Adjuvant chemo or not / Decision time for adjuvant chemo

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hwr
Posts: 7
Joined: Wed Aug 28, 2019 7:19 am

Adjuvant chemo or not / Decision time for adjuvant chemo

Postby hwr » Wed Aug 28, 2019 8:37 am

In early July I was DX with Appendicitis and received emergency appendectomy. Pathology revealed T3 intermediate to high grade grade cancer, perennial invasion, and lymphatic invasion. CT scans were negative and R hemicolectomy was negative. My stage now is 2A. My oncologist uses colon cancer as the model for standard of care since there are so much data for it but very little for cancer of the appendix.
He said the standard of care for my stage is adjuvant chemo with either Folfox for 6 months or Xelox for 3 months. He does not recommend Xelox for anyone as he said it is a beast and side effects are generally terrible. In fact he said if I wanted it I would need to have someone else administer it. Subsequently he changed his mind and said he would treat me with it but advised against it. I asked him if he would opt for the chemo if he were in my shoes. He said no. Not enough gain for the pain. He believes I have 15-20% chance of recurrence without chemo and maybe 3-5% less after chemo.
I talked about it with my wife, pastor, primary care doctor, and several longtime friends. They all said no. The cancer surgeon who removed the appendix said he would simply because he wanted to do everything he could to lessen his chances of recurrences. If he still had recurrence he could at least say he tried. He did point out that his wife would not do it.
The Xelox appealed to me initially because it was half the time and infusion took 2 hours rather than 4 for Folfox, and no pump for 48 hours each 2 week period. So 4 trips in for infusions, followed by oral for 8 weeks, 4 weeks off. Then I learned that the oral component is not paid by Medicare or my Medicare supplement and could cost thousands of dollars out of pocket.
I began to reconsider Folfox and found several studies that found that 3 months of Folfox was just as effective as 6 months of Folfox but with half of the side effects. I will take these studies to my oncologist and see what he thinks and ask him if will do the 3 months if I sign a waiver. It generally takes a long time to change a standard of care.
I’m be 74 next month, retired, good health, exercise every day, not over weight, non-smoker, no diabetes, no cardiovascular issues. My wife and I walk together 4 miles every day, lift weights 3 times a week, and travel frequently. Friends who vote no to adjuvant chemo say all these activities will be put on hold and I may never regain my stamina or good health. They believe quality of life is more important than maybe getting 3-5% reduced risk of recurrence.
I suppose if I have questions, it is these: How bad is the 3 months of Folfox likely to be? Will I lose my hair and be sick and tired every day? What are the odds of getting permanent neuropathy?

NHMike
Posts: 2204
Joined: Fri Jul 21, 2017 3:43 am

Re: Adjuvant chemo or not

Postby NHMike » Thu Aug 29, 2019 8:53 pm

My understanding of Adjuvant is either 12 rounds of FOLFOX where you get the Oxaliplatin the first day of the cycle and carry the pump for two days and then you're done for two weeks. So 12 rounds of 2 weeks for 24 weeks total.

XELOX is 8 rounds of three weeks. The first day is the Oxaliplatin Infusion and you get Xeloda for two weeks and then the third week is rest. So 8 rounds of 3 weeks or 24 weeks total. Some people do 12 weeks or half and some do 18 weeks.

I did 8 rounds of XELOX or the whole 24 weeks.

It is rough and I had some permanent side-effects. Neuropathy in the toes which is tolerable and minor arthritis in my fingertips. But it was brutal because I did it during the winter in New Hampshire.

I did not lose my hair. But I had to sleep two hours in the afternoon after infusions. The cold sensitivity was the worst part of it for me but, again, it was NH in the winter. The XELOX or FOLFOX will do a number on your White Blood Count so you need to work at not getting sick. They will do a number on your Red Blood Count which will decrease your stamina. If you are already in good shape, you might not really feel it unless you do something very strenuous.

I finished Adjuvant Chemo 14 months ago and had reversal surgery 13 months ago. I am not back to pre-cancer fitness levels but that's due to the surgery and not the chemo. I think that I could have returned to pre-cancer fitness levels in about six months without the surgery issues. But I'm only 60 and understand that the body at 75 is a lot different.

Stage 2A is almost always a tough call.
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

Deb m
Posts: 502
Joined: Tue Jan 14, 2014 10:08 am

Re: Adjuvant chemo or not

Postby Deb m » Fri Aug 30, 2019 1:09 pm

My husband 's cancer was also down by his appendix. It was actually in his cecum, but they also removed his appendix because it grew into the orifice of his appendix. He was a stage llt4a. Because of the t4 status, they highly recommended chemo.

My first thought when I read your e-mail was, have you gotten a second opinion from a major cancer? We did and I believe it saved my husbands life. Their treatment plan and findings were different than what they said and found at our local hospital. Stage 2 carries some high risk features sometimes, such as being a t4 or LVI, or poorly differentiated. If you are any of these, then I would do the folfox. .

