Stage IV NED crew : lets support each other
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Thanks, Xavo. Hoping and praying that you're a member of the NED tribe soon!
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Hi. Can I hang out here for a while ? My scans showed NED Thursday after a brain Mets and a lymph node mets. Whew! But. I'm staying on chemo. I was hoping for a chemo holiday but alas not right now. Mixed bag of emotions for sure.
I feel guilty regarding those who haven't reached the coveted ring of NED. I'm very grateful for however long I have it but to stay on treatment makes me feel like a cancer patient. Does that make sense ? My partner, bless his heart, doesn't understand why I'm not ecstatic. I sound so negative when I try to explain it.
Hope everyone has a peaceful evening !
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Welcome Lauralind! That's awesome that your brain and lymph node mets are NED. What you say totally makes sense to me. And I'm sorry you're not getting a chemo holiday. Being on chemo definitely sounds like being a cancer patient. But it sounds like your oncologist is being conservative and wants to zap all the nasty little cancer cells into oblivion. But it would be a mixed message and I can see why you're not ecstatic. My friends get more excited about me being stable than I do, so I can see your partner not understanding.
Glad you're joined the group!
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Hello, Lauralind. Hang out here for a looong time. I understand what you are saying. I'm adjusting to the idea that as great as it is to be NED, we still deal with treatment side effects and dark clouds (grief, worry), and sometimes survivor guilt. Working on adapting, rising above, accepting, whatever you want to call it.
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Lauralind - Hopefully you hang here for a very looooong time. For family and friends to here NED or stable ,and for us, it is wonderful news. For those of us who carry cancer every day, while happy and grateful, the reality of a return is very real. We carry cancer as a weighty companion. You are not alone in how you are feeling
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Lauralind, I could not be happier to hear your news - it is wonderful that your treatment has been so successful. As the wise Nel says, we carry cancer as a weighty companion. Being NED is a wonderful, rare thing that we all cherish, but it brings with it a set of issues that are hard to pin down - guilt at having successful treatment when others are still being treated, worry about the reality of return. it's complicated. On the up side, the new normal of living your life in the moment, taking things one day at a time and cherishing the opportunity afforded us to once more be part of the real world while keeping one foot in cancer land, is huge.
For me, being NED is the time to make huge life decisions. I have made change to my diet, eat very healthily and have upped the exercise from none at all to a reasonable amount of walking every week, and Tai Chi. I am facing a return to work soon, and I really don't want to go back to my thankless corporate job that involved long hours commuting, working and huge levels of stress. I'm circling the wagons, looking at my finances and lifestyle to see what changes I can make. Time to can the big career and go for quality of life? I have always wanted to live near the sea - now is the time to work out how I can do it. Or at least, spend more time on the coast if a move option does not work out.
I think I am trying to do what shetland pony very wisely suggests: working on adapting, rising above, accepting.
Boo
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Just found this thread, it's a good one. Found myself at NED status after 6 rounds of T/H/P in April. Was doing the H & P infusions every 3 weeks until my masectomy on July 7. Have not had any infusions since June 3. Just got cleared from my Onc to start back up with them on August 25. My Onc said I will get a loading dose since I haven't had H & P in awhile so I am scheduled for a 3.5 hr infusion, normally it is only 1.5 hr. I have worried since I haven't had an infusion since June 3, that some cancer cells could start growing. My Onc said that H & P stays in your system a long time, longer than chemo does so not to worry. Have accepted that this is my life going forward, with infusions every 3 weeks. Not so bad as SE's are minimal, only runny eyes and nose off and on with fatigue. Have adapted to my new normal and feel grateful for my QOL and am doing all I can by changing to a more healthy diet, daily exercise, more rest and reducing stress as much as possible. Glad to have a place to come to where others are going through long term treatment at this stage IV, reading of their experiences and learning along the way from them.
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Thank you for the warm welcome ! Im happy to be here for sure.
Did any of you stay on chemo after reaching NED ? My onc didn't even stop to discuss it, it wasn't an option.
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Lauralind
After getting to NED after my fourth round of TC and before the fifth my onc said, "an argument could be made for no more chemo" I chose to have the fifth treatment but forgo the sixth.
Amy
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Lauralind, most of us continue withsome sort of treatment, and for triple negative that means chemo.
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Lauralind,
I was given three rounds of Xeloda after being declared NED, just to try and mop up any other lurkers, as I came to NED through surgery post six cycles of taxotere - and the pathology on the liver tumour showed a few hard core little cells that had not died with the taxotere - so not a complete pathological response :-( . The further chemo was at my request, but my onc was happy to proscribe it for me - he could see it was important for my own sense of having done as much as I could to kick any other taxane-resistant lingering little bad cells anywhere else to the curb. As there was nothing to measure, we do not know if the xeloda had any impact on the lingerers. I should have had six rounds of xeloda, but I had a bad allergic reaction which landed me in hospital, so my onc called a halt on it. Since then I have been on letrozole and crossed fingers. However my onc did say that the first round of chemo does the most damage, and the first three rounds do more damage to cancer cells than the following three in a course of six cycles. So I feel I got the best out of the xeloda.
