Bone Mets Thread
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Congratulations Dee! The travel time is inconvenient, but the scenery must be wonderful. Glad you and Wendy could meet up. Most of the time I just imagine who you all are and you're probably even cooler in person!
It seems like Ibrance and Letrozole have been helping many of us remain stable. The SEs are manageable and most days it still feels like I'm living my life while waiting for the other shoe to drop.
Carol...Glad things are looking up!
MomATT - Dani's experience is the reason we all have to be our own advocates...
I came in off the emotional ledge last week and locked the window behind me. My doctor doesn't seem concerned...said I'm doing great, which is nice to hear. Still planning to keep monitoring the odd things that happen and trust my instincts (a la Radical Remission). When it gets to a certain point I'll push the doctor, but for now the top priority is enjoying the summer.
Think of you all often and praying for those who are suffering and facing progression...you are demonstrating amazing courage and lighting the path for those of us who will follow you. Wishing you peace.
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Good morning all,
Dee and Wendy, so glad you got to meet!
I got a message from my nurse yesterday saying all the documentation and the request for participation in the Ibrance trial has been sent! Tamoxifen was not a deal breaker. Dee, now I get a taste of what you went through waiting, will I be accepted or not... keeping fingers crossed.
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Good morning all!
Linda, oh I'm so happy that you are on track for the trial, but oh the waiting is horrible. I will keep fingers, toes, everything crossed that you make it in. The trial here opened up another 10 spots in a city just outside of Vancouver, so it seems like they are allowing more than just the original 140 spots across Canada, she also said that it could open in Victoria, & could transfer my file, but I love this new onc so much, I'm scared to go back to dragon lady.
Kathryn, glad you closed & locked that window. It's very hard to do, I don't think others get how you are always waiting, waiting for the next thing & being so anxious about it. ((hugs)) Good to hear that you're doing well, enjoy the summer!
MomATT, Dani is so lucky to have you there for her.
Amy, It could be all the traveling, but the last 2 nights I have been so tired, I'm blaming the Ibrance!
Carol, I hope it works this time, didn't I read that you had to go off it after 2 weeks because of low blood counts? As I said to Lindalou this morning, I've had a hard time keeping up with everyone, it's been all about me, me, me!! LOL!
It was funny meeting up with Wendy, I have rarely ever met a woman who is taller that me, I'm 5'10", she towered over me! This beautiful statuesque blonde & lovely too.
take care everyone, cheers, dee
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dee and lindaE. Hoping ibrance works and is easy for you. It worked for almost a year for me.
Waving hello to all
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Hi Patty! How are you doing?
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Hello to all,
Just popping in to say hi and to let everyone know I think of you all daily and keep up with reading but have not been posting much. So glad to hear Dee and Wendy got to meet, I so wish I could meet you all! This is such a wonderful group of amazing people, I feel like we're all friends.
Kathryn, happy to hear you came off that ledge. I've been there too, more than once sad to say but as long as we don't stay there. Happy to hear you're doing well.
Patty, so happy to see you posting here again, you were missed! I hope Xeloda is treating you well but kicking cancer ass!
Hugs and love to all, Annie
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Good morning ladies,
So this is the third time I'm trying to post let's hope it's the charm. Kept getting distracted and just couldn't get it finished. Yes a very positive side to cancer ( nice there is one) is all the great people you get to meet that you never in the world would have. Such a sweet couple Dee and her lovely husband was a fun visit. I'm hoping for you that you can finish the trial in Victoria that would be great.
Linda sounds like your in too consider my toes and fingers crossed as well for you. With so many appendages on your side you are for sure getting in😀
Patty always great to hear from you , I hope you are having the best summer. Up here in Vancouver we are feeling the effects of El Nina or Nino whichever so the weather has been sucky. Just enough sun that you dont loose hope but never enough for a bathing suit.
Kathryn you are right my priority is to enjoy the summer it's hard though when it is interrupted with CT scans and the accompanying anxiety. Positive thoughts positive thoughts...
Terre thinking of you in your new house with all the kitty's hope you are well.
I'm thinking about all you ladies and wish you all the very best. Still reading Radical remission I'm making this one last every page gives me hope and gives me something to focus on.
Wendy
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Good morning,
Patty, Dee and Wendy - thank you for your good wishes.
Patty - waving back! How are you? and how is Madame X treating you? Is your sister still visiting?
Dee - Victoria would save you some travelling. Any feedback on the Victoria clinical trial MO? No easy decisions huh? The waiting has one good aspect, I can enjoy the summer without new SEs. How do you feel after a few days of L/I?
Wendy - what is the frequency of scans in a clinical trial? Positive thoughts if you have some coming up.
Annie - lovely to see you here.
Hugs all to all the wonderful ladies on this thread!
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Hi Everyone,
Amy could your fatigue be from the Ibrance?
