Stage IV NED crew : lets support each other
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Thank you so much Heidihill,
I am so happy to join your group. I should really introduce myself. My name is Elen, and over these past two years I have learnt so much about MBC. We are the top of the iceberg, I believe that there are many thousands of undiagnosed and stage 4 survivors out there who are blissfully unaware of how lucky they really are.
From my understanding the Ki-67 of the initial and the metastatic tumours are very important prognostic factors. I only say this as mine is 2% and it would seem that because it proliferates so slowly that my immune system is able to control it. This is how I’m in a natural remission.
I’m not sure if this will always be the case but I’m happy to believe that my body is very clever and is keeping it at bay.
Thank you again for accepting me
Elenxxx
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As of February 2018, I'm Stage IV NED for 2 years. I'm still on TDM1/Kadcyla and doctor doesn't want me off since I've been responding so well. Tumor in left breast was the size of an apple and it along with other little tumors disappeared after 3 infusions of TDM1/Kadcyla. I am lucky. In January, I changed my infusions from every 3 weeks to every 4 weeks. This was against my doctor's advice, but I think I'm making the right choice--to slowly wean off.
I feel pretty good most days. The main issue now is low energy. Fatigue seems to hit later in the day but today, I've felt it since I woke up. I am more sensitive in general: to the moon cycles, noise, music, lights, dramatic change in temperature. I got a headache that lasted most of a day when the temperature went up by 20 degrees F, from one day to the next. I am learning that I have to guard my energy and use it wisely. I've always been sensitive but post diagnosis & post chemo, I've become more sensitive. I am a HSP - highly sensitive person and found great insight and tips from Elaine Aron's book. I am still coping and would like to hear what others experience and what helps with fatigue, how you deal with it at work.
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I second the welcome vevs! And wow I love your story! Thinking you are right about all of the unknown mets cases out there.
I am growing hair back and regaining energy. Feeling really good actually. The only med I'm taking is herceptin every 3 weeks. Minimal headache on the day of infusion, but no other symptoms thankfully. I do feel so fortunate when I read on others situations who battle daily pain.
Love the updates! So encouraging
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Hi Livebig and Caroline, nice to meet you!! I can’t advise much Caroline as I am lucky and don’t seem to suffer from fatigue.
Livebig I took and still take Biotin since chemo and I have never in my life had so much hair!!! Not length but amount...it’s great xx
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I have PET on Monday. It was 1 year ago today that my world came crashing down with a stage 4 diagnosis. I'm hoping Mondays test continue to show NEAD. I'm really nervous.
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Kkrenz, I've got everything crossed that you get your desired report. Try not to stress unless you really need to.
Love n hugs. Chrissy
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Kkrenz all the best with your scan and results. I will be thinking of you and crossing everything x
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Kris,
I will be thinking of you on Monday. You and I are one year out from MBC dx now and I know how tense scans are.
Please let us know.
Very best wishes,
Liz xxx
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Kkrenz I know how you feel. I too had my scan April 9 and wait to hear those wonderful words. Will our lives turn down a scary path many other are on or can we be grateful for our current path? May we both and others out there continue to do well
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For those waiting for their latest scan results, I am thinking of you and I understand the anxiety. The darkness always seem to hover at the 3 month scans.. for me, anyway. Sometimes, I just want to wake up and this cancer business is just a bad dream. Please keep posting with your results and whether you are NEAD or not, we are here for you.
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I am still NEAD....what a relief. I had liver tumors that were not metabolic....and those are gone as well. I don't have to tell you my relief. Thank you all for thinking of me......Bstein, I'm sending up a prayer for you right now.
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hi. I’m not quite a member here yet, but I’m trying. I was completely NED for 3.5 yers after diagnosis. Since then Ive been oligo (limited small mets) in my bones. Have been trying to find the right treatment plan. I feel good where am now. Four mets have recently become two. I’m thinking of cyber radiation to knock those out and hopefully become NEAD. So thanks for the encouragement, ladies.
Sunset
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Hi all, I was diagnosed stage 4 BC with one small met in liver 14 months ago, had chemo and herceptin, now only on herceptin and aromasin. Had a CT scan today, still NEAD since April last year... Grateful and emotionally exhausted at the same time, you know the feeling.. All the best to everyone here
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Kris,
Wonderful news! So pleased for you.
Day walker- awesome news too and a beautiful sunset: will follow you in your journey. Wishing you all the best.
This thread really helps me, thanks guys.
Liz
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👏🏻👏🏻👏🏻 So happy to hear about Kris and Daywalker. Liz, this thread cheers me up as well. I’m over the moon for you all and life is sweet and kind for me and I am appreciating and loving and living it to the full. Long may this last for all of us
Ele
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Awesome News daywalker...today is a good day. Sunset, I'm praying that Ned will soon be your friend again. Thanks Liz and Vevs.
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happy dance kkrenz!!!!!
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April 9 CT scan “No evidence of metastatic disease” I’m so grateful and blessed! Next scan will be pushed to 6 months instead of three!
How often are other NED being scanned?
This will be 12 months post SBRT to 3 tiny liver mets and never anything showing elsewhere. Basically, I’m only 12 months NED, before that they could still see 3 tiny lesions that kept getting smaller with treatment and I thought was just scarring until “subtle” progression on Jan 2017 scans. Zapped and here I am!
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Sunset, zap the buggers! If offered take it. The less tumor burden the less chance of mutations and spread
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Bstein
So very happy to hear this news.
I am moving to scans every 6 months now after Ned confirmed end of March.
Liz x
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Sunset, I'd love to be able to follow your progress to NED on this thread. So please update.
I was last scanned 3 years ago and probably will be scanned only if TMs or something else changes. I get x-rays of the lungs and ultrasounds of abdominal and chest areas instead. Before that I did twice yearly and then annual scans.
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Thank you Heidi, I meet with the radioncogist today. So I should at least know what’s next soon enough.
I had one bone met in my sacrum for a long time. My ONC didn’t want to zap it because he said he needed to watch it. In the meantime, I’ve had a few more pop up and that one never really changes. I don’t know if I had zapped that it would have made a difference. He doesn’t think so..but I can’t help wonder.
Be back later!
Sunset
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Happy to be able to stay here after clean CTs and bone a s: “No scintigraphic evidence for osseous metastasis.“
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Yay, everyone!
Tina
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Awesome news....yeah!
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great news
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that's great Jen! It certainly seems as though you “got this”. Do you go to UCLA?
Sunset
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PET scan yesterday and I’m still on the NEAD train! **happy dance**
Congrats to everyone is still here and welcome to the newbies! I’m a little over 13 months out from my diagnosis and have been getting scans every 3 months, though I’ll find out from my oncologist on Thursday whether he wants to start pushing them out further.
Echoing bstein, I would be curious to hear how often you other NEAD ladies are getting screened.
Hugs to all you brave ladies!
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MommyErin, very happy you received good news. I get a bone scan and CT with contrast every 3 months. I have never had PET scan.
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When I was first diagnosed, I got PET and bone scans every three months. As time went on,I had PET-CT scans every six months, then PET-CT scans every year with a bone scan thrown in every two years. I now get a CT scan annually.
I suppose this current, relatively relaxed routine is due to insurance costs of PET/PET-CT plus my ongoing NEAD status.
Tina
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