January 2013 chemo group

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    MandyNJ- Thank god you will be ok. What a nightmare you have endured. You truly are a strong woman and I admire you. I wish you a very quick recovery and a very uneventful next port placement. Have the guys that saved you do it!!. Rest and heal and hug your DH and your babies extra tight.

    The steroid high is over, I cannot keep my eyes open much longer. Going in for an Ativan and my pillow... G'nite all you beautiful ladies!

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  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    Okay here's a tmi test, does anyone else have green snot and or blood when they blow their nose? I don't have a blood nose but there is evidence of a small one, similar to after flying long distance for example. Also my snot has been bright green. my temp is 36.5 which is fine except its normally about 35, yes I run cold :)

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Mandy, thank God you are doing okay now and thank God you had the right person to correct the situation.  Also, thank God your scan was okay (I don't want to forget to mention that great news but gee whiz...you've gone through so much that it's overwhelming just to read it - so I can't imagine what it must have been like to live it - for you, your family, your husband...BIG HUGS!).

    Your post has me shaking my head at how darn scary/treacherous this entire experience can be.  

    Sending you well wishes and healing prayers!



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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    My nose had been dry... and when i blow it there is remnants of blood. Not really a bloody nose. I am thinking its just because we are so dehydrated and dry. My skin is so dry... lotion does help and normally I don't need it. I did have what I thought was a menstrual cycle the day of my first treatment. It wasn't much but definitely there. It also occurred 6 weeks after having my Mirena IUD removed. So, if I have a cycle this week then I am going to say that the only thing I noticed about bleeding would be the nose thing. (sorry about the tmi also) Who knows... That's all I have for ya! I also found a Celsius to Fahrenheit conversion chart so I can relate to a temp of 35.5. LOL

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  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    Thanks ski girl!

    Yes I thought my period was coming this morning, had terrible cramps and my boobs have been heavy, but nothing has happened yet. I hope Im not preggas. Sad joke, of course im not. I really hope what's left of my femininity will survive this toxic warfare which I am waging on myself. Yes maybe the blood nose thing is due to being dehydrated, like when we fly in planes the air is so dry :)

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    kiwikid, 

    A few years back I saw a segment on the local news about the number of people in the Los Angeles area who suffer from something called rhino-sinusitis.  It's a persistent sinus thing that's hard to clear up.  I just looked it up and it can be related to autoimmune issues so I don't know if chemotherapy would fall into that category or not.  

    If I were you I'd mention it to my medical oncologist because from what little I understand - anytime there's anything other than clear nasal discharge there's a chance of infection.  SherylB is a nurse and perhaps she can weigh in on this - I'm just going on what I've heard over the years.  

    I think I might have had a little bit of blood following TX1 but nothing like what you're describing (probably more related to what SkiGirl mentioned - dryer, winter air - even here in California).  

    Also, very interesting about the dreams/faces.  I had never heard that.

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Lee,

    Thanks for the website, I was wondering what a Buff was and now I know. I think I will order one even though I have lots of caps already. They look cute.

    Sheryl

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Mandy,

    OMG I can't believe the problems you have had you poor thing. You can have two chapters in my book when I write it. I think I am gonna call it "The Murphy's Law of Breast Cancer". I have had a few (very few compared to you) little slaps along the way. God Bless you and your beautiful family and children.

    Hang in there, Sheryl

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    kiwikid,

    I too have had small amounts of blood from my nose and I am using a nasal saline a couple times a day for dryness. Green snot I always thought indicated bad news, however, watching Dr. Oz (a heart surgeon with a tv show about all types of health stuff) and he said the green snot was just the bacteria, pollen etc that had stayed in the nose/sinus for a longer time. My suggestion is to irrigate with nasal saline a few times a day. If you get fever higher definitely call doctor or sooner if worried.

    Sheryl

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    kiwikid,

    This is for the Americans here who don't know centigrade. Temp 36.5 x 9 / 5 +32= 97.5. Many years ago we tried to convert in this country and didn't make the transition at that time but still had to know the formula for a few different calculations. Now in the more advanced (say computer driven) health care we do use celcius temperature.

