Support for our sister ABeautifulSunset!

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  • Anotherone
    Anotherone Member Posts: 633
    edited August 2019

    exactly what I meant , sunset - things like repurposed drugs etc.

    In any case I wish your remaining years whatever they are being good !

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  • Jaylea
    Jaylea Member Posts: 478
    edited August 2019

    Sunset, I hope you're able to internalize what we're saying to you, that you're an amazingly strong, graceful, and positive woman. What a great legacy to share with your family. You're a great role model to us folks on these boards. Sending you love ~ JL

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2019

    ABeautifulSunset, just posting to say I read your latest posts with great sadness. To be honest, I hardly feel able to respond right now. I need to get some tears out first. So I will just send a hug for the moment....and more hugs. I can’t imagine how hard it is dealing with the physical pain along with the possibility of running out of treatments. Let us hope that vinocap will quickly help, miraculously help. I know you will have the wisdom to know what to say to your kids, and that you have raised them to be able to handle what they must.

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  • JFL
    JFL Member Posts: 1,947
    edited August 2019

    Sunset, I am sorry to hear about the back pain and feelings of being weak. Both difficult. I wanted to give you a glimmer of hope about “vino”. I had my first PET scan after nearly 4 months and Navelbine (aka vino)/tamoxifen is working. My liver mets have decreased and the metabolic activity has decreased significantly. The one bone met that lit up has gone dark. I was beginning to wonder whether I would have any more good scans. It has been at least a year or more since I have had a good scan. There is hope for you. Vino/cape is powerful on cancer yet relatively gentle on the patient

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  • Simone80
    Simone80 Member Posts: 988
    edited August 2019

    Sunset,

    Sorry you are having so much pain. Wishing you well on the chemo.

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2019

    JFL, that does help a little. Although I do feel I am finally on that slippery slope. Things just seem to be going wrong .... one after the other.

    I am currently back in the hospital. Awaiting a surgical procedure called kyphoplasty. .

    They found s few more cervical Mets during my MRI, and they did a brain MRI last night. So I guess we'll find out the state of by brain soon enough.

    Need good news for a change

    Sunset

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited August 2019

    Sunset, I hope the surgerygoes well and the brain MRI is clear. You remain in my thoughts. We are all pulling for you and hoping that things turns around quickly.

    Hugs and prayers from, Lynne


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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2019

    JFL, that does help a little. Although I do feel I am finally on that slippery slope. Things just seem to be going wrong .... one after the other.

    I am currently back in the hospital. Awaiting a surgical procedure called kyphoplasty. .

    They found s few more cervical Mets during my MRI, and they did a brain MRI last night. So I guess we'll find out the state of by brain soon enough.

    Sunset

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  • candy-678
    candy-678 Member Posts: 3,950
    edited August 2019

    Sunset- I am in your pocket today. Prayers.

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited August 2019

    Hi, Sunset. I've been missing in action lately. Cancer TX is drama! Mismanagement is rampant! Patients are constantly not heard or believed! I'm tired of it. I wish I could change it for you and me. But, what can one patient do? For Pete's sake, we are in the middle of trying to extend our lives. Okay, rant over.

    It is sad to read your words and imagine how you are feeling. I'm glad you are posting here, letting us know what is going on. We can all easily imagine ourselves on the same slippery slope. You still give us hope to persevere.

    I'm only 2 1/2 years out and sincerely doubt I will get to four years out. But, it's not about comparisons. It's about making memories for as long as we are on this earth. You've done that. I know you want more time to do that. I hope you get it. Praying for you and your family. 💞

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  • JFL
    JFL Member Posts: 1,947
    edited August 2019

    Sunset, I hope the kyphoplasty goes well and brings some relief to your back. Fingers crossed brain MRI comes up with nothing. It makes me sad to hear you may be on that slippery slope. This damn disease. It is just not right.


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  • bigbhome
    bigbhome Member Posts: 840
    edited August 2019

    Sunset, sending you hugs and prayers!

    Claudia

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited August 2019

    No matter when we think the "slippery slope" is happening, I think most of us want more time. For whatever reason; making memories for our family, hugging your DH, getting your list done, traveling.

    It just makes is suffer more emotionally to think about what is next. BeautifulSunset, I have read good results with kyphoplasty. Maybe if your pain gets controlled, you can look forward to happier days. Pain is so debilitating, it can make you give up. I have been there.

    It sounds like you want to experience more life. So I will be with you in my thoughts every day. Just get out of bed, put on your clothes and do 3 things that will make you happy that day!


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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2019

    ugh...I dont even know where I should be posting this. So now I also have lesions in my brain. Today will be a Nuero radio onc consult, and a kyphoplasty consult. I will most likely need WBR. If i can get my back comfortable and my brain on hold for a while, I can maybe have a few decent months with my family. It would be worth it. I should probably go over to the brain rad thread and see what's up with that. Ugh...

    Sunset


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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2019

    This is terrible! It’s just shocking how the cancer can behave fairly well, as it did for eight years, and then go crazy like this. Hoping you can do the kyphoplasty and radiation quickly and smoothly, and then have more good time with your family. Please do keep posting here when you are up to it. I feel helpless, can only send love and support to you, my beautiful friend.

