.

Also on a positive note, his work has brought him closer to home for the next couple of weeks so he won't have to commute 3 hours every day, 6 days a week for work. I feel like god is protecting him, despite my religious skepticism.

I'm so glad he's doing well. It must've felt good to hear optimism from his doctor.
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


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