Start tomorrow. So scared.

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lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Start tomorrow. So scared.

Postby lakeswim » Fri Jun 01, 2018 1:14 pm

MKC70 wrote:How are you doing? Just checking in..... :D :D :D :D :D :D :D :D :D :D :D :D :D


Hello! And thanks, all, for checking in! I didn't get any notifications at all so I'm sorry I'm replying late. After that bizarre reaction on Friday (which was the worst part of last week) and into Friday night/Sat am, I had a ton of energy (even compared to pre diagnosis) for the rest of the weekend and into the early part of this week. I felt pretty normal (outside of being ravenous). The last few days, late this week, I've been momre tired and headachey but that could be related to too much sugar (2 bdays and 2 bday cakes in the house over the weekend) and less sleep than usual (thanks to hot flashes that started up again - maybe due to sugar?) and maybe doing too much (and it being hot)? I need to get back to my normal good nutrition and back to good sleep before Monday (Round 2) comes around. I did yoga today for the 1st time since diagnosis and it felt good - but chest port was annoying. (Is the port ever something you don't notice?) I had an appt with my ONC PA this week and she said that, not matter what the infusion nurse and home care nurse said (that "whatever happened this round is how it will be for me"), she likes to reserve her predictions until the second round. She also said the neuropathy and the fatigue will definitely get worse with each round.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Start tomorrow. So scared.

Postby lakeswim » Thu Jun 28, 2018 1:32 pm

Hello, all. I need some support.

I completed Round 3 (of 8 FOLFOX rounds) last Monday (last week) and am due for #4 next week. I had the toughest time this round and I am not sure I can do 1 more - let alone 5 more. (This is my first step - I'm doing FOLFOX chemo then chemo/radiation then surgery.)

This last round, I had to be given a Benadryl during infusion bc they felt my reaction during infusion of the Ox was unusual (mouth, tongue, throat tingling) and the hand and leg cramping (this didn't start until late afternoon infusion day during Round 2 - but started before the end of this infusion - what will happen next time??). I could barely walk out of the infusion - between the bendaryl dose and the leg cramps. I looked like my neighbor - who has MS and can barely walk. I nearly fell over trying to use the bathroom by myself.

The last two rounds, I have been in bed nearly all week. (The ONC nurse says one day in bed is typical. What say you guys?) It's painful to walk with the leg cramping (which happens anytime I stand up and/or walk) or to use my hands with the hand cramping (both last through Th/Fr at least - this time the hand cramping popped up on Monday of THIS week and my fingers do not feel normal nor work 100%!) and I generally feel terrible, so lying in bed is the only way to get any relief. Liquids must be warm starting with DURING infusion (and lasting to Day 8 of this round) and it all (any liquid or food) tastes like garbage. And holding anything to drink is hard with the hand cramping. So, I'm drinking - but probably not enough. And not moving. And eating little - and only food I will tolerate which is bland food without fiber.

So, on Friday, I FINALLY had an appetite, but once I started eating anything substantial, I finally felt the need to poop (I hadn't pooped since Sun/Mon) and then the trouble began. I have NEVER been constipated in my life and this was extreme. I won't include details but it was horrific and I never want to go through that pain and experience again. (I assume I will experience pain during radiation and after surgery. I didn't expect this type of discomfort so soon.) I assume that the Ox affects nerves - so I'm thinking it must affect the vagus nerve - and my urge-to-go (because I never felt the need to go M-Th at all - outside of some gas). Another problem is that I have the worst belching whenever I eat or drink ANYTHING (and even when I don't). This was a minor problem I had coming into this but the chemo week, it is terrible. It doesn't help motivate me to eat/drink anything.

This round, the sensitivity to warmth/heat was a new one. Heat gives me a rash on my hands and fingers - like when I grab my warm mug of warm water to force myself to drink.

Some of these side effects are worse than others. But there are so many (more than I included here) and they last so long. And it is so so so hard. I don't know how y'all do this. Esp those of you who have already been through radiation and surgery. I am going to have only 4 decent days before my next round on Monday and it all starts again.

