Lulu update

Lulu7582
Lulu7582 Member Posts: 112

Well darn it......... the last CT scan has shown that the darn stupid beasts have progressed so I have a call into my gyn/onc about an appt to discuss another clinical trial or ???plan B. I had a feeling the scans weren't going to be positive news, especially when my CA 125 marker went up 15 points after dropping previously but dont worrry I am not giving up yet and will continue to fight!! Surpisingly all my bone lesions are dormant and not causing any problems. Its the lung lesions that are growng and a couple in my pelvis.  I feel pretty good other than some back pain which thankfully aleve takes care of. 

Have been on the clinical trial website and there is a one trial that my center is involved in that I might be eligible for so we will see what doc says. And yes I am in pretty good spirits, leaning on my faith and praying that something better is just around the corner for my cancer. 

Happy Monday everyone! xoxo

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Comments

  • Jairoldi
    Jairoldi Member Posts: 221
    That's never what one wants to hear

    Darn it is right! Good to hear you are leaning on the strength of your faith.  I don't know what I would do without mine.

  • derMaus
    derMaus Member Posts: 558
    edited July 2019 #3
    Dammit All !

    Dammit all, Lulu, that is NOT what we wanted for you !! BUT, at least the bone leisons aren't growing and your pain is manageable with OTC meds, that part is very positive. Has there been any discussion of targeted radiation for the lung? This seemed like a decent overview of some possibilities:

    https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/lung-cancer/patients/treatment/types-of-treatment/radiation-therapy.html

    I'm so happy that your spirits remain high and commend you on that achievement; you're an inspiration to the rest of us. Please do keep us updated and know you're in my prayers. I, also, don't think you've reached the end of your options and will be curious to see where the next treatment takes you...hopefully straight to NED! Hugs!!

     

  • Donna Faye
    Donna Faye Member Posts: 427
    Stay positive

    Lulu, I formed a lunch group of 7, 6 ladies that were my Mustangs ( what I call my support team) and we had lunch yesterday. 6 of us are cancer victors and yesterday we were discussing how none of us were sure 3 years ago that we would have a tomorrow. As one said, " My immunotherapy is a magic bullet as I never believed I would be here today." So I am wishing you a magic bullet as well. The strides they have made in cancer treatment since my first bout 20 years ago is amazing. They may not have a cure for all, but these magic bullets are helping us stay around and in pretty good shape. Hugs and love to you as you gear up for battle. We are behind you.

  • Armywife
    Armywife Member Posts: 449 Member
    Hugs, Lulu

    We're here to cheer you on through the next steps!  Thank you for keeping us posted.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,038 Member
    edited July 2019 #6
    Darn, Lulu, I am so sorry to

    Darn, Lulu, I am so sorry to hear this.  You have an incredible spirit and that is so wonderful for all of us to see.  Please let us know your next step.  Hugs dear one.

  • Fridays Child
    Fridays Child Member Posts: 254 Member
    Extra prayers

    Darn it, Lulu, I hate to hear that.  Extra prayers that they'll find something soon to help.  Glad to hear you're feeling well and hope the lung mets will give up soon!

  • cmb
    cmb Member Posts: 921 Member
    I hope you can get started

    I hope you can get started with a new treatment plan soon to get rid of those persistent lesions. But I'm glad to hear the pain is still manageable. Facing something new is always more palatable when you're feeling generally okay. Positive vibes being sent your way…

  • LisaPizza
    LisaPizza Member Posts: 351 Member
    I hope the trial comes

    I hope the trial comes through! 

  • barnyardgal
    barnyardgal Member Posts: 272
    Drag. I'm sorry. Glad to hear

    Drag. I'm sorry. Glad to hear you have such a good attitude and hope that clinical trial comes thru quickly.

  • MAbound
    MAbound Member Posts: 1,164 Member
    Amazing

    Wow! Here you are giving us news we really don't want to hear and yet you are not bringing us down because you can still be positve about it all. You are amazing and it's such a gift that you stay here for everyone else. Thanks for not giving up. It means a lot to any facing something they don't want to do to see others keep at it. You pull us all along with you and your strong example helps many!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Sorry to hear this Lulu. I

    Sorry to hear this Lulu. I hate this crappy cancer! I hope and pray the clinical trial will be a great fit for you and perhaps can get you to a point of NED. Glad to see your spirits are up and you are still ready to fight. Please keep us updated as you move through this phase. We are all here for you.

