December 2009 Rads Group

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  • BonnieSF
    BonnieSF Member Posts: 101
    edited February 2010

    Hi there, ladies!

    I have been away on vacation for a week in Key West! Celebrated not only stopping treatment but also turned 50! Key West was not very hot, only in the low 50s. Oh well. After I got back, it seemed like the radiation and surgeries and everything was a long time ago.  Very nice!

    Been almost 5 weeks since radiation ended. Have healed up very well and feel so much better! Have put off starting Tamoxifen until today. Almost decided not to take it at all, but figured that would be kind of dumb.

    Renee: Pruney! Right! My radiated side is smaller but perkier than the other one. Yes, a little pruney! But the nipple points straight down now. I am considering getting that adjusted. One of these days.

    Pink Haters! Yes, I'm one also. Enough! 

    Jules:  I'm with you on not wanting to do cancer stuff. At the grocery store they were collecting donations for breast cancer. I felt like "I have given enough already!"

    Vegy: Sorry you're going through this. It does end! Whew!!

    Jewly: I have the book! Haven't done much with it yet, but I'm definitely eating better. Green tea!

    Adrienne: glad you're healing up and happy! No surprises!

    Ellen: Thanks for your post!  That's a bummer about your lung. Hope it improves fast. I was afraid of that happening to me, but so far so good. 

    It's so great to be done with radiation! 

    Bonnie

  • somanywomen
    somanywomen Member Posts: 872
    edited February 2010

    Wanted to share this info that was on Good Morning America yesterday about Vit D3.

    "JoEllen Welsh, a researcher with the State University of New York at Albany, has studied the effects of vitamin D for 25 years. 

    Part of her research involves taking human breast cancer cells and treating them with a potent form of vitamin D. 

    Within a few days, half the cancer cells shriveled up and died. Welsh said the vitamin has the same effect as a drug used for breast cancer treatment.

    "What happens is that vitamin D enters the cells and triggers the cell death process," she told "Good Morning America." "It's similar to what we see when we treat cells with Tamoxifen," a drug used to treat breast cancer."

  • somanywomen
    somanywomen Member Posts: 872
    edited February 2010

    Here is another possible addition that is proving to be beneficial for breast cancer!!!

    I just saw my Oncologist yesterday and he said that he just got back from a conference on breast cancer.. "Clodronate" that this oral pill bisphosphonate, was given a lot of positive attention in treating breast cancer metastatic to the bone and other benefits....I asked him for a prescription and he said I had to get it from my Primary doc...Well, I just looked info on web and found quite a few positive reviews such as below

    ...Here's the catch.....it is not available in the US, crazy, huh?..Have any of you heard of this drug or how to get it?

     Just a little info I found on Clodronate..below..

    Clodronate reduced the risk of developing bone metastasis:

    • At 5 years, the risk of developing bone metastasis was reduced by 31% in the group of patients treated with Clodronate compared to those who received placebo.
    • During the two years that patients were treated with either Clodronate or placebo, the risk of developing bone metastasis was reduced by 50% for patients with stages II or III breast cancer who were treated with Clodronate.
    • There were no significant differences in cancer spread to other internal organs between the two groups of patients.
    • Among the women who developed bone metastasis, skeletal events (bone fractures, debilitating pain, surgery, and hospitalization for bone-related issues) were more common among those who received placebo (73%) versus those treated with Clodronate (57%).
    • Survival rates were greater among women treated with Clodronate.
    • There were no severe side effects associated with Clodronate; diarrhea was the most common side effect associated with Clodronate.

    The researchers concluded that these results add to findings indicating that the use of a bisphosphonate such as Clodronate in the treatment of early breast cancer appears to reduce the risk of bone metastasis and may affect survival in some patients. Further study is necessary to determine how to incorporate bisphosphonates into the treatment of earlier stages of cancer.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2010

    I went to see a surgeon today. Looks like I'll need to get my thyroid out or at least part of it. Isn't it bad enough to have breast cancer, chemo and now radiation and now to deal with thyroid cancer. How much more can a person take? I'm still dealing with the anger of loosing the old me, angry at all the scars I have, angry that I had no choice, and now I have to deal with this on top of it. I'm tired of crying and screaming. I want the old me back.

