Bone Mets Thread
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Hidlb823,
I am Stllivin (Suzy) from Arizona. Am I on your list? If not, how do I get on it? I am very new to posting. I mostly just read.
Thank you ~ Suzy
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Thanks Deanna for spending the time to do this ,very sweet of you.
Xeloda I don't think we even have in Canada, Dee, Linda do we? I'm hoping it helps you ladies knock the cancer on its ass.
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Babs, thanks, I don't know yet though if it is good news, the RO's asst called me this morning & says she needs to speak to me tomorrow about my MRI & CT, so I don't know what that's all about. I have an appt with my PCP, so I will find out something then.
Wendy, we do have Xeloda, they call it by Capecitabine. It's in the BCCA literature. Now I couldn't find out if it's a benefit or not.
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So I saw my oncologist yesterday and got the results to my CT scan. Looks like this trial is working for me. My tumour has shrunk down to almost nothing from 3.5 cm to 2.1. There were no new lesions and all existing lesions are down in size. I asked my oncologist about NED she said it's impossible for me to ever be NED because even if the lesions on the bone are inactive or dead they would always show up on scans as a shadow. Therefore I would never know if the disease was in remission or not. Never the less I'm happy for now with inactive and stable.
Dee maybe you could join this study as well? Seems to be working well for quit a few woman that I know on the trial
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Hi Wendy3, can you please post details of this trial ?
Dee, fingers crossed, I am very confident it will be good news.
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Wendy- awesome!! I'm so happy to hear you are responding.
Deanna- you are right to be worried about me slipping through the cracks. I don't know if my MO and nurse would be so persistent w me. I constantly call my MO though so they can't get rid of me. I have an appt today to review the biopsy and talk about Xeloda. If it comes in the mail I'm starting tonight.
So my worried feeling was that Rachel1 was really Dara W on FB. I don't know why I had this feeling but I hope it's wrong. I just noticed the posts had the same vibe from her, of being really scared when progression happened and in general just terrified from her disease. Both ladies, whether they are the same person or different, made me feel very sad. So that was my feeling and I'm hoping I'm wrong. But I wanted to share it....
We are going to a condo near the NJ shore tonight and will return Sunday. So I will likely take my Xeloda along with me, lol.
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Wendy - absolutely thrilled to read your good news! I think Xeloda is funded across Canada.
Dee, keeping you in my thoughts today.
Cristina - Rachel1 has not logged in BCO in a while. I'm hoping you're wrong as well and thanks for the search you are doing. Enjoy your little getaway this week-end. Hoping you receive and can start Xeloda, I'm reading very good results with it.
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Sure letmywifelive the study is called MONALEESA-3 a randomized double blind , placebo-controlled study of ribociclib in combination with fulvestrant for the treatment of post menopausal woman with hormone receptor positive, her2- negative breast cancer who have received no or only one line of prior endocrine treatment.
Also heard something else interesting yesterday from two different oncologists. Apparently swallowing one tiny baby aspirin a day can have positive affects not just for woman and men with heart issues but also for us. A study done with folks that used the drug for heart issues in these peoplevery low rates of cancer were detected. After further study it was found that it actually helps even with metastizied bc. I was told to get the coated ones easieron the stomach and that the baby dose is sufficient one per day. Heck easy enough to do so I'll add this in too.
Christian enjoy your get away at the shore I hope the weather is great. I will be visiting Chelle in June and we are very excited for that as well. Husband has a business trip in Denver and I'm tagging along. Who knew that breast cancer would give me such a dear friend, and I met her here on these boards. I wish you all a beautiful pain free day with only positive scan and test result.
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Wendy, Monaleesa isn't being offered on Vancouver Island, different health authority. On Monday I will ask if it would be appropriate for me & if I could travel to Vancouver for it. thanks, dee
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Hi ladies, I got my biopsy results. I'm not longer ER or PR positive, triple negative now with a ki-67 score of 45%. So my only option now is chemo, no more hormonals. I wonder how long it's been triple negative? It used to be ER + 90% in 2012!!
I'm scared but my onc told me just to focus on making positive memories and not to waste my time w depression or fear and focus on my kids. I couldn't stop crying when we were talking.
Starting the Xeloda tonight after dinner. Let's hope it helps.
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Cjanet, I am sorry to hear of the results. You are in my thoughts and prayers. I know the news is upsetting. Your onc is giving you good advice. Please take some deep breaths, often, and try to not project yourself into the future. Remain in the here and now, today. Many hugs to you.
