Bone Mets Thread
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Deanna I did see Sara Hurvitz and she is wonderful. A very good friend of mine has been seeing her for over ten years and said that she is the best! Unfortunately she would only see me for a consult and is not taking any new patients. I had all my surgeries at UCLA - the care is exceptional! I live quite a distance so I opted to see an oncologist in the area but still go there for anything major. Faslodex does cause flares but as time goes on things do calm down. The side effects of Ibrance/faslodex for me were minimal although I had a spontaneous heel fracture. I wish you all the best on this drug combo and very happy to hear that today is a better day for you!
Dee thank you for the warm welcome! It is so nice to know that there are so many people out there willing to help. I guess I find it difficult to ask as I have always been so independent. Looking forward to getting to know everyone! Thank you!
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Cristina, I'm getting Pamidronate every 4 weeks. It makes me very flu-ish & my bones ache for the weekend. I took a bunch of stuff off my Dx because I've been here for 7 years now & my Dx was getting way too long. It's good to know about Ibrance. It's not approved for use here yet, but I'm hoping by the time I need it, it will be. Cheers, Dee
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Susan, I'm also at a distance from UCLA -- near Palm Desert -- and I also had my mx & recon at UCLA (Racquel Prati & Jaco Festekjian) after starting out with a lx in Palm Springs that totally missed my multicentric disease (detailed on my bio page and why I am so adamant about NCI-designated cancer centers). The fact that I had seen Sara in 2008 when I went to UCLA for a second opinion is probably why I was able to get in with her when I was re-dx'd last year.
Dee, good luck tomorrow! Have your flu-ish symptoms diminished any since you started Pamidronate?
Christina, glad you're tolerating the Ibrance well, and I'm sure it's working!
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Dee, so I get it, Pamidronate is your bisphosphonate treatment. I take Xgeva and usually get a headache the day of and day after.
Deanna, I just read your bio. I hadn't before!
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Deanna, I also had Racquel Prati and Jaco Festekjian! I live on the Palos Verdes Peninsula - the traffic is horrible no matter what time of day it is, especially on Wilshire!
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Hi, I have been reading on the boards a lot lately and I was hoping you could answer some questions for me or give me some guidance. I am ER+, PR+ and HER2 neutral in my bone mets which I have a few throughout the pelvic region and one on my lumbar. I have no other mets. My breast tumor is triple positive grade 3. I am currently on taxoterrible, perjeta and Herceptin. I've read about women who have had rads to their mets which killed the tumor bed. I have not been offered that option. Should I ask about it? Do they not do it if you have too many mets? I see my MO next Wed. I am just trying to educate myself. I have twins going into 6th grade and want to be able to guide them through graduation. Thanks so much for your help.
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Txmom, I just had 3 spinal mets radiated with sbrt with the intent to kill the mets. I think in general most places will not radiate mets unless you have pain. The thinking is starting to change on that and some believe with a limited number of mets it can be helpful. My onc was against it and I had to travel from PA to FL to get it. I went to UF Shands in Gainesville. They are trying to change the definition of what is incurable and they want to prove that it can help some patients with less than 10 mets. I am still recovering from SEs but I'm expecting my next scans to show those mets dead. I figured my cancer may come back but not likely in the same place, and who knows how long that will take? Maybe I will get a good amount of PFS. So its definitely worth looking into but don't give in if your month says no.0
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Ha! Medical oncologist turned into month, sorry0
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Deanna, Yes, my flu-ish symptoms have diminished some since starting, the absolute worst was the first one, but I still feel like cr*p, headache, bone pain & nausea, for the weekend. (I always have it on Friday) I can time it to exactly 48 hours til I'm feeling better. I know that I can go out for dinner on Sunday night, but not out for lunch.
Heidi, Is Xgeva an injection? That would be better than an infusion which takes about 1 1/2 - 2 hours. Have they told you how long you will be getting it? Like me, the rest of my life they said.
Txmom, I was never offered rads until I complained about pain. Even though my pain wasn't really horrible, my MO & I decided that rather than switch to another treatment option, we would try rads to see if it would kill the tumors which weren't shrinking as fast as most of the other ones. You may have to exaggerate your pain a bit. My MO told me that I would have to tell the RO that my pain was actually worse than it was to get rads approval.
Cheers, Dee
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Dee, yes, XGEVA is an injection. I'm very grateful I can get that instead of an infusion. He never talked of how long I would be on it, but its been 3 years of once a month and I asked him if maybe I should go to every 2 months at some point and he said no. He really believes in it and he said it stops cancer from growing as well as the other bone benefits. Its interesting that you got the rads instead of changing treatment. I have 4 mets that are dormant and it would be really nice to continue with letrozole now that the 3 stubborn ones have been radiated. My onc switched me to A/A and I have been only taking the aromasin. Will have to think of an agreeable way to bring this up after I tell him about the rads that he didn't want me to get.0
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myra wow a beautiful girl thanks so much for sharing the picture.
