Bone Mets Thread
Comments
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"I joyfully read of one of us having 12 years of stage 4 and I sorrowfully read this week of a wonderful gal ending her journey on this earth and becoming a BC angel."
Carolyn,
Great post and I love your words, which I've quoted above. It really sums up an important part of being on the stage IV forum, for me. I have learned to celebrate and to mourn, sometimes in the same day. I have found a level of acceptance, not of the disease itself but of the reality of how it effects the lives of an amazing group of women. So, I accept our reality, the triumphs and the tragedy and fervently hope that the future sees the defeat of this scourge.
Caryn
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Interesting article I ran across today. Sums it up pretty well.
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Well, just when I had decided that no news was good news on my 7/25 CT, I had a not-so-good call from my onc's PA yesterday. What I jotted down in my state of utter disbelief includes... "... we need to see you... boney disease is worse... new area... more confluent (what had been scattered is filling in)... should repeat CA27-29..."
I feel so blindsided by this because I have been feeling so good -- not even on pain meds these past few weeks -- and I was absolutely certain my disease was a lot better, especially since my last CA27-29 (in May) was down from 155 to 119 and they were still using the term "scattered" to describe my bone mets on the MRI I had in May. So I'm headed back to UCLA on Tuesday and I have no idea what she will recommend. Is she likely to switch me to another A/I? Has anyone been in this situation where Anastrazole (specifically) didn't work for you but another one did?
Feeling pretty deflated... Deanna
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Deanna,
I am so sorry that you got this news. Go ahead and feel deflated for now but know that we are all behind you. It may sound cliche but as soon as you have a new tx plan in place you'll feel better and march on. I have only switched AI's because of se's so I'm of no help there but I know someone will be along soon. Thinking of you.
Caryn
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Yes, I started with Arimidex which kept my bone mets sleeping for two years. Then I was put on Tamoxifen which worked for two years even though I was past menopause. Then on to Faslodex which worked for two years. So I hope your next med they choose for you will also work. Best of luck.
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Thank you, Caryn. Are you feeling better since you've switched A/I's? Hope so! And Sue, my onc (who is a wealth of statistics) had told me (when I specifically asked) that the "average" run w/an A/I is only 9 mos., but l know several women, like you, who have gotten 2+ years out of one. So 7 mos. is just disappointing, especially when I truly thought and still feel like I'm doing great.
Oh, one more question... Are there any supplements that negatively impact the efficacy of Anastrazole? I take quite a few -- although nothing strange or unusual --and am now wondering if something like Curcumin or too much of an anti-oxidant could have been diluting Anastrazole's impact? Agrrrhhh!!!! The second guessing! I'm even questioning if my generic Anastrazole is what the label says it is or one of those "fake" (worthless) drugs you hear about.
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So sorry for your crap news, Deanna. Sending good thoughts your way and hoping the new AI kicks it to the curb.
Hugs,
Terre
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Deanna, I have no advice for you, but am so sorry to hear your news & so hard to wait until Tuesday for recommendations. You helped me so much when I came back to BC.org. When I was first diagnosed, like you, I was feeling the best I had felt in years. (gentle hugs) Dee
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Deanna,
So far the se's of Letrozole have been gentler than Anastrozole but I didn't start having bad se's from Anastrozole until more than two years in to it. I take generics and although the fillers and inactive ingredients may differ from the name brand, I am confident in the active ingredients. I think that as long as you are getting your scripts from a reputable pharmacy, you have nothing to worry about.
Do clear any supplements with your mo. I take turmeric, melatonin, vitamin D3, glucosamine/chondroitin and calcium. Please don't second guess what you have done or didn't do. You've been on these boards long enough to know how unpredictable this disease is. Be kind to yourself.
