Bone Mets Thread
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Deanna - Goodness. Rough morning. Needed that.
Faith - I think we'll have figured out the SE's in 5years. It's very important to keep pulling the string on your calf pain. There's something. I've believe you tried most of my tricks, so I won't suggest solutions.
>Z<
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Deanna. Great quote. We just need to keep moving on as best we can!
Please tell Carole I'm thinking about her all the time
Babs
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Sorry about the scan results Wendy. As a baldy, I'll tell you that people are super nice and sometimes you get extra or free stuff. I'm milking it for all it worth and even managed to have some fun with it at my own expense
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Illimae - LOL!!! And do take the free stuff. There are some upsides ... so take it where you can.
>Z<
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Lllimae omg that is genious! Love it so I figure okay it's just hair and I've basically had the same due for twenty years so a change isn't so bad. Always wanted to try different colours and hell its going to be summer so I'll have a brown head or a burnt one. I won't have to buy shampoo or conditioner for a good while that's something. Lots of perks if you look really hard for them and I'm a big supporter of pulling the cancer card as often as it will works.
You guys are a weird addition to my family that I never in my dreams thought I would have. Woman can be mean to each other but I have never , not once seen that happen here. The love and support is palpable through this thread and I thank "whoever" my lucky stars to be a part of it.
Posted this yesterday on Facebook and loved it
When Michael first heard the words "stage IV" he automatically thought "terminal." - He decided to not let that define him.
Follow Michael on Wisdo - https://wisdo.com/l/gEI9Kwr6
I hope it works
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Wendy ~ Micmel stands up and says. "Pulls cancer card whenever,wherever, I can." Hey I am right there with you! It's not like it's not a truthful thing. Let everyone pamper you and adore you!!You'll look amazing either way. 💜💜💜 you're a beautiful strong woman. Keeping you all close in prayer. ~M~
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Wendy, what disappointing news. As my DH always tells me 'think of this as just another bump on the road'. Letrozole didn't work for me either. I pray the Taxol will be the treatment for you and you will experience healing. Blessings....
Diane
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Thank you, Deanna, I think we all need to take action and kick this lousy disease to the curb and focus on living!!!!!
Diane
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Deanna, Love the post. I loved Liz Taylor, she had such hutzpah! Great quote...
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Deanna, your post came just at the perfect time for me. I will use that quote in my head as I move forward next week to new treatment. Had CT yesterday and scan shows mets are in my lumbar, iliac, ischium, pelvis, two spots on my liver and a good part of the thoracic spine which have been there but now have progressed more. So I'm now on to Ibrance and Femara. I'm fortunate to have all of you, a great MO and now a great cancer pharmacist and supportive family and friends. The hardest one to tell was my son who lives so far away. I had a good cry after talking to him and could hear his voice waiver as he talked to me. I will head over to Ibrance thread where I know I will see some of you and that's comforting. I have questions!
Good weekend to everyone as we all move forward with our lives. You are the best!
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Linda~ hugging you gently. I am soon to scan after six months on ibrance, and like us all,I pray to have good results. The reality is, we just don't know. I will hold you in prayer. As I do everyone on this supportive sight, I view as one of those gifts that cancer did bring, believe me there are not many. As I am sure you know. Please stay strong with us. ~M~
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Linda,
Yes, gentle hugs and many prayers. I hope you have great success with Ibrance and Femara!
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Linda, I hope and pray you have a similar run on Femara + Ibrance as you did on Faslodex! But I admit to a few tears just now reading your post, probably especially because I think our sons are close in age, so I keenly feel the bond and emotions.
Praying for us all and for wisdom for our oncs and the researchers working to improve our treatments...
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Linda,
I am so sorry to hear of these new results. I am praying that you get good results on the new medication plan.