    LOL. Sheryl

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  • gr8flmama21
    gr8flmama21 Member Posts: 31
    edited January 2013

    Hugs mandy-you really have had rough seas over that port. Hope its better soon.

    Kiwi n sheryl-i suffer from sinus issues and i do the neti pot at least once a day. It helps me so i have continued to do since started treatment.

    Thanks all. I got my laughter & perspective back tonight when i found the cheat cheat my dd made for her Italian exam Friday. I laughed like I imagine that crack monkey does!

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    I have used the Neil Med sinus rinse many times but haven't tried it since chemo. 

    Here's a link - I'm not sure if it's an internationally available product: 

    http://www.amazon.com/NeilMed-Sinus-Rinse-Bottles-Premixed/dp/B001HDRHR8

    Just be careful to always use distilled/purified water if you try it, Kiwikid.  A while back there was a news story about people who had failed to use purified water and contracted a rare amoeba infection.  I won't go into the details but I will post the link in case anyone is interested.  

    Caution - not for the weak-stomached but reinforces the reason why purified water is so important (i.e. it can be a life/death thing):

    Reuters: CDC/Amoeba/Neti Pot

    http://www.reuters.com/article/2012/08/28/us-cdc-ameba-neti-pot-idUSBRE87R13620120828

    Of course, it doesn't matter if it's a neti pot or the Neil Med sinus bottle - what's important is the type of water you use. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Today was day 10 after AC #3. I'm so weak it takes all my strength to walk from the driveway to my front door. I feel too faint to stand for more than a moment or 2, I have sinus pressure, and if I don't take Tylenol regularly I have aches & chills. This 3rd tx was by far the worst by far. I pray my last one is better.



    I haven't driven since treatment and I'm so faint I'm afraid to go anywhere without my husband.



    Welcome to all the new people. Please forgive me for not scrolling up & down to get all the names.



    I can't wait for AC to be over. Final one is feb. 8.



    Blessings

    Paula

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  • Oliverhog
    Oliverhog Member Posts: 74
    edited January 2013

    Mandy, I am so sorry about everything you've been through.  Thank God you came out of it O.K. in the end.  

    Kiwi, I've also had blood in my nose.  I think it's the dryness.  

    On a completely different note, my poor little seven year old son was in a wrestling tournament today and in the first 20 seconds of his first match the other wrestler threw him down, Peyton put out his hands to break the fall, the other wrestler came down on him and Peyton's left radius and ulna snapped.  He spent the afternoon in the ER trying to get the breaks set, but the ER doc wasn't able to do it.  The three of us are sleeping (trying to) in our bed tonight.  He's asleep right now.  He's been occasionally rousing and whimpering in pain.  It's heartbreaking.  Tomorrow my husband is taking him to the orthopedic doc to see if they can set the breaks properly and recast him. It is so hard to be going through chemo and being as fatigued as I am because of that lousy restrictive lung disease and be so unable to help my son.  I know I can't make his pain go away.  But that's being a mom, isn't it.

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Clearly today needs to be over and a new, far better day needs to begin. Too many bad things happening to too many wondeful people.

    Jubby, wow that sounds terrible! There must be something your docs can do to help you with that. I hope your MO has some excellent answers for you tomorrow that make you feel 100% better. Keep us posted.

    LeeA, I did have Neulasta. I wonder if that's what caused the heartpounding. I sure hope not, 'cuz I've got 3 more of those bad boys before the switch to Taxol...

    Lauren, hugs to you, bella. What a rough go you're having. Sending prayers that this is your absolute last piece of bad news, and that it's all smooth sailing from here on out. ((hugs))

    Holly (kiwi), my MO said my counts would be lowest days 7-10, and that's certainly been the case for me this time. My WBC count Wednesday (day 8) was 2700 (pretty good! Thanks, Neulasta!), and today (day 12) it was 7000.

    shawkins, ciao bella. Sounds like a rough first week for you. I don't care if it could have been worse; you go right on ahead and complain. We're allowed. This all stinks.

    ((((Mandy)))) Oh, honey, what a nightmare! And thank everything sacred and holy in the world that they were able to take care of you. You rest and be well, and keep checking in to let us know you're okay.

    Paula (soteria), I wish it were easier. Gentle ((hugs)) to you, dear girl.

