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Unfortunately things are going downhill

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Kandy
Kandy Member Posts: 424

Funny how this crap can change so quickly. Up until September, I had one lonely bone met. Since then, it seems to be on the run. I had several new bone mets in September with one liver met. I was switched to Afinitor and Aromasin. For 2 months my markers were dropping and we were all excited. At the end of December I had a pet scan that showed progression. My oncologist said we were going to hold off and see if A/A would kick in. Then my tumor markers started rising again and I am having quite a bit of pain. Overall, not doing well. So today oncologist said, it's not working. So sad. He wanted to start giving me Abraxane, we will start that next week. Also, scheduled me to have my port put back in, I thought I was done the first time and had it removed. I am so sad over the news. I feel like this is really the beginning of the end. I really would love to have more time and just want Harper to be able to remember me. I knew that this would happen at some point, but I really wasn't prepared for it to move so quick. Dang it. I wish all of you the best. I pray that someday a cure will be found and no one will have to go through this again.

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Comments

  • jensgotthis
    jensgotthis Member Posts: 671
    edited January 2017
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    I am so sorry to hear of your progression. I hope the chemo is the key to getting a handle on it and that you're back to a more stable place. If can change in an instant and I'm going to send lots of good thoughts that yours changes back and you get lots more time

  • Kjones13
    Kjones13 Member Posts: 662
    edited January 2017
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    oh kandy! I'm so sorry things are progressing so quickly. I bet that is really scary. I was dx stage 4 from the get go so I knew my port was in for the long haul. Having it put back in is such a strong reminder that things aren't going the way you planned. But don't you hang your hat up just yet. I know you know many of the ladies on here who found the right combo and things are back under control! Today sucked. No doubt about it. Take some days to rant, have a pity party, whatever you need to do...then you pick yourself up and kick some cancer ass! We are here for you. And that baby will know you because you are going to fight like hell to be here

  • Madelineg
    Madelineg Member Posts: 9
    edited January 2017
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    You have my Prayers. You know things can change in a instant and you could be stable again. Do not give up. I started with Stage 4 so I knew I was in for the long haul. I know someone that had stage ,4 melonima and it's ,13 years later and the meanie is still alive.He told a friend that I was going to die and I did just the opposite with him.

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited January 2017
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    Kandy - I too am sorry to hear this! Ditto what Kjones said. We know things can change so quickly. I was on death's door in early 2015 and I'm still here kicking and screaming 2 years later. Up, down, up down - hate this seesaw we are on! Give yourself a bit of time to wallow in this, and then dust yourself off and get back to loving on that baby! We are definitely here for you.

    A big virtual hug to you tonight!

    Sheri
  • Beatmon
    Beatmon Member Posts: 617
    edited January 2017
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    Kandy, so very sorry to hear about your progression. I bet that the change will knock those tumor markers back down. I know that you love him so much. If strong will can do the trick, you will come out with a lot more time with the baby. Brenda

  • Nan812
    Nan812 Member Posts: 224
    edited January 2017
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    hi Kandy,

    I too was diagnosed from the start with stage 4 and it seems like every day I hear of someone who is stage 4 @ 12 and13 years and still fighting. My doc told me " no, we can't cure it, it's more like a chronic condition that needs to be managed like diabetes". This is just what we do...we somehow manage to fight...why?...because we love

    You are all in my heart

  • jensgotthis
    jensgotthis Member Posts: 671
    edited January 2017
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    Kandy, have you discussed getting a new biopsy done to see if your receptor typenhas changed

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2017
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    Kandy, it looks like it has been eight years since you had any chemo. That damned cancer won't know what hit it. Don't give up hope. Sending caring thoughts your way.

  • Kandy
    Kandy Member Posts: 424
    edited January 2017
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    Thanks for all the warm wishes. I really need a picker upper. It is 3 in the morning and I can't sleep. It's like I'm trying to figure out every issue that will arise after I'm not here and find an answer so my family doesn't have to figure it out. Grrrr, got to love how the mind works. I am a planner and I feel like I have to figure everything out for them, after all I have always made it easy for them up to now. I just don't want them to not have some good alternatives. Anyway thanks again for everyone caring.

    I did have another biopsy on the second lesion in September. It was still estrogen positive but progesterone negative, her2 negative.

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited January 2017
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    I'm a planner and I like having alternatives too. Being in NC, you have access to some great medical facilities. Do you already go to a NCI center?

    For me, I like to keep lists of clinical trials, treatments and specialists that may be of use to me in the future. Have you had Foundation One/Guardant testing done? I'm stable on standard treatment at the moment, but if/when things get more interesting in the future, I plan to seek out the best precision medicine has to offer me based on my results.

