Stage IV NED crew : lets support each other
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Hi everyone,
I just found this thread today and I am so happy! I have been NED since removal of my single liver tumor in 5/2016. I feel guilty posting on the liver Mets thread because I don’t have liver Mets anymore. So, this is fantastic! It’s so wonderful to see all your stories, ladies. What inspiration. I’m doing a happy dance for all of you here!
Erica
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Welcome Erica! I think we all know what that guilty feeling is like when we reach NED and others don’t. I actually considered not posting my good news on the Ibrance thread initially, but when I did I received such positive responses and remembered how much hope it gave me hearing others positive news too.
Here is a supportive place where folk tend to dip in and out as we’re just getting on with life as much as possible
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Hello! I have been reading this topic for a while now. My oncologist has not said I am NED, but there is currently no indication of the two tumors I started with. Because of my response to chemo, I was able to talk him into treating me with curative intent. We have reached the point where I need to decide how to continue. Since I am triple negative there are no hormone choices. I also tested negative for any immunotherapy. I would love to stop chemo, but am a bit nervous about doing nothing. I would love to hear how others made this transition. It is very uplifting to see how well many of you are while “living” with this disease.
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Welcome Ericka and JCS, and I am doing a Happy Dance for both of you! I am triple positive, so can't offer advice for you, JCS, but hopefully someone who is triple neg will pop in soon with their stories for after tx. Hugs to all!
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Hi JCS
I'm also triple negative and have been NED since my first lot of scans after removal of my brain met, almost 12 months. I also had some activity show up im my axillary nodes but it seems to have been taken care of by chemo. I started on Gem/carbo which got me NED and then switched to xeloda. My oncologist gave me a choice of Xeloda or no chemo and just wait and see. I chose Xeloda as I wanted to do everything possible to keep it at bay and the anxiety of being off chemo was too much for me. It is very common though for triple negatives to stop chemo once NED, I guess it depends what you and your oncologist are comfortable with. I've been Xeloda for about 6months and my MO is happy for me to stay on it while side effects are minimal.
It's such a hard choice and something I've struggled with a lot. Chemo sucks and I'd love a break but I'm also so terrified of it coming back.
Sorry not much advice but I sympathise with your situation. It's a difficult decision
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Thank you, Ladies! It is so wonderful to have others to talk to. Just this month (so after 3 years), have I become comfortable with being NED. By that, I mean living instead of waiting for it to come back. Cancer has taken so much from my life and I just decided to stop allowing it. I was diagnosed at 38 and just now at 46 do I feel happy to be alive.
JCS, Karen, Ally and Bliss... thank you
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Hi LuvMyFam and I'm glad you're joining us! NED is a weird thing, isn't it? While you want to rejoice, it's hard to trust and it lingers in the back of your mind, "what if?" I tell myself this beast may take me one day, but today is not that day, so I will continue living my best life while I can since tomorrow is really not promised to anyone. Hugs.
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Hello all, when I started this thread I hardly knew what to expect, and it does my heart good to see so may amazing people sharing and caring for each other! Thank you all so much. I am still not NEAD, but i did see my oncologist today to get the results of a PET CT scan. I was pretty nervous and had mentally adopted the BRACE! BRACE! position. However, to my utter delight she says that Halaven has got rid of the liver met and is keeping the peritoneal stuff stable. I am totally thrilled, especially as I just skipped a whole two dose cycle to have a chemo break and take a holiday with my family to Scotland which was wonderful.
I don't post on this thread as a rule because I am not NEAD any more, but I just wanted to share my news and this seemed the place for me...thank you all for creating such a wonderful NEAD community...maybe I will get back to NEAD status again and be able to join you all once more.
Love Boo
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Bliss, thank you for those words. I know that people say it all the time, but everyone should live for today all the time. It doesn't matter if they are NED, Stage IV, or don't have cancer at all!
Boo, that is wonderful news! I pray you get to join us here, too. As you know, all are welcome. That's the way these boards are. And, thank you so much for creating this thread. It really is a wonderful place to be able to talk to others in the same situation.
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My mom just joined the NED club!!! Diagnosed de novo MBC in March, oligometastatic with 4 bone mets. She completed AC + T last month and PET scan shows (almost) complete response. Only one bone met is lighting up with a SUV of 1.8 (down from 6), rest are sclerotic with no detectable activity. Breast mass has SUV of 1.6. The oncologist interpreted this as NED since he thinks the signals are not significant....
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Wonderful news bydand
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Boo! So glad you popped in! Of course YOU are always welcome, my gosh, you started this thread! I am thrilled for you at the news you got. Sounds good to me, and you're on your way. Please join us anytime and do let us know how you are doing even if not yet back to NEAD.
bydand, that is wonderful news for your mom; so glad for her and you! Keep us posted.