I see my Oncologist tomorrow. I want to discuss lowering the Oxalyplatin. But I can tell it will be a fight - and I wonder whether I should or not. My oncology nurse, over the phone, admits that my reaction is unusual but then questions my considering lowering the Oxaly. (She says it's the heavy hitter and implies I need to tolerate as much as possible to allow it to do the work.) I understood the chemo was a more general treatment whereas the radiation is more targeted/more critical? And the Oxaly has such bad side effects and my ST side effects are already bad - what about long term?

My infusion nurses and my home care nurses tell me my reaction and experience is unusual. They say my dosing is based on data of someone of my height/weight - but it may not be right for ME. They say the Onc doctors start everyone with the max dose - and there should be some wiggle room in the "effective" end. They suggested I talk to my oncologist. I go see him TOMORROW MORNING. Yet when I speak to my oncologist nurse, she doesn't seem to agree with other nurses - so I kind of anticipate the doctor will be the same. He will talk data and I will talk my experience so far. Then, he'll say it's up to me and I'll need to decide.

Also, is anyone else triggered by the smell of the chemicals when you sweat? I lie in bed all infusion week, trying to just get through each hour and day, but all I smell is the chemo drugs - even right after I finally shower on Th/Fr. The smell makes me sick - on top of everything else. I didn't stop smelling it until T/W of this week (my off week). It is Thursday of my off week and I can still smell it in my poop.

I just am curious if I just need to suffer through all of this - or if it is indeed unusual - and whether I should insist on a reduction in the Ox dose. All I know is that lying in bed every other week is not good for anyone - esp someone who has radiation and surgery in their future. They keep telling me to keep my weight up and keep active - and I don't see how I can do either if this is how it will be every other week until September. I just don't know how I will face next Monday - let alone 5 more Infusion Mondays.

Thanks for any support/feedback.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

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

Re: Start tomorrow. So scared.

Postby NHMike » Thu Jun 28, 2018 1:43 pm

My oncologist added magnesium to the IV when I complained of cramping after an infusion and I took pills for it the following couple of days. You could increase your electrolyte intake a few days before the infusion so that they don't get depleted with the infusion. The electrolyte/cramping issue happens to a lot of people on Oxaliplatin I think and it is discussed here. The hospital also provides some salty snacks like chips and goldfish crackers and I think that they help to decrease cramping. There are times when I put a fair amount of salt on food to avoid cramping. I think that a balance of magnesium, potassium, calcium and sodium is better but salt is often easier to come by. Not recommended if you have sodium issues though.

After an infusion, I'd usually go home to work for the afternoon though sometimes I'd just wind up taking a nap for a few hours and then going back to work. I was always in the office the next day.

My feeling is that the chemo and radiation was the least difficult, the surgery in-between and the 5FU+Oxaliplatin the toughest. Not everyone agrees though. None of them are easy and they each present their own challenges but that's how I felt in going through them. The FOLFOX stuff is rough; some people have it easier than others but I don't recall anyone saying that it was easy.
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

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

Re: Start tomorrow. So scared.

Postby NHMike » Thu Jun 28, 2018 1:50 pm

I did not smell anything related to the chemo in sweat but I found it odd that I didn't have any mosquito bites last summer while on Xeloda and afterwards and got my first mosquito bite in about a year, last week after being done with my 8 rounds two weeks ago. So there may be something to it.

The chemo/radiation phases is a lot different because you're not getting the Oxaliplatin. The radiation and chemo will mess with your digestive system though. You can go between constipation and diarrhea and you have to manage both. One of the things with the new ordering is that your digestive tract can take somewhat of a beating. The old ordering had surgery before the Oxaliplatin so they put in an illeostomy so your stuff went in the bag. I have watched the output go into the bag and sometimes it's very watery and sometimes it's very dry and I can imagine having to deal with those conditions without the bag through the lower intestines. That's why they do the illeostomy - to make it easier while on the chemo.
Last edited by NHMike on Thu Jun 28, 2018 11:08 pm, edited 1 time in total.
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

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Start tomorrow. So scared.

Postby lakeswim » Thu Jun 28, 2018 2:23 pm

Thanks for your feedback, Mike.

