Rectal cancer (Stage 3A) diagnosed late June 2017

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hawkowl
Posts: 64
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby hawkowl » Fri Dec 01, 2017 1:39 am

Hi NHMIKE...this truly is an epic thread! I have not been all that active on this forum (utilize the Facebook groups a lot more). Wishing you well!

I saw that you had some concerns about your ostomy/appliance on the w/w thread. There are some great FB groups that have helped me a lot with those issues (permanent colostomy for more than 2 years)...including Stoma City, and many others as well.
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Dec 01, 2017 8:10 am

hawkowl wrote:Hi NHMIKE...this truly is an epic thread! I have not been all that active on this forum (utilize the Facebook groups a lot more). Wishing you well!

I saw that you had some concerns about your ostomy/appliance on the w/w thread. There are some great FB groups that have helped me a lot with those issues (permanent colostomy for more than 2 years)...including Stoma City, and many others as well.


That's not a bad idea. I just hate the concept of Facebook. I might have to set up an account - they seem to have monopolies on a lot of things.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

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O Stoma Mia
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Joined: Sat Jun 22, 2013 6:29 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby O Stoma Mia » Fri Dec 01, 2017 9:05 am

NHMike wrote:Met with the Oncologist ... He suggested 4-8 rounds of Folfox or Capox..

Just a note to say that 4 rounds of Folfox is not equivalent to 4 rounds of Capox. This is because Folfox infusions are given every two weeks while Capox infusion are given every three weeks. Thus., Capox infusions have to be 1.5 times the level of Folfox infusion in order for the two regimens to deliver the same amount of chemo over a fixed 6 month period.

In sum, 4 rounds of Folfox will last 2 months, while 4 rounds of Capox will last 3 months.
Last edited by O Stoma Mia on Fri Dec 01, 2017 5:19 pm, edited 1 time in total.
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How to Find a Board-Certified Surgeon
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How to interpret a Pathology Report
viewtopic.php?f=1&t=51436&p=399172#p399172

Understanding TNM Staging
http://www.cancer.net/cancer-types/colo ... cer/stages

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Dec 01, 2017 9:16 am

My local oncologist is out of the office until the 9th so the earliest start would be the 7th week. That's later than I'd like to get started.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Dec 01, 2017 10:20 am

Bag stuff: there's a color indicator on the vent. If it's black, then it doesn't work. I think that it turns black when it gets wet and that can happen if I take a shower and don't cover the vent or if it gets wet from the contents of the bag (can happen when I'm asleep). Once the vent is clogged, I have to be a lot more careful with the bag to ensure that pressure doesn't build up from gas. I can't think of a solution to prevent this outside of sleeping on a chair or with my upper body elevated. That was nice about the hospital beds.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Dec 01, 2017 10:30 am

I was looking on the Convatec page and saw the ActiveLife One-Piece Drainable Pouch. Any comments on this for running? I think that a one-piece would be better for activity as you don't have as much of a protrusion. I think that some kind of belt or wrap would be needed as well.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

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susie0915
Posts: 550
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby susie0915 » Fri Dec 01, 2017 3:19 pm

NHMike wrote:I was looking on the Convatec page and saw the ActiveLife One-Piece Drainable Pouch. Any comments on this for running? I think that a one-piece would be better for activity as you don't have as much of a protrusion. I think that some kind of belt or wrap would be needed as well.

I never ran while I had my ileostomy since I only had for a few weeks, but I would think some type of compression piece would be necessary. I wear a band that Velcro's around my waist while lifting weights and doing abdominal exercises due to a hernia. Maybe something like that.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sat Dec 02, 2017 8:00 pm

I took a picture of my stoma last time I changed it and used the picture to make the whole smaller using the original template and the picture on my phone. Today I printed out the picture to life-size (I put a ruler next to the stoma in the picture and printed with scale adjustments until I got it life-sized). Then I drew a 1/8 inch border around the stoma and am going to cut it out and then draw it on a piece of tag paper and then draw it on a wafer. I'll take another picture on the bag change in the morning, compare it to the current template and make a new template if it has further shrunk for the next bag change. I think that I'm going to go from changing the bag every five days to every three days as I believe that will cut down on skin irritation and also cut down on the filter getting clogged.

