Bone Mets Thread
Comments
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Yes, I was asking about the combination of Faslodex and letrozole. My first treatment was Faslodex and aromasin which failed after 3 months and I went on to chemo, taxol. I'm kind of surprised to be on this combination now as I had progression on faslodex. Onc was going to px Afinitor next then thought taxol might have killed either my oestrogen receptor cells or something on them (unclear what he meant) and decided to try this combo and give me a break from chemo. Anyone else hear of such a thing? I thought this would be much easier than chemo. It is easier but I still am soooooooo tired. I have all the stiffness, aches, pains, hot flushes... I am hopeless at differentiating pain, can't tell which is bone or SEs. Any tips for managing? I take letrozole first thing in the morning as some here advised. Thanks
Hugs to all
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Kate, how long is the interval between each dose? If it is short, you might want to give your heart a break. If it's long enough for the heart to recover some, you might be able to go with your onc's suggestion. I am by no means any expert. All I could contribute is some statistic thinking. One important strategy for fighting mbc is to stay physically strong. You have a long way to go. It might no be wise to damage your heart so early. Also, since it's not 100% clear that the A red devil is the decisive element of the combo, I feel the cost might be too high. Could you ask an expert for second opinion?
Lynnwood, no soft tissue involvement is a great news!
Romansma, good luck with your seeking androgen treatment. I admire your resourcefulness.
All, have a painless day!
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hi all,
Thought I would check in. I'm in Vancouver visiting my friend Susan, it's very difficult knowing that this could be the last visit before hospice. Tho she seems like the old Susan she doesn't want to go out so we brought take out in and had a 4 hour visit before she had to have a nap.
We're going to run up to Keremeos on Wednesday to get her some OK peaches and tomatoes which she is craving. Good thing we like the drive up there.
I have my rads date, August 5th. Fingers crossed for it working on the pain.
Welcome to the new, sorry you are here, and best thoughts to everyone else. Cheers, dee
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Katie
So sorry you are faced with such a difficult decision. I have pre existing heart disease (before breast cancer dx.) My ef is stable between 45% and 50%. It is treated with medication and does not affect my life. I did have 4 rounds of adriamycin despite heart disease because my cardiologist said "Your heart is a second horse in a one horse race". So I wonder if you could consult with a cardiologist to see how they would messure your risk.
Good luck to you.
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Katie, I read on another thread ( I can't remember which one) about someone who was having the same problem and she was referred to a cardiologist who prescribed medication and cardio rehab. She was able to get her last two treatments as her heart function improved. Good luck!
Dana
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There is so much knowledge and information here. Sorry that I thought Faslodex was an AI. I am still confused most of the time. But I am glad to see that some have used the combo or a similar one and provided the information that was sought after.
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good morning.
Keeping it short. Still fighting this darn pain without sleeping all day. Miserable I guess is the best word.
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So sorry to hear about the continued pain Patty. I had two years of this before finally getting relief. It's so debilitating and demoralizing. I hope you can find some kind of relief soon.
Amy
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Yes I 2nd what Amy says Patty. Sure hope better days are ahead for you.
Cathy
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Kate, so sorry to hear about your concerns. Potential heart failure is nothing to mess with. You not only need a cardiologist, you need a cardiologist who is experienced with mbc patients and chemos, so will be familiar with your situation and will work with your onc to ensure the best plan going forward. Your onc should be referring you to one. And while the experience of others can be extremely helpful and supportive, this is not the time to rely on someone else's experience to guide you. But for what it's worth -- knowing as little as I do about your overall health, age, etc. -- if I was in your situation, I probably would not continue with Adriamycin. Taxotere is a very powerful drug, and for all we know it could be the reason for your great response. Plus, I'm under the impression that heart damage from "A" can continue or show up well after your actual infusions. Just my two cents worth.
Aoibheann, when I read about all the various suggested combinations people are on, including the suggestion that you do Faslodex and Letrozole, all I can ask is, where is the research to back up these suggestions or recommendations? Or are some of our oncs merely shooting in the dark, hoping one of the combos will work? To be honest, it often sounds that way to me. And not saying that thinking outside the box isn't good. It is!!! But I am personally much more comfortable when my onc can explain to me why she's recommending Faslodex+Ibrance (my current situation), for example, over any of the other A/I + targeted therapies, or doubling up on an A/I -- especially one that's already failed. Not sure I'm onboard with that kind of "experimenting," UNLESS there are no better known options based on the research. Again, just my two cents worth.
Patty, I'm so sorry about your pain level. I have also been in increased pain the past few days -- although nothing like yours -- and boy, it sure colors your view of everything. My heart goes out to you, and I hope & pray your onc can figure out something better for it. Did you ever think about checking with an NCI-designated comprehensive cancer center to see if they could offer you anything you're not already doing/getting?