The PA thought it was electrolytes - but it's not. They check my blood right before each infusion (that morning) so my electrolytes have been perfect each time. It is clearly a response to the Ox, given it now happens within an hour of starting the infusion. I'm also a salt lover (except infusion week - when I hate all food) so my sodium levels are fine. (This is part of why I choose not to fast 48 hours prior. I don't need any variables involved when trying to determine what is going on with side effects.)

It's funny. The Onc told me that people tolerate the Ox better up front (vs. after surgery) but I'm wondering if it's more complicated than that. Your comment about what you saw in your bag is interesting.

Also, I can't imagine anyone saying it's easy and would never assume that. But when I have the infusion nurses and the home care nurses telling me my experience is extreme and it shouldn't be like this, I take notice and think perhaps I don't need to suffer THIS much?
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Start tomorrow. So scared.

Postby heiders33 » Thu Jun 28, 2018 2:29 pm

Definitely ask your onc for a reduction. You have already done three rounds and reducing for the fourth round shouldn’t make that much of a difference in terms of effectiveness. If I had described what you are describing to my onc, he definitely would have reduced. Also, I agree with Mike about taking electrolytes for cramping. It helped me a lot.

Sorry you’re going through this!
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Start tomorrow. So scared.

Postby lakeswim » Thu Jun 28, 2018 2:38 pm

Hi - and thanks! Why shouldn't it make a difference after only 3? It's not even half of the 8 rounds. Thanks for the info.!
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Start tomorrow. So scared.

Postby heiders33 » Thu Jun 28, 2018 3:08 pm

I know that Folfox and Xelox are different in terms of dosage each time because Folfox is every two weeks and Xelox is every three weeks. I was told that four rounds was the minimum and six rounds the sweet spot for Xelox. So I don’t know what it is for Folfox. However, I was also told that if my side effects got bad we could consider reducing dosage. I ended up reducing for my sixth infusion because of neuropathy. It’s a balance between maximizing the drug and minimizing long term side effects. I’ve also read on this board that, between the Oxy and the 5FU, the Oxy is a much smaller percentage in terms of its impact. Sorry I don’t have the direct scientific reference for that statement. You may want to ask your onc about that. I mainly want to emphasize finding that balance between quality of life and maximum dosage. Chemo is never easy, of course, but it sounds like it’s impacting you especially hard.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Start tomorrow. So scared.

Postby lakeswim » Thu Jun 28, 2018 3:20 pm

Good info. Thanks for explaining!
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Start tomorrow. So scared.

Postby boxhill » Thu Jun 28, 2018 9:15 pm

I'm sorry you are having such a miserable experience. I'm at the same stage of FOLFOX as you are, and so far my side effects have been very light. Ironically, although I feel fine most of the time, I have had to miss two weeks in a row because of low platelets and low neutrophils. As a result, my oncologist reduced my Oxaliplatin dose by 20% for Cycle 4, and added Neulasta, in hopes of keeping my blood counts up.

The NP and the oncologist say that almost everyone ends up having to take breaks and/or reduce dosages: the important thing is to establish a schedule that enables you keep going. It doesn't sound like they've been able to strike that balance yet for you.

Oh, and although I haven't noticed any smell, I've noticed that I have become MUCH less attractive to mosquitos. :D
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs 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
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

teresajj1
Posts: 42
Joined: Sun Mar 27, 2016 7:36 pm
Location: Florida

Re: Start tomorrow. So scared.

Postby teresajj1 » Fri Jun 29, 2018 5:24 pm

I was terrified as well. The thought of having toxic chemicals directly put into my chest was terrifying. It was no fun but I think most people are able to tolerate it relatively well. On Folfox I had chest pains, neuropathy, mouth thrush, diarrhea (although I think that was from resection not chemo)and fatigue. I think my mind had a lot to do with the chest pain as well as alot to do with the reason I stopped.

Best advice I can give is to go into it thinking "I can do this". Your attitude will have alot to do with how well you handle the side affects. Each time you do a round, think, "1 more round down, _ many to go!".

