Bone Mets Thread
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get ladies. Thank you so much for your care and concern. I am still in hospital. Infectious disease specialist and gi dr never made it by yesterday for consult. So more waiting.
Dune. I am loving your new burst of energy. I vision you blooming like spring. Keep it up. So encouraging.
Hugs to all
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Sorry you have to wait more, Patty. Keeping you in my thoughts.
Kiwicat, had problems with my eyes, too, causing dizziness and vertigo. Then I had the posterior gel of one eyeball rip, which had to be lasered back on. When my onc heard about this, he switched me to Tamoxifen. Then two years later, the other eyeball. He then switched me to Arimidex. I think it's about the lack of estrogen and cumulative toxicity of drugs.
Woohoo, too, on your TM's Annie! Got mine back as well and all low, my onc said. (Why didn't I ask for a copy?) So really no indication to send me for a PET scan, CT was enough.
Good luck on the CT, Deanna!
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Patti, I can't believe with what you have been through, the MDs did not make it in to see you. Time to have someone start yelling? My experience with the medical community: The squeaky wheel gets the oil. Take care and the very best to you Your spirit is amazing! Myra
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I agree with Myra, Patty, someone needs to take charge for you and get the attention you deserve!
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Terre and Romansma, thanks for sharing your experience with Celebrex. I hope this one works to get rid of some of this pain. This morning I could barely bend my left wrist, brutal pain.
Heidihill, awesome news on your tm's. My onc prints me a copy every visit that shows the decline. Great news on not needing the PET scan. My oncs say the CT is better, not sure?
Patty, you definitely need some answers and someone fighting to get to the cause of this. My prayers and positive thoughts are always with you.
Hugs to all, Annie
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Geeze Patty - if the commute wasn't so far, I'd come over and do my "Ugly American" thing that I did to finally get my DH diagnosed. Keeping you in my thoughts and hoping to get this sorted out TODAY! You can tell them they don't want to make me come over there!
(I'm usually really nice but can be pretty strident when I need to).
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Patty, I hope you get some answers and some relief soon. Thinking of you
Deanna, Good luck on your scans.
Congrats to Annie and Hedihill, love hearing good news
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Good luck on your CT Deanna.
I've been waiting a long time to for a clinical trial at UCSF. I went to see the Dr. today & she has one phase 1 clinical trial CUDC-907 where 2 enzymes called HDAC & P13K will be stopped from working correctly and inhibit the development of cancer cells to grow & divide. It requires a lot of time the first month, like 3 10 hour days there & coming in every other day for the first month. The other trial I was hoping for (immunetherapy) trial won't start for another month or two.
I've been off Affinitor for about 2 months, still taking Aromasin. I feel a lot better and my blood pressure finally came down to a normal range, just hoping I don't get more mets waiting for the immune trial to start.
Hope those on Palbo are doing well.
Terri
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Good luck on your CT Deanna.
I've been waiting a long time to for a clinical trial at UCSF. I went to see the Dr. today & she has one phase 1 clinical trial CUDC-907 where 2 enzymes called HDAC & P13K will be stopped from working correctly and inhibit the development of cancer cells to grow & divide. It requires a lot of time the first month, like 3 10 hour days there & coming in every other day for the first month. The other trial I was hoping for (immunetherapy) trial won't start for another month or two.
I've been off Affinitor for about 2 months, still taking Aromasin. I feel a lot better and my blood pressure finally came down to a normal range, just hoping I don't get more mets waiting for the immune trial to start.
Hope those on Palbo (Ibrance) are doing well.
Terri
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Terri - fingers, toes, and eyes crossed for you. Sending good thoughts your way. The advances they're making are amazing. I've mentioned before, I know several people who were in Phase 1 trials and had huge success, so I'm praying for the same for you!
Deanna - good luck with the scans! Hoping for great results.
Terre
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Terri, will you be doing the immunotherapy trial or the CUDC907 one?
