Surgery Pathology Report

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Rock_Robster
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Location: Melbourne, Australia

Re: Surgery Pathology Report

Postby Rock_Robster » Sun Sep 22, 2019 9:22 pm

NHMike wrote:
Rock_Robster wrote:
NHMike wrote:I have hand and foot in my hands. But it is very mild. It is a bit worse in cold weather but it doesn’t stop me from doing what I did before diagnosis

Hi Mike, sorry to hear you’re still dealing with this. Just to check - you definitely mean hand & foot syndrome, not neuropathy?


Yup. I have neuropathy in my toes and it's a different feeling. I could tell the difference because of when they went away. The oxaliplatin side-effects started to go away after the infusion while the Xeloda side effects started to go away in the break week.

Thanks Mike, appreciated. Like boxhill I didn’t know hand/foot could stick around this long. TIL.

Cheers
Rob
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

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Jacques
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Location: Occitanie

Re: How to quote a person's post

Postby Jacques » Mon Sep 23, 2019 5:43 am

MistyBlu wrote:...btw can someone tell me how to put a persons quote in my response??????

    Jacques wrote:
    Scilla wrote:It's probably just me being blind, but I can't find info anywhere on how to quote another user's post.
    Looked through the faq and did a search on "quote", didn't help :(
    Hoping someone can help :)

    As Maggie Nell has mentioned, there. is a little "double quote" icon in the upper right hand corner of the post that you want to quote. It looks something like this:

    "

    When you are viewing that person's post and click on that icon you will be put into edit mode with that person's complete post copied into your reply.

    If you don't want the whole message displayed in your reply, you can go into the copied message and delete parts of it, but you must never delete the left or right brackets that enclose the copied post. The copied post must always start with a bracketed tag that looks something like
    [ quote="username" ] and it must always end with the bracketed tag [ /quote ]
    If you delete any of the brackets or the bracketed tags your quote will not display correctly.


MistyBlu
Posts: 28
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: Surgery Pathology Report

Postby MistyBlu » Mon Sep 23, 2019 7:29 am

Thank Jacques...

#1
So Robster had me thinking that maybe I missed something. I'm going to stop back in the ONC office again tomorrow and ask the questions on staging and treatment. I went through the results with my husband and he said the only thing I didn't have in the notes above was that the ONC said the cancer did go through the walls yet I have his handwritten notes where he checked off perforation negative. Is this two different things. I know he mentioned the peritoneal cavity and said there was no penetration. So if it ent through the walls could this make me a stage 3?

#2
Is Folfox a combination of drugs, one of which os oxaliplatin, such that one can be given just the oxaliplatin in some cases? Like what's being offered to me?
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
Xeloda - 1,650mg (Oct19-May20)
CEA 10/22/2019 - 1.2ng/ml

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Surgery Pathology Report

Postby Rock_Robster » Mon Sep 23, 2019 8:21 am

MistyBlu wrote:Thank Jacques...

#1
So Robster had me thinking that maybe I missed something. I'm going to stop back in the ONC office again tomorrow and ask the questions on staging and treatment. I went through the results with my husband and he said the only thing I didn't have in the notes above was that the ONC said the cancer did go through the walls yet I have his handwritten notes where he checked off perforation negative. Is this two different things. I know he mentioned the peritoneal cavity and said there was no penetration. So if it ent through the walls could this make me a stage 3?

#2
Is Folfox a combination of drugs, one of which os oxaliplatin, such that one can be given just the oxaliplatin in some cases? Like what's being offered to me?

I’m sorry MistyBlu I may have caused some confusion.

#1:
We need to distinguish between tumour stage and overall disease stage. Tumour stage is assessed as T1-T4, based on the depth of progression through the bowel wall. Your tumour has grown through the muscularis propria and into the outer lining of the bowel wall, but not through it. This is considered a “T3” tumour.

The combination of a T3 tumour, with no lymph nodes involved (N0) and no distant metatases (M0), gives an overall assessment of T3N0M0. This is considered “stage 2a” overall disease (info on disease staging here: https://www.cancer.net/cancer-types/col ... cer/stages).

Note this is very different to a perforation, which is where the bowel wall actually fails and leaks as as a result of the tumour. This is a serious emergency, and you did not have this (thankfully)!

