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Stage IV NED crew : lets support each other

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Comments

  • Bliss58
    Bliss58 Member Posts: 938
    edited October 2020

    Karen, thanks for the info. Cross-posted on the Faslodex thread. Had the shots yesterday and all went well.

  • elderberry
    elderberry Member Posts: 1,068
    edited October 2020

    To All: Hi everyone. I had the results of my last PET scan and I am still all clear. Doing my own private Happy Dance.

    Karen: I want to see you back here soon!!!

    Stay safe, everyone!!

  • bsandra
    bsandra Member Posts: 1,037
    edited October 2020

    Congratulations Elderberry, you deserve that dance!

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited October 2020

    Elderberry 👏🏻👏🏻👏🏻👏🏻

  • RayneLanie
    RayneLanie Member Posts: 4
    edited November 2020

    Hi everyone!

    My mom was diagnosed with stage 4 tnbc with small lung mets from the get go in 2016 february. She did 6xFEC and got to Ned. But cancer returned in 2017 May. Again on the same lung. 6 months after TaxolxCarbo she was Ned again. We continued with aggressive treatment 6 more months. When the treatment ended she was Ned again. She is taking metronomic endoxan 3 weeks on 3 weeks off with little to no side effects, and today's Pet/CT scans still show Ned. 🥳

    She is BRCA negative but her mother died of bc very young. She has a particularly aggressive type grade 3, sporadic, high Ki etc, but treatment is possible even with mtnbc (Dr google can suck it)!

    She is 5 years since her diagnosis and 3 years Ned. Wishing everybody lots of luck with your treatment and may your ned status go for many many years. I'm mostly a lurker, but this forum has been such a help for me and my mom. 💝

    Thank you so much for your inspirational stories, information, and sharing the hope! 🙏


  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited November 2020

    Rayne, many thanks for your mum’s hopeful story, from another with lung mets who has just had some progression and had to switch treatment.

  • bsandra
    bsandra Member Posts: 1,037
    edited November 2020

    Dear Rayne, wow, what a story (yeah, suck it google!:). Your mom is amazing. I am very much for aggressive treatments in stage IV, as long as health allows it. Good luck and please keep us posted from time to time. Saulius

  • Vevs
    Vevs Member Posts: 81
    edited December 2020
    Just checking in after a long break...still NEAD and still enjoying life to the max even through Covid. I was 50 last month which is a great honour. Heading for my 5th year of Stage 4 and feeling well and life is generally good and kind. Welcome to all the new ladies and hello to all the old stagers, so glad to see so many of us still here. Merry Christmas and a Happy New Year to you all x
  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited December 2020

    Good to hear from you Vevs and that you are doing fine!

  • heidihill
    heidihill Member Posts: 1,858
    edited December 2020

    Vevs, great to hear your news!! And no better way to deal with Covid stress. Rayne Lanie, yes, go tell Dr. Google to suck it!

    I turned 50 before I started treatment, got to NED after less than 5 months, and am still NED almost 13 years later.

  • ts542001
    ts542001 Member Posts: 38
    edited December 2020

    glad to see that this is a somewhat active group.

    i'm going for pet scan in 10 days. this will be my third since my result was NEAD (one year) - of course i'm anxious, but no reason to think things have changed. TM are all negative.. it is very encouraging to see all of you that are NED for a long time.

    congrtulations to you all!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited December 2020

    Are there NED folks here who have been through the ringer like I have? Lots of treatments, hospitalizations, complications, feeling battered and PTSD? Being NEAD sounds great, it is great, but for me it doesn't convey the whole story: No evidence of active disease, but it can be hard to take advantage of it with the physical and mental toll. I waste time being tired or worrying about what will go wrong next.