Sharon8 I keep thinking it would be really nice to have a pet scan in my basement. My tumor markers arent meaningful so scans is how I find out how things are going. I have had 2pet scans and 2mris since december. Partly because all sorts of pain issues. I am on extemestene and monthly zometta since december. My. mo does not like to blame the AI. for the pain, but says bones just take a long time to heal. The multiple scans so far have shown good news. I am not NED yet but stable. I just recently started seeing a physical therapist and for me this is working to reduce some pain. This seems like a rambling way to say I have pain too, started just a month out. But pt. is helping me stick with a treatment that is working. I send positive energy your way in hopes you find a way to be more comfortable.
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Thanks 3-16. I can't complain much about my pain -- it's really primarily aches, and I was diagnosed with osteoarthritis in my late 30's (67 now), so I am used to feeling achy. It's just these latest pains in some of my fingers that is more concerning. I think I probably just have to live with it if it's from the exemestane (Aromasin). I felt much worse on Femara (letrozole) 6 years ago. That stuff is evil! I almost went out of my mind. I was very hard to live with and I hurt everywhere all the time. The thing was that I didn't have any problems for the first 4 months, so I didn't connect it to the drug. When the light bulb finally went on, I immediately stopped taking it and felt 100% better in a few days. My MO was on vacation, so I waited until he got back to tell him, but I had a much better Christmas that year because I stopped the drug! This was during the 5 years after my first DX. I tried Arimidex, but after a few days, I felt the same problems coming on, so I went back to the tamoxifen, which gave me absolutely no problems. The exemestane has been uneventful until these recent aches and pains started, and as I said, it's the bad pain in certain fingers that worries me. If it's something else, maybe I should find out so I can avoid joint damage. I'm considering seeing a rheumatologist just to make sure. Compared to the REAL pain others are having, mine is no big deal. The exemestane is keeping the cancer at bay, so I can deal with it. I also get a shot of Xgeva every four weeks, and have no problems with it. In fact for a long time it seemed to help with some of the arthritis issues.
As for TM's and scans, I'm happy with the stable TM's and have no great desire to go "tubing" in the PET scanner anytime soon! My basement is such a mess I'd never go down there to use it anyway, so it's ok I can't have one at home!
I'm glad to hear you're close to NED, and I hope all your pain is from healing and that it will be gone soon. I hope that for all of us.
Have a fun and pain-free weekend, everyone! We all deserve it!
Sharon
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Frustrating, huh, Hummingbird. Sorry, you are getting the same "throw it against the wall to see if it sticks" treatment guidance! I guess that's all they have, but still! SusanAnn, good to hear from you. Thanks for confirming my less than thrilling experience at USC. As Deanna said, I'm hoping the Guardant 360 makes it all worth it. And yes, Deanna, I was tested for BRCA a few years back and negative. We keep searching for answers! It's good to have a place to share and get info. TGIF!
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good morning ladies. Looks like I owe you guys an apology for worrying some of you. Sorry. I had a bco friend post why I was out but I forgot she's not stageIV so we didn't post to this forum only IT thread. I finally got caught up on the reading last night . y'all have been busy. Can't remember everything so just giving hugs and encouragement to those who need it and high fives for those who have gotten good news
My pet showed progression. It was in my spine in every vertebrae from base of skull to tailbone then a small spot or two on ribs, hips and pelvis. Pet glowed like a Christmas tree. All spine tumors have grown in size and qty. Ribs left and right,hips and pelvis have tumors too many too count. Also now in both arms and both legs. I know many people here have it so much worse but I guess I freaked out over first progression. Dh and I decided to get away and take the kids for a mini vacation before school starts. I've been freaking out that it's my last summer with them so I've been spending most all my time trying to make good memories and take lots of laughing pics. I haven't changed tx yet but was supposed to have mo appt today but I am in hospital. Yesterday I had a planned surgery on back for pain relief. Dr did 4 kyphos ( to repair fractures), 4 ablations ( to freeze some tumors off that were pressing on spine due to their size) and 4 rfas ( to burn nerves). Although I have had each of these done before but never so many at one time. Dr said he had never done that much at one time before and he wouldn't do it again. I was trying for 1 surgery1 recovery. I am in a lot of pain so the kept me overnight for pain control. Will go home today.
Hugs all around.
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Oh Patty, I'm so happy to hear from you but sad to hear of your progression and pain. Yes we were all very worried about you but I'm happy to know it's because you were spending time with the boys and that you all had a nice vacation together. You have been through so much and I'm sorry to hear you're in the hospital again but praying the procedures you had done bring you much needed relief from your pain. It's just not fair that we have to go through this. Patty you are strong and you're a fighter and I know you're scared right now but this is not your last summer with your boys! I'm sending you all my love and healing energy and hugs. Please keep us updated, I hope you get to go home today.
It's my Birthday today, 50 years young, although I feel like I'm 100 some days. Off for a day of celebrating and royal treatment, I'll take it! Will check in when I can, thinking of all of you and hugs all around, Annie
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Patty- Words can't express how sorry I am to hear your progression news and surgery news. You have endured so much just in a short while. Praying that the kyphos and ablations and rfa will help in your pain. I've had almost immediate relief with kyphos so hoping you will feel that soon. I wish you strength and peace and lots of love as you move forward. Remember that we are all here for you and will support you in any way we can. A million hugs to you and your family.