    Just needed to vent.

  • adrienne2
    adrienne2 Member Posts: 183
    edited February 2010

    somanywomen, I'm so sorry that you didn't win your fortune: I was hoping that you'd invite us all to a party on your new yacht :) Sounds like you had a great time, anyway: good for you! 

    Thanks for mentioning the news about aspirin: I plan to discuss it with my medical oncologist at my appointment Friday. If I can remember, that is.

    Renee, the meeting with a plastic surgeon sounds like a good idea. You asked about the timing: I don't know much about it, but when I mentioned getting a small area of rough skin removed from my irradiated breast, my rad onc said not to do it for 6 months. Please let us know what you find out.

    Bonnie, welcome back from your relaxing and fun vacation. I'm glad that you're feeling so good, too.

    How long after ending rads did it take before you quit having new reactions to the rads? I'm asking because I'm almost 2 weeks out, and I had a sudden new episode of redness and burning yesterday. It took me totally by surprise. Luckily, it calmed down before bedtime, and today I feel great. Reactions to radiation are a mystery to me :)

    Gee, Veggy, I think you have a right to vent. Yikes! You've been through a lot recently, and you are due for some good news and better times, for sure. I'm giving you a big hug right now. 

    All: I hope you are healing up quickly and enjoying your freedom.

    adrienne 

  • mimi1964
    mimi1964 Member Posts: 2,163
    edited February 2010

    Veggy - I'm so sorry that you have thyroid cancer... that really sucks donkeys!!!  However, this is my second round with cancer.  I have had 1/2 my thyroid taken out back in 1989 because of a cold nodule they didn't know what it was.  They biopsy showed it was B9 but the oncologist I had then wanted it out and they told me it was the size of a pea.  When they got in there it was the size of  an egg.  So I was very glad they got it out.  I also was unable to get pregnant with my 2nd child till I had it out.  I have done very well.  I have just recently been put on thyroid medication.  It isn't so bad.  I do understand the fact of wanting to scream and feeling like you are out of control.  I to want my old self back but I am slowly coming to the realization that may not happen, perhaps I will be better than before.  LOL... I certainly can hope so.

    To everyone - I saw the breast surgeon today and my Medical Onc for follow up appts.  The breast surgeon clarified a lot of things for me.  My Rads onc apparently does not know how to read a path report.  I didn't have a multi focal tumor, nor did I have only a 1mm clear margin, it was much more and the Rads onc should have called for clarification before burning me beyond capacity.  He didn't though and we can't go back and undo the past, we can only go forward.  He did give me a referral to a plastic surgeon due to the definite difference in size of my breasts, but wouldn't you know that the doc her referred me to is not in my United Health Care Network, so, I've got to find someone else.  That stinks.  Anywany he didn't drain my seroma, he said it wasn't as bad as my Rad onc made it appear, but that if he drained it I would probably end up an A cup instead of the B cup I am now on that side.  LOL!  So he left it for now and will recheck it in 3 months.    

    The Med Onc started me on Tamoxifen.  He felt like with my age that it would be the best choice for me to protect my bones and that I may have less side effects with it than the Arimidex or Femara.  But he did say if I started having side effects and or they got to bad to let him know and he would change it or stop it.  His original plan is to keep me on it for 2 yrs and then change me to one of the others which is what he said, but I don't know, we will see, cause I did tell him alot of my concerns about the side effects though starting me on the Tamoxifen first was his idea.   Since I am so menopausal  (my FSH is over 60) I will only be taking Tamoxifen 10mg qd instead of the usual 20mg.  He said that's all I need.  

    Now what is everyone else going to be taking?

    somanywomen -  I got my cancer fighting foods book today.  And I also got the o.k from my docs to start going to the weight doctor.  Yeah~!!! Matter of fact he recommended it ... :=) said losing weight would help keep the BC beast at bay!!!

    Renee

  • somanywomen
    somanywomen Member Posts: 872
    edited February 2010

    Veggy, I am sooo feeling for you..but like Renee, I know people who have had thyroid cancer and take thier medicine and are fine....I hope you start getting good news and soon, you've been through a lot and good news is basically what gets us back to being our pre-bc selves...Are you on a good anti-cancer diet?...My rad doc was simply amazed at how I breezed through rads and was never tired, she even wrote down my basic diet and supplements to share with her other patients, so it might help you also..