If I were you, I'd be pleased that your onc is being so aggressive and pro-active in your treatment plan.
Hope this helps. Boo.
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Hey everyone, I've been away enjoying a walking break - longest hike I did was five miles, along Cornwall's glorious south west coast path , it made me feel good to be alive, happy, I loved every moment. Now I'm back home I am missing the sea like crazy. Being by the sea, whether walking the cliffs or sitting on the beach really does touch something deep within me.
I am quietly rejoicing one year of being NED, a status first reached in August 2014, with a liver resection exactly this time this week last year, following on lots of chemo since liver mets were found march 2014. It was a tough time, making me all the more thankful for being well enough to have enjoyed my recent holiday.
So. How is everyone else doing? Hope that all who read and share on this thread are having a great summer doing lovely things and cherishing every day.
Boo :-)
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Welcome back Boo. I'm with you, the sea is peaceful and invigorating all at the same time and gives me a sense of calm whether I'm in it, on it, or near it. I am so happy you enjoyed yourself. Five miles is quite an accomplishment...congratulations!
Hope you continue to enjoy your NED status. You deserve it.
Amy
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Congrats boo! I too find the sea soothing. Our Northern CA coastline is quite amazing and I loves cruises because staring out at the vast ocean soothes my soul. May you enjoy many more years of NED.
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Big congrats! Hiking in Cornwall sounds wonderful. Love the sea, too, but don't get to see it enough from 500 kilometers away with mountains in between. I may have to take a break to get my ocean fix even though school has just started.
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Hello to all! I hope everyone is doing well and that more people are able to claim NED status. I have had the best summer ever this year and hate to see it go. I notice is sounds like we all love the ocean. I spent a week at the beach and felt like a million coming back. Congratulations Boo and everyone that got good news over the summer.
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I, for one, am so sorry to see the end of summer. Love that you were able to spend a week at the beach, screech. I gain so much peace and comfort from water, so spending a week sounds like heaven. I hope all our American sisters are spending time at their favorite locations this Labor Day weekend celebrating the dog days of summer.
Amy
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Hello everyone, I'm just home from m final trip away this summer - the North East coast of England, coastal walking yet again. I wish I could explain what draws me to the ocean - it is a huge therapy for me, and it sounds like `i am not the only one. I was based near Whitby, Yorkshire, and the coast is just fantastic - a rough and rugged coastline, I am sure I walked a lot further than the map says because of all the ups and downs! My longest hike was about 8 miles - which may not sound a long way for some, but it was exhilarating yet exhausting for me. Quite far enough. However, if I think back to the sorry state i was in this time last year, I am both amazed and very humble to be able to walk so far and love being outside so much, and to have a whole years growth of hair to blow in the wind. I am thankful for every day.
Boo
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Welcome home Boo!
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Three cheers for my fantastic mo, barely 24 hours after my PET scan, her note and the report were on my patient portal. NED!!!!!! I'm good to go for another 6 months and can breathe a sigh of relief.
Caryn
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Whooo hooooo! Congrats Caryn!
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Hey Ladies,
Found out this last Friday that I am NED!!! My CT scan came back with an all clear! Hoping I can hang out with ya'll for a long time!!! Have been on Taxol since May 22nd (3 weeks on 1 week off). ONC said will keep me on that for maintenance but might reduce dose. Just not sure when she will do that.
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Hi All, and thanks to those who have already posted!
We would really like to put together a slide show showing all your faces to show the amazing diversity of our community, reaching around the world. Please share with us here https://community.breastcancer.org/forum/135/topic..., or PM us. We may also present this at our annual fundraiser in October.
Photo (best quality possible)
Where you live
Diagnosis
Your Age
Quote about how the community/BCO has helped you.
Thanks for being a part of our community!
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Texasrose!!! WHOOO HOOOOOO!!!! YEE HAAA!
So happy for you!
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TexasRose,
Let me second that big WHOOO HOOOOOOO YEE HAAAA from Kiwi - such a huge relief.
I have my annual PET CT on September 23rd, so until then I'll be holding my breath -
Amy
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Yay, Caryn and Texasrose on maintaining the status quo!
And you, Boo, your adventure sounds ruggedly wonderful. I could see your hair blowing in the sea breeze.
Excelsior, ladies!
Tina (as NED as one can be with still-evident but quiescent lung mets)
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Great News Caryn and Texasrose!
Tina, we are all as NED as one can be with an incurable disease. To put it another way NED is for me just a variation of stable, only you can't see it. As long as it's not doing anything, it can't kill you.
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Cary, Texasrose, Tina - just so pleased for all of you! Wishing happiness and NED for everyone! This thread is so important to me. I find it uplifting and positivity is my new favourite word and approach to life!
Boo
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Boo123, your walking tour sounds wonderful. Eight miles is a good long way! I've been in Yorkshire, but not near the coast. What is the scenery like?
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