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Cristina,
I am sorry for the news you received, but I am so glad that you pushed for a biopsy. Without it, your long-term treatment plan would have continued down the wrong path. There is a triple negative thread, as I am sure you know. Ask questions there so you can be well-informed. Don't give up hope. Triple negative metsers can do well on treatment.
Of course you were crying when you were talking to your onc. It was not the news you were expecting, and I am sure you immediately thought the worst. I cr under those circumstances, too. Give yourself time. Have a big old pity party for yourself, then pick yourself up and move on. Enjoy your time at the shore this weekend. Laugh with your kids. Walk on the beach. Enjoy the wonderful ocean air and fresh breezes. Take some pictures and post them for us, please. I would love to see them. I want to see big smiles on the faces of your gorgeous children.
We are all here for you, Cristina. You have endured a lot, and we are pulling for you. Lean on us when you need to. I hope Xeloda zaps those cancer cells to the curb.
You remain in my thoughts and daily prayers.
Lynne
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Cristina, I think we're all crying with you. I do hope you are able to focus on your family and all the memories you are yet to make. Prayers for a miracle, which by the way, I believe in. I also believe you will be dancing with NED sometime in the near future.
Hugs
Amy
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Cristina, I am so sorry you got that kind of report, but I'm glad there has been some clarification of what is going on so the right treatment is used. Hopefully the right treatment will now knock this stuff back to NED. Much love and hugs. I wish we could do more for you than just type words, but we are here for you whenever you need us!
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the central address book is maintained by nowheregirl (same member who maintains picture forum)
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Cristina sorry for your latest news. Hopefully Xeloda will do its thing for you
Go to the beachand enjoy your children !!!!
Sending you hugs!!!!
Babs
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Cristina, sorry you're dealing with this, we're here for you. Hard to not focus on it, but your onc is right, try to concentrate on enjoying your children & living well & we'll all be hopeful that Xeloda zaps those cells. ((hugs)) dee
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Dee, you should wait until your MO tells you to change any treatment plan. Chances are very good that nothing has really changed for you.
cjanet, sorry to hear that your hormone receptor type changed. Have you spoken to your MO about trying out immunotherapy ? It is supposed to be more effective for triple negative. You should also get a genetic profiling done in this process. One other option you can try is contacting sagelyhealth (http://www.sagelyhealth.com). They are a commercial company but was recommend to me by Dr. Brian Druker (remember Gleevec ? the miracle drug) as an organization that can suggest best immune treatment plan. Keep your options open.
Wendy3 thanks for letting me know about MONALEESA-3. My wife is currently taking Ibrance and somehow tolerating it (2 weeks on / 2 weeks off @ 100Mg). If she needs to ever come out of this, I will keep what you informed in mind.
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Cristina, like everyone else, I'm so sorry you're dealing with this change in hormonal status. It's got to be upsetting, but at least it explains why your mbc has been so resistant to tx. Hopefully with this new information, you will have an entirely different response. If I could urge just one thing, it would be to be sure your onc not only deals with TNBC in younger patients, but has a hx of good outcomes. I worry in general about women being treated locally by oncs who may not see much TNBC. As an example, here's an article that caught my eye in a professional publication in my onc's office. If a general onc doesn't have TNBC patients, it's something they could easily have missed.
But please try to remain hopeful! The article below mentions the patient is more than 6 years out and still doing well.
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Christina, So sorry to hear about your status change, but now maybe you can start Xeloda and move forward with more clarity in your treatment. Go hug and love your family. We are all here for you.
Letmywife, Where exactly is sagely health located?
Deanna, I heard about Cetuximab for colorectal cancer and interesting that it is being used on triple negative. Do you remember what publication it was in? My friend is triple negative and I will pass on that info to her. Thanks for compiling the updated contact list. Was your UCLA appt this past week? How did that go?
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Lindalou, that article was in the December 2015 issue (Vol 4, Number 6) of Personalize Medicine In Oncology. Another interesting stat I found in that same publication was this: "Two-thirds of Americans now survive at least five years after a cancer diagnosis, up from half in 1990." That article goes on to attribute the improvement to modern cancer therapies, including Avastin, Erbitux and Tarceva. Of course, that's an overall stat for all cancers. But the very fact that it's up that much seemed very encouraging to me! I sure wish someone would come up with an equally encouraging stat for mbc, which I feel surely has changed as well.
