Bone Mets Thread
Comments
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Amy, I'm so sorry, what a heartbreak! Don't lose your hope. You can kick its ass again! Steel rose, I'm so new, that I didn't know that you had recently suffered the same crap news. Kick ass ladies, you are my heroes
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(((Chelle)))
Ups and downs are part of this mess. But we're all still here. Yay!!!
Thinking of you and hoping that Tamoxifen cleans it up!
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Steelerose, me too! The mood swings are crazy. I haven't felt this out of control since I first started my periods at 10 years old. It's only been a week, but I feel positive about the treatment. Everyone was right about "it" getting better after you have a treatment plan in place. It was so hard to absorb the news. But aside from my tamoxafin tantrums, I am feeling much more myself these days. You have all helped me get here. A simple thank you does not express my gratitude! I'm humbled by your strength. I really do love you all
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shit shit shit Amy! Sorry for the active cancer. I hope your new treatment plan gets you back to ned soon!
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Sending hugs to those in pain. Amy - bugger! Golden - hope it's wear and tear. Steelrose - glad you have a good treatment plan. Deanna - hope the dentist went ok. Linda - glad you're better. Chelle - hope the SEs fade. Dune - hope you and Dusty have a better day tomorrow.
Hugs to all
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Hey there kiwi, how's it going? Have they gotten to the bottom of the tummy troubles? I hope that it's a simple remedy. I'm an insomniac these days. I have been awake for a couple of hours. It's now 4:00 a.m. In Colorado. Nothing really bothering me. Just awake. I thought you might be settling down for the day down under
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Chelle- Insomnia and mood swings here too. I think we should all meet for 3:00 am coffees!
Amy- Crap is right. Hoping a new treatment plan will slow/stop the progression. I'm with you on the Oxy. Don't like it but it can help.
LindaE- Let us know about the Xgeva or Aredia ( in a LONG infusion) this time. I'm a week behind you with either Xgeva or longer Zometa. We'll have to compare notes.
Deanna- How are you doing today after your extraction?
Amie- Thinking of you and your family. How are you doing?
In an effort to keep walking I think over did it too. I started out great and then slowly my hip and back rebelled. I was down to inching along. My neighbor saw me walking and pulled his car over. Gave me a ride back home. Then he gives me this gentle hug. How sweet is that?
Good Friday to all.
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Hello everyone,
I was MIA yesterday and paying a horrible price for it today. Two of my good friends took me and my daughter to a place called St. Jacobs Market, about a 2 hour drive from where I live. It is the most massive market I have ever seen but absolutely incredible. So lots and lots of walking and oh my God I am in agony today! So I will have to sit home and eat all the yummy deserts I bought. As we were driving out of the parking lot we saw a group of men frantically trying to get a bull that had gotten loose, the bull was headed in the direction of the crowd at the market, I already felt like I had been hit by a truck I certainly wouldn't have wanted to get charged by a bull! Thank God we were already in the car, I'm not sure what happened once we drove away but I hope they got him. I was scared for all the people there.
Going to go back 2 pages and read so I can address everyone here.
Hugs to all, Annie
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My goodness, Annie, you sure do find excitement when you go out, don't you! I can't say that I have ever seen a bull get loose. It must have been frightening for the people in its path. I am sorry that you are suffering such pain now. Take it easy today so you can recover from overdoing things yesterday. Enjoy eating those delicious treats.
Lynne
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50sgirl, I've never seen a bull get loose either, scary stuff! This market has a large Mennonite community so alot of nearby farms, they even offered horse drawn carriage rides. We could see a couple of barns behind the property as we drove out and we think that's where the bull came from, I hope no one was injured.
Rachel1, praying for good results on your scan, I totally understand you not wanting to go to the appt but you need to be there. I always bring someone with me, a friend or my dh, sometimes I find the courage to go alone but not too often.
Cjanet, hoping dh finds another job to help supplement the income. My dh is laid off again, second time this year so we are currently living on unemployment and my disability.
