Androgen Receptor Testing & Treatment

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited October 2015

    (((hope))) thank you for your post and your honesty and wisdom. Prayers for strength and peace.

    Kristin

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2015

    Hope,

    Just popping in to add my goo thoughts for you. I love what you wrote about not wasting too much time on cancer. You have my greatest admiration.

    Caryn

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  • steelrose
    steelrose Member Posts: 3,798
    edited October 2015

    Hi Hope…

    I've been silently following this thread, hoping for word from you. So happy that you posted… you and your family are definitely in my thoughts and prayers…

    Rose.

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  • Max_otto
    Max_otto Member Posts: 150
    edited October 2015

    Hope,

    Ive truly been inspired by your posts, you express youself beautifully. I hope there are more good times to come for you and your family.

    Peace,

    Kathy

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  • nancyh
    nancyh Member Posts: 2,644
    edited October 2015

    Hope - I've also been following this thread silently. So great to hear from you, sending best wishes to you and your family.

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited October 2015

    Praying the treatment break gives you some energy back as well as some answers. Thinking of you.

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  • Romansma
    Romansma Member Posts: 1,515
    edited October 2015

    Just checking in. Thank you for all the well wishes, you are all so appreciated. I stopped treatment yesterday and now we start the process of sorting things out. I want to mention that my tumor markers have not increased over the past 2 months, so I suspect that Xtandi is probably doing something to help. I suspect that it is having a stabilizing effect on the out of control bone disease I had been experiencing for a good part of this year. However, I think things are popping up in other areas such as the other side of my neck (I have a marble size node enlarged on the right sight side now, in addition to the left), my scalp, and whatever is going on with my GI tract and the fluid. The original reason for me starting this thread was to share Xtandi as a possible treatment option. I am still hopeful that it is a good option. I just need to be able to sort cancer from side effects and since I have been through so many other treatments and my cancer has progressed as much as it has, it has been hard to sort out. My fear is that someone reading this may not consider Xtandi based on my experience so far and that would make me sad. I don't know that any of this was the medicine at this point. I do intend to figure it out, though, and report back so that anyone else considering this has information that might help them move forward.

    Hope everyone has a great day

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  • usafmom
    usafmom Member Posts: 778
    edited October 2015

    You are so encouraging Hope to so many. ive found over the years most of us have such differing SE on each treatment. Especially those of us that have been on so many chemos. I myself have been five years now pretty nonstop. I'm still very hopeful this is a treatment I will try in the next. I've met two other ladies at Siteman that are also trying to get into the trial, once they change the verbiage up on the paperwork. We are all so hopeful for this trial to work.

    Your in my thoughts and prayers. I hope you and your doctors can get you feeling better. It is very unnerving when things get out of control. My prayer is you can have some good quality time with your family over these weeks your resting.

    Hugs Kimber

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited October 2015

    Hope thank you for your update - good to hear from you as always. I'm glad your TMs have been stable on Xtandi and I hope this break will give you all the answers. You are always so thoughtful and sensitive to others. You are quite a lady. Enjoy your break with your loved ones and you are loved by this community.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited October 2015

    Hope - good to see you checking in - you give strength to so many of us on so many treatments - you have documented them all so thoroughly and made many of us less fearful of trying new ones. Wish you some good rest and relaxing times with your family - keep in touch. Love, S.

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  • steelrose
    steelrose Member Posts: 3,798
    edited October 2015

    Hope!

    You're a trailblazer in these parts, and I'm very grateful for your documentation of these new drugs. I'm still in line for Ibrance, and I've learned so much from reading your thread on that. I hope that you will finally get some answers as to what is causing your fatigue. Wishing you a peaceful, relaxing autumn with your family.

    Love to you...

    Rose.

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  • jobur
    jobur Member Posts: 726
    edited October 2015

    Hope,

    So good to hear from you! Hope your break will allow you to get things figured out and under control. Also have my fingers crossed that those TMs are a good indication that Xtandi put the breaks on any progression. You are something else, worrying that someone might not try Xtandi due to your experience. Hope the break gets you back on your feet and back to a little more "normal" living.

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  • Hummingbird4
    Hummingbird4 Member Posts: 331
    edited October 2015

    HI Hope! Glad you posted. I want to send best wishes that your break from treatment will clear up the questions and concerns and allow you to feel better and enjoy your family. It's a beautiful time of the year and I'm hoping you get the strength now to get out again.

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  • oriole
    oriole Member Posts: 72
    edited October 2015

    Hope, here's wishing that you get to enjoy the beautiful October weather in Ventura with your family! Thanks for the post and keeping us so well informed. You continue to keep helping and inspiring so many of us!

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited October 2015

    hope - praying this new tx is exactly what you need to kill tise dang cancer cells. Did you say you were stooping tx ????

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  • pearlady
    pearlady Member Posts: 882
    edited October 2015

    Hope praying for you as always. Thank you so much for checking in. Hoping that your break from treatment provides you the answers you are looking for and allows you time to gather strength for the next treatment. Please continue to check in.

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  • Romansma
    Romansma Member Posts: 1,515
    edited October 2015

    Good morning! Good to hear from you Patty. How have you been? I think I heard you had another stay in the hospital. I hope you are feeling stronger.