    I saw my rad doc for last time yesterday, since my surgeon will take over my mammos, she had wanted to do a left breast mammo 6 months after rads, surgeon wanted to do it 6 months after surgery (so I am scheduled for this April) instead of July....When I saw my surgeon also yesterday, he said I will see him every 3 months for the next 3 years and have left b mammo every 6 months and both 1x a year...I like him much more than the rad doc and never saw her much anyway during those 30 visits which they are still trying to charge me $30. copay as an office visit for each one...30x30= $900....I am fighting charge with ins co...Did anyone else have to pay a visit charge each rad treatment???

    Adrienne, I am not giving up on finding my fortune, two of my friends and I are headed to the beach today for our walk and will be taking 2 metal detectors to do treasure hunting...So, I will let you know when yacht party will be...

  • candy14510
    candy14510 Member Posts: 165
    edited February 2010

    Ladies I know that you know Steeny107 or Michelle McAllister....She was on a thread..."Starting Chemo in June"....We were going thru this together as she was with your too.  She is such a strong woman....I noticed she also posted on this thread and wanted to share with you, her Facebook post as of today Feb 24th.....I know she is looking at her FB page everyday....I became friends thru facebook and you can look her up...I'm sure her  husband will "freind" you......Please keep her in your thoughts and prayers.  God Bless you Michelle!!!! - Polly

    Michelle McAllister Dear Everyone, Thank you for helping me to the end. I am doing Hospice and will hopeully be in the Keys at the weekend for the final parties days. Come visist face to face xo3

  • adrienne2
    adrienne2 Member Posts: 183
    edited February 2010

    Candy, thank you so much for posting Michelle's message here, and for telling us how to get messages to her.

    This just breaks my heart. I thought she was doing really well, and I expected to see her around for a long time. I know that she had a great time at her very successful sailfish tournament last month, and I loved visualizing her out on the water with the wind in her face. In fact, I think that's the way I'll always see her.

    She is a very sweet and beautiful woman, and she helped me a lot. I am so grateful to her.

    Thanks again, Candy.

    adrienne 

  • Jayne_in_UK
    Jayne_in_UK Member Posts: 517
    edited February 2010

    Polly thanks for posting on here about Michelle. I just found out from another Facebook friend and came to this thread to fnd out more. Like Adrienne I had thought she was doing well and this news has come as a shock.

    I hope the rest of you ladies are well. I'm not on the boards so much these days, just backing off a little and focusing on other things for a while, but I will come back and see how you are all doing.

    Hugs to all. 

  • somanywomen
    somanywomen Member Posts: 872
    edited February 2010

    Steeny107, Michelle, I was hoping you were doing good and enjoying margaritas on the dock watching those beautiful Key's sunsets.....I do not have facebook acct and hope you will check to see how much we are thinking of you and wishing you so many peaceful days....I hate hearing this and hate this horrible bc world....I truly wish a positive change for you and just wish you and your family the very best....Jewly

  • mimi1964
    mimi1964 Member Posts: 2,163
    edited February 2010

    I'm so sorry to hear about Steeny107.  I tried to find her on facebook.  I found Michelle McAllister, it is a picture of a woman and her son and her husband.  If anyone knows for certain that this is her please let me know.  I haven't been on facebook very long and I'm not an avid user.  I would like to add her and send her a message to let her know I'm thinking of her.

    Jewly... you are so right, breast cancer truly sucks!  I pray every day for a cure.  May God bless every woman, man and child out there that is or may become dx with this terrible disease.  May he fill someone's mind with knowledge to find that one missing thing to cure the up till now incurable disease.  I send all my love and hugs out to all my breast cancer sisters today.  

    Renee

  • adrienne2
    adrienne2 Member Posts: 183
    edited February 2010

    Renee, I have sent you a PM with a link to Michelle's FB page. I didn't want to post it here, but if any of you want it, I'll be happy to send it to you.

    adrienne 

  • BonnieSF
    BonnieSF Member Posts: 101
    edited February 2010

    Adrienne,

    Please send me the link to Michelle's FB page. So shocking. 