Kathryn, I like your description of the emotional edge and good to hear that you are away from it for awhile.
Moma, How are you and Dani doing as you get more and possibly different information.
Nice that Wendy and Dee could meet. Meeting a bco sister is truly the best.
Carol, I remember a post or two back that you mentioned feeling a non connection with your friends at lunch. I too have had that happen to me. It's unsettling and isolating. Are you feeling better?
Lynne and Christiana...let us know how you are doing as well.
Linda, Anxious to hear how your trial acceptance goes.
Good Weekend to all....
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good morning all. Great to see the new post and how everyone is doing.
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Good morning all!
Hey Patty, good to see you here again, you really had me scared for you. Hope Xeloda is good for you.
Day 4 of I/L combo, I am finding that I am very tired at night, I take it with dinner around 7:30pm, within a couple of hours my tongue is sore & my eyes are snapping shut! But by am, my tongue is much better, now whether this will continue or not, who knows?
Linda, it's a coin toss about Victoria, we don't have anyone to stay with there, so it's hotels, but closer. Vancouver, we stay with friends, but travel more and I love my new onc. I don't know who the trial onc would be if a trial was started there. So at this point, it's Vancouver.
Wendy & I have the same onc even though we're on different trials & we discussed her shoe fetish. Dr Christine has some fabulous shoes, I gave her a bad time & she says it's her only vice ?? she doesn't like to travel, so she buys shoes & quite obviously has a great place for pedicures.
Good to see so many here today, Annie, Patty, The Linda's, Wendy, Kathryn, Carol, Mom, Babs, Amy.... Have a great weekend. With all the rain we've had I'm going to need a whip & chair to tame the garden weeds.... take care all, cheers, dee
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Linda the trial I'm on has me doing ct scans every two months which is not fun. I think on these trials they like to keep a close eye on what's going on . This is good and bad, I'm glad someone is finally paying attention to this old body but it's very stressful. My next scan is on Tuesday hopefully I will get the results on Thursday which is really pushing up here in Canada. So far side effects have been bearable some leg pain and hot flashes that's it so far. Let's hope it's still working...
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Will be thinking only good thoughts for you on Tuesday, Wendy. Hope you get your results on Thursday at the latest, the waiting sucks.... cheers, dee
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Hi everyone just stopping to say hi and let you know I read your posts and pray/send good vibes as I read. Next week Wednesday I have my PET scan I haven't had one in two years so we'll see if Ibrance/faslodex is working.
Wishing everyone a nice pain free weekend.
Aurora
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Thanks Wendy. Wishing you the best and quick results.
Wow, this trial thing is going much faster than I anticipated. I'm meeting the trial MO on Tuesday and the nurse coordinator. Apparently this MO is a young woman, energetic and very dedicated. Plus I got the hospital closer to me! This is a screening appt and I was told to expect they will do labs, CT and bone scan very shortly. They already know about my allergic reaction to dye contrast. If I'm accepted, scans will be done every 3 months there. I wasn't nervous until I got this call. Gotta keep busy.
Edited to add - Aurora, will be thinking of you.
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Hi everyone,
I have read lots of good news here lately. It is keeping me going and makes me happy.
Dee and Wendy, I wish that you could send some of that rainy weather my way. We have drought conditions here in New England. My garden looks a little sad right now.
Last week was an up and down one for me, but things will all work out. My MO has referred me to a dermatologist because the only mole I have on my back has some characteristics that the onc doesn't like. He is pretty sure it is nothing, but I will have it checked out anyway. Isn't it against the rules for us to have any issues outside of bc?For the first time since my mbc dx, the results of all my blood tests in both the cbc and cmp were within normal range. Yay! Unfortunately, my MO called me the next day to tell me that my TMs are up significantly. The CA 27.29 went from 141 to 288. I feel great, and since the other tests are all good, I am hoping that the TMs just aren't good indicators for me. Last year they were 947 before tx began. I will have CT and bones scans, but we are still waiting for Medicare approval for bone scan. Shouldn't it be automatic for us? Office put in second request since no response from first. Ugh. Next my urologist didn't like the results of the MAG3 scan and wanted to do surgery since it appears that there is a slight obstruction in my one and only functioning kidney. After some discussions, she agreed that it can wait, and we will rescan in January. She did insist that I get a second opinion, and he agreed that it is okay to wait.
I am heading for Long Island, NY next week. My grandson's baseball team is traveling there for a tournament. My DH and I will have plenty of time to hit the beaches between games. The oceanwater there is quite a bit warmer than it is here in NH and Maine.
I have to run, but I will check back soon to say hi to everyone. In the meantime, congratulations for everyone with good news. I will hope for good scan results for those who have them coming up. Linda, I hope you get good news about the clinical trial.
Have a good weekend, everyone.
