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

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  • 20130502
    20130502 Member Posts: 220
    edited April 2014

    hi,

    I just wanted to tell you that I am in paloma3. I was also trying to move quickly.  I would have had my first trt less than two weeks after screening appt but they forgot to tell me to stop taking Femara so it got moved back two weeks and then weather issues moved it another two days.  All told I had first trt three and a half weeks after screening appt.  good luck to you. I will have my fingers crossed for you.  Today was cycle two day one for me.

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited April 2014

    TO: lintrollerderby and Jaimieh

    Thanks for the concerns about my flank pain and possible UPJ obstruction.  It turns out that the low back and flank pain I experienced for 3 days following my surgical biopsy was due to what the surgeon called "Sux-Myalgia".  Apparently one of the anesthetics I was given was Succinylcholine which has a long history of causing muscle pains/myalgias during the postop period.  I took motrin for 3 days and the symptoms went away.  It is true though that my CT scan revealed concerns of a possible UPJ and renal pelvis enlargement.

    I had a kidney stone years ago in the left kidney so have experience with renal related flank pain, but currently have not had any symptoms to indicate a renal problem on the right.  I still had my CT scan reviewed by a nephrologist who compared my recent CT with several earlier CTs over the years.  It turns out that on the right side I have a congenital extrarenal pelvis which just means my right kidney pelvis is unusually large and extends out from the normal kidney structure. This is often misinterpreted on scans as hydronephrosis or enlarged pelvis.  The nephrologist also believes that since my creatinine levels are normal, there is currently no kidney damage going on, so given my new dx of widespread lymphadenopathy he believes there may be some enlarged nodes starting to put pressure on the ureter.  He feels that treating the cancer should correct that issue, but if my creatinine levels do elevate above normal he says I should have a stent placed in the ureter to prevent additional renal problems.

    There is so much to try to keep track of and get myself educated about!  I am making progress with my screening for the Paloma-3 clinical trial.  I had bloodwork, triplecate ECG, total body bone scan and echocardiogram done in the last 3 days. We are waiting on additional pathology from my neck node and will repeat a CT scan of chest/abd/pelvis next week.  I am hopeful we can complete the trial registration by end of next week, in which case they will start my treatment protocol the following Monday or Tuesday.

    A bit of good news:  I don't have the final report yet, but the research nurse informed me yesterday that the preliminary read on my bone scan shows no evidence of bone mets!!  So unless told otherwise, it appears I am dealing strictly with significant nodal progression at the moment.  There are still questions about a possible enlarging adrenal mass but the CT scan next week may provide more detail on that.

    Thanks again all, for the ongoing concerns and support!

    Linda

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

    Wow! A TON of news Linda!! It looks like you are being checked out fabulously and how great to know that the current issue is the only one you may be dealing with. Prayers still going out to you for further tests to be done, but you must feel a tiny bit better....no? You are SO close to getting into that trial!

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

    Linda, how encouraging--taking a few minutes here to appreciate this bit of better news, and to look forward to even more. You've been in a whirlwind of tests and information-gathering, for sure. Rest up!

    Hugs, prayers,
    Binney

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited April 2014

    Hi  20130502

    It is good to hear from someone else on the trial! If all goes well I should be starting my Cycle 1, Day 1 on Monday April 14th.  I just discovered the Paloma-3 thread on the Stage IV forums so maybe we can compare notes there after I get started.  I hope you get good results and very few side effects on the trial!

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited April 2014

    I just returned home from my onc appointment. I am now officially
    enrolled in the Paloma-3 trial! I received my first injections of
    Faslodex and took my first oral study pill (either Palbociclib or
    Placebo). The shots were not bad at all, time will tell if soreness/SE's develop later.  I am just glad a treatment plan is
    finally in place!

    I had a repeat CT of Neck, Chest, Abd and Pelvis last Wed.  Good news is not much change noted in the nodes or adrenal nodule since my scan one month ago.  Still watching the kidney area, latest CT now indicates "renal cysts" for the first time.  The neck scan did confirm several "shotty" nodes less than 1cm in size up and down the lymph chains in my neck and supraclavicular areas.  The CT continues to see sclerotic lesions in my lumbar spine and right iliac bone, but my onc says the Bone Scan shows no increased uptake or "hot" spots so she is not too concerned about bone at this point.

