Bone Mets Thread
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Hi All
This is the only thread that I can't just read and just jump in-it moves so fast and is so very full of information. Since I work f/t and have decided to keep our social life packed while I am still able I really can't write much except on a weekend.
First thank you all for your continued support and for all the information you are so generous with and share with us all. I will address everyone (I hope) Anyone missing I apologize in advance.
Wendy- thank you for your suggestion about ablation & CBD. I sent my MO a request for ablation and she advised that she wants to treat the whole not just the liver-that systemic treatment is best. I of course wrote back that since my BC is only active now in my liver and is growing I would like her to reconsider and ALSO to treat me with chemo-waiting for an answer on that one. When I meet with her next month I'll bring up the CBD
Gracie M-hope your scans this month show no progression-fingers crossed!
Dee-I'm hoping your issues are only minor thyroid ones.
Jen-thanks for your concern
Zarovka- thank you so much for all the input. I have sent my MO a long email based upon what you wrote. Her nurse advised that she's looking into everything and will advise next week. You are such a GREAT source of info.
Linda-good luck on the brain MRI and the CTs-hoping for no progression!!!!
Deanna- I hope your tush doesn't hurt anymore. Just think DH can have a great time rubbing it for you and making it better!!!
Kaption-good luck with your MRI-hoping it's really a nothing!
Amy Q-I am so happy for you and DD2 wedding. Enjoy every minute of this wonderful time.That's the reason I keep pushing forward-to make it to my DD wedding. I hope her bf asks soon. Start slathering your hands and feet now in anticipation of X-that will help. Other than the HFS I found X ok. It's the only med that worked for me and it even got me to NED, even if only for a short time! Hoping it gets you to NED for many years!
Mary- I was never told about the B6-wish I would have known. I hope X gets you too to NED for a long time!
Kathryn-love the idea of lighting a candle. Your story reminded me of the "Seinfeld" type incident I had with my Dad when I called him to tell him I had BC. I lived in an apt house then. My father lives in Fla and is hard of hearing and so I kept telling him and he kept asking what I was saying. Finally I was shouting that I had BC. My DH and I starting laughing so hard that we were crying. I kept saying, " we're in a Seinfeld, my entire apt house knows I have BC but my father still doesn't. "
Cat-so happy you're NED Happy Dance time for sure!!!!!!
Stills- Im glad you're doing well on X. Hoping it takes you to NED for a long time!
Animal Crackers- I hope the ocular migraines start to wane.
Momalthe-What happened with Dani this week? You two are always in my thoughts
This past week has been very difficult. The news of my progression is not a surprise because my TM's doubled in just 2 months. But, that coupled with the recent passing of Cristina, who I met personally and corresponded with and Hummingbird 4's hospitalizations and increasing issues really hit me hard. Hummingbird and I have become very close. I speak to her via msgr at least twice per day and visit her while she's at MSKCC.
I so want to be around for my DDs wedding-my mother never made it for mine. I want to know and to love her children and for them to know and love me. My mother never got to do that either. I see how this monster can progress so quickly at times. I am trying to hang tough but this week wore me down. I can't speak to anyone else-they don't get it plus they all think I'm soo strong. Only my BC sisters can relate. Just needed to vent-thank you for always being there!
Babs
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Hello Babs, I am very new to this new way of life. I am thinking of you all of the time. You are right, lots of people don't get this. This site with all of us in the same situation makes things a little easier for sure. I hope that you can slow down the progression and your MO has some good ideas for you. Please let us know. I don't have much experience with this, as I am still in the "shock" and "scared" state not knowing how you get out. Keep strong and always know that we are thinking of you!!! You inspire me with your positive and loving concern for all!
Anita
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Cat - Congrats! It can take a few weeks for the post rads pain to subside. Healing bones can also be painful.
Regarding ocular migraines. I started having them at 11 years old. About twice a month until menopause where the frequency and intensity diminished. I now get them once in a while and weirdly very often with change of seasons. During the 5 months I was on Tamoxifen I had them one after the other. Had a brain scan at the time which was clear. Those migraines are really the pits.
Babs - vent away. Only we can truly understand. I'm so grateful for all my friends here and care for each and everyone of you.
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Anita - I don't remember seeing you on this thread unless my memory fails me, which is highly possible lol. A warm welcome to you on this thread.
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Amy you are soooo right, I'm heading to Costa Rica in a few weeks to learn surfing screw cancer. 😊 I will do what ever I bloody well want cancer has controlled my life enough I'm taking it back. Now is good I live now.
Amy damn you make us worry girl fell better soon. Big hug🤗
Dee ah well I guess it's not for everyone I'm sorry that's too bad. Especially since you are sitting on a good source .