    It sounds like you still have a relatively low tumor load and have many more lines of treatment available, so remember that. People have bounced back from much worse situations than you are in now

  • heidihill
    heidihill Member Posts: 1,856
    edited January 2017
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    Ditto what Bad_at said. Chemo could mean a new beginning, especially with progesterone receptor negative, and the port would make it happen with greater ease. Sending hugs.

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited January 2017
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    Kandy, I wish I had the magic words to take all of this stress away. Just know that I am sending you prayers and good thoughts during this difficult time. Hoping your next treatment will knock those mets back.

  • Noni
    Noni Member Posts: 74
    edited January 2017
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    I love all the wonderful, positive words others have shared. What a treasure of experience and insight.

    Kandy, I'm sorry about the progression. It's always a slap in the face to get such bad news. Please remember, as the others have said we are faced with years of ups and downs. You're heading in for a fight, but we'll be here to cheer you on and hold your hand.

  • Fitztwins
    Fitztwins Member Posts: 144
    edited January 2017
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    I am a planner too. I too always look at clinical trials and new drugs out there. (Personally...I am de-cluttering right now and again getting my finances in order-lol)

    I have been dancing with this disease for 12+ years and mets for over 8+,

    I can't tell you how many times I have had progression. Even had a fracture in my femur this past summer and I thought, thats it, I am done, this is the big downhill slide...but then things stabilize ....I have been on chemo 4x - lost my hair 4 times? on my last hormonal....(I am a triple +++)

    I am still here, mainly stable. Yes, you have had progression, crappy that you now have pain and that one liver met. You are not out of options. What about IBRANCE? you maybe be the perfect candidate. Or a clinical trial. This isn't your hail mary treatment.

    So, what you have is what I call progression depression. I know it well. I give myself a little time to grieve, then I get my cancer fighting cape and get back up. Today is a new day, and you are not out yet. You have many more good days, months, and years ahead of you. Its a marathon.

    onward and upward. deep breath. you can do this my friend.


    Janis

  • Kandy
    Kandy Member Posts: 424
    edited January 2017
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    Janis, my oncologist did say if I really wanted to, he would agree to ibrance. But his thoughts was that he really didn't think it would work. And every time we try something it takes several months before we can determine if it's working, at that point my cancer seems to be severely on the run and has caused multiple new mets and potentially has invaded a new organ. He said because mine is so aggressive, he felt at this point we should do what he thinks will surely work. I agreed, in fear that the next time would be extremely worse just like this time. So, is it possible that I won't stay on chemo now till the end? I figured once I went there he wouldn't go back. Let me know your thoughts. You have done awesome for 8 years. Two thumbs up for sure.

  • sharethehope
    sharethehope Member Posts: 37
    edited January 2017
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    PR change will make a difference in treatments did the company give any list of successful drug for your new form. Levine also has a very good integrative onc, Baily-Donnen. sp? Also are you on Xanax or something like it if not get on. Calm mind will help a lot. Ended my second cycle of taxol yesterday. Having steroids reduced to 4 has really helped but still have acid reflux. Have been through lots of chemos myself. I want a new test but onc wants to wait a yr. Really!!!!!!! You know my prayers are with you Kandy. Never give up. Never Every change is scary, April

  • linda714
    linda714 Member Posts: 11
    edited January 2017
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    Please try the Ibrance with either letrozole or the butt shots (flasodex). It has worked for so many. I was on it 23 cycles in trial. Got me Ned immediately, now on letrozole alone.

  • moissy
    moissy Member Posts: 371
    edited January 2017
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    Kandy -I'm sorry to hear about the progression. I know those times at night when we're trying to figure things out can be rough--especially if you are having pain right now. Janis' term of "progression depression" is such a good descriptor. If you decide on chemo, results should come more quickly than some of the other meds you've been on so far. Hoping your new plan is in place soon so you will start feeling better.

  • kayrnic
    kayrnic Member Posts: 111
    edited January 2017
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    Progression is the absolute worst. I know you automatically start thinking the end is near! But don't give up! The next treatment could put you right back to NED! Sending love and hugs!

  • sueopp
    sueopp Member Posts: 238
    edited January 2017
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    Thinking of you Kandy, and sending all my good karma your way. It's that cha-cha again: one step back, two steps forward. We areall standing with you. Fondly, SUE

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited January 2017
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    Kandy, Bummer! Progression is never welcome, but it sounds like your MO has a plan for you. I think that chemo will start working more quickly than Ibrance and Faslodex or Letrozole, and that is probably why your doctor has recommended it for you. That does not mean that you will be on chemo forever. Once those cancer cells are under control, your doctor can reassess the situation and might recommend something else. There are still many other treatments out there. You have been through a lot in the past year. It is understandable to feel the way you do now. Anyone who has seen progression, even without all the other challenges you have been through during the past year, would feel the same way. I do like Janis' term of "progression depression". It describes the feelings perfectly. Do what you need to do. Cry, rant, scream, have a big piece of chocolate cake and a glass of wine. It takes a while to adjust to the fact that things have progressed, but believe me, eventually you will adjust, and you will realize that this is just another bump in a road full of pot holes. You seem to receive great support from your family, and we will always be here for you, too. Planning for the future is never a bad thing, but be prepared to change plans often. My plan at diagnosis more than a year and a half ago and then again when things progressed to my liver 6 months ago was to bow out quietly and gracefully because I thought things would end quickly. Well, here I am now feeling healthy as a horse, and I am anything but quiet and no where ready to bow out. My liver mets are"less conspicuous", and I am loving life. I will keep you in my prayers.

