Stage IV NED crew : lets support each other
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Hi ladies. My latest scan shows no evidence of metastatic disease. I still have a small primary tumor in my breast and some very small nasties in the lymph node of my armpit, so not quite NED yet. Just a heads up that I may be joining you!
>Z<
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yes!!! Stage 4 NED!! Such a blessing
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Hi all, well I have had three shots of Faslodex over the past six weeks, and the next set of shots will now be in four weeks time...onc is going to leave it a month or so before checking the ca15-3 levels and scanning me...so I am keeping my fingers crossed that the levels start to go down...scan still showing NED to goodness only knows what is going on...but I wish it would go away...or we could find something else that is causing the level to rise. Sigh. Anyway, I am trying to ignore it as much as possible and enjoy a lovely summer. I've been to the Welsh and the Suffolk coasts, done lots of sea swimming, and hopped over to Spain for a week where the sea swimming was glorious. Eaten a bit too much cake!
Well done I will win this battle, welcome to this very supportive thread. I hope that you hang out here for years and years and years and then even more!
Boo
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Friends,
Sunday morning thoughts: Like most of you. I'm trying to live my life without feeling that the proverbial other shoe may drop at any time. It's hard! As a wise person once advised me, "We can't negotiate our feelings." Consciousness of my Stage IV status is now part of who I am. Sometimes it comes to the fore, other times it recedes into the background. But it's always present.
That said, I live an active life in retirement. I'm out and about, going to the theater and dinner with friends several times a week. I do pro-bono communications and promotion work for education and arts organizations. I try to keep the garden under control. I read, but not as much as I'd like.We take "big" vacations (France, Spain, England) every couple of years, and small sojourns to American cities and sites in between.
We saved money when we were working, but worry about our investments and if our savings will last as we grow older, particularly if medical expenses increase. We talk about moving from our suburban house to a condo in DC, but the prospect of selling and buying and downsizing is so intimidating that we give up discussing it seriously, and move on to doing other things that we can address more easily. But we keep circling back to it.
My oncologist seems to believe I'm going to live a long while. Now, at the five-year mark since discovering mets which could have been in my lungs for years previous, I am beginning to believe it.
Almost.
Thank you for being out there.
Tina
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Congratulations on five years, Tina! Faslodex. Yes, I suppose stage iv consciousness does get integrated into our thinking and our lives. I tried to keep cancer out of parts of my life by not telling certain groups of people, but recently I have "come out" more as that seems preferable to having them wonder why I don't always participate fully. The answer is that cancer drugs take away 50% of the energy I ought to have. I still can't manage to "admit" the stage iv part, though I don't think most people would understand what that means anyway, especially for someone who is NED. Also, while I am well, I will not burden my kid with the worry, so I can't speak freely. This inauthenticity or holding back does feel like a barrier between me and other people sometimes. Another aspect of stage iv awareness is that every decision I make seems so important and heavy. And I get more down when things don't go well -- like missing out on something or having no garden -- because something that would be considered temporary in a normal life might be for the rest of my life. How do other NEDs on this thread experience stage iv consciousness?
Boo, I'm waiting to hear that your TMs have dropped. It would be so nice to not be wondering and worrying about what is going on.
Zarovka, I hope your next scan is all clear and you can add those three awesome letters to your credentials.
Iwillwin, have you been NED for four years?
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Hi ladies! Thought I might join this thread if I may........
I have been living with this disease for almost thirteen years, seven with mets and five and a half NED........I guess I qualify. ...lol.
After mets dx I was put on Arimadex and I was on that until a progression was picked up on scan fifteen months later. I was then changed to Femara and that's what I still take. I have biannual bone scans as well as biannual DEXA scans. Should something point to further progression then I have a CT at that time. Markers for me are totally unreliable so we don't bother doing them any more.
I am busy with life and opened an Antique and Craft store a couple of weeks ago. I open just Friday through Monday which gives me three days for appointments, shopping, house work and catching up with family and friends........I think it will work.