We did 12 rounds of folfox and my husband recovered from all the side effect of chemo fairly well. Just a bit of nephropathy on his feet which don't slow him down a bit. If we had to do it all over again, we would choose the same treatment plan.

debm

Pyro70
Posts: 143
Joined: Mon Jan 21, 2019 4:25 pm

Re: Adjuvant chemo or not

Postby Pyro70 » Fri Aug 30, 2019 1:19 pm

I’d have to check but I think the latest guidelines don’t have an option for short (3 month FOLFOX). But here is a short option with xelox.

I think no chemo makes sense. Don’t listen to the surgeon, they don’t know much about the data on chemo. It’s still somewhat experimental, But I’d get a ctDNA test done. If they find circulating tumor DNA get chemo. Otherwise not.

You don’t have a part D drug plan to cover the oral component? You’ll still pay out of pocket, but not that much.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

Beckster
Posts: 386
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Adjuvant chemo or not

Postby Beckster » Fri Aug 30, 2019 3:43 pm

hwr wrote:In early July I was DX with Appendicitis and received emergency appendectomy. Pathology revealed T3 intermediate to high grade grade cancer, perennial invasion, and lymphatic invasion. CT scans were negative and R hemicolectomy was negative. My stage now is 2A. My oncologist uses colon cancer as the model for standard of care since there are so much data for it but very little for cancer of the appendix.
He said the standard of care for my stage is adjuvant chemo with either Folfox for 6 months or Xelox for 3 months. He does not recommend Xelox for anyone as he said it is a beast and side effects are generally terrible. In fact he said if I wanted it I would need to have someone else administer it. Subsequently he changed his mind and said he would treat me with it but advised against it. I asked him if he would opt for the chemo if he were in my shoes. He said no. Not enough gain for the pain. He believes I have 15-20% chance of recurrence without chemo and maybe 3-5% less after chemo.

I suppose if I have questions, it is these: How bad is the 3 months of Folfox likely to be? Will I lose my hair and be sick and tired every day? What are the odds of getting permanent neuropathy?


Welcome...I had Stage 2A cancer of the cecum with high grade and LVI. Before the new protocol, I was offered either 6 months of Folfox (12 cycles) or 6 months of Xelox (8 cycles). My onc is affiliated with MD Anderson and he suggested that I should do chemo. He said that I might not have OXI the entire time and that he would pull it and just keep me on Xeloda. Well, I started with the Xelox and had a reaction on my first infusion, so it was dropped. I did Xeloda for 6 months...it was doable and if you are offered 3 months, I would do it as an insurance policy for recurrence. You want to make sure that you do everything possible not to have a recurrence. I have been finished chemo for 2 1/2 years and doing fine. Sure, you will feel a tired and possible hand/foot. I was lucky that I never had nausea, but I did get HF. Once he made an adjustment to the pills, I was good. I never lost my hair and never got sick. I was tired, so I would take a nap. I continued on my daily routine and no one even knew that I was on chemo. I would get a second opinion from a large cancer center and make sure that the treatment is the same. Better to be safe than sorry.
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18 6/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6
Clear Colonoscopy 10/17 :D

User avatar
ANDRETEXAS
Posts: 618
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Adjuvant chemo or not

Postby ANDRETEXAS » Thu Sep 05, 2019 1:40 am

My cancer was also in the cecum. As you can see, I am a proponent of adjuvant chemo. I was Stage IIIb however. You should definitely get as many opinions that you need from the following: physicians, surgeons and oncologists. They know a lot more than friends, relatives and Google.
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT

ONE DAY AT A TIME !

lovelife789
Posts: 141
Joined: Thu Aug 24, 2017 5:28 am

Re: Adjuvant chemo or not

Postby lovelife789 » Thu Sep 05, 2019 2:25 am

If I were you, I wouldn't do chemo and I share with you why.

I am a stage IV and had 18 months chemo free until the latest recurrence in my lymph nodes. It is not a good place to have Mets and I'm now doing chemo.

I had a pseudo recurrence last Aug in my lung which VATS took care of it. Surgeon and onc asked me to do adjuvant chemo and I said NO. I had another 9 months of NED after that. People thought I was crazy but during that 9 months, I took a great trip with my family and a lot of small ones with loved ones. I don't regret a thing for not doing chemo then. All drs now say even if I had done chemo then, I would still probably have the recurrence I have now.

Now I'm on chemo and the pictures I took during those trips keep me going. My point is that making memories is more important than suffering to take preventive measures. Being happy enjoying life helps to beat cancer too!!! Not just chemo!

