The Other Shoe is Dropping...After 13+/8+ Years

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  • Gitane
    Gitane Member Posts: 1,885
    edited March 2014

    Holding your hand as you recover.  Rest!  Hugs,  G.

  • Aruba
    Aruba Member Posts: 543
    edited March 2014

    LindaLou53, More healing thoughts and prayers coming your way!  I was another newbie that you helped more than you know with your calming way and myriad of information on cording/lymphadema etc.  Sorry, but your pocket just got heavier with me jumping in!!

  • wallycat
    wallycat Member Posts: 3,227
    edited March 2014

    Just saw your post.

    Sending you love, hugs, virtual success...and anything I can throw at you.

    I'm so sad you have to endure this and hopeful this was a horrible error and no cancer.

    Please update us as you can.

  • pajim
    pajim Member Posts: 2,785
    edited March 2014

    Crossing fingers and toes for you.

    yes, anesthesia can cause all sorts of "ughs".

  • LindaLou53
    LindaLou53 Member Posts: 929
    edited March 2014

    My oncologist's office called today. The neck node biopsy reveals metastatic breast cancer...ER+ / PR- ...same as my 2005 ILC Dx. I don't have the formal report in my hands yet, should get that tomorrow when I see the neck surgeon. I guess I am glad the Dx seems definitive and we can get started right away on treatment. Will see my Onc on Friday for more in depth discussion and treatment plan.

    I was driving my husband to his own doctor's appointment when we got the call. I think he is taking it harder than me right now. We will both feel better when we get some questions answered and feel that we are doing all we can. I feel a sense of urgency now for so many things that will need to be done, but am trying to resist that knee-jerk response. Hoping my oncologist can alleviate some of my current concerns.

    I will keep you all updated. Thanks for listening and supporting me.

  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2014

    Linda, thanks for taking the time to update us. I'm optimistic that this will be highly treatable (I have a close friend going through a very similar diagnosis just now, and doing well). Looking forward with you both to answers, a great treatment plan, and a really supportive team on your side.

    Hugs, prayers, chocolate,
    Binney

  • Pat634
    Pat634 Member Posts: 271
    edited March 2014

    Keeping you in my prayers

  • Aruba
    Aruba Member Posts: 543
    edited March 2014

    Looking forward to hearing about the treatment plan that kick's cancer's butt...  Hugs to you..

  • wallycat
    wallycat Member Posts: 3,227
    edited March 2014

    Linda,

    I am so sorry.  We know the routine only too well...game plan, etc.....

    Sending you gentle hugs and warm thoughts.

    I must say, being a grade 1 for both cancers, I was reaaally hoping this was going to be nothing; I'm sure you were as well.

    Best to you and thank you for being here when I first joined!

  • SusaninSF
    SusaninSF Member Posts: 1,213
    edited March 2014

    Linda,

    So heartbreaking!  I have just started looking at this part of the discussion boards as I have discovered that I have an eye tumor but remember well your fabulous pictures of different "flat" looks.  Those pictures were so motivational for all of us.

    You have successfully gone through the fight a couple of times and I'm sorry that you have to go through it again but I'm hopefully you will make it through again.

    Think of you and sending hugs your way!

    Best, Susan

  • Leah_S
    Leah_S Member Posts: 8,458
    edited March 2014

    LindaLou, this isn't the news you wanted to hear but I can say, from what I know of you on these boards, you WILL go on to live your life as well as you can.

    I started Faslodex at the beginning of Feb. So far I have almost no SEs, just very tired. The Faslodex 2014 thread is waiting for you!

    Sending love.

    Leah

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2014

    So sorry to hear that this is the diagnosis - was hoping for better. You are in my prayers, sister; this is your third hit and that is so NOT fair!

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited March 2014

    LindaLou: I'm so sorry to hear of the biopsy findings. I wish there were something more useful I could say, but wanted you to know that you have one more well-wisher. 

    I just read this thread for the first time and saw that the CT mentioned a possible UPJ obstruction and you mentioned having flank pain. As someone with a history (both personal and family) of kidney stones and hydronephrosis, I just wanted to bring the CT finding to your attention and mention that it sounds like it was the cause of the recent discomfort you were experiencing. Something like that can be easily overlooked when your onc is developing a treatment plan for you because there are bigger fish to fry, but it sounds like a consult with a urologist is in order. I'm so sorry to add anything to your plate. An obstruction can be caused by anything such as a stone, scar tissue, or a congenital abnormality that you've always had. 

    Best of luck to you and you will be in my thoughts as you move forward. Sending hugs.