Caryn
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Question, found out in March of this year that my breast cancer had spread to the bones. Treatment of Faslodex and Zometa started in April. My bone scan of this past Monday showed a progression of the disease. Is this normal? I feel relatively good compared to what the report reads. Looking for some answers to arm myself when I follow up the with oncologist in a week. ( I got my radiology report from the hospital instead of waiting 2 weeks, I just needed to know). Thanks0 -
donutswife,
Sorry that you are joining us here, but we are a rather great group. There is no normal or predictable when it comes to progression or lack of. It's impossible to predict how any one person will respond to a given tx. I know it's hard not to worry, but your mo will formulate a new tx plan and it may work like a charm. Take good care in the mean time.
Caryn
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Deanna, What a tough thing to face and assimilate. As you get more info, keep us posted. I think the question about anti oxidants makes sense, and agree that looking in to that needs an attitude with a loving touch, not a sledge hammer. Bone mets are strange. I am still learning which of the sensations are mets-related, and where the sites are that cause aching. Some sites are painless. To be feeling better and off of meds at the time of a scan that showed progression, I would look very carefully at the quality of the scan, the skill of the technician, and the name on the scan. They are probably ok, but big facilities have big staffs, and humans do poor work occasionally. Big hugs to you.
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donutswife2, I'm so sorry about your re-dx, and also really sorry to hear about your progression. It sounds like we're somewhat in the same boat, so I can absolutely empathize with the shock of finding out you've had some progression when you've been feeling so well and and clearly anticipated much different news. It sounds like we'll both find out more next week. I'll be thinking of you.
And Terre, Dee, Caryn and MameMe, thank you for your comments. It helps a lot to know you get it. MameMe, as far as a poor scan -- this one was @ UCLA, where they're big, but usually very picky about quality. In fact, they add a quality disclaimer when reading scans from anywhere else. But I know what you mean, and, if anything, I've wondered if the quality of the scan I had locally in December that revealed my mets is an issue. Back then, I was very sick and dehydrated and they couldn't start an IV and after multiple attempts finally resorted to a butterfly needle and manual push for the contrast. So I've been wondering if the poor quality of that earlier CT might be the problem. Maybe it missed stuff. Who knows? I guess I'll learn more next Tuesday. Deanna
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Deanna, so sorry to hear of your progression...........hearing that word is like a kick in the gut. I started on Arimidex and after fifteen months had some progression and was changed to Femara which got me to NED and I'm still there almost four years later. I also take a variety of vitamins and other things including curcumin and boswellia.........I'm waiting for the other shoe to drop.......lol.
Never second guess what you are doing, this disease has a mind of it's own and will do and go where it chooses.............we have to be prepared mentally to follow, change treatments in the hope that this is the one that has a magic bullet for us. Here's hoping the news is not quite as bad when you see the doc and please let us know how you go.
Doughnutswife2, sorry to hear that you also have had some progression. It is unfortunate that this disease plays havoc with us but at least we are lucky enough to have a lot more treatment options available.
Love n hugs. Chrissy
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Thanks ladies for the input, it is greatly appreciated. Hopefully we all have a long time in the upright position :-) Never in a million years did I ever think I would be in this situation. I look at my grown children and grandkids and can't imagine not being in their life. Those are my fighting words to this nasty disease. Everyone have a blessed day.
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Deanna and donutswife2 I am so sorry to hear of your news and I hope the words of Caryn, Chrissy, suecolo2 and Mameme have given you some relief. It's always good to hear of ladies that have gotten more than 9 months from tx
My thoughts are with you both.
Lisa
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Deanna and donutswife2, I am so sorry that you are going through this, especially when you thought things were going well. Thankfully, there are other treatment options available, so we are all hoping that a new plan will be just what you both need to stop this progression. You are both in my thoughts every day, and I am holding your hands for support.
Let us know what you find out next week. Gentle hugs, Birdlady
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I've been lurking for the last week instead of posting, but I too am sorry to hear about the news, Deanna and Donutswife2. However, as everyone as said, there ARE lots of treatment options out there and you will each find one that works. As I read all of these posts though, I just feel so grateful that we all have this forum and these threads and each other. Our oncologists, as great as they may be, just aren't enough.
