Bone Mets Thread
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Hello to all,
Deanna, I am so sorry to hear your scan showed worsening of your mets but I'm glad you already started your new treatment and I visualize it improving things very quickly! Yes it's scary how quickly things can turn, something we all fear. Sending you hugs and healing energy.
Cathy, I hope they figure out what is causing your reactions, please come back and let us know when you have answers. What sort of allergic reaction is the chemo causing?
Thank you all for the birthday wishes, it means so much. This was a day I will never forget! I started early this morning with a birthday breakfast with one of my friends. Then 2 of my high school girl friends brought me for a beautiful birthday lunch and my eldest daughter joined us. Tonight my dh and dd's pretended they were taking me for our usual Friday dinner at Boston Pizza. Well I walked through the door and 25 people yelling surprise, family and friends, I cried hysterically. They fooled me and honestly I still can't stop tearing up over it, I was truly surprised. I will post pictures when they get sent to me, for now I'm posting one of me and dd1 at lunch today. Hugs, Annie
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happy birthday Annie and beautiful picture! You and your daughter could pass as sisters. Enjoy every moment of it.
Aurora
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annie beautiful picture and it sounds like a beautiful day. Happy Birthday
Deanna and Patty sending positive energy and thoughts your way. So sorry to hear of your progression.
Terre have a great weekend with your husband. I have no idea what an astromy camp is but love people who follow their passions.
Good wishes to everyone
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Annie- What a nice picture of you and your daughter and a surprise party to mark your 50th birthday! How great is that? You look fabulous!! Anxious to see more pictures. So happy for you!
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Great picture Annie! You look so young
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Annie, what a wonderful day you had. I teared up, too, just readingabout the big surprise party. The picture of you and your daughter is beautiful. Happy birthday.
Lynne
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Awesome, Annie!
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Just found my PET scan results on the hospital portal. It reads "Left proximal femur lesion is stable and remains concerning for metastatic disease." I have an appointment with MO in a few weeks; is there any reason to call her and ask for a biopsy now? Or, does its stability mean that a few weeks won't make a difference? Thanks for your good thoughts and prayers!
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Hey, I' haven't been on bco in a while. I've taken a short break from treatment. Just needed time out, and my friends got together to raise money for me to take my dream vacation. I've been in Jerusalem for three weeks, and will be here at least two more weeks. I'm here with my daughter.
From my prognosis June, 2014, I didn't think I would make it to last Christmas. Since there was no cure for me I declined chemo only doing Herceptin/Perjeta. The worse I've gone through was radiation for spine, and Gamma Knife zapping 4 brain tumors (and mouth sores for 4 months). My lung and liver mets are stable. I'm still independent and doing fine.
Since I'm in Israel, I don't have my doctor near by as why I'm writing to my bco bone mets friends. Time differences also makes it difficult to call Oregon. My problem and questions is:
The second week in Israel, coming home from the Dead Sea, I noticed hip pain. It feels like bone pain. It seems to be in the same location as one of the places where they radiated my hip. The pain is worsening and relentless. I've quit taking the blood thinners cause I can't do INR's here, and because I'm living on IB Profins due to bone pain.
My question ... if they already radiated that part of my body can they radiate it again in the same spot? It helped with the pain before, and I'm hoping it will again.
I'm also talking to Herzilya Medical Center in Israel. It is one of the leading hospitals for cancer treatment in the world. People come all over the world to be treated at Herzilya. I had a 3-way conversation with them, my insurance and I to see if my insurance would cover treatment in Israel. It would might be a miracle, and a once in a life time treatment that supposedly has a 90% cure rate; although not sure for wide spread cancer. I will know by Wednesday if my insurance will cover me. If not, I will leave early September and get back on treatment. It's been nice to take a break.
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Hello to all,
I'm still trying to recuperate from yesterday's excitement, feeling very sluggish today and just keeping low key because tomorrow is our 25th wedding anniversary celebration and we are going to the winery where my youngest daughter works for supper. I'm going to be exhausted. Thankyou for all the birthday wishes and the nice comments on the photo of me and my daughter.
Elaine, I don't think a few weeks would make a difference on a biopsy, either way whether it is stable or not. But if your anxious to know maybe push to get it done sooner. Prayers that their suspicion of metastatic disease is wrong.
Hindsfeet, so surprised to see you here, when I saw you post I had to respond. Glad your lung and liver mets are stable and that you're still independent. I hope you're having an amazing time in Jerusalem but sorry to hear of your hip pain. From what I understand it depends on how much and what type of radiation you had done the first time. I had Stereotactic and Cyberknife and my rad onc said if need be he could radiate a second time because even though it is a powerful radiation it's preciseness allows them to deliver it at a much lower gy than standard rads. I believe that is what it is called. Good luck with your treatment, it was nice to hear from you, and please check back with us.
Hugs to all, Annie
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Beautiful pix, Annie! 50 is the new 30, and your b'day pix certainly proofs it!
Hi, Hindsfeet! I keep up with you on FB, but didn't want to appear not to acknowledge your post here. So happy you made it to Jerusalem, and I'm praying your insurance company decides to let you have tx there! And I hope you'll share your experience with us. And I think Annie answered your question. It all depends on how much RT you've already had to that area.