On an unrelated note, I was looking around for Campbell's Biology. We should have two copies at home but I can't find either. I'd need to go through that to have a base understanding of biology to better understand the papers that I'm reading without asking my son for explanations all the time. I have a textbook on genetics around somewhere too. I think that I'd need a textbook on immunology and Cancer Biology eventually. But that's getting ahead of myself. Getting through Campbell's Biology is a daunting task at my age.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

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O Stoma Mia
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Joined: Sat Jun 22, 2013 6:29 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby O Stoma Mia » Sun Dec 03, 2017 2:18 am

NHMike wrote:I was looking on the Convatec page and saw the ActiveLife One-Piece Drainable Pouch. Any comments on this for running? I think that a one-piece would be better for activity as you don't have as much of a protrusion. I think that some kind of belt or wrap would be needed as well.

.If you change to a one-piece stoma bag, are you going to have to modify your stoma-bag change instructions? When I had a stoma bag, it was a one-piece Convatec bag, along with a StomaPlex belt https://www.stomaplex.com/ostomy-belts/. I walked, swam, played tennis, and did fast walking on a treadmill, but I didn't do any running.
    NHMike wrote:
    Changing stoma and wafer
    Supplies:

    1 Wafer
    1 Stoma Bag
    1 Tube Paste
    6 Packets of barrier wipes
    1 Disposable Glove
    Scissors
    Template
    Clear flexible bandage for wound
    Bandaids
    4 Face Cloths
    Toilet Paper
    Empty wastebasket
    2 Small Trash Bags

    Step 1: Remove Old Bag and Wafer and Clean Area
    - Peel off the old wafer.
    - Clean with facecloth.
    - Peel off old paste (stool may come out while cleaning). May need to rub with dry towel to get paste off.
    - Use wet towel to go around stoma; it may take a few passes.

    Step 2: Prepare Tracings with Template
    - Open Wafer Package.
    - Check template alignment and sizing.
    - Place template face up (ink facing me) on wafer, open in package. Template has top labeled.
    - Trace with a pen into the backing.
    - Cut with trace facing me.
    - Draw a T at the top.

    Step 3: Prepare the Stoma Wafer and Bag
    - Attach the bag to the wafer and press the ring firmly.
    - Close the bag outlet with Velcro.
    - Peel off the wafer paper.
    - Apply thin layer of paste from the perpendicular tube around the ring.
    - Flatten with tube tip.

    Step 4: Clean skin around stoma and create skin barrier
    - Use barrier wipes to clean the skin around the stoma and create a skin barrier.

    Step 5: Install the stoma
    - Before removing the backing, put on the stoma.
    - Hold it down for at least two minutes for the paste to warm up and attach well to the skin.
    - Remove the backing while pressing against the skin.
    - Press all the way around to ensure a good seal.
Useful Links:

How to Create a Signature
https://coloncancersupport.colonclub.co ... 97#p421597

How to Find a Board-Certified Surgeon
viewtopic.php?f=1&t=52349&p=410280#p410280

How to interpret a Pathology Report
viewtopic.php?f=1&t=51436&p=399172#p399172

Understanding TNM Staging
http://www.cancer.net/cancer-types/colo ... cer/stages

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sun Dec 03, 2017 7:35 am

I've been modifying my instructions every bag change as I see optimizations or ways to reduce errors and I may be in this mode for a while. The latest changes will be taking a picture of the stoma with a ruler next to it to make accurate templates for the next change.

I like the idea of the Convatec ActiveLife product but it uses clips instead of the Velcro closure which I really like. So I'll need to ask them about that. I was thinking of getting a StealthBelt for running and tennis. That MeetAnOstoMate site also has a forum dedicated to active life (sports, etc.) and I need to look through that.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sun Dec 03, 2017 7:42 am

I grabbed Campbell's Biology, Eighth Edition last night and started reading and I was rather amazed at how easy it is to get through. For some reason, I thought that Biology, Chemistry and Physics were difficult from my recollection in high-school and college. It occurred to me that I'd probably need to read through Chemistry and Physics as well for a decent science base so I dug around the home library for a Chemistry book this morning and, of course, we have Physics for Scientists and Engineers with a choice of Serway or Fishbane. I would much prefer to self-study on an iPad as the Chem+Bio books weigh 13.6 pounds together but it would likely cost about $500 for a current set of eBooks and $500 for the iPad.