  • bright55
    bright55 Member Posts: 147
    edited December 2020

    Seasons greetings one and all

    Yes Shetland pony..I am a feeling bit battered by new dual therapies ..one gave me pnuenomitis then in october there was some increase in TM so I am on new combo for three months and ct scans at four

    So here in Australia the mask I have been wearing in public is a must as white cell count has been lowered ..most prople dont wear one except in medical situations .. most states have no cases until there has been a resurgance the last few days so cross state holidays are in jeopardy ho humm

    I hope you all enjoy the pic of an hustoric quilt

    Before face book some creative women were recording happiness in there lives in Tasmania which celebrates home family farm life of early 1900 I smile when I read the daily life recorded

    Cheers Bright in Hopeimage

  • ts542001
    ts542001 Member Posts: 38
    edited December 2020

    shetland pony - i havent been thru many pharmacologic treatments, just letrazole and ibrance, but i had RT to lower back, which failed, then 2 different surgery to the area where the RT failed, the first to insert rods and screws to keep my vertebrae from collapsing from the cancer and the second (because the tumor continued to grow,) which basically cut away the tumor that they could see, so that the radiation oncologist could be able to do SBRT, - the radiation oncologist needed more room to be able to effectively to the SBRT. 2 days after the second surgery i had a CT myelogram, which was not pleasant, then after that, once i was healed from the surgery (i think about 2 weeks later) i had the SBRT. That was 1 hour a day for 5 days. they were doing the SBRT in two different areas, so it was 30 min. for each area, and the pain in my back during those procedures was intense, (from the mets to the bones,and the positioning )even though i premedicated with alot of pain medication, and getting on and off the table was horrendous. definitely had some PTSD from that treatment.

    have you spoken with a therapist at all? i have, regarding the cancer in general and the metastatic disease and the ptstd from the various treatments.and found that very helpful.,

    but with all that i am NEAD and of course worried about recurrence, but with time passing i have gotten a lot less anxious and confident in my treatment, jan. is a year that i had the first NEAD pet scan. my next pet scan is next week, of course i'm anxious, about the results. hopefully i will hear about the results quickly.

  • heidihill
    heidihill Member Posts: 1,858
    edited December 2020

    Beautiful quilt, Bright55! I love the biker.

    Shetland, I think most people at Stage IV go through the treatment wringer. Pain, exhaustion and PTSD are par for the course. The first five months for me was hell (TAC chemo, surgeries, infections, radiation, Zometa, biopsy anxiety, scanxiety). Endocrine therapy was no walk in the park either. But one day at a time is stretched into longer months and years if we're lucky.

    ts542001, SBRT sounds intense! I did another kind of radiation therapy which was exhausting but not so intense at 30 minutes a day (spine, chest wall, axilla, supraclavicle) for 28 days.

  • screech
    screech Member Posts: 63
    edited December 2020

    Happy Holidays Everyone! Everything is going well in my world despite COVID.

    My health continues - I'm six years from completing initial treatment and have tried to not look back too much!

    I wish everyone good health and great times in the new year!


  • rena_helene
    rena_helene Member Posts: 6
    edited January 2021

    Hi, all,

    Happy (??) New Year.... I haven't looked on this website for quite awhile... COVID, my job, the holidays, my family, all have been taking up my time and have somewhat distracted me from my situation. 2013 Stage IV diagnosis, 2016 recurrence, NED after additional surgery and radiation. Still going every 3 months to get Lupron shot since I'm turning 52 this week and on Arimidex... no idea when actual menopause will kick in, and don't have vacation time to have ovaries out to nip that in the bud.

    After all these years, I am still living my life 12 weeks at a time, from one ONC visit to the next, CT Chest/Abd/Pelvis every 6 months, Nuc Med Bone Scan every year.

    Anger. Denial. Still. I have not gotten past these things because all I want is to RETIRE with my husband at a normal age. Every time I see the word "retirement" in a news article or on a TV commercial on-line, I get ANGRY. I cannot count on this and why the hell am I saving all my money for a "possible" then? I've tried therapy and the one time I actually connected with a therapist, she retired due to her own health issues. Now, of course, with the world in the hellish place it is, no one can get an appointment.... much less find the relationship I had with this therapist.

    I don't know what to do. I tried yoga, once. It's not for me. I try soothing music. Doesn't help. Don't feel like watching TV... takes too much time (I have a senior in high school and a husband).