According to NCCN guidelines, stage 2a cancer without high risk factors would normally either get no chemotherapy, or a course of Xeloda (capecitabine) only. Oxaliplatin would only be on the table for stage 2a if other high risk factors were present.

Poorly differentiated cancer cells (also known as ‘high grade’ or ‘grade 3’ cells) is considered a high risk factor, which may explain why oxaliplatin is being offered as an option in your case.

#2:
You’re quite right - FOLFOX is a combination of FOLinic acid (aka leucovorin), Fluorouracil (aka 5FU) and OXaliplatin.

It would be unusual just to give oxaliplatin alone - it is almost always either combined with flourouracil or its oral form, Xeloda (capecitabine) to maximise its effectiveness. If doing a “lighter” chemo, usually only fluorouracil or Xeloda would be given.

The only real difference between Xeloda (capecitabine) and fluorouracil (5FU) is that the former is in tablet form, and the latter is given via IV infusion over several days. They both end up metabolised to the same drug by the liver.

The reason I was confused here is that he said he is “not offering FOLFOX”, but then goes on to include Xeloda+Oxaliplatin (XELOX) in your list of options, which is effectively the same thing - if not slightly tougher. I’m also not sure where he gets his recurrence rate (35%) from, which seems very high for stage 2a disease.

In summary from me:
The presence of one high risk factor (poorly differentiated cells) in purely my personal opinion would warrant the use of some adjuvant chemotherapy (eg Xeloda). Whether you want to take this further and do oxaliplatin as well would depend on how much additional risk reduction it would give you, and your personal willingness to accept the risks of short and long-term side effects from oxaliplatin treatment.

I hope this clarifies!

Cheers
Rob
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

MistyBlu
Posts: 28
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: Surgery Pathology Report

Postby MistyBlu » Mon Sep 23, 2019 10:08 am

Wow, thanks Robster. That helps a lot. All was familiar so I know others here have given me the same info just not all in once place.

Rock_Robster wrote:Poorly differentiated cancer cells (also known as ‘high grade’ or ‘grade 3’ cells) is considered a high risk factor, which may explain why oxaliplatin is being offered as an option in your case.
Cheers
Rob


So I was reading over the pathology report again and it says grade 2, not grade 3. So I will need to ask about that since that's my only high risk factor and there's a discrepancy. I planned to take the Xeloda pills for six months. Then reconsidered when NHMike told me about hand and foot being permanent. Now maybe I don't need any meds. Next week I have a second opinion with MSK. By then at least I'll be more informed from this exercise.

Where can I get the EMVI info? Should it be on the pathology report? I Don't see the acronym or it spelled out.
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
Xeloda - 1,650mg (Oct19-May20)
CEA 10/22/2019 - 1.2ng/ml

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Surgery Pathology Report

Postby Rock_Robster » Mon Sep 23, 2019 10:28 am

MistyBlu wrote:Wow, thanks Robster. That helps a lot. All was familiar so I know others here have given me the same info just not all in once place.

Rock_Robster wrote:Poorly differentiated cancer cells (also known as ‘high grade’ or ‘grade 3’ cells) is considered a high risk factor, which may explain why oxaliplatin is being offered as an option in your case.
Cheers
Rob


So I was reading over the pathology report again and it says grade 2, not grade 3. So I will need to ask about that since that's my only high risk factor and there's a discrepancy. I planned to take the Xeloda pills for six months. Then reconsidered when NHMike told me about hand and foot being permanent. Now maybe I don't need any meds. Next week I have a second opinion with MSK. By then at least I'll be more informed from this exercise.

Where can I get the EMVI info? Should it be on the pathology report? I Don't see the acronym or it spelled out.

Ok great, glad it’s making more sense. Sorry for my part in the confusion!

Indeed grade 2 vs grade 3 is a different story, so good to get that one clear.

EMVI should be on the surgery pathology report, in the same section where LVI and PNI are reported.

For sake of completeness, it should also say how many lymph nodes were taken and tested (eg 0 out of X lymph nodes positive). If less than 12 were sampled, this is also a high risk factor (regardless of how many were positive).

I don’t think anyone could call you unreasonable for considering the 6 months of Xeloda. It will be very informative to see MSK say about this too; I would put quite a bit of credibility in their opinion.

