Bone Mets Thread
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Animal Crackers!!! Yea great news on your scans!!! So very happy for you! I'd dance but I have two left feet lol! But dancing in my head! Go celebrate!!!
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Good afternoon all. Hope y'all are having a great day
Hugs
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hi patty. every time you post feels like a ray of sunshine in our little world.
animal crackers. awesome scan. thanks for letting us know.
>Z<
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Animal crackers, yay to stable scan results. Good news indeed!
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zaroka. Thanks
Animal crackers. Yea. Great news !!!
Whole family passing a bug around. Yuck. Of course I got it.
Hugs all
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Great news, AnimalCrackers!
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Great news, Cathy!
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Todsy I went for my 4 week all day visit on the GDC0077 study. And just got my TM results back. They went down 110 points. So happy! I think the study is working! Will know in another month for sure when I get my scans
Babs
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babs- what terrific news!!!! I pray for you everyday! Your family is so beautiful and your DD is elegant ,sophisticated and absolutely radiant!!!! So happy to hear that the tx is working!!!!
Claudia- stay safe!! Very worried about these storms!!!
Z-terrific idea w/ the marshmallows!!! Let's roast a green chili 🌶 too,for her spunk!!!
Animal crackers- stable is awesome!!! So nice to know when something is kicking butt!! Makes the se's seem worthwhile.
I had my PET scan early Wednesday morning and the results are in. I can hardly believe it,but I am NED!!!!! Two years on tamoxifen and the nasty se's. It gives me morning sickness and hot flashes like I never even imagined!!! But it worked!!! In conjunction with some alternative medicine.THC and CBD 225 mg. Daily. All of the prayers were answered!!!! I am so grateful! Even if it only lasts for three months! I'm so happy to hear No evidence of cancer!!!!
Love to all of you out there!!!
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Chelle. That's amazing news!!! So happy for you. You should go out to celebrate🎉🎉🎉🎉🎉
Babs
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Chelle, awesome news!
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Just saw ny typo. My TMs went down 210 points not 110!
Babs
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Hooray Babs!!! Even better!!! Thank you ladies for your congrats!!! I am sooo happy,I can't sleep!!
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Babs, 210 points, WOW! That is fantastic. I think you are right, the study is working. WOOHOO! I am so happy to hear the news. Before you know it, you will be in Paris for the birth of your grandson.
Chelle, What can I say? I am so full of excitement that I am dancing in my kitchen. You and your family have been through so much. I have tears of joy running down my face. This is, indeed, an answer to the prayers so many people have said for you. WOOHOO! I hope you stay NED for many, many, many years.
I love reading good news in the morning. Actually, any time of day or night is good for it.
Hugs and prayers from, Lynne
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I also love reading the good news! Chelle, Babs, Animalcrackers. Reasons to celebrate.
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Babs, 210 points is a significant drop! I would agree that the study is working! I'm so happy for you.
Chelle, omg NED is absolutely awesome! Logging in and seeing all this good news makes my heart happy. Celebrate, celebrate, celebrate!
Hugs to all, Annie
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Hi Everyone.
My name is Mary. I live in a suburb of Denver. I was diagnosed with mets to T9 and tibia in April after short time on adjuvant letrozole (I actually probably had mets in October but my original onc lost my bone scan and told me everything was ok. I found out about that when gathering records in the spring). I started on Ibrance and Faslodex in May which spectacularly failed with major progression. I just learned about that two weeks ago and am still reeling. Started on Xeloda 10 days ago and am suffering from hand foot syndrome but trying to stay on a high dose for this first cycle in hopes of some success. I was walking 3 miles per day prior to Xeloda. Hoping to find a decent dose that allows me to return to it.
I have 3 lovely daughters ages 18, 14 and 12 and a wonderful husband. I work as a church music director, a job I love. I'm praying for something to work so I can get my girls raised. I'm currently being treated at MD Anderson (was being considered for an off protocol radiation program), but they haven't been so hopeful at this progression, so considering a move back to Colorado, most likely to CU.
I have followed you all here and on the Ibrance and fitness boards for several months. You all amaze me. I hold you all in prayer.
M
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Mary, I am sorry that you have reason to join us, but welcome to the elite community of mbc'ers. Since you have been following some of the threads for a while, you know how supportive, caring, and knowledgeable the people here are. Many people have had success with Xeloda. I have read that many people do decrease their dosage due to hand and foot syndrome and still do well. You have probably already read through posts on the Xeloda thread. The people there can answer xeloda-related questions and share their experiences with you. The shock of progression is hard to face, particularly right after you receive the news. I want you to remember this - progression does not mean that you are speeding downhill. It is just a bump in the long road of MBC. There is NEVERT a good time to have MBC, but right now there are many new treatments available , and more are coming. Many of us could be around for a long time. I hope that someday I will read a post from you saying how much you are enjoying each of your daughters' milestones as they grow into adulthood.
Hugs and prayers from, Lynne
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Thank you Lynne. You are always so positive and caring.
