Stage 4 Fitness 2016

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  • PHOTOGIRL-62
    PHOTOGIRL-62 Member Posts: 285
    edited December 2016

    Good Luck on your scans <Z>, I'm thinking of you!!! Always stressful. Hoping for good results.

    Anita

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  • MSL
    MSL Member Posts: 101
    edited December 2016

    Hey all!

    Hope everyone doing well.

    I'm now feeling good jogging 5 miles a day and walking whenever I can. Joints a bit sore from the Femara but otherwise can't complain.

    Am going to add in some push ups and sit ups after Christmas when I'll have hit post 4 weeks from the ooph.

    Best to all xxx

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  • Iwrite
    Iwrite Member Posts: 870
    edited December 2016

    Z- Hope you are feeling better and that your scans show stability with NEAD.

    MSL- Good job running so regularly! Femara makes you pay, but it's worth it. So glad your strength is returning after surgery!

    Walked two miles and did yoga today...first exercise since surgery. I'm eager to get approved for more at my post op check up Tuesday.

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  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    MSL - Holy cow. I dream of 5 miles. Did 2.5 miles this morning, slowly. Skiing Saturday. jogged 2 miles and some weights Friday. Not a lot of exercise but consistent. doing okay. For those of you tracking me, my Fitbit won't hold power. Giving it one more shot to charge tonight and then I get a new one.

    Scan results tomorrow. Thank you all for keeping me in your thoughts.

    >Z<

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  • Wendy3
    Wendy3 Member Posts: 1,012
    edited December 2016

    Good luck on your scans Z I'm thinking of you sending good vibes

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  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    scan results were completed on thursday pm. it's taken the medical records department 2 days to fax it to me !?!

    waiting by fax machine ...

    >Z<

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  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    Scan shows progression in liver and breast and lymph nodes. Just finished my 11th cycle of Ibrance/letrozol, but progression probably started a couple of cycles ago. I had no evidence of metastatic disease in July, now I have multiple small hepatic lesions with at least a couple ~2cm. Most lymph nodes impacted. Mass in breast is 2.5cm x 4 cm, was .6cm by 2.5cm. Meeting with oncologist in an hour.

    Breathing ...

    >Z<

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  • MSL
    MSL Member Posts: 101
    edited December 2016

    Dearest Z

    Remember, this is a marathon not a sprint and you and your onc will work out what to do from the many, many options available. Your spirit and strength will, as always, shine.

    I read on one of these posts (the name escapes me but it was someone who achieved longevity) that she had learnt not to get too excited about the good scans or too down about the not so good ones because of the many swings and roundabouts on this journey.

    We are all with you. Let us know how you go with the onc.

    Loads of love xxxx

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  • PHOTOGIRL-62
    PHOTOGIRL-62 Member Posts: 285
    edited December 2016

    Dear <Z>,

    I'm praying for you to get a good second opinion. Sorry you have to deal with this progression, but I'm sure there are other treatments to knock this back. We are all with you!!! Lots of hugs to you. Please keep us posted on what your MO has to say and what the new plan will be. Thinking of you always!

    ((HUGS))

    Anita

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  • Iwrite
    Iwrite Member Posts: 870
    edited December 2016

    Z- Not the news we want for you!! (Insert bad words here). It may explain why you have been tired. You and your doc will have a plan to bring it back to stable!! Hang in there! You are here. You are strong. You are loved.

    Sending hugs!!

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  • mara51506
    mara51506 Member Posts: 5,088
    edited December 2016

    Z, I too am very sorry to hear of your progression. Although I know that there will be another treatment plan, I am aware that progression brings up all the fear to where it is fresh again. I do agree with lwrite, it could possibly explain some of your fatigue etc. I know there will be another plan for you. May it also be easier with the side effects and beat back stupid effing cancer for you. I am sending every good bit of energy I have as well. I hope it will help you.

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  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    Gathering medical records for second opinions, trying to organize a biopsy and generally dealing with things. Going to get some ALA and Vitamin C IV's while I sort out the plan. Probably not a lot of exercise the next 3 days while I get this all done. However I will be hiking in Utah for 11 days starting Friday so y'all better get moving if you intend to keep up.

    A little shock, a little panic but dealing. My cats are taking it in stride so I suppose I can too.

    Thank you all for being there.

    Fitbit completely dead. Ordered another.

    >Z<

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  • DGHoff
    DGHoff Member Posts: 624
    edited December 2016

    Oh Z, I'm sorry about the scan results. I think "trying to figure out the next step" is the one of the worst parts because everything seems so out of our control in those moments. But, remember how strong you truly are. You inspire all of us every day. Honestly. I only worked out tonight because I figured I needed to try and keep up with you on the Fitbit! Sounds like I will have to work extra hard with your hiking trip coming up. Utah sounds wonderful, and I'm glad you have that to look forward to.

    Scans for me tomorrow morning. Trying to keep scanxiety to a minimum.

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  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    DGHoff - Crossing fingers for good scans for you, but whatever happens we'll figure it out ... now back to clinicaltrials.gov. Interesting stuff ...

    >Z<

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  • lulubee
    lulubee Member Posts: 1,493
    edited December 2016

    Z, hang in there, friend. It all looks like a big mess right now but this turn in the road might be leading you toward something a whole lot better.


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  • Heidihill
    Heidihill Member Posts: 5,476
    edited December 2016

    Ugh. Really to sorry to hear about progression, Z. But glad you are dealing, doing what you have to do. I would keep my eye on trials with Steven Rosenberg at the NCI, this could be your "whole lot better." Keeping you in my thoughts. Send pics from Utah.

