Bone Mets Thread
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What a beautiful granddaughter, Myra. Congratulations!
Sharon - welcome back! So glad that you're doing well overall! Sorry about the joint pain and hope it gets under control quickly.
Annie - thinking of you...
Dune - that does take me back to childhood. But I'll look for some.
Hope and Deanna - hope your pain is reduced and under control.
Hugs to all....
Terre
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Grandma Myra, congratulations. She's perfect and beautiful!
Cristina - oh no. What's going on? Is this virtually contagious LOL.
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Myra- Oh what a beautiful baby girl! Congratulations, I'm sooooo happy for you. You must be on cloud 9.
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Hello to all,
First off Myra, congratulations, she is absolutely beautiful and I'm so happy for you. She was definitely worth the wait!
Sharon, nice to hear from you, glad you're continuing to do well. I'm on letrozole and the pains throughout my body are not fun at all. It's affected my hands, knees, wrists and my muscles in my legs ache horribly. I'm on Celebrex, and it helps a little but I'm still in pain.
I want to thank all of you for being there for me during my wait for my scan results, it warms my heart and honestly I could feel all the positive thoughts. I got great news today, my lungs and organs are clear and the lesions in my bones are all healing, the Stereotactic and Cyberknife treatments are still working and they don't feel the cancer is active, my tm's are down to 13 from 137. I am so relieved, I think I will sleep tonight. Wishing the best for all of you here, thanks for holding my hand.
Hugs to all, Annie
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Annie- I've been waiting for your post. I'm very happy for you that your scans and appt went well and that you can breathe a little easier now. Go celebrate with your family! HOORAY!!!!
Such a joyful evening hearing good news from Myra and Annie.
To all a good night ( that sounded like a Christmas Carol)
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YAY ANNIE!!0
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Annie, that's wonderful!!!! The drop in your TMs is astounding! GREAT news!!!!!!!
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Beautiful, Myra! Wow, enjoy this!
Great news Annie! It's so nice to hear when something is working!
Thanks for the shoutout out Lindalou and Kiwi. Still working on a good pain regimine. Had another appt today for adjustments. Going to try 30mg of MSContin 2x a day to see if that will allow me to cut back on Percocet without making me a zombie. Having a tough day today because I had a biopsy done on my neck yesterday. Good part was they probably got some good soft tissue finally for pathology (they all kept telling me it might be something else). Funny, now they have all changed their tune and say looking back on scans it was always suspicious. Duh! Bad part, is I feel like I took a baseball bat to the side of my neck! Oh well, shouldn't last.
Tumor markers are continuing their climb. Up even more since last check a few weeks ago. Tripled since the spring. Liver numbers up too.
Went for 2nd opinion at USC, also. They offered to put me on the Phase 1 trials list. I wasn't too keen on that. Asked about Phase 2-3 trials and was told I would have a hard time qualifying because I had failed on so many drugs. Depressing. Not really interested in Phase 1 trials at this point. I'm all for research, but I'm still interested in finding something that might be my magic, you know? Phase 1 stuff just seems like it's last resort...helping the drug companies out more than looking for something that works for me.
They did offer me a gene panel test called Guardant 360. It's done with 2 vials of blood. Hadn't heard of it. Really interested in what it says. We shall see! With that and my recent biopsy, I'm hoping pathology turns up something that changes my treatment choices, or at least expands them.
In talking to the USC MO, I asked what sets those women with bone mets apart from each other in survival stats. Why do some survive 6-10 years, with others in the 2-4 year timeframe. He said, it's simple, response to treatment. If you respond to antihormonals for stretches of time, it's likely you will respond to other treatments, as well. I think I knew that, but always looking for slivers of hope. Wish I was a responder!
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Myra, She is beautiful!
Annie, always happy to hear good scan news. Good news now is no more anxiety for a while. Phew!
Stefanie
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Great news, Annie! Congratulations.