    Not sure where to go from here because even though I am NED, I am still likely in denial and just angry and depressed and anxious. Did I mention Bipolar II and Anxiety? Yeah, had that since I was in my 20's, so on a ton of meds for that already... you'd think it would help...

    Sorry, don't mean to sound like Debbie Downer... just having a rough day. Another one. Although my work day just ended (remote work, thank goodness), so I can go sit with my dog and husband will be finished in 1/2 hour... daughter napping (she's a senior, remember?). Guess I'm done for now... have a good night, everyone. - Rena

  • nancyhb
    nancyhb Member Posts: 235
    edited January 2021
    Rena - *hugs* Thank you for sharing your struggles and frustrations. I’ve been stable for two years now but have Bone and CT scan tomorrow and am already exhausted. The pandemic upends normalcy anyway, and leaves us dealing with so many unknowns...and let’s just throw Stage IV in the mix too, ‘k? Let yourself feel whatever it is you’re feeling, and hopefully embracing alllllll those emotions will help you move towards a sliver of peace.

    I’m in a weird place where I was given a Stage IV dx four years ago but have not done any active treatment because I have ogliomets and for f*cks sake I’m tired of chemo. I’m checking my privilege here, tho - I’m in a place where I can forgo treatment right now as my couple of bone mets are fairly stable and not impacting my QOL. I know I’m unique and I have some guilt about that. I am both excited and frantic about tomorrow’s scan - if it’s good I get another year’s pass but if it sucks what’s next? I lived in quarterly increments for the first couple of years, holding my breath between scans and exams. Then every six months. And now it’s been a year. And really, all any of us can do is live moment to moment, day to day. Tomorrow is another day.

    When I was first told I had bone mets I tried to squeeze the rest of my 30 years of life into 12 months. I would never retire (I’m now 57 and DH is 66 and starting a “second career” that will carry him well into his 70’s, bless his heart), and I won’t see my grandkids grow up and I won’t travel and...and...and...and I’m still here and scared but stable. Still here. And I have some hope, though some days are harder than others. Medication has helped; yoga and running help too. I’ve purged junk and quilt fabric and tools I’ll never use; I’ve hoarded time with my kids and DH and myself. Some days I’m angry; some days I’m tired; every day I’m grateful when I wake up.

    More *hugs* Rena. My heart wishes you peace, and sends love.
  • bright55
    bright55 Member Posts: 147
    edited February 2021

    hi all

    New year greetings everyone for continued good health and stable status

    I have mets to lungs for five years with only slight changes to pleural nodules which ment a change in hormonal therapy

    Finally after five years of not being approved, the Australian gov drug approval for second line targeted therapy has ment that I could start the targeted Kisquali(no cost )with Faslodex ( payAU $2100 for three cycles..then free)

    now after four months recent Ct shows stable and no evidence of progression to other sites

    All the best

    Bright in hope


  • helenlouise
    helenlouise Member Posts: 363
    edited February 2021

    Bright that great news on Kisquali in Australia. Thank you for advising and best wishes for your treatment

  • kanga_roo
    kanga_roo Member Posts: 303
    edited February 2021

    Hi Bright, you might want to check out the “ Ribociclib/kisqali with Letrozole - anybody on this combo” thread.

    There’s a few of us in Australia who have been on it as a first line treatment and have shared our side effects and progress. It is good to hear it can now be used as a second line treatment. Wishing you all the best,

    Jacki

  • luvmyfam
    luvmyfam Member Posts: 53
    edited February 2021

    I’m so excited to see everyone here! It makes me happy to see few posts... I’m hoping that means we are all living our lives.

    I moved and got a new MO. She is great an on top of things, but she(and I) missed my las Prolia shot. It was supposed to be at the end of November. I just realized it. Now it’s taking all this time, effort and scans to get it fixed.

    My back started hurting on December 27th. It didn’t get better with muscle relaxers and diclofenac sodium, so I had an MRI on January 25th. It showed two compression fractures in L1 and L3. I went to an ortho surgeon and his X-rays on Feb 9th show I now have 5 compression fractures. He wants me to wear a brace and have kyphoplasty done in two surgeries. He will do a biopsy during surgery. In the meantime, I am trying to get my next Prolia shot.

