Bone Mets Thread
Comments
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has anyone lost all posts? Can't find anything. Myra.
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Same here, Myra, but the lost content has reappeared for me now. I'm pretty sure it is/was a glitch with BCO's software -- not us.
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mine too. Myra
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Deanna - Love your comment "don't postpone joy". That one will stick with me. Thank you! Sad and sorry to read about your cousin. You and her are so fortunate to have each other as family and friends . Big hugs ~ Karen
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Deanna, so sorry for the loss of your cousin, 52 is far too young. Thank you for the powerful message "don't postpone joy". I've been trying hard to live by that, and finding something fun to do everyday.
Patty, I got a little chuckle when you said 61 brrrrr. After our -30 winter and that's before the windchill, 61 felt hot to me, I literally couldn't keep my coat on during that walk. Of course the hot flashes from letrozole help keep me warm too. Today it got up to 78 and honestly I want to turn on the air conditioning. My friend sent me a good night text and said sweet dreams, and I said I think tonight it's sweat dreams for me. I have a fan blowing on me right now, it won't be long I'll be freezing the family out of the house. Oh well they can bundle up, I can't take anymore off 😁
Hugs to all, Annie
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Patty, you sound so much better! Great that you got out and had some good time with DH and then had family movie night. Those things we took for granted at one time...
Terre, I'm picturing you in a velvet skirt going to work! Hope you find everything soon. Glad the move is over and you can just settle in now.
Deanna, I'm so sorry about your cousin -- much too young. And you're right about never postponing joy. Nothing is promised to anyone, and we all have to take advantage of right now, whether healthy or not so much.
Dune, are you off playing so hard you don't have time for us??? Good for you! But let us now you're OK!
Carla, haven't heard from you in a while. Everything OK?
Sorry that I missed some, but I have to get some things done. We're leaving for Florida Wednesday morning, and there's always a bunch of little details before traveling, especially since we have a new dogsitter staying with the girls while we're gone. They're very spoiled pups!
Take good care, everyone. Sharon
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Patty, so happy to hear you are finding some time to enjoy your family. Your excursion with your husband is exactly what you needed. Keep finding ways to find enjoyment, even if you aren't 100%. I really think hanging with our kids, eating meals together and finding special moments helps us heal.
Deanna, I missed you in Vegas. We were there too! Used it as a home base for some excursions to Zion, Grand Canyon, Lake Mead, etc. loved spending uninterrupted time with my husband and youngest son. I was exhausted, but it was worth it! Did you happen to run into Bruce on the strip?
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Patty - glad you're doing better!
Deanna - so sorry for your loss. That's so sad. And indeed, don't postpone joy!
Romansma - love the picture - just across from the Mirage! you went to my favourite places. If I could only go back to one place in the US, it would be Zion. I do get homesick for it. I grew up in the Black Hills, so I get homesick for it in the summer, but I'm over that as soon as it snows there. So glad you got to do the trip!
My husband found my high viz vest, safety glasses, and steel capped boots. I reckon those will look nice with the wedding dress. After all, if it was good enough for Elvis on the strip, it's good enough for a field project - looking at rubbish (doing a waste audit).
Sharon - glad to see you're off on a trip too!
Hi to Linda, Myra, Karen, Peg, Annie...and anyone else I've missed.
Hugs to all!
Terre
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Hello Ladies, I am new to posting to this thread, but not new to reading various threads on BCO since 2007. Hope my story isn't too long. I was diagnosed 12/2006 with ILC, Stage I. My Oncotype was an 11. My cancer team told me it was my decision for Chemo, but with that number, my chance of recurrence was 5 percent. My treatment plan was Lumpectomy, seven weeks Radiation, followed by Tamoxifen. 2011-2013, I was having to have several D&C's, because a side effect from Tomoxifin was thickening of the endometrial lining -- which causes severe bleeding! Which is what was happening to me. I had three D&C's and my Docs said "you can't have too many of these". Soooooo, in 2013, I had a partial hysterectomy -- taking tubes/ovaries, which put me in immediate meanapause. And now, because of that, I go off of Tamoxifen and start Arimidex!! In September, 2014 I woke up with hip/leg pain. I also have Fybromyalcia and thought, it's just really a bad flare up. I was then diagnosed with Stage IV. It had gone to my Pelvis, hips, spot on rib and spot on skull!
