Androgen Receptor Testing & Treatment

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  • jobur
    jobur Member Posts: 726
    edited October 2015

    (((Hope))))

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  • usafmom
    usafmom Member Posts: 778
    edited October 2015

    Continued payers for you and your family

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  • Woodylb
    Woodylb Member Posts: 1,454
    edited October 2015



    Hope , you are in my thoughts and prayers , you and your family.

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  • Jaxzgirl
    Jaxzgirl Member Posts: 14
    edited October 2015

    Hi. My name is Mary. I'm not sure where you live, but I know that Stitesman Cancer center in St. Louis Missouri has a clinical trial for the AR+ ,Hers2+ tumors.

    I am praying that the company will give me an exception to participate in the study. One of the qualifying factors is that you can't have any active viruses. Unfortunately, I have HIV. Had it for 30+ years...been controlled and undetectable for the past 15 years.

    It's been a little over a year since I found a lump and was diagnosed with stage 4 ..mets to lungs,skull and sternum. Had a mastectomy... MANY MANY different chemotherapy drugs. Unfortunately nothing is working to stop the cancer's growth. Which is why I went to Stitesman to see about a clinical trial.

    This cancer is Hers2+...they're testing my biopsy for the AR+. My original tumor in my breast was triple negative.

    I'm starting to have breathing issues. I have an almost constant bronchial itch,which makes me need to cough. Coughing makes me feel like I have been shot in the chest with a jagged concrete block.

    Nothing phases the pain. Prayer,Oxycodone,flexeril,skelaxin,tramadol,Tylenol.... I'm taking them all. Using a nebulizer with Duoneb when I feel too itchy and wheezy.

    I'm bound and determined to make this cancer in to a chronic, yet manageable disease. It's just being a tad stubborn.

    Any ideas for pain relief?


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  • usafmom
    usafmom Member Posts: 778
    edited October 2015

    Hi Mary...I too go to Siteman. I've been trying to get on the study there as well but have had issues with a clause in the trial paperwork saying I can't drive while on the drug. I'm really sorry the are not letting you in the trial because of your HIV status. I really do hope they will let you have it under compassionate care. I'm still considering this drug for the future but going back on a previous chemo for a few months while the Drs hash out the paperwork.

    For pain maybe try a fentanyl patch. One of the biggest issues with pain Meds is keeping a consistent level that will work with your pain level. The patches will help with that or a combo of a coule drugs. I've personally moved on to an intrathecal pain pump. This is a giant step I know but it delivers a constant very low dose of pain Meds continually to me. The dosing is so low it won't mess with bowls or make you sleepy foggy headed. Because it goes directly into your spinal cord it feels like your getting a lot but your not. I rarely have pain anymore and if I do I have the ability to give myself a bolus dose of Meds several times a day. It gets refilled every 2-3 months and was a fairly simple surgery to install. Medtronics makes my pump if you'd like to research it but I'd firsthand foremost see a pain Doctor. All to often your oncologist will try to handle everything for you but it really isn't their expertise. Good luck and I hope you can get the pharmaceutical house to give you the drug under compassionate care. Good luck

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  • usafmom
    usafmom Member Posts: 778
    edited October 2015

    Thinking of you and praying Hope

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

    Hope, just letting you know that we are thinking of you and sending good energy and healing wishes you way. You are deeply missed, and we hope to see your posts again soon!

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  • Woodylb
    Woodylb Member Posts: 1,454
    edited October 2015



    Hope , i second Bestbird , you are truly missed here , we are thinking of you and sending you prayers and healing wishes. I hope we see your posts here soon.

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

    Romansma/Hope logged in on 3 Oct the last time. I checked our Central Address Book and her personal info is not there. She's also on caringbridge.org and no update there either. I hope and pray she's OK. Does anybody have info on how to reach her?

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

    Hope, Yeah me too! I decided to look on this thread because I knew that Linda was concerned about you a few days a ago and I thought you might be on here. I pray that things improve for you soon.

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

    Good morning to the many sweet souls here. I am so sorry to have worried anyone. I have not had the energy to do just about everything. The fatigue and weakness has really taken me down. My Oncologist has been a bit worried too and we decided yesterday to stop treatment early next week. Depending on how it goes, I may try to restart treatment later in November. We are hoping to sort out side effects from cancer effects. Hunting for the problems with tests, labs, and scans has not been fruitful. Lobular can be so hard to detect and it tends to go to strange places. My last scan showed fluid in my pelvic area. We don't know what is causing this. I've had daily nausea, but that could be a side effect of the Xtandi or even all the pain meds. I've also had a lot of strange things on the left side of my head, which is where I had the biopsy that was positive, but didn't give me any new treatment options. I now have a scalp lesion that may need to be radiated. I really don't want anymore radiation, let alone a big bald spot on the side of my head. I'm tired, so tired of all of this. It brings me to tears, but I don't know how much longer I can do this. Thank you for all your concern. I guess I just needed to crawl into my cave for a while and hide out.



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  • Hummingbird4
    Hummingbird4 Member Posts: 331
    edited October 2015

    Hope. Thank you so much for finding the strength to post today. Even on the Ibrance thread, many ladies are praying for you and hoping to hear from you. We have all been very concerned. I'm sorry to hear that you have been in such a struggle to get answers to why you feel so ill. You are in my thoughts and prayers that your doctors will find out soon and decide on the best treatment plan for you. Don't give up, Hope! There has got to be something for you.