If hand/foot syndrome is your primary concern with Xeloda, then you could consider doing the 5FU (IV) form instead as this does not normally have this risk. It is less convenient however as it would require having a temporary port placed, and the infusion is given over 2 days, every 2 weeks (you take a little bottle with you, so you can still go about your life). Some people prefer this as the side effects are generally less, and then for 12 days per fortnight they have no chemo to worry about.

Cheers
Rob
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

MistyBlu
Posts: 28
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: Surgery Pathology Report

Postby MistyBlu » Mon Sep 23, 2019 10:44 am

Rock_Robster wrote:EMVI should be on the surgery pathology report, in the same section where LVI and PNI are reported.
For sake of completeness, it should also say how many lymph nodes were taken and tested (eg 0 out of X lymph nodes positive). If less than 12 were sampled, this is also a high risk factor (regardless of how many were positive).
Cheers
Rob


I got the LVI and PNI from the doctors handwritten notes. Not so clear on the pathology report to a new jack i.e. PNI says Perineural Invasion: Not Indentified. So all that to say nothing says EMVI so here's some stuff I have not yet deciphered...could it be one of these? Oh and lymph nodes were 0/19.

Macroscopic Tumor Perforation: Not Identified
Margins: Univolved by invasive adincarcinoma, intramucosal carcinoma, high grade dysplasia and adenoma
Tumor Deposits: Not Indentified
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
Xeloda - 1,650mg (Oct19-May20)
CEA 10/22/2019 - 1.2ng/ml

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Surgery Pathology Report

Postby Rock_Robster » Mon Sep 23, 2019 10:49 am

MistyBlu wrote:
Rock_Robster wrote:EMVI should be on the surgery pathology report, in the same section where LVI and PNI are reported.
For sake of completeness, it should also say how many lymph nodes were taken and tested (eg 0 out of X lymph nodes positive). If less than 12 were sampled, this is also a high risk factor (regardless of how many were positive).
Cheers
Rob


I got the LVI and PNI from the doctors handwritten notes. Not so clear on the pathology report to a new jack i.e. PNI says Perineural Invasion: Not Indentified. So all that to say nothing says EMVI so here's some stuff I have not yet deciphered...could it be one of these? Oh and lymph nodes were 0/19.

Macroscopic Tumor Perforation: Not Identified
Margins: Univolved by invasive adincarcinoma, intramucosal carcinoma, high grade dysplasia and adenoma
Tumor Deposits: Not Indentified

Good news about the lymph nodes - that’s another one you can tick off! The info there doesn’t seem to refer to EMVI - in all likelihood if it’s not reported it was negative, but probably worth asking just for peace of mind.
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

MistyBlu
Posts: 28
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: Surgery Pathology Report

Postby MistyBlu » Tue Sep 24, 2019 7:08 am

Robster, going in with my questions this evening. One last thing. What significance does EMVI have on this situation?
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
Xeloda - 1,650mg (Oct19-May20)
CEA 10/22/2019 - 1.2ng/ml

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Surgery Pathology Report

Postby Rock_Robster » Tue Sep 24, 2019 7:12 am

MistyBlu wrote:Robster, going in with my questions this evening. One last thing. What significance does EMVI have on this situation?

EMVI is a prognostic factor for recurrence risk, which might drive decision making about chemotherapy. Some research is below if you’re interested. I double-checked today and it isn’t actually an NCCN risk factor (like LVI and PNI are), but it’s still definitely something I’d want to know about in decision making.

https://www.hindawi.com/journals/grp/2017/1598670/

Good luck for the consult!
Rob
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

MistyBlu
Posts: 28
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: Surgery Pathology Report

Postby MistyBlu » Wed Sep 25, 2019 9:50 am

Update:
Got some clarity last night at the ONC's office.
• I am moderately differentiated not poorly differentiated. Correction on his part.
• As for stats, he quoted that from his head???. He said what he should have said was 1 in 4 people have a reoccurrence in my situation.
• As for the drug treatment, they’re new and are recommended from the EXACT Study. He logged into this study and showed me so I saw it. It said no one has proved that 6 months of Xeloda is better or worse than 3 months of a
Xeloda/Oxaliplatin treatment. So the patient can choose. Obviously if one were better than the other you would not give the patient a choice.
• The dosage is 14 days on and 7 off…whew so that's my bad on the 21 day thing! Hand and foot will just have to be dealt with. You know it’s better than Cancer so!
• EMVI negative

I told him I’m going with the six month Xeloda treatment. I have my MSK second opinion tomorrow. He signed into a national database where he has to put in all the patient's details and it produces a recommended treatment. Voila! Suggested Xeloda 1,250 per day or 2x/day? for 6 months. He then told me ok so If you chose the Xeloda/Oxaliplatin treatment then I would have to defend that because it’s not recommended. They like to make sure that they're all keeping to certain standards. So I feel certain that perhaps MSK will agree with this plan (I'm hoping). So I’d be on two 500’s and two 125’s.