M
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Babs - That is one hell of a drop in TM's. I can't wait for the scan results ...
Chelle - That is an unusual result on tamoxifen. Tamoxifen is likely only a piece of cause for that excellent scan. Look very closely at the other things you are doing ... and double down. You must be taking exceptionally good care of yourself despite the god awful side effects of tamoxifen. Take a moment to give your self a serious congratulations. That scan is comparable to all the training and effort that goes into winning a marathon, and then actually winning. However, no cheers and no medals in our world. Just an oddly worded radiology report. Sending you a big WOOOOOHOOOOOOO.
Marylark - not all hormone positive cancer is responsive to hormone suppression. We see hormonal treatments failing ERPR+ cancer all the time. It feels like a punch in the stomach, but is simply the wrong treatment for the type of cancer you have. Nothing more.
When hormone suppression does not work, Xeloda does have a high rate of controlling the cancer. The trick, as you seem to understand, is lowering the dose so it doesn't interfere with you overall well-being. Being able to walk every day is very very important for outcomes. If your treatment is interfering with your walks, your doctors must revisit the dose. I am not on on Xeloda, but I am reading frequently that lower doses of Xeloda have the same outcomes.
When you have minimal mets, radiation can be considered as a treatment, not just a palliative approach. I am glad that discussion is happening.
Whatever you choose, bone mets move slowly relative to metastasis to soft tissue. You will be definitely be around for a while. The real priority/goal is maintaining your overall well being so you a a full life and be the mom you want to be for those kids.
>Z<
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Thank you Z. I have read studies about exercise and prostate cancer that have been encouraging so believe it is essential to keep moving.
I also read some studies about the use of estrodiol to re-stimulate hormone receptors that aren't responsive. It seems to work in about 30% of the cases. I'm going to bring it up with my oncologist if I have success with Xeloda. Would much rather be on a hormonal perhaps with abemaciclib. I found Ibrance a tolerable treatment, except for some blood count issues.
I have appreciated your insights over the months. I, too, am an incessant researcher.
M
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Chelle - OMG!! NED is amaaaazing! I am so happy for you! This is the break you needed. Made my day!
Babs - 210 points! Woohoo! You too have made my day! So happy for you!
I am doing the happy dance for you both!
Welcome Mary!
Hugs and prayers
Claudia
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some great news animal crackers this is a happy dance moment. Chelle is also NED just found out so yeah for her as well. Next is the rest of us
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Mary -
There are a lot of things that can potentially re-sensitize cancer to hormonals. one of them is estradiol. another is chemo, like xeloda. In your case I wonder if you were ever sensitive to hormone treatments and that may change the odds that you can re-sensitize the cancer. Although I have read the studies that show this works, I've actually never seen anyone try estradiol or try hormonal treatment after a few rounds with chemo. It's certainly on my mind. The data is there. Estradiol and returning to hormone suppression after a couple rounds of chemo was discussed only recently as a treatment strategy at the ASCO conference.
I learn a lot from bestbird. She mentions strategies to re-sensitize cancer to hormonal treatment in her Guide to MBC. It's worth getting a copy reviewing the relevant bigs and keeping it handy as you go through treatment decisions. Bestbird distinguishes carefully between experimental and standard treatments. She considers the re-sensitization strategies standard. Most doctors, however, don't seem to be aware of the option.
>Z<
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So happy with all the good news! Thank you for sharing it! I was wondering about the tumor markers-is it the percentage that they come down or the overall number? Mine are so high to begin with that I wonder what would be a significant decrease? The only data I found was 25% lower in 6 months is good. Thanks for any info.
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Zaroka. I agree. Bestbird is awesome. So much knowledge .
Chelle. Hip hip hooray !!!! Doing the happy dance for ya.
Babs. Woohoo. That's great news !!! Wonder if the trip and all the happiness it brought has something to do with lowering numbers?
I've been down with a bug I got from dss. Sore throat, ear ache , achy body, fever etc didn't get dss last night since I felt bad but they will be here tonight. Praying for speedy recovery so we can actually do something together
Hugs
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Happy for Chelle, Animal Crackers Babs! Keep it up friends. Babs, apparently being on vacation with your whole family is the key! Sounds wonderful.
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Great news Chelle, Babs, and Animal crackers.!!!
Love hearing about improvements:). Hope you all are feeling better along with the good results!
Happy day.
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Great news Babs, Animal crackers and Chelle. Mary it's a been only 3 months for me. These women are very informed and will be a great inspiration. Patty, hope you feel better. I have been absent for a few days. Just met my grandson for the first time. It was a wonderful day and to see his sisters welcome him home is a happy day. Years ago my mother made a cross stitch that said " a baby is Gods reason for the world to go on". I never thought it would have such meaning. Seeing the smiles on his parents and siblings faces I s inspiring to me. BTW he's so adorable. But I may be prejudice.. he looks just like his dad, my son. Nothing like a snuggle with a day old baby. Praying all the Floridians are safe.
Maire
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Animalcrackers, Chelle, Babs
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