Deanna, thinking of you, how was the tooth extraction?
AmyQ, damn I was wanting to hear stable or NED as I'm sure you were. You got a long run out of the first treatment but of course we all want longer. Praying your next treatment does that for you and I'm so glad it's still bone only.
Goldengirls, sorry about what your mom is going through, she's so lucky to have you. Prayers for things to get under control quickly.
Terre, how's the tummy?
Linda, the shopping was amazing, so much stuff from food, clothes, crafts. My body is angry at me though
Hugs to all, Annie
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Thank you everyone. And Amy, I am sorry to hear about the progression. Hoping the next treatment kicks ass!
Annie - I didn't realize you're in Ontario! I love St. Jacob's! It's almost 2 hours from us too, but worth the drive. (We're in Port Dover, recently moved from the GTA).
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Goldengirls, I love Port Dover, so you're not very far from me then. I had a friend who lived near there. That was the first time I've been to St. Jacobs and I was amazed, I would have needed alot of money to buy everything I had my eyes on. It was a good time, just sad that I have to pay a price for it. Hopefully this won't last long.
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Oh, Amy, I read your post about your scan results as I was leaving UCLA yesterday, but didn't have a free hand to respond in the car. Then, by the time we got home after a 4 hr. stop & go drive (as bad or worse than the procedure), I tried to write, but was too pooped. Anyway, I'm so sorry that your scan showed increased activity. I know only too keenly how shocking it is to find out that your bc cells have figured out a way to outsmart the tx that had been working for so many months. It's like a reality wake-up call from the land of denial -- or at least that's how it was for me back in August -- and it can really throw you into a tailspin again. But I know you've been in some pain that you've been riding out, I think you will be thrilled to get on a new med and get things under control again, which you will.
My keyboard is acting up at the moment, so I'm going to stop here and will be back after I catch up on everyone else's news. Deanna
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went to rad oncologist. . No more chemo to my sternum area. It's already been zapped twice. So chemo. Which should have been done forever ago. I called med oncologist and left s message so no details yet. My poor sternum. Only small part in l center that's not Diseased..
I have lots of reading to do to catch up! Hope for peaceful day for all of us.
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Hi everyone,
I was a steady poster on this thread not so long ago. I was on weekly Taxol till my MO stopped it due to some of my side effects. However scans showed the Taxol had shrunk both lung tumors and liver tumors it did nothing for the bone mets which were progressing. I was switched to bone radiation to target these worst mets especially in my spine. This has helped a lot but due to where my radiation was going to get to the bones I now have swallowing issues but am told that will subside soon too. I finished bone radiation Wed. (gong moment) when you get to celebrate. However my break from treatment was short lived as I was taken from my home by EMS early Thursday morning.
I had a fall inside my home and now I was told that it has spread to my brain. The battle continues.Cathy
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Cathy, I am so sorry to hear of your progression...this has to be scary. Just sending good thoughts and prayers to you for answers and treatment that works.
Deanna, thanks much for your kind words. It is shocking as I was happily rolling along thinking I've dodged a bullet and will live with NED forever. It's especially hit my children hard, but my DH, the palliative doc, was very upset and angry. More so than with the initial dx. I think he too lived in denial with me and hates the slap upside the head that is reality.
Heading out of town for the weekend so will be distracted overseeing a wedding. Have a safe and pain-free weekend all.
Amy
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Cathy, I am so sorry to hear about your fall and your progression.
I hope I am not overstepping, but I am in the Simcoe area as well and wanted to mention that if it was the local hospital that told you it has spread to the brain, it is worth it to seek a second opinion or have another radiologist at a cancer center see the scans. They misdiagnosed my mom at NGH at the start of her mets dx. Her CT showed 3 bone mets, but also showed other incidental findings that the doctor there told us was ALL cancer and that it was throughout her body and organs. That wasn't the case. She did have bone mets, but they made the assumption based on her history that her benign lung nodules and fatty liver were also cancer and told us she was "full of cancer -- it's everywhere!"
