Taxotere, Carboplatin and Herceptin
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Kind of frustrated!! Just got confirmation from my surgeon just now, that my pathology report had an error WHICH I FOUND, the change being that I had 6 lymph nodes removed not the 3 that the doctors have been telling me for the past year! Sure does make me question what else could be diagnosed wrong! Wish I could get paid what they get paid for doing there job! Hope you don't mind me venting! Ladies, go over your pathology reports over and over to make sure it all matches up!
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Carolyn!!!! Your surgeon's office is NOT treating this seriously enough. If you do not feel significantly better in the morning, DEMAND an appointment with the doc. If they will not give you one, get an appt. with the GP or Onco. Green, projectile puss is BAD. Especially since you were on Cipro for another issue.
Don't make me come to Oklahoma!!!
Love ya, Lisa
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Lady_Madonna - the reason this is so backwards is because I chose a lumpectomy to begin with. When the pathology came in, it was of course triple+, with estrogen at 100%, progesterone at 50% and HER2+++. I also had extensive DCIS in the same breast that was removed at the same time. They weren't multi focal though. I've found out I have a 35% chance of local recurrance and am high risk for recurrance/new cancers in the other breast. Since the Sx and finding out this information, I've decided on a BLM. I talked to my Sx about this, and she said she would do the Sx but not until I saw my Onc and chemo was done as she would not allow tx to be held up. Dr. My family Dr. has sent in the referral to my Sx in the meantime. My Onc. said that I'm kind of in a grey area. If it was one node they wouldn't do radiation. If it was 4 nodes it would be mandatory. Because I have 2 positive nodes they are giving me a bit of a choice. However, she does recomend having the radiation, especially for the nodes, and said the Radiation Onc. will probably have the same opinion simply because the ca is agressive. I see the RO on the 2nd of July and will also ask for his/her opinion. I know a lady here who had a unilateral mast. when she was diagnosed, and they radiated her nodes, she didn't have a choice. I don't know, I'll have to get some questions together for the RO and go from there. I kind of like the idea of 'extra insurance', if you know what I mean. By the same token, I am not looking forward to going to the city for 5 weeks. Then, I wonder if I have the radiation if I will be put on the very bottom of the Sx list. I really don't want to wait that long and no way will I change my mind - so that is worrisome to me also.
A big huge congrats to you, btw, on finishing your TCH! That is awesome. Keep us posted with how you're recovering ok?
Gramma - I'm so sorry to hear about your infection. Definately postopone your mammo if you're not completely healed by then.
CrazyBC - I don't know about the fasting Crazy. You're body needs extra protein while trying to repair itself from the effects of chemo. Protein helps your body rebuild blood counts among other things. Personally, I drink boost if I'm not eating well and also to get my body in condition for the next chemo. I have put on a few pounds, but I am also exhausted from chemo so I will deal with that once I'm done TCH.
This chemo, my 5th, so far has been the easiest. Not sure if my body is getting used to it or what's going on - but I never totally lost my appetite. In addition, my energy bounced back quicker. By day 7 it was returning. That is a first for me. It usually takes anywhere from a week and a half to almost 2 weeks. Hope the next one goes as well!
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My infection is a little better. I got the med yesterday and so I think by tomorrow it should be much better. I agree they should have done a culture but I guess they guessed right. Keflex is good for all over infection most times. I was worried because when he did this he said that radiated areas do not heal good. he left the stitch in there way longer than I thought it should have been but then with him taking stuff out deep I figured it needed the time. I never wanted the radiation to start with and they said it was absolutely necessary. Now I am finding out you can't heal good after radiation. they took 22 lymph nodes out but only 3 were cancer. that sounds like I am taking it lightly but I mean there were not so many and they removed the rest that were on that branch as my surgeon said. He is not the one who did the biopsy. I wish I had him back. He moved to teach in the Western part of Oklahoma. I did read yesterday that sometimes these Necrosis abscess. Wish I understood all I know. My arm pit had been hurting and the top part of my breast had a lump but now I think that must have been from the infection because it is better today. Thanks everyone for the concern Just don't ignore stuff like I was doing. I guess something has to hit me in the face to get my attention these days. I thought I had a bug because I work with the public. Little did I know!
I hope everyone here takes care and I know it is hard to eat when you are on chemo. I would drink chicken broth because the soup was too greasy for me but I could make a nice little soup with rice and have some toast with it and I got something in me. I did lose weight and so far kept it off. I still don't have a good appetite but I try to make the best of what I can get down. My main thing was to eat light on the chemo day and not be constipated going into it. the 3rd day after chemo I was so sick but then the few days before then next one we always went to get enchiladas which I craved. I could eat a fourth to a half of one and I would bring the rest home with me and eat a little bit for lunch each day before the next go round. Ahh! I don't miss those days.