  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited March 2014

    Linda my thoughts and prayers are with you as you start your new treatment plan.

  • LindaLou53
    LindaLou53 Member Posts: 929
    edited March 2014

    Thanks again to you all for the good wishes and prayers.  

    It has been a difficult night and morning for me.  After my appointment with the surgeon yesterday, who confirmed the biopsy results and verified my neck incision is healing, I came home to find that my precious but fragile 21 year old kitty, Socks, had taken a turn for the worse.  By early this morning it was apparent that it was her time to go.  I have just returned from the vet clinic where we freed Socks from this life and hope to see her again in the next.

    The timing is so difficult for me and yet also seems for a reason somehow.  My 86 year old father just returned to his farm 2 weeks ago after spending over 3 months in my home recuperating from bilateral total knee replacements.  It was a labor of love for me to help guarantee he could maintain his independence working his farm and doing the things he loves.  Hopefully, he will have many more good years to do so with his new, strong knees.

    My whole life I have been a caregiver and nurse.  My husband of 42 years, while the strength of my life and greatest friend, is wheelchair bound from childhood polio and now also depends on me to provide the physical assistance he requires.  I am co-guardian of my 58 year old sister who has suffered lifelong mental disability.

    My husband and I have no children.  I know I must do my best to fight this disease and keep myself strong.  I know it is time for me to take care of myself....but I just can't help but worry so much about those depending on me.  Sorry, but I am full of many emotions this morning.  I will adjust....with time.  My pragmatic side will soon kick in and I will start making mental plans for achieving the best outcome possible.  I see my oncologist at 1pm this afternoon.  I will post more updates later.

  • cp418
    cp418 Member Posts: 7,079
    edited March 2014

    LindaLou - sending more healing prayers your way for a smooth treatment regimen.  Like you previously said - take one day at a time and be kind to yourself.  Hugs to you.  Joann

  • Tomboy
    Tomboy Member Posts: 3,945
    edited March 2014

    Wow,linda. You are an amazing woman. i totally wish the vERY BEST for you.

  • pearlady
    pearlady Member Posts: 882
    edited March 2014

    Linda I just read through this whole thread and have to agree with kathec.   You are an amazing woman.  I think once you have a treatment plan in place you will feel more positive.  Since you are ER+ and have had only had Aromisin,  there are other AI for you to try.  I had great results with Femara and was NED for five years.  That one definitely worked the best for me.  I have have bone mets since 2001 and if someone would told me then that I would still be working full time in 2014 and pain free, I would have thought they were crazy.  Prayers and healing energy for all.

    Monica 

  • wallycat
    wallycat Member Posts: 3,227
    edited March 2014

    (((((((((((Linda & Socks)))))))))))

    I can't stop crying.  I am so sorry....even expected events are not always welcomed.

  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2014

    Linda, please know how much I care, and you take care of so many dear family members, I so hope you get the help you need to tackle this.

    I'm so sorry for your loss of Socks. 

    Kira

  • LindaLou53
    LindaLou53 Member Posts: 929
    edited March 2014

    Once again, I cannot thank you all enough for the prayers and encouragement!  

    I met with my onc yesterday and came away with some strong impressions of both the seriousness of my Dx and the number of options available for treatment.  While both my previous Dx were grade 1, this new presentation on CT is worrisome in that I have widespread significant lymphadenopathy that was not present less than 8 months ago.  This in addition to the changes seen in the formerly "stable" adrenal mass and bony lesions indicates a more aggressive process going on.

    Now that we have the formal Bx results my onc does not want to delay starting some type of Tx ASAP.  Her plan is to start with Faslodex injections and monitor my current palpable nodes on a bi-weekly basis when I come in for the injections.  A repeat CT scan will be done in 3 months.  She is willing to give the Faslodex 3 months to prove it can stabilize my disease but if progression is detected while taking it, she plans to move me on to chemotherapy again.

    Here is the wrinkle to the proposed plan.  The cancer center I go to has recently become a participating facility in the new PALOMA-3 clinical trial which gives Faslodex + Palbociclib to post menopausal women who have ER+ breast cancer that has advanced to metastatic disease after hormone tx failure.  I seem to be a perfect fit for this trial and she wanted me to know it is an option, however, it will take some Herculean effort to get through the application and acceptance process in a timely fashion.  My onc feels waiting 3 or more weeks to see if I am accepted by the trial is too high a risk and wants me to get my first treatment dose within the next two weeks.  If I get a single dose of Faslodex before applying for the trial I will be rejected.

