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Unfortunately things are going downhill

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Comments

  • iwillwinthisbattle
    iwillwinthisbattle Member Posts: 42
    edited September 2017

    praying for you and sending you all good vibes

  • artistatheart
    artistatheart Member Posts: 1,437
    edited September 2017

    Oh my gosh, you have been dealing with that pain for too long now. So glad it's coming up and pray you get massive relief very quickly and can lose the pain meds. Also hope you are getting Harper love time!

  • heidihill
    heidihill Member Posts: 1,858
    edited September 2017

    Hope the rads is working its Magic! Sending prayers for you.

  • chelleg
    chelleg Member Posts: 396
    edited September 2017

    I am praying for you Kandy. God is good! He will see you through this! Stay strong! You will be pain free and playing with Harper by Christmas. May god bless us all.

    With love and hugs,Chelle.

  • Kandy
    Kandy Member Posts: 424
    edited September 2017

    Hello ladies, thanks for all the prayers and warm wishes. I started radiation on Monday. It is going okay. I thought yesterday that I was feeling some better but today has not been good at all. Does anyone know how long it takes to be able to tell a difference? It doesn't help that I'm getting very little sleep. I stay in the bed for a hour, then I doze sitting up on a sofa. I hope everyone is doing okay. Praying for each of you.

  • Lita57
    Lita57 Member Posts: 2,338
    edited September 2017

    Kandy, it can take a full week or 2. Keep in mind the rads will continue to work after the daily sessions are over.


  • Kandy
    Kandy Member Posts: 424
    edited September 2017

    Thanks Lita. Maybe I will be lucky and will tell a difference in a few more days. Can you tell I'm a little impatient? I've put up with this about as long as I can. Hoping and praying that your days are pain free.

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited September 2017

    ((hugs))


  • artistatheart
    artistatheart Member Posts: 1,437
    edited September 2017

    kandy, there is no such thing as impatient when you are in pain.....Hope things kick in soon.

  • AnimalCrackers
    AnimalCrackers Member Posts: 542
    edited September 2017

    I second what Artistatheart said!  Patience is a luxury people in pain can't afford!

    Hope you get relief soon.  Hang in there.  (((HUGS)))


  • zarovka
    zarovka Member Posts: 2,959
    edited October 2017

    Kandy - thinking of you. How are you feeling today?

    >Z<

  • Kandy
    Kandy Member Posts: 424
    edited October 2017

    Z, at the end of last week I couldn’t really tell any difference. But during the weekend my back started feeling a lot better. As of today it has greatly improved and I’m so very thankful. You hang in there on your trip. We are all very excited to hear the details. Praying for you.

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited October 2017
    Kandy, so happy to hear you are feeling better! I was worried about you when I hadn't heard from you on the Halaven thread. I'm glad the rads have kicked in and you have some relief. Makes such a difference in QOL.

    I'm assuming your Halaven infusion is today too. Hope all goes well and you have a good week. Take care, Kandy. You continue to be in my prayers.
  • Lita57
    Lita57 Member Posts: 2,338
    edited October 2017

    Woo hoo Kandy! I knew the rads would eventually kick in.


  • zarovka
    zarovka Member Posts: 2,959
    edited October 2017

    I am so happy to hear this. I hope the improvement continues.

    >Z<

  • bigbhome
    bigbhome Member Posts: 721
    edited October 2017

    Yeah Kandy! Radiation really helped me, but it takes time to see the full results.

  • Kandy
    Kandy Member Posts: 424
    edited October 2017

    I posted this on the Halaven thread but I thought I should post this here too.

    I met with my MO today. I will get scanned the end of next week to see if Halaven is doing any good. We are anticipating progression again. My tumor markers have been spot on every time. Once again they doubled, now I'm over 3400. He wants me to try Keytruda, although it is only being given to triple negative patients. He is starting the ball rolling to see if they will give it to me. I'm hoping they will cause I feel like I'm running out of good option. So far, nothing has worked since hormonals stopped working. I think I need more than prayers now, I need a miracle. Praying for each one of you, that treatment works exceptionally well.

  • Lita57
    Lita57 Member Posts: 2,338
    edited October 2017

    Kandy,

    I will find myself 8n the same boat very soon. Had my first Taxol infusion WITHOUT a dedicated port installed. All the nurses asked why I don’t t have a port yet since I will supposedly have it for more than 6 mos if it works.