Lynne
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Hi, everyone ~ I've been away for a few days, getting my fill of healing ocean sights, sounds, breezes and smells along the rugged California coast. Froze our b*tts off though -- going from our toasty 110 degree summer heat to foggy mornings and nights in the 50s! I also noticed that my ribs hurt a lot more -- enough to make me wonder if Faslodex+Ibrance are still working for me. But now that I've been home a few hours and thawing out, I already feel less achy, so hopefully it was just the extreme difference in temps (like 50 degrees) and humidity. But it's made me think that maybe living in the desert when you have mbc is more of a blessing than I realized!
So happy to see Dee and hopefully Linda getting into these exciting trials!!! You are both in my thoughts as you venture into Ibranceland. And Wendy and Dee ~ how great is that that you two could meet up?!!! Did you post a pix somewhere???
Amy, the drowsiness you described definitely sounds excessive. Maybe a combo of the meds you're on, as Dee suggest for her situation?
Kathryn, glad you came off that ledge! I think it takes a good 6 mos. or so to wrap our heads around a Stage IV dx -- and that's only if we get great response to our meds. Otherwise, it's got to be much, much harder to adjust.
Patty, good to see you posting! Lynne, good to see your update. I will be praying the mole and higher TMs both turn out to be nothing. Feeling great almost always trumps TMs. Enjoy your grandson's tournament!
Big hellos to everyone else! I feel like I might be missing one or two new posters to this thread, which is not intentional. Will catch up with you next time if I have! Deanna
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deanna. Great to read about your adventure. I love that you get out and enjoy life often. That rocks !!! Glad to hear some pain is going away since you've warmed up. Increased pain is a major reason why I left Ibrance \falsodex combo. On to xeloda and already noticing less hip pain after just 1 week on. Been off Ibrance 3 weeks. Not sure if the med is the reason but certainly hoping so
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Oh my where do I start. I must go to the other threads. And I must do some more research.
Patty what can you tell me of how are you feeling on Xeloda? I think Babs is on it also. Loosing hair? Dani is dreading all this coming up again.
Dee it takes some getting used to, and the gals in the Ibrance thread are so helpful, so we will all guide you through. Linda cheering for you, I could hear how excited you are about it.
Wendy you also "sound"cheerful, good for you. In a way it's stressful, the waiting, but still better to be checked I think. Wendy, and you know I have the same problem, with full paragraphs disappearing before we are able to post, I don't understand what the problem is here, sometimes I literally write in Word, then copy and past here, so I won't get frustrated that I lost all my thoughts!
Dear Deanna, wowowow so nice that you took some time off! Hope you get to yourself real quick. Thx for the PM.
Carol so happy for you.
Lynne it's just unreal of all these craziness you are going through. Eagerly waiting to hear that you will be fine real quick. At least, you seem to have good people looking after you. The "C" word, DID NOT get the memo!!
Lindalou, thx for asking, I will let everyone know when we know. First we have appointment with Onco, a few days later with Rads. So let's see what they come up with. So much hope put into this. Praying for the right angel to be sent!
Aurora, good luck on your scans.
Kathryn waiving at you.
Cristina what's up? Feeling better with new treatment?
Annie it's been so long...
We won't know until the middle of next week about which tx will be the winning choice. But there is talk of Xeloda/Neratinib OR Ruxolitinib/Herceptin. So my freinds, anyone ever hear of these. Xeloda we know, and she has been on it way back. But not in this combo. And I sure hope they won't say that she was already, on Herceptin or already on Xeloda so she can't participate. I think it's phase III trials. We'll see. If any of you guys know anything about this, then we are all ears!
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I know this forum is for people with stage 4 breast cancer and not caretakers but my wife was just today diagnosed with mets to her spine and tailbone (and maybe rib) she was having bad lower back and sciatic pain (I posted about in in the concerned forum on these boards) we met with the MO today who told her its mets but that it's only in the bone, no spread to other organs. We are just so concerned because she finished chemo in April and while she did not have a complete response she had a really good response, her tumor shrunk from 4.8cm to 4mm and her nodes (which were all assumed to be positive based on imaging) were only 2/7 positive.
We have a 20month old daughter at home and I know this diagnosis hit my wife harder than the initial stage 3c diagnosis in October 2015.
What can we expect to talk to the doctor about on Tuesday when we discuss the new treatment plan?
Her first go around was a&c and taxol she is almost done with her radiation
Edit: forgot to add its triple negative originally diagnosed as stage 3c October 8,2015
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Kennya123,
I am so sorry that your wife has been diagnosed with bone mets. It is good news that it has not spread to other organs. You are certainly welcome here, as is your wife. We have had other family members post here on behalf of their loved ones who have been diagnosed with stage IV bc. There are treatments available for those of us who are stage IValthough a cure has not yet been found. If you read through some of the threads on these discussion boards, you will find many people who have lived many years with stage IV, so don't give up hope.