    So, I will be getting the required bone scan and echocardiogram next week, plus the Her2neu path results should be in by then.  I will be signing releases for my current and old medical records, plus tissue samples from my recent bx to be sent to the trial researchers for review of my eligibility for the trial.  The difficulty will be pushing all the paperwork fast enough for me to get an acceptance to the trial and the first Faslodex + Palbociclib/Placebo injection within the next 2 weeks.  If the researchers can eliminate me as a trial candidate early in the process, then I will start just the Faslodex injections ASAP.

    So it is back to the "hurry up and wait" merry-go-round for now.  I trust that whatever is meant to be will be, so I will continue to make the best plans I can, yet know it is still always just one day at a time!

    I will keep you updated.

    P.S.  I suspect at some point very soon I will make my introductions to the Stage IV forum members.  I know I will benefit from the wealth of expertise and insight to be found there.  I still want to stay in close touch with my longtime Stage III friends and of course all my wonderful Lymphedema cohorts, but I think much of my future treatment related posts will eventually be relegated to the Stage IV forums unless I feel they will serve a purpose in the other communities.  I so appreciate everyone's concern and wonderful support and encourage those who desire to stay in closer touch to feel free to PM me or read directly from any of my Stage IV posts.  I will certainly still be posting on my usual forums as appropriate, it is just that I have concern for other member's sensitivities regarding the subject matter in their forums.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2014

    Linda, if the trial has a placebo then you only have a 50% chance of getting the new drug anyway, so I hope that is measured into the delay process. I can certainly understand your angst, but as you say, what will be will be. I will follow you in Stage IV if it's your thread, but hope to see updates so we know how well you are doing. You are still in my prayers, sweetie.

  • edwards750
    edwards750 Member Posts: 3,761
    edited March 2014

    Linda - you truly are an amazing person. You have so much on your plate but your first concern is the people who are dependent on you. That says so much about you as a person. I can't begin to understand what you are going through so all I can say is we are all praying for you. God has given you the courage and strength to endure a lot already; I am sure He is holding your hand through this critical situation too. Please keep the faith and keep us posted. Diane

  • Marple
    Marple Member Posts: 19,143
    edited March 2014

    Linda, warmest thoughts being sent your way.  I'm sorry about your dear Socks.

  • LindaLou53
    LindaLou53 Member Posts: 929
    edited March 2014

    Thanks barbe!  Actually in the PALOMA-3 trial, two thirds of the participants get the Palbociclib with Faslodex and only one third get the placebo with Faslodex.  This is a phase 3 trial and apparently results have been so positive in the earlier trials that they have increased the odds of patients getting the active drug.  Either way, even if I end up being in the one third on the placebo, I will still be getting just the Faslodex injection which is all my onc is planning to do at this time anyway.  I can leave the trial anytime and if I progress on their regimen they will remove me to pursue other treatments. The trial will offer the drugs for free, close monitoring and multiple types of testing for determining my status.  So I am hopeful to make the trial but also ready to accept whatever happens.

    Thanks for the prayers barbe and yes I will still keep you all updated!

  • leaf
    leaf Member Posts: 8,188
    edited March 2014

    My heart goes out to you, as you and your doctors fit your treatment choices together and as you take care of your loved ones.  Please know there are lots of virtual hands that are reaching out to you.  I do hope you can make the trial too!

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2014

    Okay, I'm a numbers person - I hear you Linda, but - half is 50%, and two thirds is 67%. That's only a 17% more chance that you'll get the new drug! The FREE part is great though and the constant monitoring is wonderful. I just don't want you to feel that you missed out on something if you don't get in the trial. I guess that's MY feelings I'm projecting on to you! I just desperately want you to get all that you can.

  • Holeinone
    Holeinone Member Posts: 2,478
    edited March 2014

    Linda, you are a rock of strength. Good luck with the trial, I would want to be on it. Thanks for being so open and supportive to us stage 3 ladies. 

    Sorry for the loss of your beloved pet....

  • Gitane
    Gitane Member Posts: 1,885
    edited March 2014

    LindaLou,  So many difficult events so close together...  sending you lots of warm hugs today.  In the midst of it all, to lose Socks, ... well that's just so hard.  I'm sorry.  The trial sounds like a good fit.  I agree with Barb, that getting in would be good but not to stress too much either way.  I know that the Stage IV members will be a great support.  We want the very best for you!  

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited April 2014

    lindalou I am sorry to hear your news. I stopped by you let you know that a Upj will cause flank pain. I had a UPJ and had it corrected back in 2009. 

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