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Hello to all,
Terri, I hope your new trial gets underway soon. Praying for you to have much success with it.
Dunesleeper, you're keeping yourself busy and that's great. I'm so happy the rads have brought you relief.
I'm feeling a bit better so far on the Celebrex, fingers crossed things continue to improve. I went to a concert last night and saw Vienna Boys Choir, it was unbelievable. Today I'm resting and taking it easy.
Hugs to all, Annie
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Happy it seems to be helping, Annie. Enjoy your day!
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Hi Ladies!! Just popping in to let you all know I'm still alive and kicking! I seem to have been really busy this year for some reason but it's all good.......lol. Been travelling a bit visiting family and friends that I haven't seen for a long time and it has been rather fabulous. Hubby has surprised me with a trip to France for the two of us come September so I'm really looking forward to that.
I have to admit that I haven't read all the pages here as there were way too many but the ones I did let me know that there are a few new ladies and still a lot of the regulars........to the new girls, welcome and the regulars, nice to see you all and I promise it won't be so long until I pop in again.
Love n hugs all round. Chrissy
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Arrrgh!!! Once again, I managed to lose this thread (always happens when I'm on my phone), and was wondering why everyone was so quiet the past two days.... Duh...
So I wanted to share that my CT @ UCLA went great -- partly b'cuz they're on Spring break, so it was surprisingly calmer than the medical center's usual hectic environment. I've learned to speak up about my veins (as well as drink tons of water that made the last hour or so in freeway traffic extremely uncomfortable!), and this time they called in a lovely RN who miraculously got my IV the first time, commenting to the tech that she used a smaller needle. I've also learned to hold my breath and chug (in 15 min increments, 8 oz. per) the 32 oz. of "Berry Smoothie" they give you, which works better for me than trying to drink that nasty, nasty stuff any slower. So it honestly wasn't bad at all. Not sure when I'll hear anything, and thinking Spring could mean my onc will be out this week.
I also want to share something weird that happened to me I still can't figure out. My DH and I stayed over in the LA area to join some friends at the Nethercutt Museum on Saturday. While we were there, standing outside waiting for a docent tour of one of the exhibits, I suddenly felt like I was going to pass out. DH helped me inside where I literally had to lie down on the floor until the lightheadness or whatever it was passed. It was bizarre -- mostly b'cuz I have no idea what caused it -- dehydration? not getting the radioactive RT meds out of my system fast enough? the codeine pain pill I'd popped b'cuz earlier because my rib area is extremely painful after a sudden break slamming/seat belt grabbing incident on the freeway, plus a bad decision to use the weights in the hotel gym. Anyway, just wondering if anyone else has had something like this happen? My only similar experience was when nausea from Femara did something like that to me several years ago, and I literally did pass out while waiting in line at the post office! This was the same feeling, but felt like it came on out of the blue, and was pretty scary.
Terri, so are you going to get into the first available trial or wait and hope to get into the one you really want? They both sound promising! What does your onc want you to do?
Patty, we are all so concerned about you! Hope you can update us on what's going on. I'm with Terre and the others on being less than satisfied with the attention you've gotten up, at least up until your most recent post above.
Happy Sunday & big (((Hugs))) to all! Deanna
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Deanna, this happens to me periodically, though I have never passed out. Sometimes when I get up I feel like my legs are in mud and moving them is very difficult. I chalked it up to the amount of meds I am taking, their very similar SEs and the fact I have never taken meds like this in my live, even the first go round. This also happened to me after my last PET scan since I figured the garbage they injected into me did not fully leave my system. So much guesswork and detective work. Hope this helps. Myra
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Deanna, what is your tx now? I'm on Navelbine and occasionally I get extremely dizzy, though it's usually during my yoga class (inversions!). I have naturally low blood pressure which can lead to positional veretigo. This is different, though, since positional vertigo passes in less than a minute and this dizziness stays & I have to stop the yoga.