Putting on my makeup earlier today and was totally taken aback to notice peach fuzz growing along my chin line! I know the meds I'm on (Faslodex+Ibrance) can possibly thin our hair, but that chin stuff was quite the shock -- laughable now, but not when I first saw it! Glad I just happened to look in a magnifying mirror and saw it before I went anywhere! Yikes. I swear it literally appeared overnight. Anyone else???
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Deanna, I rememeber getting long peach fuzz on my jaw line and being shoched by it too. It was after I finished all my chemo after stage 2 and my hair was cominmg back. It went through a phase where I had super long lashes and my arms and everywhere seemed to have more hair than usual. I thought maybe it was from steroids. I had to cut some of the hair on my face, it was long and I was horrified! Haha it went back to normal in a short time, maybe two weeks.0
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No hair in weird places that I've noticed Deanna. I'm eating a Haagen Dazs ice cream bar, something I never do. Took a walk with the famiy after dinner and my daugther took photos along the way and made them into a cute little stapled together book- the minds of 7 year olds- so creative! I had fun helping her.
A little more pain than usual today and my mind has been in dark places today.
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So glad your birthday was good, Annie! Great picture!
Hindsfeet - great to see you again! Sorry you have hip pain and praying your insurance says yes. That would be awesome.
Deanna - Here in New Zealand, we have Movember (November), where guys grow mo's to raise money to support prostate cancer research. Most of the guys I work with don't do it, I think it's because their mo's would never be a nice as mine.
I also have peach fuzz and the occasional hair that I notice when it's like 2" long. Yikes! Just not fun at all. Elaine - don't have any answers for you other than what others have already says - depends on how much you got before.
Astronomy camp is where interested people meet up at a camp (usually a Bible camp here, ironically), bring their telescopes, look at the stars, and listen to talks by various people. We had a guy from the US and one from Canada join via Skype and update us on NASA projects and the recent Pluto mission, respectively. They do them all over the place here in NZ. The one we go to is about an hour from home. We're also getting ready to start up the Levin Stargazers meetings again. Levin is about 20 km from where we live and the City Council lets us meet in a park one Sat night a month. The guy that was running it moved, so DH and I are taking it over. I enjoy it, but it's his true passion. And given that it was his birthday on Sat, had to to to astro camp. Funny note: one of the guys from the astro club got written up in the paper. It said "He's a very well known astrologer". NO! Astronomer! Big difference.
He got teased quite a bit at camp.Hugs to all,
Terre
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Elaine, if you are anxious, I think you could call for a speedy biopsy. Why not? The sooner getting a treatment if necessary the better.
Deanna, sorry about the confirmation of the bone mets worsened some. Hopefully just by a little! One and a half year out of the first line is a good result. With Ibrance added, hopefully the length of the current run will be at least doubled first and much more after!
Annie, beautiful picture as always. You look just great!
Everyone else, Happy Sunday!
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kiwi cat. awesome story of astromy camp. Continue to follodw your passion.
Elaine so sorry for your worry. Hope you and your treatment team find the next best step
Thinking of everyone this Sunday wishing everyone a good day
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Hydranne - thanks for the tip! I have this vision of nostril waxing and am laughing. Oh dear! But the diet sounds great - you've inspired me to do Mexican for lunch.
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Hello to all,
Ok guys try not to laugh but on our way to our Anniversary dinner tonight I pull down the sun visor to look in the mirror, you know to make sure I did a nice job on my make up which I rarely wear. Anyway OMG I have 4 dark brown chin hairs, actually one was so dark it was almost black and that one stuck straight out! Why did I not see this at home where I had my tweezers so I could pluck them out. I'm literally in a panic, ask my daughter if she has tweezers in her make up bag, no such luck. It took me 10 minutes of trying to grab these hairs with my fingers and yank them out, I was impressed that I was actually able to do it. That would have been so embarrassing, good thing they keep the lights dimmed at the winery. Lesson learned, check more often for facial hair. And Deanna, I do have major peach fuzz since I've been on letrozole, I hope I'm not growing a beard! And yes 50 is the new 30 😃.
Hydranne, lol at waxing inside the nostrils! Makes my eyes water just thinking of doing that. Ugh to hair in unwanted places.
We had an amazing anniversary celebration, unforgettable! I cried and cried and cried some more. What an emotional few days, needless to say I'm exhausted. I will post pics tomorrow if anyone is interested in seeing them.
I hope you all had a nice weekend and with very little pain. It's sad really, that I don't remember what it feels like to not be in pain. Wish I could make it go away for all of us.
Hugs, Annie
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yes pictures. And still laughing about your discovery
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Annie, too funny about the 4 chin hairs! I can't believe you managed to pull them all w/out a tweezer. Where there's a will, there's a way! And Happy Anniversary!
Heidi, sorry about your peach fuzz experience, but knowing I'm not alone made me feel a little better!
Terre, how cool is astronomy camp! I want to do that! And I love people who follow their passion, so good for your DH!