    Oliver, hugs to you, your husband, and your precious boy. (And this day can really go hang!)

    As for me, I just got back from a rather unexpected visit to the ER for some blood work and cultures, since I cleverly managed to develop a 101.5 fever right after my last post. Of course, it couldn't have happened while the urgent care clinics were open, could it. Oh, no. Had to go to the ER -- but on the bright side, my MO sent me to one 20 miles away where they were incredibly speedy! I was in and out in 2 hours. If I'd gone to my local ER (3 miles up the road), I'd probably still be sitting in the waiting area. Anyway, no idea what's causing the fever, and my WBC count is good, so go figure. I just wish it hadn't taken them 4 tries to get blood from a vein, and that my MO hadn't asked them to do a nasal swab for flu. Ever had one of those? Holy OW!

    Buona notte, belle. Here's to a much better tomorrow.

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  • Oliverhog
    Oliverhog Member Posts: 74
    edited January 2013

    Bryona, I love reading your posts.  They're always so darn personal.  Which is great!

    I think the Neulasta is the source of a lot of the problems we feel.  It must be forcing our bone marrow to work harder than it normally does and maybe that's one of the source of my extreme fatigue.  I'll be getting half the dose the day after my next treatmet.

    I firmly believe that the probiotic I'm taking has been the reason I've had so few GI SEs.  I haven't been constipated.  I haven't had diarrhea.  I rarely get heartburn though I've been taking lansoprazole for the GERD now for quite some time.  I've hardly taken it at all.  Haven't felt the need to except maybe three or four times.

    Also, I think what helps our bodies heal is protein.  It's not that easy, for me anyway, to get 60 grams of protein per day.  My husband found this chocolate protein drink at Costco that has 30 grams of protein per 10 or 11 ounce serving.  It's only 160 calories, so if you're looking for calories, you'll need to find them from other foods, but the protein is really important.

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Whoops! I almost forgot to send Happy Hour good wishes to klaudiak and Colleenkelly, who are bellying up to the bar tomorrow. Good luck, ladies!

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Mandy, I am so sorry you had to go through that. how scary for you. hugs!

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Scared about starting chemo tomorrow. I can't believe the day has arrived. Not sure I will get any sleep tonight.

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  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    Thanks everyone for the sinus input, i have found neilmed here in nz so will get some from the pharmacy next time Im nearby.

    Bryona I will ask the MO to send my results through to me, I'm going to the vampires to give blood tomorrow so should be able to get my results.

    Colleen once you get into it it's actually much easier, you have your first treatment, you work out how your body responds then you prepare for the next one and the hair loss. The next one comes around and off you go, you get through it and you come out the other side. I know the side effects are cumulative but I think the fear of the unknown adds to the stress of the first one. All the best for tomorrow.

    Im back to school tomorrow, first day of the year, new classes, new students, new me, ugh!

    May you all have a great week.

    X holly

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Thanks kiwikid and good luck going back to work. What time is it where you are?

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Oliverhug, do you have a particular probiotic you swear by?  I take Natren Healthy Trinity but the integrative physician at Disney recommends one they keep in the cold case in the pharmacy on the Disney Center premises.  When I run out of the Natren I may switch over to whatever it is they carry.  

    Also, so sorry to hear about your boy's painful evening.  Geez. When it rains it pours and pours and pours...  I hope everything can get straightened out for him in the morning. 

    I also agree with you regarding the protein.  I try to get about a 100 g of protein a day in with Fage yogurt mixed in with fresh squeezed orange juice.  A cup of Fage greek yogurt has 23 g of protein and I've read that our bodies need about 100 g of protein to heal during chemo.  I hope it's one of those foods that continue to taste okay throughout chemo.  

    ---

    Bryona - that fever must have really come on sudden!  I'm glad you didn't have to wait as long as you would have at your local ER.  I've never had a nasal flu swab but given your description I hope I can avoid ever having one!  I hope you're feeling better now that you're back at home.  

    ---

    Kiwikid, glad you found the NeilMed there in your area.  Just use the purified water with it (I know, I know, I'm harping like an old aunt or your mother - forgive me!).  You might have some summer allergens stuck up there that need to be flushed free and the NeilMed will definitely flush them free.