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Yep echo Bliss... Boo you are The Onewho started this thread, so you of all people should be here!
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Yay, NEAD today! PET scan done yesterday all clear! Thinking of everyone on this thread ...
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Hi Ladies. Just checked in after a few months and have loved reading all the positive scan reports! So encouraging!
Just had my scan earlier this week and I'm still on the NEAD train as well! I've been doing PET/CT every 3 months, but am thinking about going to scans every 6 months now that I'm 2+ years NEAD. Still getting my H&P every 3 weeks. Taking letrozole when I remember.
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Yay, and Happy Dance for you, Chemokaze!! That's awesome news, and congratulations!
MommyErin, awesome news that you continue riding the NEAD train! Whoot, whoot!!
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Hi ladies,
Just want to share my good news: Im now 3.5 years NED!
Originally diagnosed in 2009 (found my breast lump this day 10 years ago!), then had a recurrence in March 2016. Isolated lung met. Had lung lobectomy and now on monthly hormonal injections. I feel fantastic & thankfully my CT-TAP today shows NED. Yay!!!
Love the positivity of this thread & reading all your positive stories. It gives me hope that we will all remain NED for many many more years to come
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Thanks everyone, this place does feel like home to me. Also I love it that it is such an inclusive community, being NEAD brings its own stresses and challenges, treatment continues and worries never really get kicked too far down the roadLike tread softly says, the positivity is wonderful. I'm doing my best to get myself back here on a proper NED basis!
Lots of love to everyone, Boo x
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TreadSoftly, Happy Dance for you! Woo, hoo!! Thanks for sharing your NED news and congratulations!
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Great to see so many happiness here. Big hugs to you all.
My turn next, scans this month, I’ve not been scanned since February as I’ve been NEAD for three years. I was scanned every three months so this is a big jump, not sure if not having as many scans is more stressful than having three monthly checks 🙈🙈
Love to all
Elen
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quick question about scans ! When you have a ct of chest /abdomen/ pelvis, does it assess bones in the scanning field? I’m not worried about Mets , but just curious ! Never thought about it until now
I’m having a Dexa scan in 2 weeks to get a baseline since I had my ovaries removed so young.
Pet in 10 weeks and if all clear I move to 6 months
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It does , I am just not sure how sensitive it is compared to PET/bone scan.
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Vevs and everyone else NEAD. Getting to NEAD so soon for me was a total shock. Happy shock. But I feel like I am now dealing with PTSD. I am trying hard to relax and enjoy this before the next scan. And I still have to deal with H&P and their SE's. I can live (and I do mean LIVE) with them. "They" say Perjeta can cause hair loss. Waaa. It was coming back even during Taxol but will I be bald forever? I read and re-read posts from Nedsters who have been NEAD for years. It gives me such hope. As Treadsoftly says "May we all remain NEAD for many, many more years to come"
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Hi Elderberry,
I get the PTSD, it’s always been a rollercoaster and always will be. I’m sure that you won’t be bald forever, to be honest when I wore my wig I looked better than I did with my own hair so I didnt mind it so much, every cloud has a silver lining. I believe that everything happens for a reason, I just don’t understand why
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Congrats Elderberry! Hope we are there soon, as for now my wife is unofficially NED (after all last scans), but I need another scan to be sure:) Husband Saulius
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Vevs, wishing you well with this month’s scan. Hopefully your results reportwill be swift in coming in....my last one took 5 weeks instead of 1 due to a backlog. That was stressful.
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Hi all my Sept 2nd scan has been viewed by my Dr and appears clear and unchanged from 6 months ago. I too am having to wait for the radiographers report due to a backlog, however hopefully I’m ok.
I am now 2.5 years on from stage 4 dx.
Wishing everyone all the very best.
Liz
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Hi Liz, yes hopefully things will be fine....my MO has said if no symptoms evident then likely to be OK, so I just carried on. How are your plans for a Scotland trip progressing
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just curious if “not better not worse” or “stable” counts as NEAD
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Hi Karen
I hope so too. I don’t feel I'm out of the woods yet and have another long wait until 24th Sept when I have an appointment.
Still want to do the Scotland trip. Husband has had to take 2 days for trips to Bristol and Leicester next weekend. Our sons are going to uni. Then we have booked 3 days to a little village called Levisham close to Pickering, North Yorks. Check out the Horseshoe Inn: roaring fire, fabulous food and Dalby forest close by.
Being retired at 49 means biting the bullet and embracing solo travel as leave is obviously limited for those still working.
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