    So for now I am just happy the news is relatively good considering all the possibilities and am hopeful this new treatment will be effective.  No matter the eventual outcome.....it is still just one day at a time! 

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

    Linda, excellent news about the study! Prayers continue for a thorough-going response to treatment, and only very manageable side effects. Rest up and be well!

    Gentle hugs,
    Binney

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited April 2014

    Thanks Binney!  I so appreciate your good thoughts and prayers!

    Grateful,

    Linda

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

    Sounds very optimistic all around LindaLou!!! You couldn't have wished for better!

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

    Thank you for updating us and I hope the treatments prove successful.

    So great you were accepted into the trial.

    Thinking of you daily.

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited April 2014

    Thanks Barbe and Wally!  Yes I am very happy I got into the trial and while I am only 3 days into treatment, I feel fine with no obvious SE's so far.  I appreciate the ongoing encouragement and well wishes from everyone!

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited May 2014

    Wow Linda,

    You are an amazing person!  Going through all this and still staying so positive.  I love it!  But I am super sorry this beast has reared it's ugly head again.  Don't be a stranger here, you can still post and keep us updated.  We want to know how you are doing!!!

    Love,

    Sharon

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited May 2014

    Thanks Sharon!  

    I am now on day 22 of my clinical trial. I go back for my 3rd set of
    Faslodex injections next Monday, pickup a new bottle of study pills, see

    my onc and get bloodwork drawn. I should have my first set of 8 week
    scans sometime early-mid June. So far the SE's have been very minimal.
    A brief period of fatique/weakness after the second set of shots but
    otherwise the treatment schedule has been very doable! I will
    definitely post back here again with an update after getting my scan
    results. Life is keeping me busy as usual but I'm not complaining!

    Thanks for everyone's concern and positive thoughts!  

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

    Hey, hey, LindaLou! You sound so good, and I'm thrilled to hear it. Keep on! And keep us posted…
    Binney

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  • Erica3681
    Erica3681 Member Posts: 1,916
    edited May 2014

    Hi LindaLou,

    So glad to hear you're doing well. I've been thinking of you!

    Barbara

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  • MameMe
    MameMe Member Posts: 425
    edited May 2014

    Hi Linda, I read your situation with great interest, and feel for the situation you are in. Caring for others who have needs and wants they can't fill for themselves AND being an RN AND facing. an uptick in treatments and  dx, well, that is a hell of a load! I hope so much that you can surrender some of the obligations to others and place your self front and center. Your vitality is contagious! Best wishes to you. Mame

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

    Glad to know it's all working out...

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  • Jandb
    Jandb Member Posts: 1
    edited August 2014

    I had breast cancer in 1995, chemo for 6 months. Was on tamoxifen for 5 yrs and then Femara for another five. I had a mastectomy with 22 nodes taken with my right breast. Last April, 2013. Cancer came back in my left breast. Now I am waiting for surgery to put expander in both sides, my left breast was removed,  and in some months implants. Bless all of you!

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited August 2014

    Janb, I wish you a quick recovery from your surgeries and great success beating the cancer!  It is a tough journey but sounds like you are staying on top of things!  :)

    UPDATE:  I guess I am long overdue providing an update on this forum to all my friends!  Actually, I don't think things could be going much better for me right now.  Today was Day 1 of my 5th - 28 day cycle in the clinical trial taking Faslodex injections and the Palbociclib/Placebo study drug.  I had my first set of 8 week scans back in early June.  I get CT scans with contrast of the soft tissue of my Neck, Chest, Abdomen and Pelvis every 8 weeks.  My first set of scans after being in treatment for 2 months, revealed a 33% reduction in size of the 3 targeted nodes being tracked by the research MD.  I had what is considered a very good early partial response to treatment.  I just had my second set of 8 week scans last Wed and do not yet have the research measurement data for the target nodes, but the general CT results were good!  No signs of progression of disease, no new areas of disease, all known areas are stable or no change noted by the general radiologists.  I am very happy to see that the cancer activity seems to be stabilized for now.  Hopefully, there may be more reduction seen once the final measurements are done by the research MD.