Off topic, but since someone mentioned going to a Taylor Swift concert... A friend of mine who works as a stage hand at a major venue reports that she is the kindest, most well-liked performer they've ever hosted. I love her music, but was surprised to hear that about someone so young and successful, vs. some I would have thought would be nice but were deemed the worst. Evidently, Taylor is head & shoulders above many in the way she treats both her own crew and people working at their venues.
Can't believe it's the start of another week. Friday is my CT and bone scan. Following the lead of some others here, we've booked a hotel near the beach to lessen the stressful drive, especially since the last time I had a CT I had a bad near-passing out episode the next day, so we're going to try to take it easy getting there and back this time. I've probably asked this before, but does anyone do anything to detox all that radioactive crap? I know about drinking lots of water, and epsom salt baths are suppose to be good. Any other tips that might help avoid a repeat of what happened last time? Hugs to all!
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Hi all,
Patty - hope you get the pain under control soon. Sending good thoughts your way.
Aoibheann - I'm on Letrozole only, but can certainly relate to what you're saying regarding bone/joint pain. And trying to differentiate between it and progression/cancer pain. There are apparently (from what my MO says) certain spots where he knows it's Letrozole and not cancer. I have mets in my hips and was freaked out by a long-lasting pain just below my waist at the top of my pelvis, on the right side (in back). He knew instantly it was Letrozole - when I mentioned hip pain, he poked me in "the spot" and OUCH! Fingers, hands, wrists, knees are also hot spots for Letrozole. Maybe others can weigh in here on where their Letrozole hot spots are. At any rate, I don't want to mislead you or put you into a false sense of security - you do need to keep on top of any new pains. I had bone scans that showed it was arthritis and Letrozole, not cancer. After two rounds of that, I'm better able to distinguish Letrozole pain. I will say that it hops around - today my hands are fantastic with no pain, but two weeks ago they were in agony. So that may be a cue as well. Wishing you success on this treatment as well as pain relief. Arthritis meds (Celebrex for me) seem to help.
Welcome back, Amy!
Lynwood - great news!
Dee - glad you checked in. Sending hugs.
Kate - I have no info to offer, just sending you good thoughts and I would concur with second opinion and cardiologist.
3-16 - we want a full Taylor Swift report!
Karz, Musiclover, Tryin, txmom, Xavo, Cathy, Susan3, Romansma, Dune (and everyone I've undoubtedly missed) - wishing you a lovely day and sending good thoughts your way.
Terre
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Deanna, Best wishes for your scan and I hope that you feel ok afterwards.
Kiwi, Thank you and the same to you. (Thanks for including me even though I am what I call a part timer on this thread, lol. I skip around and try and see how everyone is doing but I find it difficult to keep up.)
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Deanna- Wish I knew some magic.
How about a relaxing massage? Good Luck.Cathy
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Hi ladies,
Patty- glad you are home from the hospital!
Hope so sorry for the tumors on your skull and I can so relate to pain and tumors growing. I literally feel my tumors growing in my neck and I know I need chemo. I really hope you are able to enjoy the concert.
To be honest, to get through a social event, I load up on Fentanyl and spend the event high, which is fun. Did that last night for a friend's party and enjoyed myself.
My second opinion is scheduled for August 3rd with Dr. Toppmeyer and one of those approved Comprehensive Cancer Centers, see I listened to you Deanna.
My regular appointment is August 5th and I will likely start chemo then- I am leaning towards pill chemo to ease myself into it rather than an infusion right now. Let's see what the second opinion says.
My cousin passed Monday and the funeral was Thursday. Awful and heartbreaking and I saw my future. Going to work on funeral and burial planning just so I know it's not a burden my husband has to deal with all alone.
Guys I get copies of ALL my scans now bc I'm tired of doctors leaving things out when they talk to me. I need all the info to process and plan.
I hope everyone is doing as well as can be expected!
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thank you everyone for your opinions! The chemo is Adriamycin. I am 41. Always had great ekg (one was done 6 months ago) so to hear of the weakness is scary stuff. Someone asked about herceptin and I had FISH test done and I am actually hers2-. Prior I was borderline. Soooooooo. I will ask about seeing a cardiologist for sure. I also agree that the taxotere alone should still give me success as I started on just that along fir first two treatments and felt shrinkage. We shall see what dr says at apt tomorrow. I'l let you all know what I decide. I personally think I'm gonna say no. I feel I have a lot of life left to live and I really don't want to add heart problems in the mix. My aunt is a nurse and ekg tech so I'm gonna talk to her also!!
I value all your opinions and love ya all like sistrs!! Hugs!!0 -
Cristina - so sorry for your loss. Just heart-wrenching. Glad you're getting a second opinion, and have a plan, but sorry you're facing chemo.
Deanna - sending you hugs and good thoughts for your scans.
Hugs to all,
Terre
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Cristine, how awful. I'm sorry for your loss and for the feelings that it must have evoked for you.
