Androgen Receptor Testing & Treatment

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

    Oh yes, this heat! I am not usually awake at this hour, but my house has still not cooled off from the scorcher we had today. Living on the coast, we don't have air conditioning. It's awful! I'm still having bouts of weakness and low grade fever. Pretty sure it's my new normal.

    Hoping the weather relents soon. I'm ready for fall! Sleep good friends!

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

    Hope, we've been having so much hot weather here in Quebec in September, hard to believe. I also look forward for fall but then the snow comes too fast. It's a bit cooler here this morning and what a relief!

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  • oriole
    oriole Member Posts: 72
    edited September 2015

    Are you feeling any better Hope? The heat has finally broken on the Monterey Bay and we had a little fog this morning!

    Wishing you a good weekend!

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  • usafmom
    usafmom Member Posts: 778
    edited September 2015

    Thinking about you Hope..I hope your feeling better. I hope your weather has cooled down...it finally broke here in Illinois yesterday.

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

    I think I may be feeling a tiny bit better. The weather has been so awful it's hard to tell. I'm sleeping a lot. The left side of my jaw has been sore, making it harder to eat. Called my MO about it. They don't think it's Related to the Xgeva. I've had weird stuff on that side of my head for months now. That's where I had the biopsy done, about an inch below where it hurts now. Wondering if it is an infection and maybe the cause of the fevers. I have more labs and an appointment this week. Thinking all this is just my new normal. Just not my peppy self anymore. I guess that was bound to happen. I think the Xtandi definitely causes fatigue and maybe even weakness. I've noticed huge differences in my activity level since starting this treatment. I'm still hopeful that it will have a good impact and pull back some of my cancer that seems to be having a blow out party these days. Time to shut down the fun!

    I hope you all are enjoying your weekend. I don't see fog out my window this morning, so I'm guessing it will be hot again. We really need relief from the weather. Living here on the coast, most homes don't have air conditioning, including mine. It has been so hot. Just want my 68 degree weather back! Wishing for fog......

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

    Hope, so glad to hear from you and that you're feeling a tiny bit better. Xtandi doesn't sound like a walk in the park. The weather is not helping and for sure. Sending you love, hugs and fog...

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  • Hummingbird4
    Hummingbird4 Member Posts: 331
    edited September 2015

    Hi Hope. Very glad to hear that you have an appointment and labs this week. You have a lot going on, and I hope you can find out how to get some relief and stop the fevers. I agree that while on Xtandi - I also had way less energy. And that feeling of tremendous fatigue carried on for a few months after I stopped taking it. I guess maybe I did also have that feeling of weakness that you mention, but I thought I was just very, very tired.

    Good Luck with your appointments this week. Wishing for cooler weather for you, too!

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

    Thanks for your input, Hummingbird. The weakness isn't relenting. I find myself just sitting a lot because I'm too weak to do anything. It makes me start questioning what is causing it. I'm hoping it is a side effect and that the Xtandi is doing its job. Time will tell.

    Linda, so good to hear from you as well. How are you doing?

    However, the heat has finally relented! I'm listening to the rain trickle down the gutters right now. It's still warm, but not awful. The rain is the remnants of a hurricane south of us, I believe. If I watched or read the news, I'd know, but I don't. I'm just happy to hear the rain. My lawn and garden is so dry

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

    Hope, I'm fine other than a nasty cough. Had my routine scan yesterday so will see if anything brewing in the lungs.

    What a bummer that you're feeling crappy. Perhaps the "cooler" weather will help, I hope. That Xtandi seems very harsh - you are always in my thoughts and prayers. Sending hugs and cold weather...

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  • usafmom
    usafmom Member Posts: 778
    edited September 2015

    So glad your having a small break Hope in your weather. Fatigue and weakness seem to happen with so many chemo treatments. You have a small war going on in your body so try to be good to yourself. I know nicer weather can lift your spirits..which helps so much.

    Well Astella is dragging their feet on changing the paperwork. Plus I need cataract surgery in the next few weeks..so my onc is keeping me on the Perjeta/her/navelbine for another 3 week cycle. We talked about the compassionate usage of the drug but she feels they are making progress on the consent form so we are hoping within thirty days I'll be on xtandi.

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

    Good luck on that, hope it all works. Just found a smidge of energy to go get my labs. Not sure I've ever felt this weak before. Hope it relents soon.