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Patty, so glad to see you back on the boards and am so sorry to hear about your progression. I have heard that kyphos can be very effective for pain relief, and I hope that this is the case with you. Hope you get home to your kids soon. Annie, Happy Birthday!! Birthdays are extra special milestones when you have cancer. Enjoy the celebration and royal treatment, you deserve it
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Happy 50th Annie!!! I celebrated 50 a few months back and it was awesome. One of my favorite birthdays. Hope it is for you too!
Patty, let these supportive women hold you up. Try to concentrate on just Patty for a bit. Each day will get a little better as you get some pain control and ease into a new treatment. I'm here for you!
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Annie, Happy 50th Birthday! Have a great day and CELEBRATE!! I'll send you 50 celebratory hugs today.
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Judt a quick thank you for all ur good wishes. More photos to come. Happy days to all and congrats to all for ur good results. Sorry can't address all. Very busy household right now Myra
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Patty, very sorry to learn that your bone mets progressed for the first time after two years of the first line treatment. But I am sure you have many many more summers to spend with your lovely sons. If the first line treatment has lasted for at least two years, I think it is a good sign. It suggests that you have responded to the treatment well and that you will continue to respond well. There is a long list of available treatment options for you. Hang in there. Hope your pains get controlled soon and well and you have speedy recovery form your surgeries and the next treatment effectively shrink the mets in your bones.
Annie, Happy 50th Birthday and many many to come!
Romansma and Hummingbird, my positive thoughts your way. Keep digging!
Deanna and Christina, my best wishes with your treatments!
Everyone else, Happy Friday!
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thanks all
Annie - Happy Birthday !!!! Hope you enjoy it
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Patty, gentle hugs, sorry you're back in hospital but I hope that the treatment will help you. Glad to see you back here. We were all worried about you!
Happy Birthday Annie!! We have to celebrate each & every one of them.
Good day to everyone else! Cheers, Dee
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Patty, so good to see your avatar and news, but kind of shocked to hear you're in the hospital again, even for planned surgery. Oh, my... you must be so worn out! I couldn't agree more with Hope that you need to focus on YOU -- and in a positive way. I'm sure everything they did will make a big difference in your pain level and comfort. Just hoping the healing goes quickly for you. And I'm sorry about the progression news, and hope a change in meds will resolve that and banish those dark timeline thoughts.
Annie, HAPPY BIRTHDAY!!! I hope your day is full of everything that makes you happy. And here's to many, many more!
Myra, hoping to see another baby photo soon!
Well my UCLA onc finally wrote back that my 7/31 scans showed "worsening of my boney mets" since my previous scan, which was only 4 mos. prior. Absolutely no surprise based on my TMs and increased pain, but still frustrating to realize that things can turn from stable (in March) that quickly. Clearly Anastrazole quit working for me much sooner than I wanted to admit.
Happy Friday, everyone! I hope we can all enjoy the weekend. They're predicting a toasty 117 here in the desert, so we're hoping to go somewhere cooler, if only a day trip or two.
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Oh Patty, so many procedures all at once, I can't imagine. Try to rest and once you are recovered you will probably have a big decrease in pain. Like the others I think you will probably respond well to the next tx. Between that and less pain things should be a lot better soon, and definitely for longer than another summer! Take it easy, Heidi0
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Hi Ladies,
I've been put on a chemo pause for at least 3 weeks. My doctors are trying to figure out what is causing me allergic reactions. Will return to boards when this gets worked out. Till then good days and good results for everyone!
Cathy
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Patty- so glad to hear from you! I'm so sorry for your pain and progression. That sounds like a huge scary surgery but I understand your reasoning of 1 surgery 1 recovery. I'm hoping like the others that this surgery does the trick for the pain in the long run. And as for progression, I'm almost jealous you got 2 years out of a treatment. I barely got 2 months on Arimidex before we had to switch bc my tumors were growing larger on it. So I'm sure you will get a nice response from the next treatment as well. And I know it's scary but at least it's still just in your bone? I am glad you were able to make wonderful memories on your vacation. Hoping for many more for you.
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Happy Birthday Annie! Have an awesome day!!
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Annie - Happy birthday!
Patty - great to hear from you but sorry to hear of progression. And hoping that surgery brings you relief. Sending good thoughts your way.
Deanna - damn! Sorry to hear progression is confirmed.
This weekend is DH's birthday, and so we're headed to astronomy camp for the rest of the weekend.
Sending everyone hugs.
Terre
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Patty - so good to hear from you - we were worried. Glad you had a vacation with the kids. I'm so sorry to hear of your progression, that must have been quite a shock. And that surgery, all at the same time, you need to rest girl. Will you be starting Faslodex with Ibrance? My Onc is quite impressed with the results of this combo. We're here with you.
Deanna - Sorry for your results as well - good thing you already started new tx.
Annie - The BIG 50! Happy Birthday! Enjoy, and what a nice gift you just received with your results.
Good week-end to all!
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