    Hugs from, Lynne

  • SusanR
    SusanR Member Posts: 59
    edited January 2017
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    I'm hearing you Kandy!  After 5 wonderful years on Faslodex, I just found out I have significant progression of bone mets.  I'm now on round 2 of Ibrance and Letrazole.  I'm going through some rough "progression depression" (thanks for the term Fitz!) right now myself and feel the need to talk myself off the ledge at any given moment.  

    We can do this!!!  I am a planner and can't deal with the fact that I am really not in control here, but I'm spending some quiet time to get it in perspective.  Who says our newest treatment plan can't work for us?  Who says we are doomed?  I'm going to remain hopeful that our new treatment is going to kick this cancer to the curb and keep us going for a long time!  

    Hang in there Kandy.  There is so much love and support to be gotten from this wonderful group of women!!

    SusanR

  • AmyQ
    AmyQ Member Posts: 821
    edited January 2017
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    Kandy,

    When one of our members suffers progression, we all suffer progression. I'm so sorry this is happening and seemingly so quickly but I agree IV chemo most likely will get a faster response. Prayers for you and for a treatment that gets you back dancing with NED.

    Hugs -

    Amy

  • tina2
    tina2 Member Posts: 758
    edited January 2017
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    Kandy,

    I'm so sorry. Clearly your doc knows your situation and fears the progression will rage out of control without using the big guns. Under the circumstances, I'd go with your doc's recommendation. Knock the damned cancer senseless with chemo, then regroup to consider a less harsh treatment.

    Please don't assume things are going downhill because of this setback. Read and re-read the experiences described above. Many women here have been on this roller coaster for a long, long time, and are living well.

    By your side,

    Tina


  • BabyRuth
    BabyRuth Member Posts: 107
    edited January 2017
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    So sorry to hear of the progression Kandy. Hearing those words are horrible and no matter what you can not totally prepare for the outcome. I hope your MO comes up with a plan you are confident in and if not go for a second opinion. It is always good to consider your options before you make your decision. Sending many prayers your way!

  • Kandy
    Kandy Member Posts: 424
    edited January 2017
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    Big thanks to all of you wonderful ladies. What a great group to be affiliated with, everyone joins together to try to lift someone up. Progression depression is a great term, thanks Janis. Depressed is probably the understatement. The last 18 months have sucked. First the acetabulum fracture, can't walk for 6 months, literally thought that would drive me crazy, finally someone agrees to do a 10 hour major surgery that they are not sure I will live through it, then recovery time, finally I'm starting to walk again and low and behold my tumor markers start doubling every month. So in less than 6 months I go from Ned to too many lesions to even name, plus the liver, oh and the adrenal gland has been added. Anyone else out there have mets there? Leave it to me to put it everywhere. I just would like a small fraction of time that I felt good again, I have forgotten what that was like. My world has definitely been rocked, more like turned over. It's hard for me to think it's moving so quick and very scary. I do wish each and every one of you only the best. Y'all rock

  • iwrite
    iwrite Member Posts: 746
    edited January 2017
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    Kandy,

    Sending you hugs and totally onboard with some meds so you can sleep between planning sessions. I agree with the others that there are other treatments available. It may be that chemo will knock it back and then Ibrance will get you back to NED.

    Get another opinion if you need to! We are all thinking of you and understand the progression fears. Hug Harper! You have more living to do!

  • Fitztwins
    Fitztwins Member Posts: 144
    edited January 2017
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    Honestly, if you haven't been on a chemo for a few years, yeah, I would jump on abraxane to Knock that crap back and then add ibrance.

    Just my opinion. Good luck, it sucks, you can do this!

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited January 2017
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    Kandy, I silently followed you on the A/A thread, your major surgery and I'm so sorry to read your latest news. You've been through hell these past 18 months and now facing new challenges. It really sucks. You are in my thoughts and prayers. I'm glad your MO has a new plan for you with Abraxane. Things can go downhill quickly but can also turn in the other direction quickly. This is my wish for you. I like that your MO is on top of things and reacts promptly. Sending much love and hugs. We are all rooting for you.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2017
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    Beat it back with chemo, then hold the line with hormonal treatment is the strategy my onc used for me. I think that because cancer mutates to adapt, alternating treatments is a strategy that makes sense.