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

    I've been following this thread with interest as I am ILC like you Hope, and every trick we can pull out of the bag is important. I have leaned so much from you and Bestbird in such a short time. I hope you start perking up soon and this medicine starts to kick %$#@ for you! Thinking of you.....

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  • oriole
    oriole Member Posts: 72
    edited September 2015

    I am sorry that this tx has been so tough, but I hope you get good news on your next scan. Being tired can just start to wear me down emotionally. I am finishing up my 5th month on A/A and I still look back at some of your posts on that thread when I need encouragement. You have helped so many of us by sharing your ups and downs on the different tx plans.

    We desperately need the rain that you got today. It is just so incredibly dry up here on the Monterey Bay. A group of us watched the 49ers win last night ... a fun time! Hope you start feeling better this week! Thinking good thoughts for you!

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

    Thank you for the encouragement. Means a lot to me! I have to admit that I'm getting a little down. Hopefully I will get some good news soon. I think that will go a long way towards hanging in with this treatment. Although, I am still not sure it is the treatment causing everything. It will get sorted out soon enough.


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

    Hi Hope - it's me - I've been following you since the AA thread, through Ibrance and now your latest tx - I am still on Faslodex and it's working but I follow you because you've given such a boost to so many of us - hate that you're so fatigued and hope it's the tx and that good things will show up on next scans - meanwhile I hope you can relax and sleep peacefully and wait this out although I know it must be difficult because family and life have to be on hold for now. Sending hugs, S.

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

    Hi Hope…

    Just wanted to let you know that you're in my thoughts too! I'm still on hold for Ibrance, and I'm so grateful for the informative thread you started. I hope that you'll soon discover what's causing your fatigue, and that you can move forward and feel better very soon!!!!

    Love to you…

    Rose.

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

    Hope, fingers crossed that you get excellent results from the lab! I'm wondering whether some of the counts may be a bit low, which may be contributing to your fatigue?

    Also, I was wondering whether you may want to get up the energy to see you internal medicine doctor? One thing that struck me about fatigue is that it can sometimes be caused by infections, even those such as UTIs. Of course we think, and our oncologists think, that nearly every symptom may be cancer- or treatment-related, but it may not always be so.

    Hoping you get great news! But please tell your doctor (again) how you are feeling.

    Hugs!

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

    Thank you again for the encouragement. Feeling so weak and not able to do anything with or for my family has really started to wear on me. I saw my MO yesterday and she is looking in many different directions right now to try to figure this out. We aren't as worried about the fatigue part, although it is part of the puzzle. The weakness and low grade fever in the evenings is the part that isn't fitting in as a side effect. She checked my reflexes and I don't seem to have any in my arms and very slow, slight reflex in my legs. She says this could be thyroid, but it could also be neurological. She is doing a little research and wants to talk to her colleagues before we figure out what to do, but I think we may be doing more blood tests, as well as CT scans of the liver and abdomen. I know I should get in to see my primary, Bestbird, but I just haven't had the energy for another dr appt. I am going to talk with her in a few days and will ask about the infection route. Seems that a symptom would have shown itself by now if that's what it was, but maybe not. Anyway, I feel a little better that she is working on finding a solution. It's really hard to go on thinking this is my normal and how things will be. I'm a lump on a log and my brain is running circles round my body's ability to do anything!



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

    Hope - glad your MO is working on your case - hate that you're going to have to go through more scans and blood draws but finding an answer is the "light at the end of the tunnel". In the meantime if your weather has cooled, can you rest outdoors? Sending hugs, S.

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

    Hope - good to hear that more testing is on the way to get to the bottom of this and find a solution. You're going through a really rough patch. Did you get the results of the labs? Hang in there, rest all you need and let yourself be pampered. In the meantime, I'm sending you hugs. We care about you very much.

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  • Hummingbird4
    Hummingbird4 Member Posts: 331
    edited September 2015

    Want to wish you good luck with your scans and tests, Hope. Glad to hear that your MO is trying to find out what is going on. I hope that you get to the bottom of it very soon and get your energy back. Please keep us updated.

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  • oriole
    oriole Member Posts: 72
    edited September 2015

    Hi Hope,

    I am glad that you got to see your MO and they are going to run some more tests. I've been tired the last few days and I probably just have overdone it, but it just really gets to me emotionally that I can't do all the things that I used to be able to do. I am tolerating the AA regime, but there are down days...