Hugs and prayers,
Ronnie
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hi ladies, I've just past a year with bone mets (femur and hip) er+pr+her2-. I was first put on arimidex and had rads. 3 months later it had spread to spots spine and sternum and I developed plueral effusions. Went on Abraxane for 8 cycles every 3 weeks. It cleared plueral effusions and got me stable with some improvement. I finished at Xmas and was put on aromasin which onc didn't seem too convinced about. Had scans, results on Monday. My question is. I'm expecting progression due to increased pain in new areas. Ibrance is available to me now. I'm just wondering if anyone had success after 2 failed hormones. It would be with femara. I have heard good things on this thread but wonder if I'll benefit after 2 failures. Or is it time for Cape (chemo tablets). I would appreciate your thoughts ladies. It's a stressful business as you all know!
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You might consider chemo first, because it works faster. Ibrance/letrozol work slowly. I/L may be better for holding down the fort than responding to advancing cancer. Second, chemo can re-sensitize cancer to hormonals. Like you said, you've been through two hormonal treatments, it's likely that your response to hormonal will be, at best, weak. Doing a bit of Xeloda or other treatment can strengthen your response to hormonals in the future. They have figured out chemo dosing a bit better, it can be very easy.
Finally, there is a third CDK 4/6 inhibitor, abemaciclib, coming out later this year or next year, that looks like it will stronger. It's also proven to be effective after chemo . What we don't know is whether abemaciclib will do much if you have already taken Ibrance (the first CDK 4/6 inhibitor to be released. I take Ibrance, but if I could hold on for abemaciclib, I would.
In your shoes I might get the cancer controlled with a chemo and hold out for the strong CDK 4/6 inhibitor coming along. To be clear, I am NOT talking about Kisquali (ribociclib) which appears similar to Ibrance in efficacy.
Best,
>Z<
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Lillymillie, when I had progression (bone only) after 18 mos. on Anastrozole (Arimidex), my UCLA onc said that because Anastrozole had failed me, I would be better off going to something that works by an entirely different mechanism. At the time, Ibrance had just been approved for use with Faslodex, so that was the combination she recommended, and it worked for me for another 19 months.
So to answer your question, from my experience and from what I was told, I do not think a third A/I is a wise move at this point. Whether or not you would be better off with chemo isn't assured, but anecdotally, when Faslodex works (either w/or w/out Ibrance), it seems to work for a fairly long time -- often years -- without lasting SEs or damage. IMO, chemo -- including oral chemo and/or a light dose -- is harder on us than non-chemo meds, so if I was in your situation, I might ask your onc what he/she thinks about Faslodex or Faslodex + Ibrance (assuming that's approved in the UK). My other thought is... since Abraxane worked well and was still working when you were taken off it, are a few more doses of it possible, IF a change is needed, to hopefully get you back to where you were, before moving onto something other than another A/I? Deanna
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After just two weeks on Faslodex and Ibrance my tumor marker went from 164 to 140. Letrozole didn't work for me.
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thank you kindly for your responses. I'm coming to the same conclusion myself. I dug out my second opinion for a leading expert in London from last September he said if I had a prolonged period on an ai we could continue with further like Ibrance. He had originally suggested letrozole first after my Abraxane but my onc gave me aromasin hoping to keep Letrozole for the Ibrance (at time it wasn't approved). It's noted that I did ask him about the Fasodex combo but that has not been approved yet (Ive heard good things about that) we can only currently go paloma 2 and 3 settings. If I show no sensitivity I should try zoleda.
Z that's interesting about the CDK 4/6 inhibitor. The guy in London mentioned there were 3 in the pipeline. Ibrance was the first and was not approved at that time. It's takes so long here to get approval. Have no idea how Brexit will affect our chances of getting drugs. Possibly slower as we have less negotiating power now we decided to go it alone (another bloody nightmare!!) Anyway will follow information about them.
