Bone Mets Thread
Comments
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I love all the pictures, I reminds us that life does go on.
I'm cross posting here for Carol and everyone. I read today that "courage does not always Roar, sometimes it's the quiet voice at the end of the day telling us we can try again tomorrow". BTW, I've also downloaded "Roar" as my new ringtone. It gives me a lift when I hear it! Thanks for sharing that with us Carol.
Faith (in the future
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Hi everybody,
Wondering if any of you will share information on how long you've been on Femara? I was diagnosed in May and they put me on Femara right away. It looks like, from my internet research, that the longer a patient stays on the first medication, the better that is. My oncologist will give no time frame on how long I will be on this medication. She says that every person is different and there is no way to know, but I'm trying to determine if we are talking months or years?
Someone posted they had been on it for 21 months and counting. That's encouraging.
I also read in a post a few pages back that everyone agrees the scary statics on-line are out of date and don't include new therapies. Also encouraging! Can anyone elaborate?
Also, my pathology report says "extensive bone metastasis". In talking with one of the nurses, I mentioned that and she said "they always say 'extensive.'" I have no pain to speak of and this whole thing came from out of the blue. She may have been trying to make me feel better...
I'd appreciate any information you'd be willing to share.
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Linda, Raphael is adorable! He looks much older than just a day. How much did he weigh?
Faith, that Mary Anne Radmacher quote was given to me by a bc-survivor friend when I was first dx'd. It's literally what kept me going many nights when I didn't know how I could. Here it is with an image, if anyone wants to save it.
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Amy. Such calming pictures. So beautiful
Rachel great pictures
Had an amazing day yesterday. First my son brought our grand daughters to visit. LastWe had lunch and then took them shopp for hair accessories.
Last night we had dinner with our DD and her French boyfriend. He is so sweet and loving. He told us that he loves her wants to take care of her and asked if he could take her to Paris to live. He wants to broker a peace between her and our son who haven't talked in over 5 years and invited us to meet his family in December. My DD cried when he went to the men's room. She is the happiest she's ever been and was thrilled we all got along so well. This is why I try so hard. I want to see her marry and have children. I just have to be there for that!
Babs
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Deanna - Raphael weighs a whole 9 pounds! He was past his due date, my niece had to be induced but then complications arose and ended up having a C section. Both are doing well.
Alcaroll, I've been on Femara since Dec. 2013 and counting. A little break in that period with Tamoxifen because we thought there was progression and then right back on Femara. Stats are old and outdated because they are irrespective of the type of BC and new treatments have come along since. I'm sure others have more info.
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Linda, You nephew is just beautiful. He looks like he is trying to say something in the pictures. Nine pounds? Wow! Congratulations. Enjoy that beautiful newborn. They grow quickly.
Lynne
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Deanna, thanks for the source and picture of the original quote on Courage. It is becoming my new mantra.
Faith (in the future
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Rachel, I'm so glad you had a good family vacation and love the smile on your face!
Amy, Where on Lake Superior are you? So serene.
Linda, So exciting to have a newborn in the family. I'm sure you will give Raphael lots of love.
Babs, Your daughter's boyfriend sure sounds like a special guy, and to hear you say you had an amazing day is music to my ears.
Went to a foody festival yesterday called Taste Of Madison where over 100 vendors were selling their signature foods for 3-4 dollars for small samplings. Thousands of people there with lots of food and music. Nice day to be out as it was breezy and sunny. Heard on the news today that close to 250,00 attended this weekend. The lemon lavender cupcake was delicious, and the Falafel, and chicken satey, and on and on!
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good morning.
Linda Lou -. Had to go back and reread your post. Lol. Thought you said all that happened at a football game. I've always hated football but thought wow what have I been missing.
Lindae. -. Raphael is just adorable. Looks like he is already smiling for the camera. What a ham. I agree he looks too attentive to be so young. Guess that's how you come out in Canada. Lol. I remember when you first talked about your neice being pregnant and wanting to be around. Looks like you've met another goal. Love too see so many people surpassing their goals.
Alcatel I was on femara 26 months. It was kind too me. Yes it's true that the longer you are on any tx the better. Buys more time for all the exciting new tx coming available. Not sure about it having to be just the first med because we just have to try tx's til we find the one that works on our specific cancer, which is different for all of us.
Deanna. Thanks for posting that image I will add it to my inspiration board. It's getting so full I am about to start another one
Babs. How old are your gd's ? Glad you got to spend time with them. Loving your DD boyfriend. How do you feel about her moving to Paris ? So far away
Bbl
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Thank you all you wonderful ladies!