And yes, I was at UCLA on Monday for a follow up. Everything's good. She wants scans again in August, which will be 6 mos. from my last ones. Other than that, we talked about overcoming fatigue with exercise (mentioned above), Xgeva and ONJ (she's pulling back considerably on frequency for those of us on Ibrance; PM me if you want more info'), and the issue of findings on scans that sound potentially ominous but then never come up again (very common). Oh, also the future of meds for us, which I may have commented on already, but has made a huge impact on my thinking this week and maybe worth sharing in case I didn't earlier. This was in response to asking her about the new CDK4/6 inhibitors that are in trials, as well as other new drugs -- basically which ones we should be watching. Her response was something like, we shouldn't worry about any of them. Just know that if you progress in a year, there will be more options than we have today., and if you progress in 3 or 4 years, there will be even more options.
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Hi Ladies, taking a break from the boards turns out to be more of a bad thing then a good thing. So much to catch up on and then it's impossible to address each one of you that I care about so deeply. But when I have scans coming up I panic. You would think that coming up on a year anniversary of MBC that Inwould somehow get my act together.
Christine- I know the liver is different than the bones but my biopsy of bone was triple neg and another patholgist gave his opinion and we tried something that was not recommended maybe you can get that report sent out for a another look. Actually the answers to our treatments are relied on by the pathologist report. You already know how much I care about you. You're in my prayers always
lindaE- no more contrast. It's optional only helps on abdolmen the most.
I write- just had scans yesterday. I also am having an awful time with pain in my leg that has the rod which came on after a day of walking that I have not been doing. Won't go away either! Scans were clear with no progression so that should find you some peace until you have yours done. Maybe we are just too old to work out more than doing just a brisk little walk. MO said no real exercise for me ie: weights machines etc. she said yoga and gentle massages only.
Xgeva shot- MO said I will continue to get them monthly without any breaks for me yet. I have had 8.
My scans were stable with a little more healing in the area we are watching most carefully. No rads there and it's slow to heal. Just proves how slow Ibrance works. My TM are not reliable. Each month they creep up a few points. MO says its more likely inflammation. I have neuropathy where my mets are. New med had kicked that burning pain to the curb. So happy about that.
I have a few pm's to address. Mary, thinking of you. Will get to you soon. I'm so sorry to all that are feeling sad over the loses here. I don't think I knew who the ladies were. Nevertheless I feel so bad anyway.
Love to all. Carol.
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Deanna, thanks for the work you do keeping the member list. I'll pm you my info, too.
Nice to read good news here. Hope you all have a nice relaxing and pain-free weekend.
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Cristina. I wish I had the talents of Elizabeth Montgomery and could blink myself to you and give you a big hug. This is a change but you and your doctors will get the treatment plan organized and then the fight continues. I have been seeing lots of good info for triple negative breast cancer patients in the media lately from immunotherapy to them finding out that prostrate drugs seem to work as well. Do not loose hope you are young and strong and will get this. Have you tried any alternative therapies? Enjoy the shore , tank up and remember we are all here for you.
Has anyone heard from Terra
Wendy
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Good morning all,
Cristina, I hope you're enjoying your little getaway, I'm sure the kids are thrilled. You are so wise to have requested a biopsy. With the right tx in place, you will kick those nasty cells to the curb.
Loves, welcome back and congrats on stable and healing! The scan waiting part is always hard but does get better with time. If it's any comfort to you, my femur with hardware acts up from time to time. MO also told me to go smoothly with exercises.
Terre - if you're reading, I miss you!
I heard from Patty a few days ago. She's spending time with the kids who are now out of school for the summer. She's having good and bad days, bad ones outnumbering the good ones.
Good week-end and hugs to all!
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Linda thanks for the update on Patty. I hope the good days will push away the bad ones for her. As for the femur Rod, the more I sit with my legs crossed when I go to get up it takes my breath away. So I have been trying not to do that. It seems the more Mobil I am the better it is.
Christine-I want to mention that I also discussed with my MO what would be next for me. She said prob Would do biopsy first then oral chemo Xeloda. What I found interesting that she said was they are finding that if you did have previous success with Ibrance as you did, they are finding they will revisit that drug again once a drug like Xeloda does its job. So many clinical trials going on too. That was positive news for all of us that have some stable time on Ibrance etc.
Hope everyone is having a great weekend. In New England the summer fairy arrived for today. She's leaving soon though so catching that vitamin D while she's here. All or none seems to be her attitude.
Hugs, Carol
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Lynne- you have the same summer weather fairy as me. What's up with her?
Wendy- forgot to say horray to your good news.
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With widespead bone & bone marrow mets, I figured it would be a clever idea to chime back in this thread..
I'll be catching up with you all in no time
)One activity per day, afternoon nap or resting in bed daily helps me avoid taking Painkillers.
Zometa still on..
Hugs
Ebru
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thanks Carol
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Ebru, nice to see you chiming in on this thread. Enjoying your vacation?
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