And here I am! Just being able to read your posts and know that there are others out there -- is comforting. I am currently on Herceptin, Afinitor and I think Arimidex. I'm having a PET Scan this Wed. Never had one and I'm quite nervous to hear results.
Oh, I live in Western Suburbs in Illinois. Looking forward to meeting you ladies. Bev
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welcome Bev. Sorry you are here, but happy you found us. The PET scans are somewhat freaky, but I think better than MRIs.
Terre, I woild love to see your outfits for work! They seem hysterical! How was the move? My DH and I are considering moving, but I am afraidI wont be able to handle it. This weekend we did some purging and counted change, in our change jar for 2 hours and my side still hurts.
Hope, Bruce looks really good. You are one lucky gal, Bruce for coffee and Ashton for lunch.
Sharon have fun here in the Sunshine State. The weather forecast for the next week is sun, sun, sun with a break in the clouds for sun.
Dune and Freebird would love to hear from you guys.
Have a wonderful day all....hello Deanna, Annie, linda and etal....more bloodwork from the vampire's today. I swear they cringe when they see me. Myra.
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Patty - so glad to hear you are feeling better & was finally able to catch a break!! Days as you described are priceless!
dlb - so sorry for your loss. Yes, love the "don't postpone joy," I've done far too much of that throughout my life!
Romansmom - such a nice picture!
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Bev - Just wanted to send you a warm welcome and good luck with your Pet scan.Romansma - beautiful pic. And what a beautiful couple!
Annie - I also had to laugh at Patty's comment on the temperature! Doesn't if feel good after the winter we had?
Linda
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Dunesleeper was last seen on 8 April on the site. That's very unusual for her - I don't recall her saying anything about going away? Hoping and praying she's OK.Linda
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Hi Bev,
Welcome to the forum. I also didn't think chemo was necessary as the chance of mets was low. It spread to my bones though - skull, hip, pelvis, and rib - but stayed dormant for 12 years. Last year it was discovered by accident while investigated a nagging sports injury. I've never had any side effects from Tamoxifen except depression so I guess I'm pretty lucky. Good luck with your PET scan - we can't get them in Ontario except in highly specific circumstances because someone decided that while they have far better detection capability they don't result in a change to the outcome sufficient to warrant the expense. I'd love to have one just to have peace of mind that the mets are contained in my bones and haven't made it to an organ.
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Welcome, Bev! I'm so sorry you have reason to join us, but you've found a great group of very supportive women here! And just a quick comment on your fibromyalgia... Have you tried going gluten (or at least wheat) free? It seems to make a big difference for some with that autoimmune condition, and in fact I was listening to Dr. Radio yesterday discussing what's wrong with wheat (which I also have a severe intolerance to), and what they were saying totally supported the fibro-wheat connection. And good luck with your PET today!
Hope, can't believe we were both in LV! We also drove out to Lake Mead, but didn't run into Bruce anywhere, LOL. (That was a look-alike, right? It's kinda hard to tell.) Anyway, glad you had a great time w/DH & your son!
Dune, where are you??? Hope all is okay!
(((Hugs))) to all, Deanna
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bev./ roxy welcome , jump in often about anything. a great group of women. dont try to memorize everybody just post it will come naturally.
dune - ok i bet you are having the time of your life after your last post but you gotta at least say hi ok??? worring about you my friend.
carla / freebird - same for you. quick check in please
ok who has dunes number and will promise to call and check on her today? its always important at least 1 person from bco has a contact # for you. i know being new its hard to know who to trust but some of us been around awile and we need it. so very scary not knowing whats happening with someone you may hjave been talking to for over a year some are many many years. there is 2 people on bone mets thread and 4 people on another ithread (it) who have my contact name and i theirs. you just bond after so many shared experiences. just jet another thing to think about . lol
annie - hot flashes lol keeping it real
sharon - florida vacay ? sweet hope you have an excellent pain free time.
hope / romansma vegas too ! you go girl. would have been cool if you had run into deanna on the strip. love the burce pic. you are looking like a million bucks. rock on girl. ! how did ds take the trip ? happy or sullen? they are so emotional at that time without worring whats heppening with mom. glad you are keeping it normal as possible. i pray this is the right treatment for you for a very very lonn time.
tracy - did you say dormant for 12 years - bone mets? thats amazing tell us more PLEASE
DLB - YOU DIDNT SEE HOPE IN ALL THOSE PEOPLE:? I KNOW YOUR EYES WERE FOR YOU DH AND RACING. DONT BLAME YOU . HOPE YOU ARE FEELING GREAT TODAY.