Hope - I am so sorry that you're still in pain. I'm sure the neck biopsy hurts! Ouch! I had a thyroid biopsy years ago and it felt like someone had punched me in the throat the first couple of days. But it does get better. Praying, sending good energy and thoughts, and crossing fingers, toes, and eyes that they find your magic bullet SOON. Glad you got a second opinion, and here's to the gene test (sounds awesome from what I'm reading about it) points to the right treatment.
Sending hugs,
Terre
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Hope, you have had more than your share of pain. I hope the neck improves quickly. And, like Terre, I just took a look at the Guardant 360 website, and that test looks amazing! I wonder why they don't use it across the board for all of us? It must be really new, huh? And what did the USC onc you saw think of the the androgen or anti-androgen drug (sorry, I forget its name) you're on? Aside from the trial stuff (which sounds like stacking the results from the get-go, doesn't it, by not even letting those with poor response to other drugs into the trials?) -- what did you think of the USC onc? Did you feel he had done his homework re. your case and was genuinely interested in getting to the bottom of your drug resistance?
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Myra,
Congratulations on the birth of your beautiful granddaughter!
Annie,
Hope you are celebrating the great news!
Thinking of everyone and hoping things are going well
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Hope, I wouldn't want to do a 1st trial either. Tough day. I'll be thinking of you. Hoping your MO finds something that will work for you. XO
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Congratulations Annie!! Great news.
I have a question for bone met girls. Is there anyway to prevent it from going into organs. I'm afraid to ask my onc. this question.
Thanks,
Rachel
P.s. If I progressed while on arimidex, does that bode poorly for me?
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Congratulations Myra! What a beauty.
Annie, glad you're doing well, celebrate the good news.
Hope, I too wish for you, that your MO will find something that will work for you, magic, yes, that's what we need, magic. It's frustrating, I had all the MO's telling me that there was nothing in my sacrum, then they did an MRI, "oh there's a tumour there" well duh...
Hope everyone else is doing well. I'm having a lot of pain from rads, so I'm not keeping up well with this thread, but know that I'm thinking about all of you. Cheers, Dee
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Hope,
Sorry about your pain but glad they're working on it. The biopsy site should get better each day. Like Terre, I had a thyroid biopsy many years ago and I remember the aftermath.
I have often wondered if I would ever participate in a phase I trial. Yes, it is helping the drug companies out, without any knowledge of whether it might help an individual. I salute those who participate in them and know they're necessary, but not sure what state I'd have to be in agree to participate. Maybe one dayI will be that noble 😇.
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Annie - WOW, I'm thrilled for you. Such good news, it calls for celebration.
Romansma - I echo what others have said and hope your pain gets under control.
Rachel - Do you mean other than systemic tx?
Dee - Hoping your pain subsides from the rads. It can take a few weeks, but you soon feel the relief.
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Annie, great news for you! What a relief you must feel! Hope, so sorry to hear about your tumor markers and liver numbers. You have certainly had some tough times and I hope you get some good answers soon, along with some pain relief
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Dee - hope you feel better soon and get some relief from the pain!
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Lindalou, HLB, Deanna, Romansma, Stefanie, Terre, Caryn, Rachel, Dee, Linda and Lynwood, thank you to all of you for sharing in my good news. I wanted to celebrate tonight but just too tired, I did however make a Starbucks run with my dd's. My 50th bday and 25th anniversary coming up in the next few days so we'll have plenty to celebrate.
Romansma, hoping the Guardant 360 gives valuable information for treatment options. Since you've only been on the Xtandi a short while it's possible things can turn for the better. It took 3 months before we noticed a change in my tm's on letrozole, at one point when they were still climbing my onc said we might need a more aggressive treatment if they didn't start going down. I'm hopeful that the right drug will make you a responder.