    The side effects of this treatment modality are minimal and very tolerable.  Some fatigue, occasional itchy skin from the shots, changes in lab values that impact the immune system, a little more trouble getting restful sleep, but in my case those changes have been mild.  My scans do indicate that I have had bilateral hydronephrosis of the kidneys for several months now.  I have no symptoms and kidney lab values (BUN, Creatinine, eGFR)  are all normal, but I may be pursuing a second opinion regarding at what point does chronic hydronephrosis present the possibility of permanent kidney damage?

    Life is busy as usual, summer is here and hot in the Midwest.  I am still busy with my obligations to my husband, father and sister who depend on me a fair amount of the time, but I also have moments to enjoy my quilting hobby and gathering with my local friends!  As always, life is moment to moment...making the most of it when I can but really just struggling as we all do to keep things in balance!  Not much has changed really, other than several more medical appointments on my calendar and trying to keep up to date with the latest research news!   

    I hope to provide good updates here every couple of months!  Thanks to all my BCO friends for all their good wishes and prayers!!  

    Linda  Smile

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  • dltnhm
    dltnhm Member Posts: 873
    edited August 2014

    Glad and thankful to hear your good news of reduction, no progression, and stabilization. Praying that you continue to realize reduction on this trial, that your kidneys are not harmed, and that your side-effects are minimal. 

    Blessings, 

    Diana

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

    LindaLou it all sounds good except your kidney. That is a LOT of dye being injected every 8 weeks. Do they do creatine levels each time? Glad to know it has been doable as of course no one knew the side-effects. Keep on enjoying the summer and taking time for YOU. With love,

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  • Erica3681
    Erica3681 Member Posts: 1,916
    edited August 2014

    LindaLou,

    I'm so glad that things have been going well for you, and that the side effects from treatment have been minimal. I'm especially impressed by your capacity to take life as it comes and enjoy the moment, something I strive for (not always successfully). 

    Thanks for updating us!

    Barbara

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited August 2014

    Thanks Diana, Barbe and Erica!  I just got an email this morning from my research nurse and the final tumor measurements show an additional 6% reduction in the most recent scans.  So I am now at 39% reduction in the targeted lymph node sizes since start of treatment 4 months ago! 

     Smile

    P.S.  Yes Barbe I have Creatinine, BUN, eGFR,  Liver labs, chem profile etc. etc. every 28 days as part of the trial protocol.  I am still going to have a consultation visit with a nephrology specialist this month.

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  • Momine
    Momine Member Posts: 7,859
    edited August 2014

    Linda, thanks so much for the update. I have been thinking of you.

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited August 2014

    Dear Linda,

    I have been absent from BC.org for months, and I just found out about your "new" diagnosis. I must add to the words of others how helpful you have been to me, particularly in learning about and treating my very mildest of LE. I am one who has wavered between foobs and flat, and your sage words and wonderful pictures were also of great value to me. You will be much in my thoughts as you go through this new phase. My own diagnosis came in April 2006, and I am again reminded not to take for granted every good day I have!  I do hope the treatment results continue to be so good!

    Dawn

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

    Linda, it's so nice to hear from you and to hear the news is encouraging. 

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  • miso
    miso Member Posts: 14
    edited August 2014


    Linda - I am an infrequent visitor here nowadays but wanted to write and say hello. Your amazing flat photos and words of wisdom made the most enormous impact on me when I was first dx-ed and I will be forever grateful to you for helping me to navigate my way through that minefield!

    I am so sorry to hear you are now having to face more treatment - but it is great news about ongoing reduction. Keep it up!

    Very best wishes to you from England.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited September 2014

    Update on me-my PET scan showed a marked decrease in the nodes after 5 tx of Kadcyla.

    Sure hope that it continues!

    Denise

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

    Denise, that is wonderful news!!!

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  • funthing42
    funthing42 Member Posts: 418
    edited December 2014

    Hi

    I need hope.

    I have had breast Ca 3 x. Stage 1 less than 1 cm both times. Estrogen+ progesterone- her 2-.

    I was told her2 + Estrogen+ but Im currently on herceptin

    Chemotherapy also completed July this year.

    Only 2 mos after its back, Now in the skin where breast once was.

    Is this a sure death sentence?

    I was told it's 1 yr 5 yr 10 yr maybe before it reoccurs in other organs.

    Then chemo again...........? Then a few months then death. ??????

    I need hope.

    They suggest more radiation now.

    Please I just visited a Doc who stole my hope and courage.





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