    Also, you  asked me about random se after rad ends. I have not really had anything. I've been done for five weekd. Some areas get darker or redder for a little while, but do not hurt and it goes away. Swelling went down fast but it has settled now in to a slightly puffed up size, which I hope is permanent because it makes it the same size as the other breast! I hope your side effects end soon!

    Today is my first followup with the surgeon. The med onc is ignoring me. Probably because I went against his advice, which was to have a mastectomy. Oh well.

    I started Tamoxifen this week. I feel some stuff, but it's not too bad: some joint pain, some water retention, but that's it. Interestingly no hot flashes. Yet!

    Bonnie

  • candy14510
    candy14510 Member Posts: 165
    edited February 2010

    http://www.facebook.com/profile.php?id=522842658&ref=ts

    Michelle's profile...she has an open acct...but if you freind her...she will accept!!! She can't really talk, but is reading her facebook and responding too!!! She would appreciate i know!!!

    Polly

  • adrienne2
    adrienne2 Member Posts: 183
    edited February 2010

    Bonnie, I see that Polly (candy14510) has posted the link to Michelle's FB page just below your post.

    I'm glad that you haven't had any random side effects post rads. Whahoo!

    I had surprise burning sensations two weekends in a row, but none during the week. I'm hoping that this weekend will be burn-free. My body's reaction to rads has been a bit odd. When my breast gets red, my face gets red, too, and because I have rosecea, this has resulted in some permanent tiny red veins on my face. I've had vaginal burning, too, but that seems to be abating at the same time the breast redness is abating. I never would have expected these reactions, but they are minor, in the big picture. I feel very lucky not to have experienced any fatigue or peeling, so I won't whine about what I've experienced. Each of us is different.

    I'm so glad to hear that Tamoxifen and you are getting along pretty well so far, and that you aren't having hot flashes. I hope the joint pain will go away.

    It was your Med Onc, rather than your surgeon, who wanted you to have a mastectomy? It was pretty much the opposite for me. I hope your Med Onc will meet with you, though, since he should be following your reactions to Tamoxifen. 

    I see my Med Onc today, and will probably start Tamoxifen, so we can compare notes. I'm post-menopausal, and already having hot flashes, so I won't be able to blame them on Tamoxifen. Unless they get a lot worse, that is :) 

    I've been enjoying some "firsts:" sleeping in bed (instead of the recliner) again, using deodorant, and even sleeping on my left side for the first time since rads. Soon I'll be treating my left breast the same as the right one: life is good.  

    I hope you are all healing up well and enjoying life. And I hope none of us sees the beast again.

    adrienne 

  • mimi1964
    mimi1964 Member Posts: 2,163
    edited February 2010

    Adrienne,

    How strange ("I've had vaginal burning, too" ) I've never heard of this before from anyone that has had rads.  Did you ask your rads onc about it?  I would be curious to find out what he had to say... hmmm?  I am 3 wks out now and my breast is all but healed no redness at all the nipple is still a little swollen and pink at times.  Still have some minor peeling going on, but that is about it.  The med on told me that my right breast which received rads was about 2 degrees hotter than my other breast so it is still "hot".  LOL!! and shrinking I guess.  Just hopefully not disappearing.  But I am back to wearing the good old underwire bras!!!  hahaha

    Oh yeah I went and joined Medical Weight loss Solutions yesterday so I am now on my way to being 50 lbs lighter.

    Renee

  • Jules824
    Jules824 Member Posts: 85
    edited February 2010

    Hi Ladies. 

    Polly thanks for updating us, I am so sorry to hear this news about Michelle. Please tell her she is in my prayers. Well this just breaks my heart to hear news like this.

    Veggy, you too are in my prayers. I feel so bad you now have thyroid cancer too. You have been thru so much. Please keep the faith, I know how hard this must be for you.

    Somanywomen thanks for all the info, I appreciate it and am glad you had a nice time in your ventures.

    Bonnie welcome back and happy belated birthday. Its good you got to celebrate.

    Mimi and everyone else, I hope all of the rest of you ladies are hanging in there and healing. I pray every single day for all of you, I truly do.

    I was going to wahh whine about our yet (again) snow stories and how my husband was stuck on a road for hours and about other things, and well hes ok, and it now seems like nothing compared to what other people on here are going thru.