Dee, sorry about your pain from rads, I remember it well and it's been 8 months today for me. I won't ever forget how tired it made me and the tumor flare pain was not fun never mind the horrible esophagitis I ended up with from the rads to my sternum. I thought to myself what the hell have I done signing up for this but then today's results tell me it was worth it. Hang in there, ((((hugs))))
Myra, I'm still so excited at the arrival of your beautiful granddaughter. I want so badly to be a grandma but I better be careful saying that, sometimes you get what you wish for. Since my dd's are just starting their careers and not married or with a significant other it may not be a good thing. I'm sure you all know what I mean, I just want to be here for all those special moments.
This day has exhausted me, good night to all of you, good morning to some of you and hugs all around, Annie
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Thanks for all the well wishes. Feels good to have you all on my side. Deanna, yes the Guardant 360 is very new, so hopefully we will hear more about it. I will let you know if it seems worth it once I receive some results. As far as the USC oncologist, I really didn't think he spent any time at all trying to figure out why I fail drug after drug. It felt like he took a quick inventory of what I've failed and recommended the one drug that was missing from the list with no reasoning why it might work when everything else failed. He didn't think much of the androgen treatment, but I'm not going to let that sway me. I don't think he based that on anything other than they aren't using it right now. It made me feel pretty good about the care I get here in little ole Ventura.
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Annie, that's exactly how I feel right now, "what fresh hell did I sign up for?" The tumor flares are one thing, but the gastro-intestinal issues are quite another. I keep telling myself that it will only be a couple of weeks.... then I've got my infusion on Friday & that usually makes me feel like crap..... only a couple of weeks.... only a couple of weeks, is my new mantra.
Thanks, Terre & Linda too, I really appreciate the support right now. Dee
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Dee, you responded to my problems after sbrt thread. I am feeling a LOT better. Hopefully it won't be a few weeks but sooner than that for you. The week of treatment was fine if I took the nausea meds. Then the following week nausea got worse. Then towards the end of that week the esophagus pain started. That lasted about 5 days of pretty bad and suddenly was a lot better day before yesterday. It got better the same time I decided to try zantac. Either that really helped a lot or it was starting to improve, or both but I was surprised how dramatic the change was from one day to the next. I don't know if that is exactly what's going with you but if it is, maybe try zantac. I dreaded to even swallow the pill but it was small and only 2 per day and worth it big time. Its wird how the SEs seem to come one at a time. Now that nausea and esophagus problem is almost gone I think I'm starting with diarhea. And I slept more than I was awake today. I hope you're feeling better very quickly. I can't imagine having to get an infusion while recovering like you are. Take it easy, Heidi0
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Hello ladies. I'm catching up on reading the thread!! I so get overwhelmed trying to respond to everyone so please forgive me. Just wanted to check in. SSDI payment start next month so this increase in income has caused the state to cancel my insurance..so once again I'm without insurance with mets in my sternum and surrounding soft tissue. All will be fine as I'll use my disability check to pay for insurance . Probably blue cross and blue shield. I'm insanely tired and pain sucks but I'm mostly happy. It does work on my head that there is no cure
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Romansma, I'm sorry to hear the tumor and liver news. I agree with your decision on Phase 1 trials - you need to be greedy and advocate for yourself, not the drug companies. I hope your second opinion reveals a track not yet explored. My thoughts and prayers for you and your family.
Amy
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Romansma, I totally understand and I feel the same way you do. After just completing two Phase 1 trials, for which I had seen 9 different oncologists associated with them, all who were very positive about the drugs - I will have to think really hard about doing another phase 1 trial at this stage of the game for me. I seems like no oncologist can give me very good reasoning on any treatment at this point and all I keep being told is "We just don't know" "We are just not there yet." "We are trying" "Each patient is very different." And I keep reminding them that for us ladies who are going through this - from one treatment to the next - dealing with all the side effects, that it's very scary and frustrating. And Yes, like you said - I feel they just go down the list of treatments not really knowing what might work.
I hope the Xtandi at least helps with your pain. The one tremendous thing it did for me is completely put an end to the bone mets pain. And I am very grateful for that, and appreciate that I was able to be a part of that study - at least for that success.