Lisa, I wish you could come to Oklahoma but it is hot and humid here too. I will go to my onc if things don't get better. I think these doctors spread themselves too thin trying to get to the small towns out around Oklahoma. I wonder if it is a shortage of doctors of if they are wanting all the business? I know my onc goes to a couple of small towns but then they have to come to the city for treatment. I live in a small town too but it is so close to the city you can't tell where one ends and the next begins.
Carolyn
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Roller coaster ride!! No sooner have I finished my chemo than my onc has informed me that I need to be BRCA tested, and in the event that I'm positive we'll forego rads and opt for a bilateral mastectomy!! YIKES!! I'm really not emotionally prepared for this... although it's my understanding, as someone else mentioned, that it's rare to be BRCA+ and her2+, that's also what they told me when I went for my diagnostic mammo... "You're 38 and healthy, it's extremely unlikely to be cancer..." !!! Well, I went in for the blood test on Tuesday and I'll have the results in 7 to 10 days. I'll let you know how it goes.
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Melanie - waiting for the BRCA test results was very difficult for me, as it would impact my daughters as well as myself. I was sure it would be positive, but it wasn't. I had to wait for a month for results. Glad your wait is shorter. Hope you will get good news as well. Try to relax and keep it from your mind as much as possible (easier said than done, I know). Let us know as soon as you hear.
Amy
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Lady-Modonna -
Good luck with the BRCA test. I to was surprised when my test came back positive. Being HER2+ and BRCA + is not that rare according to my onc. I asked him about that after reading it on the forum. But, since I learned the results it made my surgical options easier. I am being treated at a teaching hospital and got a ton of info, no one tried to persuade me either way, but once I made the decision, everyone supported me and told me it was the right one. I am 5 days out from surgery and happy with the choices that I made.
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Thanks for the encouragement. That's the thing about this disease- it's just so random, who knows what the results will be! Amy, I'm glad for you that you are BRCA negative and stlcardsfan, I'm glad you're at peace with your decisions!
Yesterday I had a consult with the radiation oncologist and as I was filling out my paperwork I was thinking "I can't believe I'm in a cancer center!" How's that for denial?!
The rads onc gave me a bit of disappointing news...my surgical margins were unsatisfactory and I'll need extra rads or it's "highly likely" that my cancer will recur in the original tumor site. :::sigh::: It's apparently where the breast tissue ran into my skin and short of making a hole in my breast the surgeon scraped out as much as possible. Anyway, a couple extra weeks of rads is supposed to take care of it.
Some really great news would be welcome at this point!! I guess I'm just going to have to accept that fact that I'm never going to be "done" with this... my type A personality likes to take care of business and wrap things up in a tidy little package... hahaha, not this time!
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Sorry, Melanie, that you're having to endure this. The unknown is so difficult. When we know, we can make a plan and get on with it, but in not knowing we let all the possibilities roll around in our head and drive us crazy.
I am 10 days post-chemo (my first) and went 2 days ago for my 2nd Herceptin at which time they checked a CBC. My ANC was 100 so they gave me a shot of Neupogen and one on Thursday as well. They re-checked the CBC today and the ANC was 44...so I got another shot and will get one tomorrow and Sunday as well and recheck CBC on Monday. Anyone else deal with this much of a drop?
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CrazyBC - were you taking the Neulasta shot 24 hours after Chemo. It seems a lot of people do and that helps with the WBC and ANC. It seems some doctors play a wait and see how people react to chemo, and then it is more meds to get the levels back up.
I was on the Neulasta shot after each Chemo cycle and my levels held there own. Did drop as treatment wore on, but never to the extreme low level.
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No, no Neulasta for me. Guess mine is one of the "wait and see" docs. I may be in for that next time though after my stellar performance this time. I thought I'd do better as I've always been the "strong and healthy" type...never sick, big bones. Guess they gave me "as much chemo as you can handle" according to my bloodwork and size just like they said they would. As others have said, it's a poisoning just short of killing you.
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My doc was 'wait and see' in regard to Neulasta as well. I never ended up needing it. I took whey powder (mixed with applesauce) daily during the last 3 cycles. it helps your bone marrow regenerate or something. Who knows if it helped or if I would have passed anyway, but it might be worth trying. It's good protein (and it's non soy) anyway.