You Got This!
Dx 3/16 @ 36yrs Stage IIIB
RT Hemi-colectomy
T3N1M0. 2/37 lymph nodes
4/2016 Started 12 rounds of 5 FU & Oxi Chemo
7/2016 Stopped chemo after 5 rounds due to chest pain
8/2017 MUYTH Gene
10/2017 Clear CT Scan; CEA 1.9
5/2018 CEA 447
6/2018 Stage IV w/drop metastases to peritoneal cavity
7/2018 Cytoreductive surgery & Hipec (3 tumors, 2 nodules on bladder, and ovaries removed)
05/2019 Clear CT
10/2019 2 new nodules in pelvic area/CEA 19
11/2019 6 Rounds of Chemo

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: Start tomorrow. So scared.

Postby Capri » Sat Jun 30, 2018 6:45 pm

Hi lakeswim,

My son will have #9 out of 12 FOLFOX infusions come Monday 7/2/18. He's on the same regimen as you are every 2 weeks: Zofran (anti-nausea) and steroid (dexamethasone) prior to the FOLFOX infusion. He missed one oxi treatment due to elevated liver enzymes and he was upset about that; that week, he just received the leucovorin and 5FU. The infusaport soreness lasted a couple weeks. Having the 5FU pouch to wear for 46 hrs is bothersome but not terrible.

The first side effects he noticed was the tingling/sharp feeling in his throat, jaw clenching, cold food/drink intolerance and fatigue. The throat/jaw symptoms began right away and the rest by 2nd treatment. He uses an oven mitt or pot holder to take foods out of the refrigerator. Neuropathy in his fingers started with infusion #7 but so far it is mild. He cannot take being in the heat, whereas before his diagnosis, he could tolerate it quite well( it's basically hot & humid where we live from about May to October). He was walking 4 miles every day but had to stop due to the heat. He works every day but gets tired by 3-4 pm and he goes to bed around 8-8:30. There is still some peristent nausea, vomiting only a few times.

As you know the side effects are cumulative and that is what my son is experiencing. He gets chemo on Mondays and used to feel pretty good by the weekend. Now his window of feeling good is getting smaller and the side effects last into Tuesday-Wednesday of his non-chemo week. His oncologist told him he may not feel really good until about 2 months after chemo is completed. He also is anemic from bloody stools prior to surgery in January, so he is dealing with that too. It's hard to build up the red blood cells when you don't feel much like eating.

Anyway, that has been his experience. I hope it helps you in some way. Sounds to me like you are coping well an finding out what your journey is like with chemo--a journey no one expects to take but here we are anyway. I wish you well. There's a lot of good support on here. Let us know how you continue to do.
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: Start tomorrow. So scared.

Postby Capri » Sat Jun 30, 2018 6:49 pm

O Stomma Mia--thanks so much for the Tips on oxiliplatin!! Very, very helpful; I saved the info.
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: Start tomorrow. So scared.

Postby retiredteacher » Sun Jul 01, 2018 11:40 am

Not a lot to add except that my experience has been very similar to yours. Be sure to drink your liquids at home, even if you set a 15 minute timer on your phone and take a few small sips each time. Stay on your Zofran or other anti-nausea - take it on a schedule even if you think you don't need it. Had the same situation with the Oxi effects kicking in at the end of infusion. Nurses kept me on a s-l-o-w infusion and I'm sure this helped. Used several layers of seat cover paper at the clinic, as even the cool toilet seat was enough to set off the "throat effect." Ditto your observations with nearly everything, including the smell. Everywhere. I know my dog noticed as he became curiously sniffy and always left after about fifteen seconds - with a big snort! :shock: I was on CapeOx - the oxi and capecetibine (Xeloda) were reduced 20% after the third infusion, and halted completely after cycle four due to gut issues (pain, diarrhea) and neuropathy. This new sequencing you are on makes a lot of sense - try to hang in there to the best of your ability, but communicate with your oncologist. My two nurses each had very different opinions. I believe that, at this stage, the dosing level is dependent upon our own individual reactions as well the art, knowledge, and experience of our oncologists.
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019


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