Because I have been on an AI for so long, I had a complete hysterectomy two weeks before I opened the shop. This has now removed the high risk of cancers in that area.
It's time for me to get my camera out and take some time to take a few pics of the area in which I live........these I print onto card stock and sell in my shop......they are doing very well so I'm pleased.
I have seen some familiar faces and names here and some new ones as well.......it's lovely to meet up with you all.
Love n hugs. Chrissy
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Great pictures, Andi and ShazzaKelly!
Boo, I am missing the sea after reading your post. Sea swimming is so restorative. Maybe I can get to it in the fall. Hope those markers start sinking...
Tina, I still remember one of your "big" trips -- to Rome. Congrats on 5 years!
ShetlandPony, the meds do take a lot from us. Femara was hard for me in terms of pain and fatigue, I can imagine it must be worse combined with Ibrance. I switched to Tamoxifen after 5 years (interspersed with Arimidex) and it's been mostly a piece of cake in comparison. Partly because I am getting just half a dose.
Chrissyb, love to see you here. Congrats on the new store and 7 years! Great idea to sell your photos in the store.
It's now been 9 years since my dx of mets at the get-go, with 8 and a half years NED. Yes, I've been really lucky. I remember being so weak after triple whammy chemo (TAC) and 28 zaps of radiation in multiple areas, my only thought was to get stronger for the next round. Well, I did get stronger, physically and mentally, and stronger than I had ever been in my life at that! I can hardly believe it myself. I want to have my telomeres checked to see if they are longer. But I already know I can lift more, dance longer, climb higher. And the next round has been postponed indefinitely. I'm hoping this state of affairs can go on for a while longer, maybe even until grandchildren come? While it's sad that not everyone has been as fortunate as I've been, I'm very happy to see that there are more people getting to NED and staying there for years. I have no statistics but my impression was that there was no one really ahead of me on the Stage IV NED longevity curve posting here on BCO. Now we have a whole thread!
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HI all,
I have been living with stage 4 for the past 8 years. 13 years total on this journey. Shetland Pony ....you mentioned that you are somewhat private about your diagnosis. I have been as well. Mainly to protect my child because I don't want to cause worry and stress right now. Also I have been private because I found people don't really know how to respond or what to do and when they are clearly uncomfortable then I get uncomfortable so that made me keep it to myself except for a few close friends. But sometimes it feels like a really big heavy burden carrying around this "secret". I go in spurts with being active on these boards but I find whenever I jump on I always find great information and it is nice to see fellow warriors living life!
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Exactly, Smiley. My priority is to give my kid the longest time possible to just have the normal kid worries without this heavy burden, and for us to have a good time together. As long as I am doing well, there is nothing to tell. Nobody has a crystal ball. And yes, it is a heavy secret.
Nice to see you here chrissyb. I have seen you helping people on the worried-about-recurrence thread you started.
Heidi, wouldn't knowing our grandchildren be totally amazing? I want that so much it hurts. It could happen.
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I went for 2 + years before I told my kids Same thing , didn't want it on their plate. Eventually became concerned that they were going to hear something from someone and I wanted it to be from me. And they are young adults! This was about a year and a half ago, they are now 22 and18. I want them to know - time to launch! I won't be here forever to hold them up, but I am right now, so work on that foundation that will provide them a healthy and successful life. Some days (ok most days) I think they will do me in long before cancer does
Be well
Nel
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http://www.independent.co.uk/news/business/the-big...
Hi all NED crew writers and lurkers, take a look at the enclosed short piece of thinking. For me, how true. I'm backing up and trying to avoid that bus...
Cheerio, Boo
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Boo, that link took me to an article about metabolism. Is that the right one?
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Whoops, no. how odd.
Will go look for the link to the right article, and report back. Sorry guys.
Edited: Well dang. can't find that article anywhere. So sorry. Blame my frazzled brain....
Boo
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Phew! I made it another six months! Two full years of clean PETs. I am so incredibly blessed and lucky. Hopefully I'm following in Caryn and Heidi's shoes.....