Here's the list of subjects that I came up with:

Physics I and II
Principles of Biology I and II
Chemistry I and II
Organic Chemistry I and II
Principles of Cell Biology
Genetics
Biochemistry
Molecular Structure and Metabolism
Cells to Systems
Cancer Biology
Advanced Cancer Biology
Cancer Epidemiology
Advanced Cell Biology
Cell Cycle and Apoptosis
Drug Discovery and Development
Infectious Diseases/Inflammation and Cancer
Cancer Biomarkers and Therapeutics
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

rockhound
Posts: 55
Joined: Fri Jul 14, 2017 5:00 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby rockhound » Sun Dec 03, 2017 10:08 pm

susie0915 wrote:
NHMike wrote:I was looking on the Convatec page and saw the ActiveLife One-Piece Drainable Pouch. Any comments on this for running? I think that a one-piece would be better for activity as you don't have as much of a protrusion. I think that some kind of belt or wrap would be needed as well.

I never ran while I had my ileostomy since I only had for a few weeks, but I would think some type of compression piece would be necessary. I wear a band that Velcro's around my waist while lifting weights and doing abdominal exercises due to a hernia. Maybe something like that.


I ran a bit with my ileostomy and used a compression piece- basically a spandex band like what women wear sometimes while pregnant (belly band/tummy sleeve I guess- my wife recommended). It was great and keep everything in place nicely. I only used one-piece drainable pouches the whole time also (coloplast mio worked best).
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI-H
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - Clear CT

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Mon Dec 04, 2017 11:36 am

rockhound wrote:
susie0915 wrote:
NHMike wrote:I was looking on the Convatec page and saw the ActiveLife One-Piece Drainable Pouch. Any comments on this for running? I think that a one-piece would be better for activity as you don't have as much of a protrusion. I think that some kind of belt or wrap would be needed as well.

I never ran while I had my ileostomy since I only had for a few weeks, but I would think some type of compression piece would be necessary. I wear a band that Velcro's around my waist while lifting weights and doing abdominal exercises due to a hernia. Maybe something like that.


I ran a bit with my ileostomy and used a compression piece- basically a spandex band like what women wear sometimes while pregnant (belly band/tummy sleeve I guess- my wife recommended). It was great and keep everything in place nicely. I only used one-piece drainable pouches the whole time also (coloplast mio worked best).


I requested a sample. I requested them from other places too but didn't hear anything back. How does the sample request process work (as in the process and how long it takes)? Keep the product suggestions coming.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Mon Dec 04, 2017 11:39 am

The irritation isn't a problem today and I assume that's because of the new application of barrier wipes yesterday. But there's another problem that's fairly major. When I sleep, the stuff in the bag seems to go down the other opening of the stoma and comes out the rear end. It has happened recently as well but I think that I've figured out what's happening now. This is not the same as the mucus that comes out from time to time but basically the bag contents. I am going to sleep in a recliner until I can figure out how to stop this from happening. The recliner will keep the bag with the bottom down so that it doesn't pool around the stoma.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Mon Dec 04, 2017 1:29 pm

I managed to get an appointment with the backup oncologist for Thursday so maybe we can get started on week 7. The chest port surgery would be outpatient and take about three hours (I think that half of that is paperwork and preparation). The backup works with my regular local oncologist so I guess that I'd be back with him when he comes back from vacation. He's booked for appointments into late December. I'm going to call the Stoma Nurse next. I had a meeting with her at Pre-Op and right after surgery though I wasn't awake when the appliance was installed and don't know who did it. The person that provided my instruction was a regular floor nurse. So I'm not sure if the Stoma Nurse recommends the paste or not. But I'll ask her if I can get her on the phone.

Edit: All 3 Ostomy nurses are out today but one will be back tomorrow morning so I'll call her then.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).


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