Have a great weekend paddling was cancelled for me this morning too wet. Only Wendy wants to dragon boat in the rain I guess . Will have to find something else to get up too. Take care ladies I love you all
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oh Babs I wish I could give you a big hug right now. This is only a battle not the war. It's just in you liver once you get on some treatment you will be NED and stay there. You have to believe that in your deepest of thoughts. You are so vibrant ,those pics of France you are beautiful and strong. This is just a moment in time this will turn around. I strongly believe this
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Hello LindaE54,
I am not sure I have posted on this thread. I'm new to this. I was diagnosed with bone mets after almost 8. Years. Nice to meet you. You all have been a candle in the dark for me. Still trying to wrap my mind around how to find a way to feel normal. You ladies are wonderful!!
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Babs, I too wish i were closer to give you a big hug! I know that after 10 years of NED, finding out it was extensive in my bones was just almost unbelieveable. I can't imagine how I will act when it moves elsewhere, but I'm sure I won't take it anywhere near as well as you seem to have. You are and will remain in my prayers! Praying they get you on something to get that met out of town!!!!
Photogirl, I was 9 1/2 years NED when mine came back. Found out in August. It's been difficult. But I'm still living my life, acting as if nothing has changed, although everything has changed! But the women on this board are awesome and they have so much knowledge to share with you, as well as awesome support. I hope you get back to NED, and stay there a very long time.
Patti, hoping and praying you are starting to feel better. I think of you alot.
To everybody else, I'm sorry if I've missed your posts, I'm at my daughters for a week in Wyoming and it's been snowing and COLD!!! Yes, I drove myself, over 12 hours in the car, my friends all freaked out completely, none of them thought I should come, but then none of them has stage four cancer either. I was like, Look girls, I'm not going to check out while driving to Wyoming!! Geesh!!! It's been good and we had our Christmas early (she has four children), since they can't make it home before Christmas. I hope they will make it home sometime soon after the first of the year. Hopefully when I get home, I will be better able to keep up with the posts.
Blessings to each and every one of you!!
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I just heard back from Patty. She's miserably sick with pain, fever, nausea and the big D. Still on antibiotics. She will contact her MO on Monday if she's doesn't feel better by then. Told her all her BCO friends are sending love and prayers.
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Babs - Working through the re-diagnosis and developing the new treatment protocol will take the wind out of anyone. Just keep moving through it. Once you get on treatment, life will take over and cancer will once again fade to the background. Our thoughts are with you.
I am interested in what your doctor things about those liver treatments. Aa second opinion during treatment transitions can be a good idea, although it's more effort, doctors, decisions and doctor's offices.
>KNC<
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wendy3 I live in Costa Rica I would love to meet you.
Zis
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Hi theziz I'm heading down to Puerto viejo on the 30th where abouts are you?
Wendy
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I'm headed to Costa Rica on July 6. Going to the Guancaste area.
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I was just thinking of Cristina the other day and thought to get on BCO to find out how she's doing. I am so sad to find she has passed, but she's finally at peace. I grieve for her precious children and DH. I'm finally caught up reading, and just love the Paris trip photos! Sometimes I think I'm a 100%, and then something happens to prove I'm not, but I will enjoy life until I can't. Wishing you all good treatment options/results and pain-free days. Hugs, Barbara
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Hi Jen,
I went to the Guancaste coast a couple of years ago. Stayed on a horse ranch in the middle of the jungle. You will love it humming birds everywhere , big bugs, and lots of howler monkeys. You will love it 😊
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I leave in San Jose,
Are flying straight to puerto viejo?
Are you going to be in San Jose
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hi girls had my last radiation to spine and have been trying to start short walks daily and get some strength back in my arms. I find that when I do some exercise I am sore and exhausted that night wonder if that is normal. I have only been diagnosed 4 weeks with mets to spine ribs pelvis and back of skull but I feel like I have lost strength very quickly. There is no way I could go back to work in any form atm. This is a great thread and I hope I do as well as most of you ladie
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Delvzy,
Radiation can really be exhausting. Do continue to try to keep moving, but be patient with your body. When do you have your follow up with your RO?
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theziz yes I'm flying into San Jose then driving down to Peurto Viejo. If you like we could meet for a coffee before. I'll check with my husband about time
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Question about pain from healing bone mets. I had a rather large met in my acetabulum and while my hips had been sore for some time prior to diagnosis (I chalked it up to having a desk job and carrying extra weight) since I had it radiated it's hurt worse than ever. I did rads in May. My scans in Oct showed it was healing, Does it make sense that I'd still have increased pain 6 months after rads? I'm ever hopeful the pain will get better.
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Jen, my onc says that healing bone can hurt too, and to not assume that all bone pain is bad. Hope you get some relief soon
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Wendy3 that would be great, just let me know.
Hi everyone.