    I have to go. I just dont know what else to say tonight other than Cancer SUCKS, I wish someone would find a cure NOW.

    Jules

  • mimi1964
    mimi1964 Member Posts: 2,163
    edited February 2010

    Jules I know exactly how you feel.  Cancer does SUCK!!!  The days you want to whine and complain about yuur problems or the bad day you're having and then you think about someone like Michelle and everything that she has been through and what she is going through and it makes you stop and think.... "hey, my problems aren't so big after all, no need to complain and whine today!"  It just makes one pray a little harder for a cure or look for a way to get involved to help out with finding a cure.  I wish they had a Cancer Walk her locally and I would try to get involved.  Atlanta is just to far away for me to go walk for the Susan G. Komen walk plus I have already missed so much time off work with my treatments and doctor appts.  If it was local it would be a weekend day and I could do it.  I will definitely keep my eyes and ears open and see what I can do to help.  My goal is for there to be a cure found for this dreaded disease.  To add to the Michelle issue my grandma was put on Hospice this week also.  She isn't doing well at all.  She has Congestive Heart Failure and she is in pretty bad health.  She isn't eating, drinking or taking her medications.  She is still alert but she is ready to go.  I'm not sad because she is a christian and I know she will be in a far better place, but my granddad is not dealing as well with it as we thought he would.  Which is strange since he is a retired minister.  Please keep them in your prayers as well.  May she go with grace and dignity and ease.

    Hugs Renee

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2010

    Thank you Jules. I am trying to take this one day at a time and trying not to let me get too down. Cancer does suck and so does getting old. I lost my grandma last May, right after being diagnosis. She was 93. I didn't have a chance to say I love you and thanks. Sorry Renee about yours.

    Yesterday we took turns shoveling about 2 feet of snow out of the driveway. Today I think I'll stay inside and bake a cake. I have some bananas turning brown. And maybe I'll do some housework. Got to keep myself busy.

    (((((hugs)))))

  • somanywomen
    somanywomen Member Posts: 872
    edited February 2010

    Jules, I hear ya on the "want to whine" but then reality of oh somanywomen going through so much that you realize that we are pretty fortunate and just need to put that energy into support for others...I know that I come here to complain and rant just to get it out and sometimes feel so selfish when I see what others are going through....I wish I could do more to help!

    TO ALL...I found this post by a fellow poster "cherneski" and thought since she (Michelle/Steeny107) is one of ours and all of us are so deeply concerned for her that just in case you missed this post you would be interested.......

    topic is called

    ROAD TRIP TO SEE STEENY/ MICHELLE!

    {OK, so Polly and I want to go see Michelle in FL.  For those of you who dont know Michelle, she started chemo with us in June 2009. She is this amazing beautiful woman and mother.  This dreadful disease took advantage of her body and invaded her brain.  She decided to do hospice and requested anyone to come meet her face to face in FL. 

    Michelle has this amazing spirit that you can not explain.  It will be an honor to meet her in person.  

    Polly and I are looking into going the week of March 7th.  If anyone else wants to join us please let us know. Flights are pretty darn cheap, and we can find some cheap hotels. I am up for driving from NJ if I can get at least 2 other people to share the drive time.  I can pick you up along the way on I-95. 

    Whether we drive or fly this will be a trip that none of us will ever forget of it.   }

    Wow, I would love to meet her, I am going to give this some thought, Jewly

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • mimi1964
    mimi1964 Member Posts: 2,163
    edited February 2010

    hhfheidi - I love your horse he is so beautiful, the sleigh is gorgeous also, you don't look to bad behind the reins either... lol!!!   What an awesome sight it is slightly reminiscent of "Dashing through the snow in a one horse open sleigh".... hahaha!!! gotta love Christmas!  and I truly do.  Thanks so much for the pictures I am a horse fanatic!!! We have them on our farm. 

    Jewly - I would love to go see Michelle, but unfortunately I have missed so much time from work with my surgery and my rads I can't take anymore time off.  I am pretty much on call 24hrs a day 7 days a week being the director of nursing.  Sometimes it stinks, but I do love my job and jobs are very scarce right now, if you have one hang onto it.  I have also already put in for a vacation in March before I knew about Michelle.  Those of you who decide to go... Please send her my love and prayers.  She is a very special lady.  