Leah
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Thanks, Myra. That's helpful to know, although I suspect from what you said you're on more meds than I am. I also wonder if maybe stress played into it -- although trying to stay distracted, very worried about results, especially since my TMs are up and my rib has gotten increasingly painful and constant, especially yesterday.
Leah, at the moment, I'm still on Arimidex and Codeine #3, as needed, which I have the past few days. I hadn't taken any pain meds for several months, but this side pain definitely requires them again.
It's just scary to wonder if and when that could happen again. Maybe it was just the CT drink + IV -- the latter of which gave me quite the "heat" jolt this time -- far more than past CTs.
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Not alot, Ibrance and Femara and oxy 5/325 which I think is the culprit. I am very susceptible to meds, I tend to be a major light weight.......Hope all goes well with your scans, scanxiety stinks!
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Chrissy, hello and welcome back, I was worried about you and was wondering where you were. Someone here, can't remember who said you were just busy and not posting here as much. Glad to hear you're doing well and how exciting about your upcoming trip to France! Please pop in again and thanks for letting us know how you're doing.
Deanna, I bet that was a pretty scary incident. I have to tell you I often feel very strange after my CT scan, for me I think it's the dye they inject, happens every time and the last time the nurse told me it was important to drink drink drink afterwards to flush it out of my system. Hope you're feeling better and that your results show stability.
Patty, hope you're feeling better. Please let us know how you're doing.
Hugs to all, Annie
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I have recently joined this site after being diagnosed with bone mets in Oct. 2014. I was wondering if any other's tumor markers are slowly rising during treatment. I am on monthly injections of Faslodex and Xgeva. I have CT and bone scans every 3 months and my last scan showed the cancer wasn't growing but my last tumor maker number went up. I have my next scan on April 8th and depending on the results, my Dr. is talking about changing my meds. Has anyone else experienced anything similiar?
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I have failed femara and Falsodex I believe a lot of us have been in this position. Hope this helps. Myr
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Terri, I had it happen once. It was before my CT, so it wasn't that. I think it was the pain meds. Remember back when I thought I might have broken my hip and couldn't walk without a cane? It was then. It felt like something was pushing me backward. I just got down on the floor really fast.I think I had the CT the next day.
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I think I will wait for the immunetherapy trial. They told me the Side effects of the 907 trial-fatigue, low white & red blood counts & most likely will get diabetes. While still basically healthy, I'd rather go wait for the immunetherapy trial to strengthen my immune system to attack the cancer.
Terri
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Deanna - had the same thing after my last scan. Had to leave my photography class early because of it.
Terri - I am quite excited for you. The trials have had some amazing results. Holding positive thoughts for you.
Welcome back Chrissy!
Annie - glad Celebrex is working.
Hi to everyone else. I am at a hotel on my phone and this little keyboard is driving me nuts!
Hugs...
Terre
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Deanna ... I've had similar experiences & usually for me it's low blood sugar. My BP tends to run low as well, so have to be careful changing positions and/or if I bend over - just never know if it's running in the more normal range or under 100 systolically. On rare occasions, I can actually be hyperventilating and not realize it - so if you were in pain or anxious, you might have been "over breathing" & weren't even aware of it; pain can increase BP and HR as well.
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Interesting that you had what sounds like the same thing happen, Terre. And SyrMom interesting point about the hyperventilating. Sorry both of you and others have had that happen. It's not fun!
Patty, I will be so relieved when you check in with us and let us know what's going on!
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I agree with that patty. Myra
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Patty - hope you're ok.
On a good news note:
http://medicalxpress.com/news/2015-03-drug-stalls-...
http://medicalxpress.com/news/2014-09-scientists-r...
Always like good science news.
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Terre, thanks for sharing the good science news, I found both articles very interesting.
Patty, I hope you're ok and will be able to update us soon. Thinking of you and sending hugs.
I'm off to see the orthopedic surgeon today. Another x-ray of my humerus to see if that met is filling in and hopefully I can avoid that surgery. Wish me luck!
Hugs to all, Annie
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