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited August 2019

    sunset we are all here with you. I’m sorry you’ve received this news :( crap!!!

    I know illmae has been living very well with brain Mets for several years as well as others. Sounds so scary though!!! We are all loving and holding you as you navigate this new information

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2019

    well I just had a good consult with brain onc. I have a handful of very small lesions, very well located for treatment. He seemed very positive, so I'm feeling better. We are just waiting now for the kyphoplasty team, because the pain must be dealt with. Then we can hit up everything and perhaps buy myself some more time. Fingers crossed.

    Ladies, the many years I felt "normal" .... please take advantage of those. I feel Like i did, and am so grateful for that time.

    Sunset

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited August 2019

    Sunset, Ugh! Yes, you definitely should post to the Brain Mets thread. People there will help you through whatever treatment you need. It amazed me to read how well people on that thread are doing. It truly opened my eyes and made me realize that there is hope, even with brain mets. You have been hit hard with negative news lately. You must feel so overwhelmed. Take things one day at a time. No one knows what is ahead for you (and all of us). All we can do is move forward a day at a time. At the end of each day, think of at least one positive thing that made you smile or touched you in some way or something you did that made someone else smile. If you need inspiration, just think of everyone here who cares about you.

    Hugs and prayers from, Lynne


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  • Anotherone
    Anotherone Member Posts: 633
    edited August 2019

    glad that your team seems coherent so you do not have to spend your time and emotional energy on getting second third opinions and questioning them.


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  • bigbhome
    bigbhome Member Posts: 840
    edited August 2019

    Sunset, crap. So glad there is a plan! It sounds like you have a good team on your side.

    I love that you are really appreciating your family. I really feel like this will buy you more time to spend with them. Make more beautiful memories!

    Hugs and prayers,

    Claudia

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  • Daniel86
    Daniel86 Member Posts: 271
    edited August 2019

    Sending my support and positive thoughts your way too. You got this girl!

    Keep us posted!

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  • ann273
    ann273 Member Posts: 209
    edited August 2019

    Good to hear you have a plan Sunset. Lets get those brain mets. We just need to hold on. More treatments are coming..

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2019

    all of your support really helps me a lot. Thank you sister Shetland Pony for creating this forum for me. And thank you to my other sisters for your supportive words and thoughts.

    Sunset


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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited August 2019

    Just when we say what else can possibly happen........it happens. So sorry, Sunset.💞

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  • JFL
    JFL Member Posts: 1,947
    edited August 2019

    Sunset, I don't know what to say except that this must be a huge punch in the gut. Beyond comprehension. However, based on what the neuro consult said, it sounds like the situation is pretty good, as far as brain mets are concerned. I have a friend that lived nearly 15 years with brain mets and another friend currently NED of brain mets for 4 years. Hang in there during this challenging time. Many people here care about you very much! Did you have suspicious symptoms or did your MO decide to give you a brain MRI due to the cervical mets' close location to the brain only?

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2019

    Sunset, I'm glad the team jumped right on it, and it does sound from reading the brain mets thread that they are like skin mets in a way, scary to us, but not a huge concern for the oncologists?

    My daughter just moved out to an apartment (she'll be starting public health at UCLA in the fall), forcing me to think about what I want to do, go swimming!! and make her a sofa quilt, and even think about decorating for Halloween, early tho it is, makes me happy to think about it.. So maybe just make some happy plans , and leave the medical crap to the docs for awhile (well, WBRT is obviously a major deal, but as much as possible to let other stuff go)...

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  • candy-678
    candy-678 Member Posts: 3,950
    edited August 2019

    Sunset- Just reading the news. So Sorry. Crap. But the location and smallness of the lesions sounds promising. Sending love and support.

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2019

    plan in place ALWAYS helps. So tomorrow I am scheduled for an spinal ablation with kyphoplasty.

    They want to ablate because they don't want the tumors to regrow over the newly cemented area. I'm down with that.

    Once the kyphoplasty is complete and healed... a few days, they will start mapping the brain. No WBR yet. Going for the Cyberknife , or the other brand name I can't think of that does the same thing, and zap those little buggers. I saw the MRI. The largest is only 1 cm, which I guess is small. They aren't horrible looking.

    And then we keep watch on that liver. The IR who did the Yyitriym (y90) is also doing the kyphoplasty, so he's invested. I like it.

    I may get some more QOL time after all! I have hope again. Thanks for going on the ride with me.

    Sunset




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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited August 2019

    Sunset, Things are moving along quickly now. That is good to hear. I will be thinking of you tomorrow as you have the spinal ablation with kyphoplasty. It sounds like the best way to go, and your team has put a lot of thought into the plan. Things sound much more positive now that everything is coming together.

    Hugs and prayers from, Lynne


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  • pajim
    pajim Member Posts: 2,785
    edited August 2019

    Sunset, I'm so sorry you've had these setbacks. But it does sound as if there's a plan in place and I truly hope the kyphoplasty helps with the pain. It can be hard to think at all, much less clearly, when you're in pain.

    Hang in there! Many hugs,

    Pam

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