Deanna, I use chlorella. Lots of it.
Patty, sorry to be reading you are in pain. I had a lot of pain yesterday and today. It turns out I needed to take an NSAID. Yesterday, I only took narcotics. When I still had it this morning (and I had to go to treatment this morning) I tried the NSAID. And WAZAM! No more pain. I don't know what you have tried already, but this is what happened for me.
I'll be back on later. It's time to take Dusty downstairs to watch TV. hehehehe
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Hello everyone,
Dee, sorry about your friend, I'm sure she is so happy to see you. Glad to hear your radiation is booked and hoping it provides you with relief from pain.
Patty, so sorry to hear you're in pain and feeling miserable. Praying it settles down for you very soon.
Deanna, my nutritionist said to detox with epsom salts, baking soda and lemons. I posted it somewhere a few months back, I will look it up and send it to you.
Cristina, I'm so sad to hear of your cousin's passing. That had to be hard for you. Wishing you the best on the 5th, I'll be thinking of you.
KATE1974, good luck at your appt tomorrow. I'm sure once you weigh everything out you will come to a good decision regarding which treatment is best for you.
Dune, Dusty watches tv, that's hilarious but sometimes I swear my cat does too. Sometimes she stares at the screen for the longest time. Glad the NSAID's work so well for you.
Hey Terre, MusicLover, Linda, Amy, Cathy, Caryn, txmom, Xavo, 3-16-2011, Aoibheann, Romansma and Karz72 and everyone else here. Nice to hear from all of you!
Hugs, Annie
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Good evening all,
I know nothing about chemo but wishing you the best with your decision.
Amy - Welcome back!
Deanna - Will be thinking of you on Friday. Enjoy your little getaway. I usually drink a lot of water with pure lemon juice.
Cristina - Sorry for the loss of your cousin. My condolences to you. I'm also thinking of making funeral and burial plans. Good luck with your second opinion and next tx.
Terre - pain hopping around - very good description that I relate to.
Patty - Darn pain. Hope you find some better long-lasting meds. Dune - I always combine NSAID with narcotics - it really makes a difference. My pain level is not too good these days either - but better with breakthrough Dilaudid.
Musiclover - always nice to see you on this thread.
OK, it's time for pain killers and antibiotics. I have to eat with all these pills so I'll have some chocolate...
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Kate, didn't read everyone's post so I could be repeating, sorry. I have been on both, not at same time. But know that the taxol drugs, like taxotere, are also known to cause pleurisy , and edema around the heart . My left lung still doesn't inflate fully since taxotere. So they are both quiet a whammy at that same time. I would def talk to doc . There are lots of chemos out there. You can always try some other combo and still go back to the one you r doing now. I have been on sooooo many of them, so there are a lot of choices. Kinda a crap shoot, but it's nice to feel as good as good as you can during this
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Linda, you are funny about pain meds and eating (chocolate). LOL. I've noticed that as long as I am staying ahead of the pain, I like my excuses for eating a little something. Oh, but don't get behind. Then the pain makes me feel nauseous which turns me off from eating, which allows the pain to get worse, etc.
Patty, do they have any plans for better pain management for you?
My absolute polys were 11.5 this week. 2 weeks ago it was 1.2. 11.5 is higher than even the week I started chemo (and since they take that blood prior to treatment, it was pre-chemo), so I wonder if those supplements that I read about in here somewhere helped.
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This is my cousin Kris, just wanted to share a fellow met (ovarian) cancer sister. RIP Kris.
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This is a photo of me 3 years ago during chemo. Just getting myself prepared for chemo round 2 coming soon!
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What a beautiful woman your cousin was. Incredibly sorry for your loss. What adorable babies with you! And you look great - your smile is fantastic.
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Cristina,
What a lovely woman. May she rest in peace.
And you are lovely too! Is Livingston near Northvale?0 -
Cristina, so sorry for your loss. Lovely pictures. Wish you a great success with your new treatment!
Dune, Linda, Patty, and all, good painless night!
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What a beautiful woman your cousin was. Incredibly sorry for your loss. What adorable babies with you! And you look great - your smile is fantastic.
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Deleted the post because I posted it twice somehow!
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all beautiful ladies...sorry for your Loss
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Cristina, your photo of your cousin makes me want to cry. I'm so sorry. She looks so young. What a tragedy. I'm so sorry.
And love the photo of you and I assume your kids. They're adorable, and you look great, especially considering you were doing chemo at the time. And great to hear that you have an appointment with Deborah Toppmeyer @ Rutgers. I just looked her up, and her resume is very impressive! I'm so glad you're seeing her, and I'll be interested to hear how it goes! You will be in my prayers.
Thanks for the tip on using chlorella (Dune), baking soda (Annie), and lemon juice (Annie & Linda). I've read that chlorophyll is important to detoxing, and I guess chlorella must be especially rich in that.
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