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  • Mel26
    Mel26 Member Posts: 67
    edited October 2015

    Dear Hope,

    You do not know me, but I have been following your posts ever since I started on this site earlier this year.

    You are always so kind and helpful to others, and people love you, and have missed you so.

    I am so sorry for all you are struggling with right now. I will continue to pray that a tolerable treatment comes your way, and you are able to regain your strength.

    Hugs,

    Melanie


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

    I can't improve on the last two posts, same feelings that have been stated and I will be praying also.

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  • Moissy
    Moissy Member Posts: 550
    edited October 2015

    Hope - Sending love from all of us in Ibranceland! Praying for wisdom for your docs to get this figured out.

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

    Hope - so glad you used your precious energy to post - I can well understand that you're just too tired to deal with anymore details but happy that you did. Is there anyone in your circle who could come here to post on your behalf? Anyway, sending positive thoughts and many hugs your way - we miss your spirit, good sense and positive attitude. Love, S.

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  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited October 2015

    Hope - sending you big hugs and love.

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  • usafmom
    usafmom Member Posts: 778
    edited October 2015

    Hope..so kind of you to update everyone. So many of the ladies have said what we all feel. I wish you peace in your decisions and quality time with your family. Sometimes a few weeks off from chemo really does help. We often can't remember how good..really does feel. I hope your oncologists can help keep you comfortable

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

    Hope, it was so good to see your post, and I think you are very wise to stop treatment for a bit in order to distinguish cancer-related effects from treatment-related issues. It took a mighty effort for you to write, and I am so grateful that you did. You continue to be in my thoughts and the recipient of my best wishes!

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  • Aoibheann
    Aoibheann Member Posts: 555
    edited October 2015

    Thinking of you, Hope. Sending you love and good wishes {{Hope}} hugs x

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  • oriole
    oriole Member Posts: 72
    edited October 2015

    Here's hoping that being off the treatment with lead to a rebound for you, Hope. Sending you lots and lots of positive thoughts and prayers (and to your loved one's too)!

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited October 2015

    Hope, I can hear a collective sigh of relief on the entire stage 4 thread. Seriously, its palpable how much you are loved here. I hope you can find some relief from feeling so ill soon.

    Stefanie



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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited October 2015

    You are entitled to crawl into your cave, Hope, if that is what you need to do. But thank you for posting; I have been checking every day. All good wishes to you as you and your doctors try to figure this out. I hesitate to make any suggestions, but I have heard that you can temporarily bring in palliative care and/or hospice services to help you and your family, and then you can send them away again. I just wanted to mention that in case it might help.

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  • sandilee
    sandilee Member Posts: 1,843
    edited October 2015

    Thanks so much for posting, Hope. It it great to hear from you, but I'm so sorry to hear that you are feeling so poorly and that you still don't have answers to what is causing the tremendous fatigue. What a frustrating and tiring situation. I hope the rest from treatment provides some answers and gives you some needed relief.

    Much love to you and your beautiful family. We are all rooting for you!

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

    Thank you so much for updating us Hope. As you can see, you are very much loved on these boards. Hoping this break will give you answers and energy back. You are always in my daily prayers.

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  • mdillard04
    mdillard04 Member Posts: 100
    edited October 2015

    So good to hear from you Hope! Your Ibrance family was quite worried about you!! I am too am sorry that you are going through such difficulties and pray things get better soon!! You are in my thoughts and prayers!!

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  • annieoakley
    annieoakley Member Posts: 870
    edited October 2015

    Hope, you're never far from my mind and I'm so glad you checked in but sorry you're still feeling unwell. I am praying for them to get to the bottom of what is causing this. You are loved by so many here! Sending healing hugs, Annie

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

    Thank you for all the wonderful wishes. I am looking forward to at least a small bit of good real soon, but if not, I have no regrets. I spent the last couple of years truly living and my family and I have so many memories from all the things we've done and just the moments we've shared. I really am hoping for more, but I guess it's a good reminder to those that are still feeling well. Don't waste too much time on cancer, your MO has it covered. Spend your time making memories with those you love before you get to tired and weak to do much. On that note, I'm outa gas for this day. You all have made my day!


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  • 3Holly
    3Holly Member Posts: 223
    edited October 2015

    Hope, thank you for posting - I know it took great effort, and it is so good to hear from you. I am hoping for more good times for you as well, you deserve many more. You've inspired everyone to go out and enjoy the good days we have - I even went out for an evening sail around Boston last weekend with our high school friends and our kids - wasn't sure I'd make it with my bones cracking, but was so glad I did. You have great courage, and I think you are making a wise decision and that you need a break from treatment. I have been agonizing and delaying the decision to go to another chemo and do not intend to stay with the Xeloda if the SE's get too difficult since I want more time, but only if it will be quality time. A recent (July) study showed that palliative chemo does not improve QOL for most people. I would love to be an exception to the study, but if QOL declines, I will discontinue treatment. Of course, we can never give up hope as there are always new things on the horizon. My niece's young friend is in remission from a blood cancer (everywhere in his body) after T-Cell treatment at Sloan - he had cancer everywhere and it is now completely gone, so there are miracles out there. Praying that the break from treatment brings you some healing and relief.

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

    Hope, everything everyone else said! I was very relieved to hear from you and hope the break has the Phoenix rising soon. We all hope and pray that they figure this out and get you feeling better soon.

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