Stage IV NED crew : lets support each other
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Question hoping someone can help me with....my mother just completed her treatment for mets throughout her body and after a follow-up PET scan the doctor told us that everything was clear. After reading the actual scan report it keeps using this term "interval resolution" Does anyone know what this means? Does that mean that all the mets are gone or just shrunk? I would have thought the doctor would tell us if they were still there but the doctros come and go so quickly I am paranoid we didn't really get specific information. I'm hoping this puts her in the NED club. Thanks!
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Laurie! Fingers crossed for you to receive good results!
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Whew! Still Ned. 4 years and 9 months. This was my first scan since stopping treatment in Jan, so extra nervous.
Laurie0 -
Way to go Lauriesh!! Happy Dance!!!
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Ashleyp, I don't know exactly what "interval resolution" means, but combined with "everything was clear" that sounds like very good news. I wish I knew what "interval" means in this context. Could it mean the time between the first scan and this one? I hope you can get the doctor or nurse to call you and explain more. My first PET-CT report during taxol used the words "resolution of FDG avid right breast lesion" and "resolution of FDG avid adenopathy" and I understood that to mean no evidence of cancer was showing up in those areas any more. On later scans the words used were "essentially resolved". It described the liver lesions as "decreased in size and are no longer FDG avid" and the doctor told me that meant the shapes still showed but the mets were dead or dying. The report said "complete metabolic response". At another appointment I glimpsed a report on the desk that called me NED. I sure hope your mom is in the NED club now.
Laurie, Hooray! Seriously hooray.
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thank you Boo! I'm so hard on myself I know. When I think about it I'm way more active even if that means being out of bed all day which I wasn't able to be three months ago.
Oh gosh good luck !!
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Congrats Laurie! You are such an inspiration. I get my first scan since chemo ended in June next week. Hearing stories like yours helps ease the anxiety.
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Yay Laurie !!! How long ago did you stop treatment?
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So...they reviewed my CT for a second time...and I have two tumors that are active again...so I don't get to dance with NED ant longer. My lung nodule that was inactive is active again. Grew from 1.2 cm to 1.6 cm. and a lymph node that had been inactive has also grown from .7mm to 1.0. The good news to me anyway, is there are no new mets. I will change from weekly Taxol to CMF, which stands for cyclophamine, methotrexate, and 5-fluorouracil. Evidently it was a chemo used back in 70's and 80's they are using again for triple negative BC. It is only given once every 4 weeks by IV. I feel I will be dancing with NED again...so I think I will keep this page as one of my favorites for that reason and to keep up with you lovely ladies. The main SE is your hair falls out! Well I don't have any to have fall out so I guess all good in that department. 👍
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Yes, it's good there are no new mets. You sound ready to do what needs to be done. Go, Texasrose! We want you to get back in the dance soon!
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I've been here before...but maybe just a twinge of not wanting to get too comfy in the bed w/Ned. My scan 8/15, 9 mos after stopping 22 mos of chemo & 30 mos of perjeta, now getting only Herceptin & taking letrozole, stated: "Grossly stable treated metastases w/associated capsular retraction. No evidence for local recurrence, no evidence for new metastatic disease, stable treated liver metastasis & no evidence of new liver lesion." Tge capsular retraction is probably the same thing your onc was referring to Shetland. They said the shrinking from such large lesions causes tge liver to look "odd" so they'd never say "Ned"...but sounds like they come very close & my onc has said remission for a long time. He said I am 1 of 2 of his most healthy mbc patients (he's bc onc only) and said he thinks herceptin can be the ticket forever! Oh, how I pray that's so!!!
Texasrose...back to blasting those buggers...it worked in that no new mets...now to finish off the job!
Hoping for best results in scans for all!! This is a blessed place to be posting...but I still kinda tip toe around :-)
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Hey Taxasrose, so sorry to hear you are having issues, and I am hoping hoping hoping the treatment works and that you are NED again soon. You're part of the lovely community that reads this thread now, and I am asking you to stay and keep us company. If you would like to stick around we'd love you to stay. Love Boo xx
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Ronnie, I read your results with awe, thats a massive achievement and I hope this is your new normal. FOR EVER. Love Boo xx
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how do you ask questions
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I need to get a biospy in my back and I am scared to do it has anyone done this recentl
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tychad,
Welcome to bco. Could you clarify your posts? Do you want to ask questions here or from your doctors? It's also helpful to make your diagnosis line visible, as the particulars of your breast cancer can assist members in giving you better answers. This is a thread for stage IV members who currently show no evidence of disease. Hope we can help you find some answers, but more details would help
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Here I am in Boo-land, feeling much happier after a call today from my onc - following CT, then PET/CT, then MRI, the experts have concluded that they really cant find anything brewing anywhere, despite my rising tumour markers. So I continue NED. Happy dancing! TM's will be kept an eye on. I can take that.
Boo
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Excellent, Boo123!
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Yeah Boo!!!
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Woohoo, Boo!
Lynne
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Boo, that's awesome news!
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Excellent, boo
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Thank you everyone! The support from this lovely group of people is fantastic and means a lot! Love Boo xx
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That is awesome news Boo! You go girl!! Do the dance
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Just taking a quick look round...y'all have been a bit quiet of late , I wanted to say hi to all who read this thread, whether they contribute or not, if you are reading this then I'm sending you warm wishes for a happy festive and holiday season and good health for you all for the new year...thank you for connecting everyone, it means a lot...that's my message...I'll just leave it here...
Boo :-)
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I just read this whole thread from the very beginning, and I now have a big crush on all of you.