Deanna yeah for some reason they don't use Abraxane over her for longer that 6 cycles. I had to fight for 8. I had a very good response and I had heard that some of the ladies on her had used it for up to a year. I tolerated it well but he did say we can revisit it again down the line. I agree with you that a third ai isn't useful at this point. I think my only option would be zoleda as the Ibrance fasodex is not an option and maybe I wouldn't be given it anyway if I fail this ai after 3 months.
Diana that's great that combo is working well for you. I hadadequate notes about it and asked but unfortunately not available my side of the pond yet.
Thank you sharing. It is so incredibly helpful to share thoughts, ideas and experience. Hopefully results won't to too horrifying on Monday night. Thank you all and best wishes x
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Linda, sending you gentle hugs and prayers that your next line of treatment will be successful. Blessings....
Diane
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Lilly - keep us posted on the scan results and treatment decisions. no right answer for everyone, but if you think through the strategy and ask questions, you will get to your answer.
>Z<
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Lillymillie... One more thought... What about Faslodex alone? It's been a mainstay of bc tx on it's own here in the US for many years, with some women getting multiple years on it way before Ibrance came along. Not sure it's right for you at this point, but just wanted to mention that it doesn't have to be combined w/Ibrance to be effective in some situations. Deanna
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thanks Z (I follow your post, might join up on your fitness thread, I like to keep moving!) Will let you know tomorrow night. Yeah Deanna I have heard great thing about faslodex, I'm just worried that I may not be showing much sensitivity to hormone treatments. I think I just wanted to someone to say 'oh I failed a few but this one did brilliantly!' I really don't want to close the door to hormone treatment at this early stage! Thanks x
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Lillymillie, I think (not entirely sure) you can always double around and go back to any anti hormonal tx you skip. And as Z suggested, perhaps being off them for awhile might resensitize those hormone receptors for a future shot with whatever you don't try now.
One more thought... Have you had a recent biopsy of your mets, especially something in a new area? Perhaps your bc has lost some of its estrogen sensitivity, in which case chemo does sound like the most logical option. Or have you had any advanced genomic testing, such as the Foundation One? My onc isn't big on the latter unless and until we start becoming drug resistant -- mostly b'cuz these tests are expensive and they keep getting better, so it makes sense to wait until you need it to help direct tx choices. But just one more thing you might want to ask about.
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Lindalou, I am sorry to hear about your progression. As you should already know, I am praying for you and keeping you in my thoughts. As you are aware from reading experiences of people on this thread, Femara and Ibrance have been a good treatment choice for many. I hope the new combo knocks out those cancer cells while giving you no nasty SEs. Sending you a big (((HUG))).
I feel like we have a trend towards progression lately. I am glad that everyone is keeping us informed, and I encourage you all to continue to keep us updated. From a personal experience, I must say that I have found the support here invaluable when I have received bad news. For those of you with good news, please tell us about it. I know that some of you feel guilty posting good news after someone has reported progression, but I think I am safe saying that we all like to hear positive news and are encouraged by it.
Lynne
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You are right Lynne, I NEED to hear good news. On that note Lilly, I did very well on Femara and vibrance except my liver enzymes went through the roof, changed me to Faslodex which didn't work for me. Now I have been on Arimidex and lower dose Ibrance for about 9 months and doing pretty well. Liver mets have shrunk although a few small spots have showed up on bones. So I guess no one ever knows except trial and error or success. I sure hope we can circle back around to AI's!
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Linda,
Just winding down from a busy weekend and catching up on BCO.
Praying RIGHT NOW, my friend.
Louis
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Lindalou I'm so sorry we need slowly some good news on this thread. So I am debating going to the hospital don't want to I have fever 38.05 and feel terrible. I'm not getting any treatment yet most likely Taxol will start Tuesday. I just hope I'm still alive by then. I was told by the doctors line that I need to have fever of 39 for over an hour then I should go to the hospital.
I can't eat anything because of the pressure on my stomach from my liver so lots of fluids and hope. I have to say I'm very afraid right now. This went so fast..
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Wendy, I am praying for you. I know your fear too well. Hugs.....
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