Patty - What a chuckle you gave me! Yep, that's how they come out in Canada.
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i had another great day yesterday. Couldn't even take a nap. I had so much energy. Super glad ive done so well while the boys have been out of school for a long weekend. I really believe the X must be working. I haven't had so many good days in a row since diagnosis. I am so excited.
Hugs to o all
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Bluefrog, it looks like you are having a wonderful vacation, that's one area of the states I've never been too, but would love to visit someday
Zarovka, I hope you heal quickly. I'm actually doing so much better today and no pain killers for three days now, so I think other than the root canal this Friday, I'm probably good to go. Will keep you in my thoughts and prayers
Linda, what a beautiful child, they are such a blessing
Alcarroll, I'm hoping too, to get a long time on Femera. I'm having zero side effects, so hoping it's working.
Babs, that's a great reason to fight hard
I hope things work out for them, and they live a long and very happy life together Ok, I have to admit, I am not now, nor have ever been physically active at all. Working at a desk most of my working life, and then caregiving for my father in law, my mother, and my husband, as well as my brother have taken up 10 years of my life. I haven't ever wanted, nor felt like getting out and even walking on a continuous basis. So this is going to be very hard for me, although I do realize it might help me tremendously. I'm a large woman, have always been large, come from a family of large people, so not only am I fighting a lifetime of NOT working out, but also genetics. I'm going to try, seriously seriously TRY to get out and get moving. I hope it helps a little, although I'm not sure how well I will stick to a schedule of that with my other health problems. Keep your fingers crossed for me!
Have a great day!
Blessings!
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Linda I guess I missed the post about Raphael. Just went back to it. Congrats. He's beautiful!!!!
Patty my gds are 5 1/2 and 3 1/2. We don't see them often since my DIL dislikes us but when we do its a great joy! As far as my DD is concerned I've never seen her this happy so if she moves to Paris then that's ok. I'll just have to visit often!!!!
Bab
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Music to my ears Patty!
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Babs, praying that we all last a while. My DD is only 22 and still in college...so I have a ways to go.
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Gracie, The important thing to remember when you begin to exercise is to start slowly. You aren't used to exercising, and if you overdo it, you can get hurt, you will feel pain the next day, and you will be discouraged and maybe even give up. Try walking at a leisurely pace, just 10 minutes at a time is enough. If you are winded after 5 minutes, rest before you do the next 5. Start with 10 minutes a day. Once you are strong enough and comfortable with 10 minutes, increase to 15 minutes or do 10 minutes twice a day. Don't rush it. Slowly increase the time until you reach 30 minutes a day. If it takes 6 months to reach 30 minutes, that is okay. It is not a contest. Once you reach 30 minutes a day, you can slowly increase your pace if you want to. Do you have a friend to walk with? If not, that's okay, too. Walking alone can be good for the mind. The only reason I asked about a friend is becausesometimes when you don't feel like walking because she can guilt you into going. Don't expect instant results. Walking is good for your insides even if you don't see an quick change on the outside.
Lynne
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Lynne, that was great advice. (As always). I never thought I'd be able to exercise by walking a half hour each day, but I feel better after I do. It's good for our arthritis especially us on hormone blockers.
Patty- your post just makes me so happy!!
Babs- I'm so happy that everything is working out so nicely with Your DD. Sorry about your DIL. That stinks.
Gracie- I was first on letrozole back with original dx after chemo rads tamoxifan and I think the 5 year was up sometime 2004 ? I don't remember the SE being anything like it was for me In the past 10 months. The more I research, and use myself as a symptom watcher and checker I find out that I just ache period. Especially where I have had mets. With that being said if you look at SE from xgeva they are quite similar. I'm on faslodex now and I think this is no walk in the park either but if it can work I don't care. I do know walking gives me more energy but I just started walking only a couple months ago.
Z- glad that tooth ordeal is over.
We have a fall day here in NEw England. Love it actually.
Hugs Carol
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Back from the wedding - I'll post a photo of the couple - this is my second wedding in a row where the bride wore a colored dress and the bridesmaids wore white. Very different but I liked it -
Lindalou just outside of Two Harbors about 30 minutes north of Duluth. Thanks for asking.
Amy
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GracieM - how long have you been on Femara?
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Ladies, I finally got to go back and read all the posts, was hard to move forward not knowing how everyone was doing. SO it will be long, I will divide it. Let's hope that with this week's scan news again, I don't fall behind.