    Love and Hugs,

    Cindi

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    Sorry to hear this Lulu. I

    Sorry to hear this Lulu. I admire your positive attitude and strength!

    Sending u prayers and positive health vibes. 

    Wishing u well!

  • Lulu7582
    Lulu7582 Member Posts: 112
    edited July 2019 #14
    Thanks everyone for your prayers and good wishes!

    Yep waiting to talk to doc looks like Friday....she just got back from vacation today so told her RN to give her a few days to figure out my next steps rather than bring me in today and 'Surprise!!' LuLu has progressed and wants plan B!!!!! Will call the trial RN today and tell her to cancel my Taxol appt on Friday.....useless to be doing Taxol if its not working. Also stopped the study drug yesterday so we can get that stuff out of my system before I start something else. Usually a clinical trial wants the 'wash out' period to be 4 weeks so I am just getting the show on the road a wee but quicker... being an advocate for myself!!! lol xoxoxo

  • Lulu7582
    Lulu7582 Member Posts: 112

    Stay positive

    Lulu, I formed a lunch group of 7, 6 ladies that were my Mustangs ( what I call my support team) and we had lunch yesterday. 6 of us are cancer victors and yesterday we were discussing how none of us were sure 3 years ago that we would have a tomorrow. As one said, " My immunotherapy is a magic bullet as I never believed I would be here today." So I am wishing you a magic bullet as well. The strides they have made in cancer treatment since my first bout 20 years ago is amazing. They may not have a cure for all, but these magic bullets are helping us stay around and in pretty good shape. Hugs and love to you as you gear up for battle. We are behind you.

    Thank you!

    Yes that is what I am wishing for ....that magic bullet!!! Just got to find the right combination to stop the lung lesions and the pelvis lesions. Thankfully the bone lesions are stable and not causing problems. Having everything stable and not progressing would be wonderful!!! Thanks for your post....very encouraging!! xoxo

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    Lulu

    Hi Lulu, I too am sorry to hear that the treatments aren’t controlling your cancer as hoped for.  You are very smart to proactively direct and take some control over getting a new protocol in place. No one has more of a sense of urgency than the person who has the cancer. I admire your positivity too! Good luck when you see your doctor. I will be keeping you in my prayers too!!

    ((Hug))

    Lori

  • BluebirdOne
    BluebirdOne Member Posts: 564 Member
    Good luck to you Lulu!

    So sorry to hear about the news but I am so impressed with your spirit and ability to move past this news and on to the next treatment. We are here for you.

    Denise 

  • jan9wils
    jan9wils Member Posts: 180 Member
    Well it stinks that it didn't

    Well it stinks that it didn't work but good that there's another trial that might be a good match. I've got my fingers crossed that you can start soon and that it doesn't have a bunch of side-effects. 

  • KatnHat
    KatnHat Member Posts: 27
    So sorry for the latest news

    I hope the clinical trials will help you. I was two during 2018 and they did help keep my tumors at bay. I've tried several things since then and they all help somewhat until the next big thing comes along. And yes, you're your own best advocate. Good luck to you!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,038 Member
    Kat, I hope you see this

    Kat, I hope you see this question, I'm sorry if told us this somewhere I just don't recall.  Do you know and can you share what drugs you were taking during your clinical trial?  I realize they don't always tell you.

  • Lulu7582
    Lulu7582 Member Posts: 112
    KatnHat said:

    So sorry for the latest news

    I hope the clinical trials will help you. I was two during 2018 and they did help keep my tumors at bay. I've tried several things since then and they all help somewhat until the next big thing comes along. And yes, you're your own best advocate. Good luck to you!

    Clinical trials

    Yes I too would be interested to know which trials (drugs) you tried. I am hoping to stay close to home with the next trial.... the only other option is more chemo (Doxil) ugh!! Anyway really interested in what Kat tried. xo