    I stopped treatment as of Wednesday of last week. Not sure if this will be a break or a termination. I need to see how I feel and how my labs and scans look. It hasn't been quite a week and I can't say I feel much different. I think I've gained a little bit of my appetite back. I have lost about 12-14 lbs since starting Xtandi. Not terrible since I'm not ultra thin to start with. But, I don't want to lose a lot more. I slept all day yesterday. I was nauseated a good part of yesterday and definitely the day before. I vomited in the car (tmi, sorry) but I had a bag! Low grade fever is still there in the evenings. Still have muscle weakness. I am hoping it just takes a little time, but it is possible none of this is the Xtandi. Time will tell. I am hoping for a less sleepy day today and of course, much lessnausea!

    Hang in there. I know many of you are dealing with so much more. I wish you a very good, sunshiny day!

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited October 2015

    Hello Hope - Sorry you're still feeling lousy but I wonder how long Xtandi stays in the system. Praying your labs and scans give good results and answers. Always love to hear from you. Hugs

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited October 2015

    Hope, thank you for finding the time and strength to provide an update. I know this is hard - feeling tired, weak, and queasy. Hopefully as time goes by you will regain energy and shake off the nausea. Please know we're here with you and hope that each day will be better than the one preceding it!

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  • Hummingbird4
    Hummingbird4 Member Posts: 331
    edited October 2015

    Hi Hope. I think Xtandi must stay in the system for a while. I had to be off it for a full month before starting on my next trial drugs. And that horrible fatigue lasted longer than that month off! That's for sure! I actually gained a little weight on the Xtandi - I was on it for 8 months. My appetite was good and I had no nausea at all. I remember the clinical trial nurse, though, being concerned all the time about me losing my appetite so that must be a common se. But as you say, you don't know yet what's actually a result of the Xtandi until you are off it longer.

    I am hoping that each day now brings youmore energy and strength and that you see improvement in your labs and scans. Please update whenever you feel up to it. We'll be thinkIng of you.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited October 2015

    Hope, so glad to see your posts despite the fact that you are feeling so poorly right now. I hope the break is just what you need to sort things out and you get some lovely days with your family. All of you ladies are wonderful.....

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  • Romansma
    Romansma Member Posts: 1,515
    edited October 2015

    I had an appointment today to check in with my MO and go over labs since stopping Xtandi. Good news is that my tumor markers are hanging tough. After so many months of increasing markers, I've had 3 straight months of stable numbers and I have to give credit to Xtandi for that

    Bad news is that my blood counts are falling, a lot. Mostly red, down in the 7s. I need to go in again next week to repeat labs and if they fall anymore it's transfusion time. They have been low, but weird that they would fall so much after stopping treatment. It could be the heavy marrow involvement I have, or there could be some kind of bleeding. May need an endoscopy too. It would explain awful tiredness right now, but not really when my red was in the high 9s just 2 weeks ago.

    Anyway, time will tell. Having this disease as long as I have has made me so much more patient. I do think, if we can figure out what is going on, I will be interested in going back on Xtandi. At least that's how I feel right now. My oncologist is very antsy for me to move to chemo, but I'm just not feeling it, ya know?

    Have a great night. Going to try to keep my eyes open to watch a little of the World Series, but I doubt I will see much.


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  • artistatheart
    artistatheart Member Posts: 2,176
    edited October 2015

    Hope, take all the good news you can get. We are all pulling for you to get this all resolved. Have a restful break and we'll keep our fingers crossed that it helps those blood counts. I don't blame you at all for not wanting the chemo right now, you need a big break.

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited October 2015

    Hi Hope - good to hear about TMs and that things are moving! You're right, we become more patient as time goes by. I wish you the very best with what ever tx you choose. Didn't you mention you were waiting for scan results as well?

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  • 208sandy
    208sandy Member Posts: 2,610
    edited October 2015

    Hope - good news about the TMs and I think the transfusion will make you feel much better even for a short while so you can enjoy some good times with the family. Certainly understand that you don't want to do chemo. Keeping "everything" crossed for you. S.

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited October 2015

    I hope that the blood problem gets figured out and that you can go back on Xtandi.

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  • oriole
    oriole Member Posts: 72
    edited October 2015

    Hi Hope,

    I drove down our beautiful state again yesterday and I thought of you in Ventura. The vineyards around Paso Robles were just beautiful in the morning light! Are you getting the wind today? Anyway, I am happy that your TMs are the same and that your team is figuring out what is going on with your tiredness. You are so wise ... I have been thinking that I need to learn how to be more patient with all aspects of this disease ... Thank you so much for keeping us posted! Wishing you and your family a wonderful fall weekend!

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited October 2015

    Wonderful to hear that the TMs are dropping! For rbcs, eat some grass-fed red meat, red beets, deep greens, and chlorophyll tablets.

    As you're aware, anemia can cause fatigue, so once your rbc's begin getting better, your energy will, too!

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  • Romansma
    Romansma Member Posts: 1,515
    edited November 2015

    Getting 2 bags of red today. Hoping to feel better instantly

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited November 2015

    YAY for the red today! You should feel a whole lot better. Hugs

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