A few of you might remember me-- I've been on and off the boards since 2007. I've been Stage IV since 2010. Got to NED about two years ago and am classified at present as an "extreme responder to therapy" (Xeloda, which I take on a 7-on/7-off schedule). But golly, I truly do not take anything for granted anymore. Just had my final labs for the year this week, and thankfully all mets are still quiet. CA 27-29 has always been a reliable indicator for me, and mine are in the teens these days. WHEW. Merry Christmas to me!
I want to get in better shape in 2016. I'm glad to see that you all talk about that in this thread sometimes. I eat a healthy diet but I need to get moving. I had acute pancreatitis and four consecutive liver failures in the last three months of 2013 which totally crashed my metabolism, and it has never recovered. It took over a year to get back any energy whatsoever after all of that, plus Xeloda wipes me out, SO I've really been living in low gear-- annnnnnd hello, I've gained 40 pounds! Despite eating sensibly! ARGH. My exercise options are extremely limited what with the HFS risk on Xeloda, which really limits my walking (which I love, dangit!) and anything that puts pressure on feet or palms, plus the limitations of bone damage from widespread bone mets (every vertebrae, all hip bones, femurs, femoral necks, you name it), not to mention the daily episodes of... what was it you all called it?... pumpkinization? (So I guess we are all punkinheads now? LOL) But I really have to get moving somehow, so I'm going to be experimenting with exercise options in 2016.
Anyway... didn't mean to yammer on so much. But I'm so glad to find this thread and have tagged it as a Favorite. Peace, comfort, and joy to each one of you!
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Hi Lulubee, and welcome to this thread, it sounds as if you have been on a very tough journey to get here. Well done for tolerating Xeloda - I wish I could, but by cycle three it had put me in hospital for two weeks with a massive reaction, my onc said it nearly killed me. So regretfully, no more Xeloda for me, which makes me sad as it seems to be such a good drug. I've just been moved to Tamoxifen and am enjoying (ha!) discovering how much it is making my joints ache. I am hoping it will settle down over time.
Good luck with your personal fitness plan for next year - think I'll join you. I need to shift at least 16 pounds. I find swimming is great - not load bearing and a good all round exercise. Will the hand and foot issues from Xeloda allow you to swim? I do remember my skin being fragile and flaking off so water exercise may not be an option for you. `if I don't keep moving nowadays I feel like my limbs seize up. I am addicted to yoga, how about that as a way to gently start moving without being too exhausting?
Well, keep us posted on your plans and how you get along. Two years NED is awesome, `i wish you many, many more. Like, FOR EVER!
Boo ;-)
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Good Morning all
I read often but don't post often. Lulubee check your local y for the Livestrong Program. A free program for those with cancer. I have done it twice at my local y. The trainers are great, know what I should be doing and perhaps not trying related to surgery etc. And most importantly it got me moving again!!
Happy holidays to all
Nel
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As I tidy up from Christmas, I am thinking about the fresh year ahead. I love the turning of the year. It's like I get a fresh outlook and a clearer brain for a few weeks, and big things seem possible for a change. I like to ride the wave as long as I can! I want to stir up the coals under my fire to help me burn brighter and longer.
I think it's so important for us to get still now and then and ask, "What do I really want in my life right now? What is still possible? What is the next smallest step I can take toward what I desire?" We're still alive so we ought to LIVE, right?
The first thing that comes to mind for me? I just wrote down, "I want to be passionate about supporting my body to live well, as it continues to work so hard for me." I am feeling that so strongly as I step into my third year of being NED. I already know the kinds of things I need to do-- I just need to really feel the desire, and to mentally clear the path toward the doing. I have grown complacent lately about stretching, moving, hydrating, taking my supplements, and eating enough plant foods. I still do those things, but not as habitually as I should like. You know? So there's that.
Also? I want to pray more. Mail more little cards. Be more willing to pay for a little housekeeping help. Get my bedroom repainted. And of course, kiss my husband and laugh with my children and dance with my baby granddaughter more. Always that.
I am also feeling a real desire to give a lot of my stuff away and have a blast doing it. I just want to bless people with things I know they will value and enjoy more than I do at present. I gave a nice piece of my jewelry to my mother for Christmas, and I got such a kick out of seeing her so over-the-moon excited about it. My work table is stacked with books I won't read again, to package up and mail to special friends who will love them. It just makes my heart happy. And I want to do it while I am reasonably well so my friends won't think it's morbid.
What about you? Do you have clear desires for the new year?
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Luke, you are so right. Time to take stock and review all that we can do to stay healthy, and to enjoy the time that we have as NED, because none of us know when this time will be gone. I too am reflecting mon how to make y life happier, and have today been happily sorting some cupboards and dividing up stuff to be thrown away, recycled or taken to a charity shop. it was very satisfying and I am going to do more - takes the clutter out of my head at the same time. I am also going to buy a nutribullet, get going with some raw veg smoothies to up my vitamin intake. I am determine to keep my body in optimum condition though the coming year ...which will mean getting out of the door and walking more, swimming, all things I am glad to have done but really have to make myself go and do...so willpower is my new mantra.
And yes - I am determined to live! I have just signed up tp join a performance choir, and am also going to try and get involved with more activities in my town. Now that my hair has grown back to a sort of normal short length, folks forget I have been ill, and not many know or understand what stage 4 is and means...and I don't tell them. I prefer not to be seen as the woman with the illness identity if I can help it. Fingers crossed for remission for a long time, preferably for ever.
Hope all who read this thread have had a great time this holiday season.
Boo
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