Is that considered a high dose?
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
Xeloda - 1,650mg (Oct19-May20)
CEA 10/22/2019 - 1.2ng/ml

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

Re: Surgery Pathology Report

Postby NHMike » Wed Sep 25, 2019 10:40 am

MistyBlu wrote:Update:
Got some clarity last night at the ONC's office.
• I am moderately differentiated not poorly differentiated. Correction on his part.
• As for stats, he quoted that from his head???. He said what he should have said was 1 in 4 people have a reoccurrence in my situation.
• As for the drug treatment, they’re new and are recommended from the EXACT Study. He logged into this study and showed me so I saw it. It said no one has proved that 6 months of Xeloda is better or worse than 3 months of a
Xeloda/Oxaliplatin treatment. So the patient can choose. Obviously if one were better than the other you would not give the patient a choice.
• The dosage is 14 days on and 7 off…whew so that's my bad on the 21 day thing! Hand and foot will just have to be dealt with. You know it’s better than Cancer so!
• EMVI negative

I told him I’m going with the six month Xeloda treatment. I have my MSK second opinion tomorrow. He signed into a national database where he has to put in all the patient's details and it produces a recommended treatment. Voila! Suggested Xeloda 1,250 per day or 2x/day? for 6 months. He then told me ok so If you chose the Xeloda/Oxaliplatin treatment then I would have to defend that because it’s not recommended. They like to make sure that they're all keeping to certain standards. So I feel certain that perhaps MSK will agree with this plan (I'm hoping). So I’d be on two 500’s and two 125’s.

Is that considered a high dose?


Dosage is dependent on body surface area which I think that they compute using height and weight. The dosage for Neo-Adjuvant chemo is lower than it is for Adjuvant chemo. I don't know what the formulas are.
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

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Surgery Pathology Report

Postby Rock_Robster » Thu Sep 26, 2019 5:20 am

Hi MistyBlu, I believe the standard dose is 1,250 mg per square meter (m2) of body surface area, twice daily. Most folk sit between 1.5 to 2.5 m2, so this dose does sound a bit light (unless you are absolutely tiny). Is it possible you’re reading the dose per m2 before adjusting for your size? There may also be reasons he prescribed a lighter dose, so good to clarify this with him.

Hope all went well at MSK.
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

MistyBlu
Posts: 28
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: Surgery Pathology Report

Postby MistyBlu » Thu Sep 26, 2019 7:10 am

Rock_Robster wrote:(unless you are absolutely tiny)

Hope all went well at MSK.


Tiny! HA! I'm actually quite hefty. 5'3 160bs. He did ask for height and weight and I didn't get the dose wrong because he said it a few times and I wrote it down. Also, I priced it and was happy to find that I can get brand for $5.

The MSK consult is today.
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
Xeloda - 1,650mg (Oct19-May20)
CEA 10/22/2019 - 1.2ng/ml

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Jacques
Posts: 579
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Surgery Pathology Report

Postby Jacques » Thu Sep 26, 2019 12:06 pm

MistyBlu wrote:... So I’d be on two 500’s and two 125’s...Is that considered a high dose?

Are you sure that your oncologist gave you the correct information?

To me, this doesn't look correct at all. For one, where are you getting 125 mg. tablets? Normally Xeloda/capecitabine is issued only in 150mg and 500mg tablets.

Another thing is that this dose looks to me like it is way off the dose level that should be given to a 160 lb, 5'3" person. Did MSKCC have anything to say about that?

Before you go too far along on this dosing schedule I think that you should verify, from an independent source, that this is the pill count that you should really be taking.

Is your oncologist from ORMC? Is he/she a Board Certified Medical Oncologist?


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