    The central coast has been so beautiful lately. I used to live in your area and I still remember being on Highway 1 right north of Ventura and seeing hundreds of dolphins surfing in the waves right by the road...I went down to the bay today to just recharge myself. Feeling fresh air really helps me. My goofy dog also makes certain that I get out twice a day.

    Wishing you news from your doctor so that you can get a plan to get the fever and weakness under control.

    I am really just a lurker on these boards, but I so admire all of you who have been brave enough to share your ups and downs. All of you have been so incredibly helpful to me these last three years. A friend who has Parkinsons told me recently that "we fight the good fight and just continue to move forward...."

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

    Hope, it's good to hear that your doctor is fully aware of the issue. I'd hope she'll order a CBC and have a good look at your wbc. Also for your consideration, a C-Reactive Protein (CRP) test may be helpful to determine whether your inflammation levels may be a bit high.

    Sounds like your MO has things well underway! Meanwhile rest, and know we're thinking of you!

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

    Hope, Just want you to know I'm thinking of you and hoping and praying for improvement and relief. You helped me so much with your Ibrance thread.

    My mother was in the hospital recently thinking she was having heart valve issues, but they found blood clots on the lung instead. She was lucky to be at Mass General where they have all types of different experts in their fields, all weighing in (lymphoma, heart, and other specialists) and together they were able to figure it out (I was so glad she was at one of the best hospitals). Weird that she had blood clots on her lung, and then they found the same on my lungs in a scan). I hope you are going to an excellent hospital with a lot of experts working together.

    I have signed up for palliative care because tests have shown people live longer and with better quality than those who don't have it (Palliative care is not just for end of life issues, but also for managing difficult symptoms while undergoing chemo and other treatments - right now I have a weakened spine and am getting radiation next week). They are going to tack on a palliative care appointment after my onc appointments from now on to discuss and try to help with difficult symptoms and issues. I failed the Ibrance and am planning to go to Xeloda after I do radiation (3rd radiation and it will be tricky, but I have the best doc in the world and am hoping it relieves some back pain I have with lifting laundry, iron pan, food shopping, etc..) - The radiation will delay the Xeloda, though, and my blood tests yesterday showed the tumor markers increased since stopping Ibrance, and the blood is still kind of low from the Ibrance, though it has improved. I imagine that your low blood levels after Ibrance have made it difficult to tolerate the new treatment. The nurse said she was glad I will have more time before starting the Xeloda, so maybe she thinks the blood levels need to be higher before starting another treatment.

    Hang in there, and I will keep thinking of you and praying you get help soon.

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  • usafmom
    usafmom Member Posts: 778
    edited September 2015

    Hope just wanted to let you know I'm thinking of you. I hope they can get you some relief soon. I know it is hard feeling like you can't help your family..but they love u and understand. Gentle hug

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

    Thank you! I got a call today that they have scheduled a CT scan for the end of this month. Maybe it will give us some new clues. Have you had your cataract surgery yet?

    Holly, sorry to hear about the Ibrance failing for you. Hope the radiation and palliative care give you some relief. Not sure my hospital offers this, but maybe I will ask. Definitely give yourself a little time to recover from the low blood counts on the Ibrance. Mine were so low. They have recovered some, but the amount of disease in my marrow is blocking a better recovery. I am anemic for sure. WBC is always around 2. It's just where I am right now and makes choosing effective treatments a little tough.

    I don't have anything positive or negative to report about Xtandi right now. I'm not sure if my weakness is caused by this drug, so I will wait to weigh in on tolerating Xtandi. I will be sure to leave info here as soon as I get any.


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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited September 2015

    Hoping there's an answer soon to the fatigue & fever, Hope, & that scans show xtandi is working.  Sending hugs.

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  • usafmom
    usafmom Member Posts: 778
    edited September 2015

    Hope glad your getting some scans and feel positive about the treatment. I really hope this drug is working. Prayers for good scans

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  • oriole
    oriole Member Posts: 72
    edited September 2015

    Hope,

    Are you getting scans this week? If so, wishing you results that show that the new drug is working for you! Are you feeling better?

    Thinking positive thoughts for you and hoping that you are enjoying the beautiful autumn days with your family.

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

    Thinking of you Hope and sending hugs and love.

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