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I haven't had any Neutasta either. My Onc has that same wait and see attitude, which is ok with me. My blood counts tend to drop from day 5 - 12, Nadir, I believe it's called. She has me on cipro during those days and I have scripts for amoxicillan. Other than a throat infection after my 2nd round, everything has been good. I also watch my protein and try to get extra if possible from snacking. The whey protein sounds like a good way to go. By the time the next chemo is here, my blood counts have always bounced right back.
Lady_Madonna - Sorry to hear your margins weren't satisfactory. Does the Rad Onc think the end result will be the same as if the margins had of been clear? Two weeks of Rads would be so worth it then. I have to meet with my Rad Onc on July 2nd - but Onc told me I'd have 5 weeks worth. Not looking forward to that.
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Hello everyone. I had long rads but not because I didn't have clean margins but because of the fact that mine was in the lymph nodes. I hated every minute of the rads. It was the having to go down there which takes 30 minutes to get there and the five minutes to get checked in and zapped and then 30 minutes home again. for some reason I was always so tired after radiation but I did work during them. I was so burned it was crazy but I got some soft sports bras and wore tank tops with shirts over them. I was disguised pretty good but the look on my face said I was in pain.
I took Neulasta after the second chemo but the first they tried Neupogen and you have to take shots every day for as long as they decide. it never brought my count back up so then the Neulasta is stronger and only takes one. I did okay with that as far as keeping the white count in acceptable range but the bone pain from it was terrible for me. Some took claritin but I just never thought it could help. I guess it does some swear by it. My second chemo made me have huge mouth sores. I could barely open my mouth. they were all over my lips and down my throat. They gave me diflucan and an anti viral med and a mouth wash besides the salt & soda I was using constantly. I do not think it is a matter of keeping your mouth clean it is just something that happens to some and never to others. but then I am the one who has the red blood count still down 2 years after chemo. I did take an antibiotic a week after every chemo for a week. I did not take it the last chemo because I was so tired of taking it. It seems this is a practice the chemo place I go to does. Some refused to take it.
I was never offered to get the BRCA test. No one in my family ever had cancer but my brother and I got it within a few months of each other. He had head and neck cancer though. I was grade 3 stage III Her+ ER-/PR-. My brother told me he was Her+ but the onc said he didn't think that was right. I wanted to see his path but his wife can't look at anything dealing with that yet. I won't push her.
Have a good day everyone. I am off today! Yes!
Carolyn
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Many doctors are taking a "wait and see" attitude toward Neulasta these days because the stuff is so darn expensive. My Medicare statements say $3000 PER SHOT. With all the cut backs these days some insurances will not pay for it. Medicare paid for mine, but ONLY if I got it through the Moffitt pharmacy and had it administered through the chemo facility. Some insurances would pay and you could even take it home and administer it yourself the next day. I live 2.5 hours from Tampa so going back the next day was not practical so I spent the night in Tampa after TCH.
My life is turning into a soap opera. I still have peripheral neuropathy (in both hands and feet) 11 months PFS. It's not getting better. If anything it is getting worse. I dropped my iPhone this week because I couldn't "feel" it in my hand. Also, I've not sweated since first TX in April 09! And my post radiation scar tissue is painful and has gotten me depressed. I emailed my onco' PA this week and told her all this stuff and she said I needed to get myself for evaluation next week. I wasn't due my first quarterly followup until August, but she wants me to see the doc before that.
On top of all this dragging me down.... The old timers here will remember my rant last fall when my Sig-Other of 21 years walked out on me 2 weeks before BLM and took my dog! Well, I went to the pound Thursday and picked out a cute 3 year old, small mixed breed for a companion. He's a real cuttie. I took him to the vet this morning and he tested positive for heart worms! Now why would the humane society let a dog go to a new home that they KNEW had heart worms? His health record showed he was "treated" and they lead me to belive he was cured!!!! I know if I take him back they will put him down and if I keep him it's going to cost me about $1,000 which I really can't afford. I'm in a quandry and really don't know what to do.
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IsThisForReal, Yes, the RadOnc says the extra rads will take care of the margins and that rads are very effective for dealing with any remaining cancer cells at the original tumor site. So seven weeks of rads plus a boost at the end is definitely worth it. He did give me several treatment options, including higher density plans that were shorter, but I'm opting for the good 'ole tried and true "standard of care."
gramma, I'm so glad you have a day off and I hope you enjoy every minute of it!! I'm definitely going to be getting myself some soft sports bras since my boobs aren't exactly tiny and we're in for an extra-long dose of zapping! Oh boy!!