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Congrats Screech!! Everyday is a bonus and I'm so glad for us all that they just keep on adding up.
Love n hugs . Chrissy
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awsome screech! I will find out my PET results in 4 hours so nervous.....I want to stay NED like you!
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I'm sorry to say I have lost my NED status after 3 1/2 years. I am changing medication and they are going to radiate the new bone lesion. I am trying to stay positive and hope to be back to my NED status sooner than later. Love the positive energy on this thread
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Congrats to you screech. I wish I could say that I am doing something to or had come up with a way to stay NED (just passed the 5 year mark), but it seems like plain dumb luck.
Teacher911, may your next tx bring you back to NED for a long time
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I'm out too...broken
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teacher and nrsteph-I hope the next treatment puts you both back at NED. Caryn-I rely on dumb luck for a lot of things in life.....and a lot of times it seems to work pretty well-btw-beautiful grandchild!
And Chrissy!!!!!! Yay, nice to hear from "down under"!!!!
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screech- I see that taxol only worked for you for a short while too...how did you get over progression and are you still on chemo? Did the next line work better...any experience would be greatly appreciated...
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nrsteph-They orignally thought I had stage 3. They did a PET before starting treatment and one tiny spot lit up. The spot was in the sacral region in an area that would have been major surgery to biopsy so it was never confirmed. They decided to go ahead with the aggressive stage 3 treatment starting with taxol and A/C chemos. They did another PET after I completed chemo and the spot that lit up was gone. Because it didn't light anymore they say it was most likely a met. We decided to continue with the double mx and radiation with the thought that gaining control of the local cancer would be the way to go. Plus in my mind-it MIGHT not be a met (hope hope hope!!!!!). I had just three days before the PET done a two mile running race where I had not done ANY running since the previous fall so I just keep hoping I had an injury from that. I know that most likely not the case but you can't blame a girl for hoping. I currently take aromasin daily and get a zometa infusion quarterly. I also get a shot of trelstar quarterly for ovarian suppression. They are recommending that I get my ovaries out at this point because things are going well and then I would be on one less medication.
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thank you screech!
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I hesitate to put this out there because I know how tenuous it is, but my scans from February and October continue to show NEAD (still widespread bone scarring.) I was diagnosed de novo in August 2015 with rampant mets in nearly every bone.
Sending nothing but love to all of you.
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Rachel, WOOHOO! I am very happy to hear your news. I am not NED or NEAD, but I am always happy to read from those who have achieved and/or maintained that status. It gives me hope that one day I can join this elite group. Here is anotherWOOHOO and a happy dance for you.
Lynne
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Yay, bluefrog!! That is amazing from having extensive mets.
teacher, hope the rads can bring you back to NED. nrsteph, all the best on the next step.
screech, I posted on your other thread but wanted to add that I can imagine it was not a met, too, under the circumstances. But the important thing is that the treatment worked.
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hi all and congrats on Ned. Those of you who lost it will get it back 😃 I just came from Dr, 5 markers tests below 40 so normal and had my 2nd clean scan earlier this month. Stlill doing havelan twice a month next scan December then see what to do next. Dr sees no evidence of disease in liver lung or rib. Above average results and response. I really hope it lasts.
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LvInAZ, Congratulations for those great results. They are fantastic, wonderful, stupendous!WOOHOO! I hope you stay that way for years and years.
Lynne
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thank you. I really hope I do too. I find myself saying I have stage 4 and I'm going to die. It's like a punch in the stomach. I just can't believe it, why????!! I feel like why bother paying bills or being responsible like filing taxes what's the point. Ugh. I'm feeling down today. I should be happy it rained in AZ.
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Awesome news on the recent good scan results BlueFrog and LvinAZ! I almost hate to report because I feel like I might jinx it, but in the last couple weeks I've had bone and CT scans and both came back stable. Still dancing with NED and feeling blessed. Wishing good fortune and hugs to all.
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