I was already depressed and finally trying to post here. I am reading how many of my so lovely ladies are going through the same. I started with Cristina's post, Cristina oh dear, you are so sweet to just pop in. We are all so touched by what you are going through. I can't stop crying, you guys are all so special, and it's really hard to go through this disappointments. I see Dani in you. Also with the kids, and this constant knocking down, she is also trying so hard and so much dignity.
I could not even get to this thread really. Since Dani was dx with liver mets and the skull mets growing it's been very hard emotionally.
Amy, Lynne all of you. I hate to say it, but this plays all the time in my mind, the moment that I open my eyes, I have to make sure I am sleeping at night, I take something to sleep and as soon as I feel I am waking up I take something else. During the day, I am busy so it's easier. Dani also tries to keep busy a whole day, I do feel the Devil is always there.
But I must say the people that treat you with kindness, the receptionist at the docs office, the secr on the phone when one calls for an appointment, and those wonderful women here, does make a difference. We all have to hope. Maybe it won't be exactly as planned, but it's still there. Like Deanna said I also keep praying God should just keep pushing till they find something new. It's the only way.
Amy if it's still in the bones only, you do have a great chance to still quiet this monster for a long long time, I know exactly how you feel sweetie, we went through it just now again, and it's been all the time with Dani, every scan aside from a few in between, was always something. How much can one person really take. I hope you have a good support right by you.Amy regarding your "hard work" assistants, we gotta do what we gotta do. Lovely setting.
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Lynne I know, it was such a shock to see you at the liver thread. Are they doing biopsies? I so wanted them to do for Dani, but so far the answer is that it won't change anything.
I have to read all the stuff, I thought I'd go back and read first, but then I get tired, so I better just post a bit at a time. I was more at the brain and liver mets, but then 10 days ago Dani told Onco she had numbness on her leg, and she had an emergency MRI to the lumbar, lo and behold she had a compression right at the sacrum just about on the spinal cord, Friday midday, we got a call, she must come in asap, she could not believe it, the kids were already off from camp and not started school yet, and she was enjoying with them, but I told her there was no way around it. We were in a conference call with the doc. She did go, I was with the kids, they were waiting for her even though it was late on Friday already. I was so touched. I emailed the doc, that I appreciated how she was patient with Dani, (that was horrified that she had to go asap), Onco send back email saying she was really happy I pushed it and was there to help things along. That was a nice moment. Sunday she started tx, she was the only one there, they just opened the place for her. So this is been going on, she goes in the wee hours of the morning so she could be back for the kids. Even though I am there, she wants to be with them. It's been kinda insane.
Today at night, she is going for MRI from the brain, to see what's with those mets, that she knows did not get better. And Tuesday night for PET/CT. Everything is on the table, bones, liver, we are really drained. But in between there was bday party for the little one, and we are hoping. Just need to get the message across the Insurance, that keeps asking me, I should let them know when I think it's time to stop. ARE THEY CRAZY????? But I can't say a/t bcs it's this one person that takes the case, and they inform the Biggies in Ins Co., so I gotta be nice to her. I don't see another way. Well, I made sure to tell her that there is not question that we are not even close. She is perfectly fine. AGHHHH.
Aww Wendy, it's so sad. Just a big hug. I have nothing to add. To depart from your lovely horses, it's definitely an act of love.
Lita – flowers thank you. Maybe Xeloda will help, it did help a lot of ladies with the liver mets.
SilviaH so true, that's exactly how I think we all feel.
Chelle, just saw Jaxon, how precious, the new life!! You are right. Worth the fight.
Really sorry for not keeping up, and worrying you. Kaption, Linda, Carol, Bosco and so many from other threads, and I know all over here, thx for keeping tabs. It's been stressful also, bcs someone very close to me was just dx w metastatic Prostate cancer very aggressive out of the gate, total shock. And I am practically the one guiding them, keeping up with the tests, and just emotionally draining. He is in his 60's never sick. Still trying to do the mundane.
Aww MaryK – Dani has it for years, here and there they did Radiation when it got real bad, of course you could walk. Maybe the person you heard that is not walking, has many other things going on. And it could be in much worse state. There is a lot involved. And as Z said Xeloda had proven great for so many. MaryK it could be too late, but Dilaudid worked very well for D. Mary it could be as simple as a sciatica pain. But that pain could be real bad, so for sure you should see maybe a neurologist for the back, or orthopedist, someone that would prescribe an MRI you would have the answer no time.
Z aghh toothache, the worst. Hope you are doing ok now.
Aurora how are you feelilng now?
Deanna, Sedona is a dream. So happy for you.