And honestly, we don't know what's going to happen tomorrow. May be it will never come back!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

natelaugh
Posts: 60
Joined: Wed Apr 03, 2019 11:40 pm

Re: Adjuvant chemo or not

Postby natelaugh » Thu Sep 05, 2019 2:32 am

My research for stage 2a also result in 3 months chemo treatment for colon cancer. My dad did 11 cycles of only 5FU as of today. We were also not sure if chemo was the right decision. However, when his oncologist said you have a chance for a cure of cancer because there is no tumor. If wait for the cancer to develop into a tumor we lose the chance of a cure.

As for being on 5FU, on chemo week he is tire for 3-4 days and after that he has more energy.

Nate
Caregiver to 80M
DX:CC,RC,desc
11/2018 rightPain
1/19/19 scopy,path
1/23 CTscan
2/19 surgery
2/26-2/28 NGTube
2/28-3/14 TPN bc ileus
3/2 2nd surgeryCloseOpenWound
3/4-3/28 woundVac
size: 6cm Adenocarcinoma
grade Poorly
Stage IIIC T3N2aMx
PositiveLymph:5of28
BaselineCEA:68
LVI:Y
PNI:N
Surgical margins:clear
MSI:MMR (MLH1, MSH2, MSH6, PMS2) Intact nuclear expression
Lynch status:N
Laparascopic, partial colectomy
CEA:3/28/19 2.8
Chemo:4/16/19-9/17/19 5FU,12cycles,every 14days,leucoverin,zofran,Dexamethasone

User avatar
horizon
Posts: 1511
Joined: Tue Apr 12, 2011 10:10 pm

Re: Adjuvant chemo or not

Postby horizon » Thu Sep 05, 2019 8:20 am

hwr wrote:In early July I was DX with Appendicitis and received emergency appendectomy. Pathology revealed T3 intermediate to high grade grade cancer, perennial invasion, and lymphatic invasion. CT scans were negative and R hemicolectomy was negative. My stage now is 2A. My oncologist uses colon cancer as the model for standard of care since there are so much data for it but very little for cancer of the appendix.
He said the standard of care for my stage is adjuvant chemo with either Folfox for 6 months or Xelox for 3 months. He does not recommend Xelox for anyone as he said it is a beast and side effects are generally terrible. In fact he said if I wanted it I would need to have someone else administer it. Subsequently he changed his mind and said he would treat me with it but advised against it. I asked him if he would opt for the chemo if he were in my shoes. He said no. Not enough gain for the pain. He believes I have 15-20% chance of recurrence without chemo and maybe 3-5% less after chemo.


I thought that the Oxi of the Xelox was the real beast. I haven't heard someone describe Xelox as much worse that Folfox. Xeloda does have hand/foot as a possible symptom, which I did encounter and they had to dial back my dosage. I did Xeloda and I would pick it again if I could do it all over again. I know for my personality I would hate wearing the pump. Taking pill after pill after pill with a week off after two worked well for me. When I was trying to chose and asked if Xelox or Folfox was better they said if one was better they wouldn't be giving me a choice.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

CF_69
Posts: 79
Joined: Sat Dec 22, 2018 9:44 pm

Re: Adjuvant chemo or not

Postby CF_69 » Thu Sep 05, 2019 8:25 am

I was 2A.

My oncologist originally said no chemo, but it was up to me.

He thought that FOLFOX was overkill for my situation, so he recommended 3 months of Capecitabine (Xeloda) so that’s what I did.

Seems like a pretty reasonable compromise. The data showed similar results.

The pills weren’t fun, but the side effects were tolerable. I did not have many, though we all have different reactions / experiences.

I would ask about that possibility.

3-5% might not seem like a lot, but I’ll take that on my side of the ledger.
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA 1.9
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.

