Stage IV NED crew : lets support each other
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A year ago what I thought were back pains as a result from an epidural I had 6 months prior when I was giving birth, turned out to be MBC to my T11/12 spine bone.
I was devastated;How could this be happening to me?I was only 30 at the time with two kids a 3 year old and 6 month old.
I would look at my kids and weep,life became a blur.
I immediately started radiation to the spinal area,I then went on to having 4 cycles of A/C and after that 12 of Weekly Taxol.
During treatI didn't recognize the woman staring at me in the mirror but I was determined to finish treatment and I had hope that my life was going to have some sort of meaning again.
I'm happy to say that as of my recent PET scan I'm NED,my Dr says that there is no active disease in my body at present.(we all know that things could change)
I feel sooo good ,haven't felt his good in a long time ,even before the diagnosis I don't remember feeling this good.
I'm currently on Tamoxifen and I go in every three weeks for Ogiviri(sp).Luckily I have had very few side effects on the Tamoxifen.
I just want to say a very big Thank you to you ladies for being my support ;I used to spend hours everyday on this site;looking up positive stories,stumbling across very scary stories my emotions were all over the place.
I know tomorrow is not guaranteed but honestly right now ,I'm feeling good and that's what I'm focusing on,I've even gone back to studying and I'm just going to keep on going.
As my Drs always encourages me to "just live,don't limit yourself ".
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Congrats Faith! You are way too young to be dealing with all this. I love your story and atttitidude and wish you the best.I've
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Congrats Faith! You are way too young to be dealing with all this. I love your story and attitude and wish you the best.
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Faith123: Doing the Happy Dance for you. Your doctors are so correct. LIVE!!!
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Hi everybody. My second chemo cycle ended two years ago. Since then I am NED. I am now on Herceptin Perjeta only (I am her 2 positive). Is there anyone on H and P for a long time or has anyone stopped this maintenance treatment? Do you think this combo could keep us NED for a long time? I am not sure what to expect.
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Thank you all, thank you from the bottom of my heart! Saulius
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tzoul, look at the herceptin and perjeta thread - it is long . Some members take perjeta holidays , some drop it altogether
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congratulations Faith that’s amazing news.
Met with my oncology team last Wednesday and the outlook wasn’t promising. They’re still waiting on the results to see if it’s HER 2 + or-. They said I might qualify for a EBRT stereotactic radiation clinical trial. News today that I do not qualify as the areas with cancer are too large. I’m really sad. just praying for the HER- now. I had such a hard time with chemo the last time I went through it. Taxol really kicked my butt. Still suffering from neuropathy. If it’s the positive she wants to put me on the docetaxel every three weeks for six cycles. Then the Herceptin and the pertuzumab. The negative will be Faslodex and the Ibrance. I should find out by Thursday. Does anyone have any experience with any of these? Would love to hear your war stories. On a more positive note my boyfriend gifted me a Boston terrier puppy. I named her Rosie. She is exhausting and super comforting at the same time. An amazing distraction. She’s helping me type this. Or at least trying. Downside is my poor cat is clinically depressed. Hang in there ladies!
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Just saw my PET scan on the portal, and woohoo still NEAD! I'm so excited, it has been almost a year since I've been NEAD.
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🎉👏🏽👏🏽💪🏼Congratulations, Simone!
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Wonderful news Simone! I’m happy for you. 👍
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Dear Simone, we celebrate with you:) One small step for you, one giant leap for mankind... Saulius
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Awesome news Simone. I pray I will hear that too one day (((hugs)))
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Hello! I am just logging in after taking a bit of a mental health break from these threads. They were such a life line for me in treatment and I Just wanted to pop on to say I am 3 yrs NEAD and continue on Hercetin infusions (no P) every 3 weeks. “Gratitude“ is the word that defines my current season - and “Legos!" As at diagnosis I had a 2 year old who is now almost 6!
Edit: 3 and a half years - Jan is my 4 year mark
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wow congrats on that! Love these positive posts. My cancer is TN so limited options for me. I have read that the hormone part can change when in bones? I need to ask dr. I’d be thrilled to have so many other options open up!
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Hi livebig
Great to hear from you. I’m also just on H shots for now. I may restart P in the Autumn.
Best to you.
Liz x
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Livebig, glad you checked in. Celebrating your 3.5 yrs. Keep on trucking!
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big thumbs up, livebig, great to hear it
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I had my latest scans this morning. No new disease, no progression. I am just months in the NED status, but it feels good! I haven’t shown any cancer since March 2019, so you could say it has been a year. I have not had any chemo since January 2020. Fingers crossed this continues
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congratulations livebig and JCS. I hope to walk in your footsteps.
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Congrats JCS! That's awesome news!
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Hi everyone!
Just thought I’d pop on and say congrats on the NED. I just had scans last week and I’m happy to say I am a member of the club!I just passed 3 years of Stage IV in May. I feel amazing and although I have only told one friend and a few family members, no would even guess I’m Stage IV. I just decided that I have life to live.. Stage IV is just going to have to come along with me.. I have things to do! 😁
Keep it up ladies!0 -
finallyoverit: doing the Happy Dance on your NEAD status. Congrats on three years --- may you have many many years of NEAD ahead of you to do "your things" .
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Congrats finallyoverit! I hope you have many more years in the club!
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Finished my 6 rounds of Taxotere three weeks ago, sitting here getting H&P infusion and soon Xgeva. The good news is NED, the oncologist said she was “very pleased.” I’m cautiously optimistic that I will be one of the lucky ones who are NED for a long time. Dealing with Stage IV does change your perspective on life and you know to look at every day as more than just 24 hours.
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Joan: Yay on NEAD! Doing the Happy Dance for you. May you be popping in and posting on NED thread for a long time!!
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Congrats Joan!
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I have been watching this thread for almost a year and a half now. I am so thankful to everyone here who has shared their status and given hope. And I am humbled and blessed to be able to say I have been NED, and feeling fantastic, for 1 year now. Who would have thought
Oh, and scanxiety sucks. You long time NEDsters, does it ever get easier?
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I have been NEAD for almost 9 years and I can answer your question in one word; NO! And I say this with my PET coming up on 7/8. I will say that in the beginning, having scans every 3 months, was incredibly stressful. Now, I only have annual scans and I find that’s easier. I have had a couple of scans off schedule when I had pain and those were ultra stressful, but thankfully showed nothing
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Hi all,
Popping back in to say hi
. Its so nice to see some familiar names chiming in. This support group was such a big part of my coping when I was first diagnosed in March of 18'. I am still NEAD (maybe even NED at this point since Ive gotten a hip replacement with extraction fractured bone where SBRT to femur met used to be. Although, I suppose you could say that a hip replacement at age 34 would be evidence in and of itself on a scan....oh well. Just samantics. NED has been wonderful and I know im lucky within the realm of stage 4 but I have really been struggling this week. Im grappling with losses of facebook friends, some of whom Id never even met. Its such a weird thing attempting to grieve the loss of a stranger. Im also just really sad and, if im honest, angry about having to live this MBC life with such young kiddos. I miss taking things for granted (I know that sounds bad). I miss normal.
Im grateful for this space to vent. Ive changed my username from cfree123 to momof3-123. Even in NED, the c is always there. Im still learning to live along side it.
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