    Jules.. it is alright to complain we all need a place to do it sometimes, even you Jewly, go ahead an complain.  It's o.k.  We all have our bad days.  It's o.k. to shout, cry and even throw a tantrum.  Breast Cancer is NOT our friend.   

    Take Care Ladies!  Sending you all {{{{Hugs}}}}

    Renee

  • adrienne2
    adrienne2 Member Posts: 183
    edited March 2010

    Renee, I am sorry to hear that your Grandma is doing poorly. I will keep you both in my thoughts. 

    hhfheidi, I love seeing you out with your horse and sleigh -- wow! You go, girl! 

    How are you doing, Veggy? You must be getting pretty close to half done with rads by now, right? Soon you will be done, and we'll all celebrate with you.

    Jules, I hope you are feeling better today. 

    adrienne 

  • mimi1964
    mimi1964 Member Posts: 2,163
    edited March 2010

    Thanks Adrienne,  my grandma actually was a little better yesterday, but today she had a bad morning then a better afternoon.  It looks like she is going to have up and down days.  It's just going to be one of those things that will be hard to tell.  She could be on Hospice and go tomorrow or it could be a year. 

    Veggy - Definitely, how are you coming along?  I agree with Adrienne aren't you about 1/2 way now or at least getting close?

    Jewly - hope you are nice and toasty down your way.  

    How's everyone doing that has already started on the oral meds?  I've been on the Tamox for a few days now but not long enough to tell anything I guess.  But then again I'm taking 1/2 the dose of most of my counter parts.  The joys of being very menopausal! lol!!!

    Renee

  • adrienne2
    adrienne2 Member Posts: 183
    edited March 2010

    Renee, I've been on Tamox for just a few days, too, starting last Friday. I haven't noticed anything yet, but I've only taken 4 pills, so I'm not surprised. What dosage are you on? Mine is 20 mg.

    adrienne 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

    I think Friday I'll be at my half way point. I'll be doing a small dance. I haven't thought about it until now, but I want a party to celebrate when I finish rads.

    hhfheidi - I love the picture with the horses. You look great!!

     Renee- Give yor gramma a big hug and tell her its from me. I wasn't able to hug my gramma before she died. I was dealing with my cancer. Cancer sucks!

    Today I am going to rads alone. It will give me some time to think and reflect. There are times I like to go alone. 

    Hope everyone has a great day.

  • bichonlvr03
    bichonlvr03 Member Posts: 84
    edited March 2010

    somanywomen - Can you tell me what anti-cancer diet book you are referring to?  I'm new to this forum and started to go backwards to find the name of book, but came to the conclusion it would take awhile to find.  Thanks 

  • somanywomen
    somanywomen Member Posts: 872
    edited March 2010
    bichonlvr03....Welcome.....I just did some copy/paste to catch you up..here are names of two good books.....David Servin-Schreiber's book "Anti-Cancer" A New Way of Life, was one of the first books that I bought when I first was diagnosed, and "Foods to Fight Cancer" by Beliveau and Gingras.....explains the anti-cancer foods (mostly veges and some fruits) work against cancer...like there is a chapter on green tea and another chapter on tumeric shows that curcumin/tumeric alone is absorbed by the body 1000 times more when you add piperine/pepper to it!!!..and to get even a more profound effect against cancer to add green tea (EGCG) to this combination, therefore now when I add tumeric with pepper to anything, I take a green tea supplement....Don't just skip to these chapters, please read all the short very imformative chapters leading up why it will all make sense to change our bad American eating habits...There are no recipes in this book so we will have to share the combinations that work....

    The anti-cancer diet change has been great!!...My cholesterol dropped from "232" total for Aug 2009 to "200" total Feb 2010.....My vit d levels went from "28" In Aug 2009 to... Feb 2010 level is Yippee "45"......Have lost 10lbs..

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

    Today I had my radiation treatment and afterwards they took me and placed metal bb's on me. They placed some on my chest and some in my scar and ran me through the Cat scan. Since the PET scan experience I've noticed that I'm uncomfortable in confined spaces.I just closed my eyes and breathe.

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