hwr
Posts: 7
Joined: Wed Aug 28, 2019 7:19 am

Decision time for adjuvant chemo

Postby hwr » Fri Sep 06, 2019 10:57 am

I’m new here, but did have an earlier post about adjuvant chemo for stage 2A. I do not have colon cancer but appendix cancer but oncologist equates it to colon for treatment options and standard of care. I appreciate all those who took the time to respond. The majority who responded thought chemo was the right thing to do. As an update to that earlier post, I have revived a 2nd opinion of pathology from MD Anderson and it matches the original, so no luck there. I had T3 high grade appendix cancer with lymphovascular and perineural invasion. The lymphovascular invasion is the reason the oncologist offered adjuvant chemo.
I have discussed chemo with several doctors who are friends and not connected to my case, my primary care doctor, cancer surgeon, and several close friends and family. Only the cancer surgeon said he would do the chemo. My oncologist said he would not if he were making the decision for himself. Simply not enough benefit for the toxic effect of the chemo and loss of quality of life he said.
If I were to take chemo the oncologist recommends 6 months of Folfox including the infusion every 2 weeks, followed by the pump for 48 hours. We discussed 3 months of Xelox but he thinks it’s too harsh although equally effective. I liked that option right away for several reasons. 2 hours of infusion, versus 4 and pills for 2 weeks and off a week. I heard the pills were expensive so I had the oncologist write a script for the pills and the pharmacy called and said it would be billed under part B Medicare and I don’t have copay since I have Blue Cross supplement. She even if I did, they would waive it. The pharmacist said oxaliplatin is the primary reason for side effects and I’ve read where some just stop the infusions and continue the pills. I wonder what that does to the effectiveness.
Another option I would consider is taking Folfox for 3 months rather than 6. Studies have shown very little loss of effectiveness, but with significantly fewer side effects. Many think it will become the new standard of care. I don’t know if my oncologist would consent to letting me take just 3 months even if I signed a waiver.
So, this is where I am in my thinking. I am the type of person who would probably beat myself up a little if I have a recurrence and did not do adjuvant chemo. On the other hand, I am used to being active, healthy, exercising every day, doing yard chores, and travelling a lot with my wife. I don’t mind putting those on hold for a few months, but would really hate to be still trying to recover to my former self a year or more after chemo ended.
Just how bad is chemo for 3 months on the body?
Your thoughts are appreciated.

CF_69
Posts: 79
Joined: Sat Dec 22, 2018 9:44 pm

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby CF_69 » Fri Sep 06, 2019 7:09 pm

You can live a pretty normal life on Xeloda. It’s hard to make a blanket statement because everyone has different reactions to these drugs, and without pulling any punches, these drugs are nasty.

That said, if you’re on Xeloda, you take it twice a day after food. I didn’t have any visible side effects. No hand / foot syndrome. No hair loss. Well no more than usual. Literally nobody that didn’t already know would have any reason to suspect I was taking chemotherapy medication.

I chose to do the adjuvant chemo because I wanted to use every tool possible to get the cancer out of my body. Maybe the chemoradiation got most of it. Maybe the surgery got whatever else was left. The stats do say that 50% of people are cured by surgery alone. But what if they didn’t get it all?

That question is why I chose the adjuvant chemo.

There’s still a chance I could have a recurrence, god forbid, but if it does happen at least I won’t have regrets about not doing the chemo.

So I would say do it.

I did ask my oncologist what he would do in my situation and he said he was on the fence.
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA 1.9
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.

Beckster
Posts: 386
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby Beckster » Fri Sep 06, 2019 9:10 pm

I was on Xeloda because of LVI for 6 months. Like you, I would have kicked myself for not doing everything possible to make sure it never came back. It was quite doable. I was retired but still was able to work part time. I started with 3000mg per day (1500 in the morning and 1500 at night) for 2 weeks and than one week off. I did develop H/F but that was not until after the 3rd cycle. My oncologist lowered the dosage, and I it was much better. Because of the H/F, the bottom of my feet were sore and my hands and feet darkened. However, as soon as I stopped treatment, everything went back to normal. I never had nausea, lost my hair and actually gained 10 pounds. I was able to live my life normally with a little nap each day. No one knew that I was on chemo. Good luck on your decision and if you have any questions, feel free to message me.

Beckster
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18 6/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6
Clear Colonoscopy 10/17 :D

boxhill
Posts: 336
Joined: Fri Apr 06, 2018 11:40 am

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby boxhill » Fri Sep 06, 2019 10:38 pm

I don't have any experience with Xeloda, but you have twice mentioned that a 4-hour infusion time for FOLFOX is a factor in your decision.

To my knowledge, and in my experience, that is incorrect. The standard infusion time for FOLFOX is 2 hours, during which you first receive several premeds intended to prevent nausea and a steroid intended to prevent reaction to the oxi, followed by the leucovorin and oxaliplatin, followed by a 5FU bolus then 46 hours on the pump.

The only people who have a 4 hr FOLFOX infusion time to my knowledge are those who have a negative reaction to the oxi infusion. Most of us don't.
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
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

hwr
Posts: 7
Joined: Wed Aug 28, 2019 7:19 am

Re: Adjuvant chemo or not / Decision time for adjuvant chemo

Postby hwr » Sat Sep 07, 2019 3:01 am

I so much appreciate your responses.

As for upcoming plans between now and year end, I wonder if I would realistically be able to keep any of them if I began chemo in late September.

1. 200 mile drive each way for a reunion on September 27-29. Low key event, mainly dinner with friends and gathering at local neighbor church where we all grew up a kids in the 50's. I would be travelling alone. I could always delay start of chemo to 9/30 rather than 9/23.

2. Annual beach fishing trip with son, son-in-law and wives week of October 12-19. Always a wonderful week. look forward to it all year.

3. Caribbean cruise December 9-20. We are looking forward to it, but this would be our 26th cruise so it's not the end of the world.

The oncologist said maybe to trips one and two, but no to the cruise.


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