    DGHoff, sending strong zen vibes to you.

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  • catsteme
    catsteme Member Posts: 48
    edited December 2016

    Hi Z - really sorry to hear about your progression. This is a horrible disease - you're doing everything right, yet it still tries to knock you over. I'm thinking of you and feel sure that you'll get the upper hand again really soon.

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  • Wendy3
    Wendy3 Member Posts: 1,012
    edited December 2016

    Z I'm so sorry you have to go through this crap. But Lulubee is so right something better is around the corner. The worst thing about this disease is this constant fear it is horrible beyond words. Even when it's good we worry for how long will it remain so....I know I will also be hearing these words in my future it's the nature of the disease. We fight it back down and it tries to sneak back and we then fight it some more.

    Better medication is on the horizon so we must continue our fight. We are warriors of the strongest kind. You said something yesterday Z that stuck with me " this will not be what kills me" I feel the same way. We continue ,we fight , we support each other and we compare notes with what works to better our lives.

    Right now sucks ,but that's just right now it will get better and you will heal. Hug your cats they know what's right😊


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  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    Well folks, UNM hospital faxed me the wrong PET/CT report. They sent my report from when I was originally diagnosed in January 2016, not last week. I was too stressed to notice the date was wrong. So waiting for results...

    OMG. Scan Anxiety turns me into a mental vegetable.

    >Z<

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  • MSL
    MSL Member Posts: 101
    edited December 2016

    OMG. That is just extraordinary. What an appalling mistake for them to make. Please let us know the actual results when you get them. Praying for you xxxxxx


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  • Mel26
    Mel26 Member Posts: 67
    edited December 2016

    Z- this is hopeful news! I will be anxiously waiting to hear what the correct results are. My recent PET from earlier this month showed significant reduction in the liver mets and stable bones since I started the Ibrance/ Faslodex combo. I wish the same for you or better!

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  • mara51506
    mara51506 Member Posts: 5,088
    edited December 2016

    Everything crossed for the new report. OMG, that mistake is horrifying.

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  • lulubee
    lulubee Member Posts: 1,493
    edited December 2016

    Z!!! For the love of all that's good and holy. Who bungles stuff like this? With cancer patients?? At Christmas???

    (Deep breath... we can be sure it was not intentional... God help the poor soul who accidentally did this awful, stupid thing to you...)

    But golly is that BETTER PET REPORT going to seem even sweeter when you finally see it. Like it fell from Santa's sleigh or the wings of angels. (As you can see, I am positive it will be better, Z!)

    Waiting to exhale right along with you.

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  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    Thank you all. Mel I am so glad you got a stellar report.

    So many people waiting for scan results ... hoping we all do great.

    Waiting for fax, again.

    >Z<

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  • PHOTOGIRL-62
    PHOTOGIRL-62 Member Posts: 285
    edited December 2016

    <Z> I am shocked that this would happen to you. I have been thinking about you all day! Please let us all know how the right scan turns out. I'm hoping for the best for you. Thinking of you and all of the ladies waiting for results from scans. We all have enough stress dealing with this, but this is over the top! Hoping for much better news so you can enjoy your trip!

    Anita

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  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    I have the current, correct report. I am stable. YAAAAAAHOOOOO! Thank you for your support as I go through this emotional whiplash. In the end, I am doing well. I wanted to be NED, but stable is good.

    The only thing that increased since the last PET scan was one paratracheal lymph node which was .9cm x .6cm and is now 1x1cm. Not really actually bigger given the error in these scans... but it is the only thing that is measurably hypermetabolic at 3.6 SUV. These lymph nodes in my chest have been popping up and disappearing in these reports all along. I want to call them inflammation and ignore them. I was wondering if anyone else had this going on.

    I alternate between PET/CT scans and regular CT scans. The current PET/CT is not directly comparable with my CT from July. My last CT scan showed no evidence of metastatic disease. The PET/CT from last week finds a bunch of little stuff in my liver, lymphatic system and bones. But MO and I agree these findings only demonstrate the difference in sensitivity between the PET/CT and the regular CT. It is interesting to alternate scan types and facilities just to get a sense of the variability in sensitivity and reporting.

    Got to the gym twice this week despite the drama. Ran 2-3 miles and did some weights and yoga. Yay me.

    >Z<

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  • Iwrite
    Iwrite Member Posts: 870
    edited December 2016

    Zarovka,

    Yay!!!! Merry Christmas!!

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  • Apg
    Apg Member Posts: 119
    edited December 2016

    Zarovka, I have been reading all the comments and I am so happy for you. I am new to this but I have been thinking of you lots. Now you can relax and enjoy Christmas!!! That is awesome!!!

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  • zarovka
    zarovka Member Posts: 3,607
    edited December 2016

    Apg, Kathryn - thanks. Scans are a nightmare. Healing thoughts to everyone going through their end of year scans.

    >Z<

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  • DGHoff
    DGHoff Member Posts: 624
    edited December 2016

    Z- I am aghast that they could mess it up like that, but I am ecstatic that everything is stable!! Hooray! I am so relieved for you!

    I haven't seen my onc yet (see her tomorrow) but I did get my CT scan report sent to my online chart so I was able to read it. Everything appears to be stable - no changes. I wanted a decrease, but I'll take stable any day over the alternative.

    I finally got outside today for a 30 minute walk since the weather warmed up here in the north. It felt good to walk outside, and I have a set of stairs near my house that I went up and down three times. It's 45 steps up. Hard work! I also did some sun salutations. It's common in the yoga tradition to do 108 sun salutations on the solstice. I didn't do that many. I did 18 which I figured was plenty close since it has a 1 and an 8 in it!

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