Thinking of both of you - please do keep us posted.
xoxo
Andi
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The temperature hit 102 when I went for my 4th shots of Faslodex. Everything went smoothly, the girl even found a new location to draw my blood. After shots, I went to renew my driver license. The new one is valid for 6 years instead of 4. As I walked out of DPS office, I was praying, I am not greedy, but please give me another chance to renew my license!
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Cling - sending driver's license renewal good thoughts your way. I hope to have to renew my US passport (2017) and NZ driver's license (2019). I think you've helped me set a good goal!
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That's a great goal to have........I must look up when my passport and license expire and aim to renew both at least a couple of times! Hoping we all make the goals we set.
Love n hugs. Chrissy
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Deanna, sorry to hear about your disease progression. I am a novice, and just beginning to understand the basics of bone mets. I feel like I've been on a roller coaster ride since I learned of my progression to stage iv. I've been most concerned about bone mets, although I have it in my lungs and a spot in my liver. The bone pain hurts, and I learned from a recent MRI that C7 is fracture and in the middle of the fracture is a small heroma or blood clot. It is slightly better since I'm not walking as much, or work as hard My bone mets has completely filled in the c4 vertebrate. I have smaller ones, and a good size one in my left femur, and in soft tissue as well..hip area too. I'm hoping the radiation will kill most of it. I heard the bone will restore itself? I hope so.
It is discouraging to hear that you ladies are doing bone treatment and other treatment and still have progression of the disease in the bone. Isn't the bone hardening drugs such as folsamax supposedly stop it at least in the bone?
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hi y'all, question, my dr said my Aromasin is not working as well as he would like. I have no tumors in bones or organs (except sternum which is now necrotic) however I have a few new nodes with disease so now I have about 10. Soooo, he is keeping me on Aromasin and added faslodex. Has anyone taken two at once?? Thank you!
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Kate, I take Anastrozole(Arimidex) and Faslodex. I have been on this regimen since October, 2013. So far there has been no progression. I just had CT scans and full body bone scan, so I feel blessed that this medicine combo is working for me so far. I hope that you will get great results, too.0 -
thank you bird lady! I was concerned when he said I had to be on two! I had not heard of that. You have made me feel better! And there doesn't seem to be any SE from the shots!
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Hindsfeet, as far as I understand it, the bone strengthening drugs such as Fosomax and Xgeva strengthen our bones, hopefully making it harder for the bc to grow there. I don't believe they actually "treat" anything -- just hopefully slow down progression. But I would be very interested if anyone has a quick research reference as to how much of a difference they really make. Stats, which are always quoted in relative vs. absolute terms, can be so misleading. 50% sounds like a huge deal, but a reduction from 1.5 to 1 recurrences or progressions out of 100, for example, sounds very different than 50%.
Also, can someone explain to me exactly what Faslodex and Affinitor are? Are they technically chemos or something else? And is Affinitor always given with Aromasin, or is it given with other A/I's? I'd like to have a better handle on this in case either one comes up when I see my onc tomorrow.
I hope everyone's Monday is off to a positive, pain-free start! Deanna
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Deanna, I can only speak of faslodex, it's a hormone therapy. I am taking it with Aromasin. I would think it could be given with any of the HT's. The dr told me that Afinitor is not HT or chemo, he told me not to have him try and explain unless I end up on it. He said it is a complicated drug with a lot of side effects. I hope my new two ht regimen works for a ling time !
)) hope this helps a little!0 -
Deanna, good luck on your onc appt.! Faslodex is an estrogen receptor degrader so a bit different from both AIs and Tamoxifen. Afinitor affects cell signalling pathways that cause resistance to hormone therapy. It can restore sensitivity to AIs or Tamoxifen, maybe Faslodex as well. Bisphosphonates and Xgeva affect the host environment (our bones) and so helps to prevent or slow the spread of mets to surrounding tissue.
Kate1974 and birdlady, two hitters sound better than one! They work in different ways, so could be there's more synergy.
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Does anyone have any experience with a drug called Entinostat (in combo with Exemsestane)?
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