Zi
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hello everyone, popping in to see how everyone is doing. I was searching androgen trials info and read Dee's thoughtful posts and links a few pages back.
I've been taking letrozole every other day, and the side effects of joint pain are so severe I cannot continue. I'm on opiates for my cancer pain, but the joint pain from letrozole exceeds my cancer pain. It's frustrating to know my body can't tolerate the drugs that can keep me alive.
My doctor has told me to stop letrozole for now and we will discuss androgen trial at our next visit in January. It's a big gift to celebrate the holidays without being on treatment. Not sure if I'm ready for another trial.
A couple of you mentioned feeling extremely cold. I know exactly what you mean. I call them "cold flashes" because these chilly feelings are as intense and uncomfortable as hot flashes. AI's seem to cause the cold flashes for me. Instead of heavy coats, I stick to layers of scarves and blankets, which are easier to remove and put back on in 5 minutes' time. ;-) I have a black cashmere scarf and a gray silk/cashmere blanket that I use constantly. The are small enough to fold up in a purse.
Wishing all of my bone mets sisters a painfree week.
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Michelle... Quick thought on your situation... Have you tried another Letrozole brand? I think there are as many as 4, from different manufacturers, and some women who have not been able to tolerate one or another have done much better by switching sources, which can vary by pharmacy. I believe there are comments within BCO on which have worked better for those who are ultra sensitive to it. Just a thought from Las Vegas this a.m.
Hi to all!
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Hi Ladies,
I want to thank everyone for all the pm's I received, it means a lot to know that you are missed. When I would get a PM I would sign in and then lurk so I have kept updated on everyone and I want to welcome all the new members. My wish is that no one ever has to join BCO, as much as a God Send it is for us, I wish there was no such thing.
Steph..... was a messenger that was sent to us and fulfilled her mission on earth with grace and dignity as she shared hands on experience and wisdom. I already have received many signs from her and I am aware of her spirit around me. Her mission was completed.
Cristina .... there are no words or thoughts and there was no mission for her. She wanted to see those babies grow up and I cannot wrap my head around this disease, that took that from her. It angers us all- I got the news the day she passed from a dear friend here- I also was friends with Cristina on FB and we always found a way to pray for each other. I think this is the hardest loss for me yet. I took to the bed and stayed there for the remainder of that day. Just so devastating and unfair.
In the interim, DH and I have moved from upstate NY to North Shore MA- to be close to my 3 daughters and 6 grandkids. I still do have my parents 86, and 89 so I was sad to leave them, but they are going to spend January here with us. I am pretty much settled in and if there is a silver lining, Dana Farber is just a short 35 minutes away and Lynne is only 45 minutes from me!!! We spent a week in Florida with all family and did the Disney Adventure for the 100th time. Was special with the grandkids, I rented a scooter! Lesson from that, I wish in my younger day that I took up with a Harley.
I was not able to stay on faslodex,after 3 months, (even though my TM's had dropped), it worked great in my bones but not in my soft tissue and a new tumor was found in the posterior chest wall. Which of course, explains the pain I have had there for sometime. Always thinking it was a rib, who would have thunk it was this. Finally the CT picked it up, but I think it has been there since stage 4 diagnosis in 2015- It takes these buggers awhile to show up.
I started Xeloda and I am about to begin cycle 2 which consists of 2 weeks on and 1 week off. The first cycle went well until week off came around and of course that was smack in the middle of the move. I think the pain is better in my back area and I have cut the dose of Advil to only twice a day. I just need a shot of energy from somewhere.
I don't want to make this so long that no one reads it so it's impossible to reach out to everyone that has posted. But I have kept tabs and I pray for everyone by name each night.
Babs, I especially loved your pics and pray taxol will get this to NED!! You are being well taken care of in NYC. Mary, we share the same drug now, along with Patty and soon Amy. My SE are tolerable. I just keep repeating... "Just Keep Swimming Dori"
I wanted to wish everyone that celebrates CHRISTmas to have a merry one and Happy Holidays to everyone.
Hugs, Carol0 -
Carol - I have been thinking of you. Glad you are done with the move and settled into a new treatment. May peace and joy be with you through the holidays.
Read every word. Look forward to hearing more.
>Z<
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Hi Carol!! I was just asking Deanna about you. So good to hear from you and get an update. Love your new avatar too. Wishing you the best as you continue on Xeloda and you are in great company that's for sure.
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Carol
So glad you enjoyed the pictures. X got me to NED I hope it does the same for you but for a long time!!!
Babs
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Carol, good to hear from you and I read every word too. You matter to all of us and I know we all send you hope for good results from your therapies.
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Carol, so nice to hear from you, you've certainly been missed. I hope Xeloda is kind to you and gets you to NED. Sending you healing hugs and wishing you pain free holidays filled with energy to do all the things you love!
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