Rachel love your pictures, it's an inspiration for all of us.
Carol I am also slowly going through the threads, I see now what you posted when they first told you about the new lesions! What a shock!! As I mentioned on PM, I will check on later posts,but maybe a trial would be even better no? Why would they give you Faslodex by itself? And they would not radiate these spots, are there many? I can't believe you saw Dr. Stover. Nice. Oh Carol, you go KICK IT'S BUTT!!!
I saw your link thanks so much, it's terrific, I also like the "Fight song".It's fantastic.
Hey Babs good for you, marvelous!!! Congrats and many, many more happy ones.
Patty sweetie, how are you doing? So happy to hear that the pain is getting better!
Jennifer wow, that might work very well for you. MRI
Gracie it's a tough one. The truth is sometimes you could have people around you but it still feel lonely. There is a thread for insomniacs in BCO could be interesting for you. I am not single, but my mind is constantly churning with what ifs and what to do next, I pop some sleeytime tea with something that works for about 4 hrs, and as soon as it wears off I pop something else, otherwise it's a miserable night. Also, if I think of something in the middle of the night I write it down now, and oh, good old TV.
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Kaption great news about the PET.
Kathryn yeeh for you. Have a great dance with NED
Babs that's not acceptable. And they don't even excuse themselves,
Vevs so sorry you had to join. Stick to this crowd, they will help you a lot. Seems to me you got good company. I totally get what ou are saying about the chemo, my daughter Dani has 2 little gilrs, and she tries not to burden with that, and so she hopes her hair will not fall out again.
Linda so precious is Raphael! It just makes the world stop.
Deanna that's just fantastic. Faith thanks for mentioning. I already downloaded and adding to my fridge. We need this everyday!!
Babs how do you feel about the reconciliation? Could you do it? It must be so hard, so much pain but sometimes it's possible. So happy for your daughter.
Hugs and kisses for all, Lindalou, Wendy, Mary,Annie, Bluefrog I am so sorry if I let someone out, but you are all in my prayers, I think about you all the time!!!
Thank you all, we know how much you care.
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Momallthetime, we've missed you! Thanks for updating us on what's been happening. You and Dani are always on my mind and in my prayers. So nice of you to try and address everyone here, you're amazing. Sending healing hugs your way, Annie
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Momallthe-so happy to hear from you. I've been thinking of you & Dani. It must be so hard on both of you! Please reach out to me if/when you wish to talk!
I would be thrilled if my kids reconciled. As a Mom, it's way too hard being in the middle of their bulls - -t. And, we can't celebrate good things together!
Babs
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Momalltt. Can't believe all you are going through. Glad you checked in, I think about you and Dani a lot. Sending lots of hugs and prayers.
Faith ( in the future
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Momall as always I don't know how you do it, being the caretaker to your daughter with all that implies and yet you come here and catch up to us and mention us by name. I'm feeling alright , no pain, the hip replacement has healed nicely and I'm doing PT. My onco stopped chemo 4 months ago and started me on Ibrance/Faslodex. A PET scan a month and a half ago showed healing and no new growth so I call it stable. However my tumor markers are rising and my doctor mentioned possibly changing treatments again :-/ I don't agree with her but we'll see what my next tumor markers look like. Hope Dani gets good results with the Xeloda and that you catch a break once in a while.
Aurora
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I notice several women have posted about dental procedures and tooth/jaw pain. Is this a s/e of the chemo or some part of treatment? I have always had decent teeth, but now, after 3 years of active treatment (I'm Stage IV) I have "condensed osteoporosis in my right lower mandible and have suddenly developed pain under a tooth that I have had a root canal & crown on for years. It is giving me extreme pain, that my narcotics are not helping.
My Oncologist doesn't want to do anything about it, because he's worried about Necrotic Jaw Syndrome (NJS) that 1% of women on Denosumab get. And my low WBC and risk for infection with dental procedures. My dentist won't touch me without the Oncologists permission.
Does anyone have any similar experience with this or NJS? I'm at my wits end. I use Orajel and Anebosol and salt water swish and spits.Thanks in advance for and advice or related stories.
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Mom, I've been thinking about you and Dani and all that you're going through. You are and will continue to be in my prayers
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thank you momaallthetime, I am feeling better already. Support and kindness goes an awfully long way, my fighting spirit is back, thankfully. Sending you and your daughter much lov
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Momal, It is good to hear from you and the update on Dani. As always you provide her with so much support, but remember to take care of yourself as well.
Patty, I can hear the strength in your post and so happy that you are getting some pain relief and able be with your family.
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