    ---

    Colleenkelly, I had trouble sleeping the night before my first chemo as well.  Now, I'm taking a low dose of Ambien and that seems to help a bit.  Do you have things to take along for distractions?  I take my iPad and listen to music and play FreeCell.  I also have a few movies loaded onto it in case I have the patience to actually watch anything.  Wishing you much luck tomorrow.  I'm sure the nurses will take good care of you!

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  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    Thanks LeeA, don't worry, we don't use tap water except for bathing and washing up :)



    Colleen it's almost 10pm Monday night here, so we are 3 hours behind east coast time, but a day ahead. Or 21 hours ahead if its easier to compute that way.



    I hope you get some sleep before chemo but don't worry, even if you don't your body will sleep when it needs to. I take melatonin, just a low dose to help me sleep. I know it's on LeeAs list of things not to take but I'm a sceptic as all of the google results for melatonin and chemo say theyre good together and link to studies which have shown that at 20mg a day (I only take 3) it has enhanced the effects of chemo on tumours.



    It seems everything we learn about this darn disease can be contradicted by some study somewhere. It's so confusing.



    All the best for Monday

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  • gr8flmama21
    gr8flmama21 Member Posts: 31
    edited January 2013

    Thanks LeeA I totally forgot distilled water for the rinse so thanks for mentioning that-very important!

    Oliver hugs to your little guy-it truly does rain and pour. Hope all goes well at ortho this morning.



    Good luck at bar today Colleen. Hope all goes well and you dont get flagged for any reason.



    Kiwikid good luck today as well back at school.



    Bryona and mandy hope you both feel better soon!



    Happy Monday vibes to all. Before work I am off to get a free wig/wrap from our local hospital. Want to have just in case and if I dont need i will donate it back❤

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Oliverhog- I used to drink the protein shakes years ago when I was running... They are so yummy. Just watch for the sugar content in them. Some of them are loaded with sugar. But, that is a great idea to keep up the protein. I have one of these Braun hand mixers and that seems to be the best way to mix them. Happy drinking. Sorry ti hear your son broke his arm. :( that stinks. I would just want to crawl in bed with him and hold his arm so he could sleep comfortably. The things we will do for our babies.

    Colleen and klaudiak good luck at the bar today (it's 5:51am and I am WIDE awake). You both will do fine. remember to breathe. and bring something to do. I have my laptop and my DH is with me. I think I could go by myself now but he wont hear of it! He is so protective of me sometimes. It's funny he would be like this because he  has always known me to be tough and I really don't need a hand to hold. until this.... So, go to happy hour, don't fall off your bar stool, drink well and play the juke box. Everyone loves music in a bar... just a little advice from the resident bartender here...

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  • MandyNJ
    MandyNJ Member Posts: 73
    edited January 2013

    LeeA - you are a woman after my own heart. You post the best health articles. However, I literally just did my neti pot not 10 mins before I saw your post. I've used it for years and have never used purified water. So the lung and port and the cancer didn't get me...I'm gonna be done in by amoebas! Hahah I will get purified water ASAP. I'm not even sure exactly what purified water is. I use a brita, but I don't buy special water.



    Oliverhog- I'm so sorry about your son. I can only imagine what you're feeling. When my 6 year old broke bones in his foot last summer, mama bear was in full force. Your husband will do the heavy lifting, and you can do the cuddling and watching marathon hours of shows you don't want to with him. :)



    Colleen -good luck today! We would've been chemo sisters, so I'll live vicariously through you. I'm sure it'll go very fast and it'll be over before you know it.



    Bryona - you really are the rock and your posts feel like hugs. :)



    Lauren - I hope you're feeling better. Let us know how you are feeling.

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  • PeggySull
    PeggySull Member Posts: 686
    edited January 2013

    Soteria, I had the exact same experience after AC 3 and 4 (las tone). It slowly went away about 10 days after AC 4. Part of it was I had become anemic, the other is just the cumulative AC effects.



    My MO sent me for a chest x-ray to be thorough and it came out clean.



    Hang in there and be sure to talk to your MO about the symptom.