The first several weeks following diagnosis are scary. Once there is a treatment plan in place, things should settle down to a new normal. The pain should subside with treatment or with the help of pain medication.
There are many wonderful, supportive, knowledgable people on this thread. They will all be eager to help. There is also another thread for triple negative, and you should check in there, too. People on that thread will be able to discuss the treatments that are most often given for triple negative.
Please let us know how you and your wife are doing. My thoughts are with you and your family.
Lynne
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Okay, I have had enough. The result of the immunoassay to look for occult fecal blood came back positive. I will have to schedule a colonoscopy. Sadly, the result was posted to the patient portal before my PCP had contacted me. So, here is my plan for all these yucky test results.
1. Kidney - taken care of until January rescan, 2. Elevated TMs - next on the list, and most important in my opinion, waiting for CAT scan and bone scan, 3. Suspicious mole - dermatology appointment next month, 4. Colonoscopy - will schedule to follow dermatologist appointment.
I think they are all false alarms, but geez, this is too much at one time! Four false alarms? Talk about bad timing. My poor DH is understandably concerned, but I have to remain optimistic. I think I willcrawl under a rock until I find a new body.
Lynne
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Kennya,
Your wife's medical team will most likely get her on Zometa infusions or Xgeva shots. They have worked for my bone mets for 7 years now.
Terri
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Lynne, that certainly is a load full of capriolli. Will be praying for you to be able to get through with it all. I recommend going down the river of De Nile rather than hide under a rock. The river has some awesome sightseeings while the rock is uncomfortable.Stay strong friend.
Aurora
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Kennya - a warm welcome to you on this thread. I'm sorry I'm not much help to you as I am not triple negative, but I'm sure some other ladies will chime in soon.
Lynn - What can I say! When it rains it pours. Hang in there, we're here for you.
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Kennya - sorry you are here. caretakers are most welcome here. we have many several dedicated caretakers on this forum.
bone mets are among the most manageable with the best prognosis among stage IV breast cancer. TNBC has been a challenge in the past but has been catching some breaks lately. hardly enough light in this news to call it a "bright side", but you have good odds in an improving treatment environment.
if you would modify your profile to include your wife's diagnosis and teatment history AND make it public, it will provide useful context for your questions and observations.
>Z<
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Kennya...I'm new here...found out I have bone mets in May and I am newly triple negative after being ER + at original diagnosis.I am getting monthly Zometa infusions and am on my second cycle of Xeloda. As many of this group post, once you know the treatment plan you will feel much better. Let us know how it's going
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thank you for the kind words and tips about using this forum. Luckily we live so close to many great hospitals (we live about an hour north of Boston right near the New Hampshire border in Massachusetts. We have an appointment Tuesday at Beth Israel in Boston to start the next phase of treatment and start making decisions about what's next. Our local cancer center is great and they are partnered with Beth Israel. Her case has been presented at BI's tumor board since her initial diagnosis. Tomorrow (technically today because it's after midnight) we will go up to Maine to my wife's family's place to try to reset and clear our mind.
I know it's been tough on my wife but I feel like we are lucky because we live with her parents who are able to help watch our daughter while I work to make some money so we can pay for all this treatment. My wife carries the family insurance (because I am self employed) but I get the feeling that we will need to figure something else out. She worked all throughout chemo (she works for a daycare/preschool in an infant classroom) and finally took some time off when she had surgery. Her FMLA was set to expire next week.
One other way I feel like we are lucky, while the majority of my law practice is criminal defense, I also have done a lot of Social security disability work so I know the ins and outs of the process.
Thank you for welcoming us. We haven't really put much out on the internet about all of this. She and I still haven't posted anything about her initial diagnosis back in October on Facebook.
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Lynne, when it rains, it pours! So sorry that you have all of this going on at once! It seems like your priorities are in good order! Still, all this worry is hard on us, hopefully there are other reasons for these issues which can be easily remedied. Hang in there!
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Lynne,
I'm terribly sorry to hear your latest news and the additional testing you'll be going through. I'll say prayers you get over this bump in the road.
Greetings to all the new members and hugs to our regular crowd. As usual I'm happy to read about your lives and health, good and bad.
The fatigue is really tough so I'm limiting my errands to when family can take me. I feel like Driving Miss Daisy! All I need is white gloves, a pillbox hat and clutch.
Met with my MO and to her surprise hasn't seen toenail loss from Ibrance but she is convinced they're related. Of course there's nothing to be done about it.
Slowly transforming our backyard and getting ready to put in the pool. It's just like painting though, one doesn't pick out paint and start rolling it on, there's been about two weeks of prep to be done before actual digging. The fun parts are picking out the liner, the pool deck, lights, deck off the back porch and gardens and new fence. I'll post the first dig photo and the finished project once it's finished.
Have a great weekend lovelies.
Amy
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