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I was private messaging her because we were going to meet up in Maryland when my DIL gives birth. I will try to message her again. I think at least email addresses might b e a good idea. There are so many lurkers around the Internet, it is a bit worrisome to give out too much info. I would hate to think that someone would target people in our situation, but they hit seniors, hurt children etc. the Internet is excellent for threads like this, but it has it's downfalls as well
Patty, you sound so much better! Keep up the good work. Myra
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Welcome to the newbies here. I know it's a tough time for you. Being here really helps with information and support.
Patty, thanks! My son told me how much fun it was to spend time with me and dad exclusively. He even mentioned how, at home, there are so many distractions and on our trip it was all about spending time together. He loved exploring, road tripping, and just hanging out with us. It was exactly what I hoped it would be, a time to be together and make memories that my family will always remember. I tried to put pain and fatigue on the back burner as much as possible. It boiled over a few times, but I was able to get it under control fairly quickly and get back to the fun. He is very sensitive to when I'm not feeling well, so I try to keep it on the down low as much as possible. Patty, I'm sure with your recent hospital stays, your kids are hyper-sensitive and it's understandable that Theys be a bit moody. As they see you recovering and life getting a little more normal, they should even out. Kids are resilient. We just have to support what they need too.
Deanna....I saw Bruce outside the Venetian. He was a bit waxy......
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hope so true thanks
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Hi all,
Welcome, Bev! And welcome to the low Oncotype/no chemo but still had recurrence club. Your situation sounds quite similar to mine and several others here. Sorry you're going through this, but glad you found us.
Still haven't found my clothes. I packed a suitcase of "leftover" clothes - stuff I was wearing during the move/cleaning, and a few other bits and bobs. Luckily I packed (for whatever reason) about 10 pairs of undies and 3 bras. And 3 shirts, and four pairs of pants. And a cardigan. Of course, only one of the shirts is really suitable for work. Found the rest of my formal wear last night.
But not my work clothes. They're probably in the garage - the movers did a good job, but things are in random spots. Tools in the kitchen and food in the garage. Oh well! At least the move is basically over with and I only have one more day in the office this week as I'm working from home on Friday.Patty - you are sounding stronger every day.
I think I remember reading something about Dune and her mom going on a trip? It's several pages back. Hope she and Carla are ok.
Well, best get some work done!
Hugs to all,
Terre
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Has everyone seen this? http://www.huffingtonpost.com/beth-j-caldwell/why-...
Please share! Together we can all advocate for more mbc awareness and more research funding!
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thank you Deanna. Amazing group of women and article. This is such a caring group here, let's put our heads together and see what we can do. Myra.
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Hi Bev. Welcome to the club, but sorry you have to be here. I've only been here since January, but I've learned so much and these women are so caring, you will find great support here. I had Stage IIb ILC in January, 2006, had bilateral mastectomy and opted not to do chemo. My surgeon was confident he got everything. I was doing great until November, 2014 when my tumor markers went above normal, and the trend had been upward for several months. That kicked in the CT scans, bone scans, then the PET to confirm. That was new to me, and it's not my favorite way to spend a couple of hours, but I survived. You will do fine, just let them know if anything bothers you. I also had a brain MRI because of the location of some of the bone mets. Also not a fun test. Anyway, I had been seeing my MO every 3-4 months all these years and felt I was pretty clear, but this January my tumor markers were at 99 and I had bone mets in my skull, thoracic spine, sternum, ribs, pelvis and upper humerus on one arm. I was shocked. I had no pain or other indication that anything was wrong except I had 2 colds, bronchitis, and the flu between October and Christmas. Obviously my immune system was very busy elsewhere! I couldn't understand how this could have happened. My MO said they now see bc as a systemic disease, and no matter how you treat it -- chemo, radiation, hormones -- nothing is a guarantee that it won't come back, even if there's no evidence of it for years, as in my case. I had taken tamoxifen for most of 5 years, plus several months of Femara, which I didn't tolerate well, and a few days of Arimidex, also not well tolerated. I had no problems at all with tamoxifen, but I had had a complete hysterectomy before ever having bc. It's all a bit surreal because I have no pain or evidence that I'm "sick" and yet I'm Stage IV with these bone mets -- maddening! I am currently taking Aromasin daily and receiving monthly injections of Xgeva, all of which I'm tolerating well. As of last week, my tm's are down to 22. So this beast can and does apparently lurk for years and then re-surfaces, no matter what you've done for treatment. My MO and several people here have said that this is being seen more and more as a chronic condition that can be managed, but, of course, the side effects of some of the drugs can be pretty rough. I'm happy if I can keep the tm's down and keep it out of any organs.