    Peggy

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Italflamingo,  Ciao Bella! As Byrona mentioned, I have been using the Brian Joseph's gel for my brows/lashes. Haven't seen any fallout yet, but then again I still also have arm hair and the other normal peach fuzz on my face. Not sure whether that is any indication as to whether there is still more to come or not.

    Byrona, the ostrich approach is the best. So glad you got to walk without your heart jumping through your chest.

    Jubby, there is no way you should have to endure that kind of pain. Call you onc asap!

    LeeA, love the running wild person at the end of your thread. Don't guilt yourself into thinking you don't need to rest though. Thanks to one of the MO's I had sought info, but didn't end up sticking with, he told us that chemo will make you want to lay around and use it as an excuse. Well EXCUSE me, but yes dammit, it does make you tired and you need to rest. Now my DH always says I can't just lay around becuase it won't do me any good. So I appease him and do my exercising (if you can call it that) and then I lay around.  LOL

    Lauren15, I am so, so sorry you have to endure this on top of everything else. Stop googeling though! That will definetly scare the shit outta anyone. Just listen to your medical team for now.

    shawkins64 Ciao Bella! I see you are on ACT. Are you doing dose dense or all three cocktails at once? Sorry you have to be here, but glad you found us.

    kiwikid my MO said days 7-14, basically the second week. But then again I wonder if it is different for different treatment types. Doubtful though.

    3littleangels do you still have hair? That could make a difference with the buff. I tried it on when I first got it and hated it. But now it is my godsend. I live in it and need to order more. I know most of the videos say to twist it, but I personally like to put it on and sort of fold the tail into a little pocket on the back of my head.

    teacherjulief Ciao! I keep hearing the treatments are cumulative, but as we've all learned everyone reacts so different. The first was so doable for me, I almost felt guilty for feeling as good as I did. But this second one had me down just a little more. Feeling much better today though, and I'm day 4 post rocking the bar stool.

    Oh my MandyNJ I'm sitting here in shock. You poor dear soul to have such a life threatening scare. You are one tough mama though! Hug your kiddos so very hard today.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    skigirl, not sure if anyone else already chimed in . . . to add that line where I have "If god brings you to it . . . . " go to settings and add a signature.

    Holy cow do I have a lot to catch up on.

    Alright you mentioned it, so now I have to ask Skigirl. Did you have the Mirena removed because of the BC and by advice of your MO? First MO I met with said we would remove it, but not a big hurry. My new MO said she doesn't have the ladies remove it becuase all the drugs wreak enough havoc with the system she doesn't want to add that to it all. Of course, we can go into long discussions about research findings, or lack thereof, so I'm just a little curious as to what had you remove it.

    Oh Oliverhog, that is just awful when you have to see your little ones suffer. I'm sure they will get him all taken care of today, and even though it feels like eternity while you wait to get it all done with it too will just be a blip in his little radar.

    I'm so glad you mentioned the protein fact. I've had intentions of drinking protein shakes, and now that I don't have much of an appetite that just reinforces the need for it.

    I'm so jealous of you all that are talking about eating healthy and nutritious. It seems like these days everything that I've noted along the way and all the "right" cues that I wanted to follow have gone by the wayside. Not that I'm eating fast food, but the foods we are choosing probably aren't the best (dive Mexican food). Last night I picked up salads and bread from Olive Garden, but it just didn't taste as good as I planned on. I love salad, but it just is not doing it for me. And some of you have mentioned staying off the coffee? Oh dear, well I don't know if that will ever happen for me. I do find the first few days following chemo I don't want it as much, but I will at least suck down part of a cup. Don't want those damn coffee-withdrawal, killing you without putting you out of your misery migraines.

    Yesterday was just a beautiful day here. I can't believe it is January and we are getting rain instead of snow. January is typically our coldest month. But, everyone is enjoying it. We got out for a bike ride, which made me feel much better.

    Hope you all have a beautiful Monday. Good luck at the bar today Colleen. Not that you need it though, you will do just fine.

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Good morning all,

    Don't remember who suggested the lint roller for the peach fuzz but I started using it this am. DH got a chuckle watching me. It really works well.

    Next chemo is Thursday and the way it is falling out I should be about totally bald by then.

    Sheryl

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