Swampy, What a heartache! I can empathize in sooo many ways!! I just dropped my iphone too-cracked the screen real good- but I took it to a cell repair place and they replaced the screen for $99. The neuropathy really stinks, but it came on late for me and I'm hoping it won't last long-??? I wish I couldn't sweat- haha!! This chemo-pause is making me crazy!!
I can't believe the no-good dirty dog took your dog!! Believe it or not, I can empathize with you here too...just before my diagnosis I got a sweet little yorkie puppy. I'd never had a puppy before and I fell completely in love with him!! He was only home a few weeks when I noticed he just tired out too easily, didn't act like a "puppy" enough and long story short he was diagnosed with a liver shunt. I tried to have it surgically repaired, but they couldn't do it because the way he's formed the risk was too high it'd kill him immediately. So he has to be managed by medication and diet for the rest of his life, which will be possibly only a few years. Oh my gosh, I was absolutely heartbroken. I literally had just brought him home from the vet hospital the night I found my lump.
The breeder offered me a new puppy-like I could just "exchange" him!! And I understand why many, maybe most people, would- but I couldn't do it. I felt like we both were imperfect and he came to me for a reason and I was going to take care of him and give him the best life I could for as long as he had! Oh my gosh, I don't mean to lay that on you and your situation...I'm very fortunate we could afford the vet bills and everything. Your situation is entirely different because they NEVER should have put the dog out to be adopted when he was sick...I'm so sorry!! I'm going to PM you the email address of a resource I think may be able to help... Is the Humane Society offering any alternatives?
Hang in there! Hope you have a relaxing weekend, and I bet there's a way to get your new buddy healthy!!
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Hi all, sorry I'm not posting enough to get to know everyone! I have been reading posts, though. This board does move fast sometimes!
Lady_Madonna - keeping my fingers crossed for your BRCA status. This is such a winding road with so many variables. It's interesting what we feel is fortunate these days, because there is always something else, isn't there? Hopefully you will be relieved that you will be negative for BRCA. I guess we are all happy to be fighting this now rather than 20 years ago. Okay, I'm rambling. I just have such great hopes for all of us.
Swampy - I'm so sorry things are going so rough for you. You should be able to move on, yet you still fight the effects of treatment. And then all the other drama! You need a vacation. I hope things settle down for you soon. I hope you are able to find resources to help your pup.
As for me, I had to do neupogen and abx last cycle, so this cycle I got the neulasta shot. They did coordinate it so I could do it in my own town, though, so I didn't have the hour drive each way. My nails are getting sore (day 6 of round 4). I hope I don't lose them. Good news and hope for those starting this protocol - my oncologist felt only "normal young (ie. premenopausal) breast tissue" at my last visit. She still found a small lump in my lymph node, but the breast felt fine. So after 3 full rounds of TCH, my formerly 5+ cm mass is no longer palpable. Not every tumor will respond this way, but it can happen!
Keep up the fight!
Dawn
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Dawn and Melanie...Thank you for the support. Amazing how some of our lives parallel, sick dogs, men who feel the need to walk out. On top of all this drama my family is still going through the truma about my BIL who shot and killed my nephew. The cops arrested him last week on 2 counts of felony gun possession, but no mention of the murder/manslaughter of my nephew. He's out on $15,000 bond which his mother put up for him. He needs to be behind bars not walking the streets of Tampa!
Email from my ex Sig/O... he's filing personal bankruptsy and his car (a Saturn Skye that he thought was so cool) is being repossessed. What goes around blah, blah, blah. I guess I'd be entitled to some personal satisfaction over all this, but I don't. Just sad.
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Thanks for the info, everyone!
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swampy - sorry to hear about your new puppy, I know the Humane Society will help with that sort of problem. Have you checked with them?
My heart goes out to you. My Bulldog is like my child!
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Swampy, it is good to hear from you but so sorry for your problems. As for the neurophty, I have a spell of it occasionally but not as bad as I did during chemo and Herceptin. I hope you can find something to help with that. Do you have one to the covers for your Iphone that makes it less slick? I don't have an Iphone but I work with people that do and they all have those covers in different colors. Easier to grip. So sorry for your puppy's problem. Does your EX SO still have the dog? Maybe he would like to let you have it back? yes what goes around comes around. Just goes to show God does not like ugly. I hope the dog can be treated and maybe the place where you got him will help you with that.