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Hi everyone! I have been lurking for quite some time and have been in denial since I had progression at the beginning of June. I was in the Palo/Faslodex (Phase 3) trial for approx.19 months and oncologist has now put me on tamoxifen. I was not feeling comfortable with that decision so decided to go for two second opinions at UCLA and USC. I found UCLA to be very helpful. I just had a neck biopsy done last week at their suggestion to see if there are any changes and if I might qualify for any new trials. I also had a BRACA done. Still waiting to hear back. Romansma I found that USC was not prepared at all! When they made the apt I checked on line only to find out his specialty is Head and Neck Cancer. When I questioned them they said he also works with Breast Cancer patients. Turns out the Doctor who is a specialist in breast cancer just left for MD Anderson. (His words after I questioned him at my appointment) His only suggestion to me was to see a RO and get the whole area radiated and it could possibly take me to NED. When I questioned him about side effects his answer was that I might feel a little tired. When I pushed him for more he was very vague. From what I have read on here, a little tired is not the right answer! Anyway everyone seemed ok with the treatment I am getting. I think at this point it just becomes what works for each of us! I'm really struggling with all this. At times it is so overwhelming. I hoping that in time I will be able to accept what I can't change.
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Rachel, as far as I know, there is no way to ensure our mets doesn't move beyond our bones. OTOH, I see many women on BCO and elsewhere who are doing well -- even NED -- several years into tx for liver and/or lung mets. So as scary as it is to all of us, I'd like to believe there is still hope, if that were to happen. But I think the most we can hope for is to catch it very early, when it can possibly be treated with cyberknife or one of the other RT modalities. That's just my take on it.
Hi, SusanAnn. So glad you stopped lurking and joined the conversation. And so glad you had an explanation for Romansma about why her experience at USC wasn't at all what she'd hoped for -- although that Guardant 360 test may turn out to be huge enough for it to have been well worth the visit. I'm curious who you saw at UCLA, if you feel like sharing. As I've mentioned more than once, I see and adore Sara Hurvitz there, and I'm just curious if that's who you got to see. She, by the way, told me in an email yesterday that she thought the increased pain I had in the past week might be tumor flares caused by Faslodex, and I'm thinking she's right, since I'm finally feeling more normal today.
And Hope, what SusanAnn said above made me wonder, have you been tested for the BRCA gene?
HopeFaith, that stinks about losing your medical insurance. Grrrrrrrrr.... to the government for making it so difficult on people who clearly need insurance coverage to get and keep it due to SSDI, which hardly puts anyone in the well-off category! I hope it works out for you without too much frustration or paperwork.
Stopping here due to length... Hugs to everyone else, and special prayers for those who are dealing with pain. Deanna
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Thanks Heidi for the recommendation of Zantac. I will go & talk to my pharmacist about it today. I wish that everyone had a pharmacist like Simon. He knows my case inside & out, knows exactly what I need & don't need & what could possibly interfere with my meds.
SusanAnn, sorry you have to be here, but as you can see from lurking, there is so much support on this thread, whether you're doing well or having issues. We try to help one another through thick & thin. You are where I was a year ago & I can tell you, I was a mess. But keep posting & we'll try to help you as much as we can.
Hello to all on this thread & I hope everyone is having a good day. I'm taking today off to try to recharge before tomorrow's infusion. Cheers, Dee
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Annie- Awesome news! I am so happy for you! You must be thrilled!
Dee- sorry you are feeling ill and hope you begin to get better. I can't remember what infusion you get and did not see it in your signature.
Hope- I'm sorry that appointment didn't go better. I know nothing about Phase 1 trials, I would probably try one if I felt I understood the mechanism of how the drug worked and I believed in it. Let's see what your gene panel results and biopsy turn up. I am going to mention the 360 to my onc as well. It's really shitty news that the MO said if you don't respond well to antihormonals that kind of determines how long you will last. Basically not good news for me.
So far minimal side effects on Ibrance, some nausea and weird feelings, but nothing yet to stop me from taking this. I hope it's doing something.
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