    Now, my sacrum hurts every time I move. I can’t get comfortable. And I feel like my bones are just disintegrating now! Does anyone have experience with this

  • ts542001
    ts542001 Member Posts: 38
    edited February 2021

    hi there. i'm so sorry you are going thru all this. i had extensive bone mets to vertabrae and sacrum. also had kyphoplasty to one vertebrae and after the kyphoplasty they put some rods and screws in to fortify my L5 - S1, because i had extensive tumor there and they were worried that the bones would collapse. surgery was okay, it w,as minimally invasive surgery. the kyphoplasty was done by an interventional radiologist and a neurosurgeon did the other part of the surgery, was done all at the same time. recovery was okay, but i continued to have pain because the hormone treatment i was on,letrazole and ibrance wasnt working and the tumor kept growing, soi was having pain from the bone mets. had an mri about 2 months after the surgery and that when they realized my pain was from the continuing bone mets, i had another surgery to decompress the area and to make room for me to have SBRT. they changed my treatment to immunotherapy and between that and the SBRT my pet scan is now NEAD.

    i hope that i wrote what i had clearly. if not feel free to answer me or even PM me.


  • olma61
    olma61 Member Posts: 1,026
    edited February 2021

    Just want to share/vent about my aborted scan appt. Supposed to have my six month scan this week, appt yesterday. I was all dressed and ready to get an UBER and step out the door and I noticed a voice mail from 8 minutes before. Appt cancelled, some problem with PET machine (yikes). Next available appointment, first week of March. Now I am in limbo for two more weeks. Play sad trombone sound here. 😆🤓

    I am glad I didn’t wind up leaving before getting that message. The ride to the facility is very costly, and I’m about 45 minutes away. Hoping for good news in two weeks, trying not to think about it til then. I so wanted to get the damn thing over with

  • luvmyfam
    luvmyfam Member Posts: 53
    edited February 2021

    Olma, I’m sorry you didn’t get your scan, but glad they caught you before you left! Scanxiety for another 2 weeks! I will be sending prayers your way.

    TS, that is awesome that you are NEAD! Prayers for it staying that way.

    I had my Prolia shot yesterday. My blood work came back with high Calcium, ALT and Alkaline Phosphatase. Probably because of the fractures.

    I’m having MRI’s of my thoracic and lumbar spine on Sunday. Hopefully having kyphoplasty soon.

  • olma61
    olma61 Member Posts: 1,026
    edited February 2021

    Thank you luvmyfam - will do the same for you, for a good outcome with those fractures

    Heart

  • heidihill
    heidihill Member Posts: 1,858
    edited February 2021

    ts, woohoo, that is awesome news, especially after all you've been through! luvmyfam, hope the Prolia will lower the calcium levels. olma, wouldn't that be something if you get great news after two weeks. Would be worth the wait in gold. (Sorry, got my metaphors mixed up.)

    This month I'm NED 13 years! Just wanted to get that out of my chest.



  • ts542001
    ts542001 Member Posts: 38
    edited February 2021

    heidihill WOW, 13 years, that is terrific., i'm NEAD for 1 year, diagnosed 22 months ago. when i was diagnosed honestly didnt think i would live more than a year, esp after the letrazole/ibrance didnt work (my tumor was 95% ER+ive). glad i had the "defect" necessary to have immunotherapy, because that is really saving my life. several annoying side effects (arthrits), but hey i'll take that instead of cancer any day.

    luvmyfam - hope you get the kyphoplasty soon. and hope your calcium goes down. my calcium went below normal from zometa, so i only take it every 4 months or so. i'm sure prolia will get your calcium down

    good luck to all.

    teri

  • olma61
    olma61 Member Posts: 1,026
    edited February 2021

    Thanks for the good wishes, Heidihill, and congrats on reaching that wonderful milestone!

  • bsandra
    bsandra Member Posts: 1,037
    edited February 2021

    13 years! Heidihill, You have been my inspiration right from 2017 when my wife got diagnosed. I read every of your messages 20 or more times... so inspiring. Saulius

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