So, Hydranne -- does your whole enchilada diet contain enchiladas? Or did you mean it in the colloquial sense -- as in eating the whole thing, whatever that might be? Either way, I got a big laugh out of it!
Christina, hope your pain improves soon w/Faslodex & Ibrance. Mine is hanging in there -- some days a bit better. I have my next Faslodex shots on Wednesday, and I'm wondering if they'll check my CA27-29 this soon (two weeks)?
Tomorrow I am headed back to UCLA for an evaluation by a woman dentist/MD/PhD who can tell me if I can start Xgeva. I finally figured out my local dentist just was not getting the urgency of the situation -- trying to save a tooth that started getting lose after I had the one next to it pulled, as well as telling me some things that led me to believe he was just not well versed in bone building drugs. So I was very relieved to have my UCLA onc offer to send me to this UCLA dentist who is an expert on Xgeva and will be able to get this sorted out. Just dreading the traffic, as always, especially in this heat wave we've been having, which makes people crazy.
Dune, where are you? And Momallthetime, I'm worried about you too. Hope you'll both check in. And Patty, are you home yet?
Here's to a successful week ahead -- less pain, falling TMs, few SEs, great scans, photos to share, and the energy to follow our passions. Hugs!
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Good morning ladies,
You all gave me a good chuckle about facial hair! I had a doozy one right beside the lip, I felt as if there was leftover food, until I took a good look! Oh calamity! I just cut it and went off to electrolysis. No, that is too much.
Happy anniversary Annie and waiting for pictures.
To all a good week and sending hugs to all of you.
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Chin hairs is the one thing I'm OCD about. I hate them and get very obsessive about pulling them out, either with tweezers or my fingers if I'm not at home. I so can relate to your story Annie.
Amy
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Why is it that those darn chin hairs are only visible once you are in the car heading somewhere? I get mad at my husband for not saying something to me about them.
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Hello to all,
I'm so tired from such an emotional weekend, I cried so many happy tears and then I would start to get sad because I love my life and everyone in it and I hate that I'm dealing with this. However I am grateful for my recent good news. Ok I promised pics, so here they are. The picture below is outside the winery after our dinner. The chefs my daughter works with made us a beautiful desert plate and a belated happy birthday pre-desert for me. Yes pre-desert, does it get any better than that?
My beautiful girls who planned the whole evening, my youngest dd had a menu made with a dedication to our 25th Anniversary. I am going to frame it.0 -
Annie, Thanks for sharing the great photos of you and your family celebration. Looks like a perfect evening. You and your daughters look stunning! ( hubby too!)
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Annie, such beautiful pictures of a happy time ! Your family is beautiful
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Beautiful pic Annie! Happy (belated) Anniversary! Looks just epic and so glad you had a good time.
Deanna - glad the pain is a bit better; hope it continues to abate. Also glad you're getting to see the dentist at UCLA. ONJ sucks.
Gotta get to work, but wanted to say hi to everyone and send hugs.
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I've been AWOL except for short bursts here and there for a while. Nothing drastic but adjusting to new chemo (Doxil) that leaves me both physically and mentally exhausted some days. I read stuff but don't have energy to post.
I also was adjusting to the weirdness (to me) of TMs going way down, pain gone and - PET/CT showing progression. After the phone call from the onc I went in to talk abot the whole thing. We had more info then. TMs taken 2 days after the scan were already going up so it wasn't as weird as I thought. He also said the bones are more sclerotic (medspeak for "harder") which is the Zometa and that's probably why I don't have pain. Scan also showed some of the liver lesions were partially necrotic. Onc says that means tne Navelbine worked for a while then stopped working. I hope I get more time with the Doxil. At least it's only once a month instead of once a week.
Hindsfeet, I am so glad to hear you're visiting Jerusalem! I love that city, and I know how fortunate I am to live less than 1 hour away. What sort of treatment are you lookiing at in Herzliya? I'd be very intereested in knowing.
Myra - Mazel Tov! Grandchildren are THE BEST.
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Oh Annie, those are wonderful photos! I am so happy you had such a wonderful weekend!
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Leah, nice to hear from you! So sorry the Doxil is leaving you feeling so exhausted, it's not right that we have to endure such horrible side effects from these medications, as if the cancer isn't bad enough the meds that are helping us sometimes make us feel worse than the disease. That is good news that your mets are sclerotic and that the liver lesions are at least partially necrotic, I'm praying the Doxil finishes them off. I am happy to hear you're not having any pain, we have to take all the positives. Please keep us posted, wishing you the best on this treatment!
Lindalou, Lynnwood, Terre and Cristina thank you for the kind words and I'm glad you enjoyed the photos. Time for some others to post some pics now, I'd love to see all of you!
Well the emotional days just keep coming, today at 3:00 I will be seeing my friend who is here from Vancouver Island in Victoria, I have not seen her in 20 years. I am getting tired of crying, I'm so excited to see her, I named my youngest daughter after her. Wow this has been the most emotional few days, crazy!
Wishing you all a great day. It's been a little quiet here, missing alot of you. Hugs to all, Annie
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