Lady_Madonna, do just exactly like they tell you and don't use lotion or anything on your skin before your rad tx. It will cook you like frying in grease. they told me to use Lever soap and they gave me the lotion they wanted me to use and then when i got blisters they told me what to buy for that. If you can let the air get to the radiated site and I know that is not easy if you have children but if you can keep it cool and dry. hard to do in this weather I know. I wish luck on this. Most people said it was a walk in the park compared to chemo but I did not find it to be so and I am larger up there than most. I went to Wal Mart and got the cotton pull over sports bras. they are not that comfortable but I looked around and everything was tight or had zippers and I could not do that! I hope it is easy for you!
Mntdawn, it is hard to keep up with this site but very helpful. I am happy for your progress. Are you going to have a mast. after chemo? I am sorry I have forgot what most have done. My diag was almost the same as yours but they did a lumpectomy on me before chemo and took out 22 lymph nodes from under my arm that branched from the tumor. 3 were cancerous and the sentinel node was as large as the tumor. I could not even feel that but the surgeon could. I remember after he came in to talk to me when I woke up and he was telling me what had to be done he just walked away looking sad and shaking his head like he was saying no. I worry about that some days but I keep telling myself I was still drugged.
Everyone else I wish you a great day.
Carolyn
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Carolyn, It is very likely I will have a bilateral mast after chemo. I don't have a lot of breast tissue (not flat, but not big either). My onc says after they take out what they need to, a lumpectomy would not provide a good cosmetic result. She also says for matching purposes, I may want a bmx because they don't make implants that small. :-) have to laugh every time I repeat that. My pet scan showed several lymph nodes involved, but didn't list how many. After surgery, I will have to do rads. I'm glad you are finally getting some relief from that infection. A lump of any kind appearing in the surgery area must have been terrifying! Have you done reconstruction or do you plan to?
If your surgeon was acting sad after your surgery, that is so unprofessional and wrong! They should always be positive. Anesthesia can really play tricks on us, though. Most likely it was the drugs playing tricks on your mind. The chemo should have taken care of anything that was left, so I try not to dwell on what was in the nodes before surgery. Keep your eye on the prize!
Dawn
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Dawn you are right about keeping my hope up. He could have had something else on his mind to. I didn't ask him when I went back for the drank removed and he was not sad then. who knows what had been on his mind or mine. I don't need any reconstrustion since the lumps were close to the top of the skin. He took out a small about but really the breast that had cancer is firmer and looks better than the other side. the only thing is the armpit is still numb and my onc said that will be like that always. I guess in order to get lymph nodes they had to do some damage to nerves. I can live with it though. What is weird is when it itches and I go to scratch I don't fell it so not need to try to scratch. It goes into a small part of my back. I am still the same size cup wise as I was before surgery. he told me when we were talking about it that it would not affect the size that much.
I hope all goes well with you too. I do hope there will be no cancer left after chemo for you or me.
Carolyn
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TCH did its thing for me.
Surgery was this past Monday 6/21. Heard from surgeon today with the path report, no signs of cancer in the left previously cancerous breast. Herceptin did its thing!
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STLCardsFan ~ congratulations on your 100% reponse to chemo! I had the same response.
TCH is a powerful combination!
Alaina
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STLCardsFan... Wonderful news! I had the same result. We are so lucky and so very blessed!
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I'm a little jealous of all you who had the neoadjuvant chemo--you KNOW the chemo worked!!!
LadyMadonna, I had a mx, but still had to have rads because of close margins. My entire 6 wks was treatment to the chest wall to prevent recurrence.
mtndawn, I am very small as well (barely an A cup) but removed just the one side. I've wondered about what they will do if and when I decide on any kind of reconstruction. . . I will prbably need to look into either removing the healthy breast or enhancing that one as well. I had heard the same thing about the implants, and I am too thin for the other options.
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Congrats to the ladies that TCH worked it's magic on! I have to second weety's opinion in that I'm a little jealous that you had neoadjuvant chemo because you know for sure it worked!! That is fantastic news ladies - I'm quite estatic for you and it gives myself and others hope!!
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What wonderful news, stlcardsfan!
Becky
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Wahoo, stlcardsfan! That's terrific news! btw I didn't realize you were so soon out of your bmx. How are you feeling?
weety - I guess I'm around a b cup these days, but, well somewhat saggy. To think, they were big D's in early breastfeeding days. I will have rads after surgery, so I still don't really know what I'm going to do, recon wise. I really need to meet with the ps. Oh, I am thin as well, hovering around 100 lbs on a good day lately, at 5' 5 1/2".
I am very grateful to be doing neoadjuvant chemo, but that was standard of care for my locally advanced cancer. They wanted to be sure and mount an attack on anything they couldn't see as soon as possible.
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