    The thing is, I have a very aggressive cancer on 2 fronts. I told the nurses that i will have another brain mri in a matter of weeks. If there is serious progression of the brain tumors because of all the leptomeningeal involvement, that will probably be that.

    Blasting me with chemos that cant penetrate the blood brain barrier won't do much, and Kaiser will weigh that against mone y spent. Of course, that's why they already told me to get my affairs in order and have my advance directive on file.

    L


  • zarovka
    zarovka Member Posts: 2,959
    edited October 2017

    Lita, Kandy - Abemaciclib crosses the blood brain barrier and was effective as a single agent in heavily pre-treated MBC patients. It's been recently approved, should be available soon. It's theoretically synergistic with immunotherapies. Something to ask about. My gut is you would want to take it on top of what you are doing, but no expert here ...

    >Z<

  • Mominator
    Mominator Member Posts: 1,173
    edited October 2017

    Sending hugs and prayers to (((Kandy))) and (((Lita))) and all the ladies here on bco

  • artistatheart
    artistatheart Member Posts: 1,437
    edited October 2017

    Kandy, I am so glad your pain has improved. Keytruda may be a good stopgap until the Abemaciclib Z suggested comes through. We just keep praying for new developments and I pray for your miracle everyday.

    Lita, Interesting point from Z for you too since it crosses the brain barrier. I hope and pray this drug is released ASAP.

  • Lita57
    Lita57 Member Posts: 2,338
    edited October 2017

    I'm definitely bringing this up with my MO in a couple of weeks, and if Kaiser Permanente can't get it for me (e.g. NOT a part of their protocol...), I'll go somewhere else and pay out of pocket (or maybe they'll have a number to call to help offset the cost for people as some other drug companies do) if I have to.

    I'm not ready to die yet by any means!!!


  • jaycee49
    jaycee49 Member Posts: 1,264
    edited October 2017

    https://www.cnbc.com/2017/09/28/reuters-america-update-2-eli-lilly-wins-u-s-approval-for-breast-cancer-drug.html

    From the above article:

    "Lilly said Verzenio will be available in the United States by the end of October. Under a special savings card program, the company said eligible commercially insured patients may obtain the first three months of therapy free, then pay no more than $10 per month for up to 12 months."

  • Kandy
    Kandy Member Posts: 424
    edited October 2017

    Thanks for posting that link.

  • melmcbee
    melmcbee Member Posts: 371
    edited October 2017

    Prayers and hugs sent.

  • Purplegurll
    Purplegurll Member Posts: 89
    edited October 2017

    Hello all,

    I've just been diagnosed with mets to my leptomeningeal tissues. Tomorrow I will have a second Head CT and I assume next week will be a second brain MRI and a spinal tap. Once these are completed my oncologist and neurologist will determine if I'm well enough to have the Ommaya Reservoir placed and then move ahead with methotrexate. They will hold on more halaven which I've been on for other mets since February. Is this timeline and chemos similar to those others have been on? Brain cancer is anew met for me and I'm not sure what to expect. Thank you for your feedback.

    Robyn


  • lalady1
    lalady1 Member Posts: 530
    edited October 2017

    Kandy and Lita - joining Z and Jaycee in the Abemaciclib push from Eli Lilly marketed as Verzenio which will be available by the end of October. Seems to really kick the 4th pathway as a CDK4/6 inhibitor, and can be monotherapy without AI (MONARCH 1) or with faslodex (MONARCH2) and passes blood/brain barrier.! Please ask your MOs. (())


  • Lita57
    Lita57 Member Posts: 2,338
    edited October 2017

    Purplegurll/Robin,

    There is a "Brain Mets Sisters" thread in the Stage IV forum. Please feel free to join the rest of us there.

    So sorry you find yourself in the LM club. That sucks! As I wrote earlier, more and more of us are ending up with LM and BM issues. Seems to be a natural progression of the disease for some of us.

    Lita


  • Purplegurll
    Purplegurll Member Posts: 89
    edited October 2017

    Thank you Lita! Just got my surgery date for the Ommaya Reservoir so I'll be sure to check out the brain cancer thread.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited October 2017

    Thanks for the link jaycee!

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