I hope your scan goes well, and that you start seeing good results from your treatment. If you have questions, this is the place to ask. These women helped me figure out a lot of things, including good questions to ask my doc. It has given me some real peace of mind as I move forward. Don't be afraid to ask!
Have to get back to packing as we leave for Florida in the morning. My sister lives there now and says it's hot and steamy, so that cuts down what I have to pack! I'll be gone for a week, and I hope everyone stays well and pain free. Terre, I'm seeing you in a velvet skirt and work boots now! Isn't moving fun??
Sharon
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Oh how I have missed so much....just myself got out of the hospital from a temp of 103.2 for 4 days...and met with OC today...and basically told he has heard of me wanted to stop the Halaven...well yes because of all the side effects...but told me...if I stopped chemo...it would take 6-8 mths and the cancer will have won...so I'm cont...the chemo...65% more chance to stay stable for a couple yrs.... and we are discussing how to help my "MIND" which is more of a SE to me since I live alone...and am doing this journey on my own...to stay in tune and in touch with the clinic...I freak myself out sometimes...but it just would be nice to have someone here with me to put my head on and be pampered....I have a great caretaker...but she leaves...and most of my thoughts happen in the evenings...Well just will have to get more strong will and tougher....and handle my thoughts better...and get distracted more...
I can't address everyone...to many of you beautiful woman to remember to address...but I am loving you and supporting the cause with my viral hugs...Love and Respect Carla
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oh carla. I was afraid you were in the hospital. so very glad you are home now. sounds like a tuff place to be in. so is havalen your last option. each person gets to make their own decisions regarding when to stop. if there is a 65% chance of getting another couple years well thats promising. no idea what will become availavle to us in that time. wish i could offer more support. i am pming you my cell phone and address. call anytime . you are right the brain can take us all kids of place we dont really want to be. talking can help and realize we are are letting it take control over rational thoughts. wish i could getg blondie and you together. we all need support . no one should face this alone. its way too hard.
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Thinking of you tonight, Carla, and sending many strong, positive thoughts out to you! Thanks for checking in with us. So sorry about the need to be hospitalized, but hopefully they got you stronger you while you were there!
Just thinking... do you know about the chat room here? I'm not a chat room user... maybe someone else is? Just thinking it might be an additional support resource for you during those night time hours. Look for it under All Topics. Big (((Hugs))) to you! Deanna
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Thanks for the great article Deanna! Shared on facebook. Sharon - have fun on your trip!
Carla - so sorry you've been in the hospital. And that you're having so many SEs. And yes, as one of my managers put it "this disease is a real mind f--k then"...yes it is. I used to chat in the chat rooms here when I was Stage I. Looked at them again and it was mostly Stage I people. Be a bit cautious; there are a few trolls there who are just toxic. Also, maybe look on Facebook for a Stage IV BC group where people can chat or skype with you? Can't imagine how hard it would be to do this alone.
Hugs to all,
Terre
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having all kinds of problems with this thread. Have been posting questions and comments without any responses. Have they been getting thru? Taking a really long time to sign on and the other day lost everything. Please let me know if you see this. Myra.
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Carla - So very sorry. Is there a support group in your community or hospital? We are always here for you.Myra - yes I see your last message. Have you been posting on this thread? There were problems yesterday.
Linda
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thx linda, yes have been posting. Asked a few questions and commented on some posts. Will try to repost
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