Hoping your next treatment kicks the cancer's butt!
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Cathy, I'm so sorry about your fall and hospitalization and possible (?) progression. I'm saying "possible" because I want so much to believe that what GoldenGirls just wrote about her Mom's experience might be what's going on with you -- a jump to conclusions based on your mbc hx. I hope you will get your scans re-read, as she suggested. In the meantime, you are in my prayers. Did you injure yourself when you fell? Are you still in the hospital today? Please keep us updated! Deanna
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HFC- Are you having pain as well in your sternum? Hoping the new chemo routine stops that progression.
Cathy- How badly were you hurt in your fall? Now brain mets on top of that? So sorry. Do you have the radiologist's report to review the brain scan results?
Amy- good that you are getting out of town and keeping busy. That will help.
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Cathy, I'm going with what the golden girls said. Keep the faith
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Geeze...lots to catch up on. First, thanks for the kind thoughts everyone. I'm doing ok and appreciate people asking. Still not results from the bodily fluid tests, but should have them on Monday. I'm on antibiotics for giardia, and I do feel a bit better. Also on bottled or boiled water at home.
Amy - glad you're getting a break.
Cathy - I am so sorry. I'd go with what Golden Girls said too - a second opinion can't hurt. My mom was dx with brain mets from her lymphoma and they started whole head radiation, chemo, etc. and none of the "brain mets" shrunk. Turned out it was just spots of some kind and they assumed cancer due to it being pretty much everywhere else. (And yes, I'm writing the dreaded "my mom had...sorry for that!) So I'd sure want a second opinion. I'm sorry you had a fall - that's bad enough in itself. Hope you're doing ok and out of hospital from that. Sending good thoughts and prayers your way.
HFC - hoping the chemo kicks the sternum mets to the kerb.
Chelle - As I recall, Colorado is Mountain time, correct? We're ~20 hours apart today, but it will be 19 tomorrow, I think. And when you go off daylight savings, we'll be 18 hours. Basically, we're a day ahead of the US (stinking date line), So when NZ is off daylight savings and the US is on daylight savings, we're a day ahead but 5 hours earlier than Pacific time in NZ. So noon on Friday in the US is 5 am Saturday in NZ. When we go on daylight savings, it becomes 4 hours, and when the US goes off daylight savings, it's 3 hours (so noon Friday in the US is 9 am Sat here). Confusing enough for you? It's currently 7:20 am on Saturday morning here. So it should be about 1:20 on Friday in Colorado. The "day ahead and x hours difference" is easier for me to cope with than the 19 hours thing.
Lindalou - what a nice man! It's so darn easy to overdo it. I think we've all done it.
Annie - sorry you're paying the price today, but what a lovely day out. And desserts! Hope everyone is ok from the escapee bull. I had to laugh because I had a lunch appointment up the coast (north of my house and 2 hours north of my office) with a client on Tuesday so I got to work from home. I was a bit late because two young bulls had figured out how to defeat the electric fence and they were hanging out on the road. Cars were stopped and people were herding them back off the road. They weren't huge, and once off the road, just hung out eating grass on the side of the road. The farmer had been called and was on his way to deal with it. But it held me up for about 10 minutes. No one was injured and the area is quite rural, so it was scary like it would be at a market!
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Linda-we are hanging in there..Have a drug picked for Emma, got into a clinical trial but need to do a few things before we can start.
My Ibrance should be on the way Monday it has been approved. Hopefully can start next weekend.Going to try to enjoy the beautiful fall weekend while we are feeling goo.
Amy and Cathy I am really sorry to hear about your progression.
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Keetmom - glad you have a plan in place. It does help. Sending good thoughts your way.
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Hi ladies,
I am back from my appt at Lahey Clinic. I was not going to go in to see the doctor, but she came out and got me. I'm a weenie. For the good news: because of the surgery in my femur, they could get a good biopsy and I am indeed still estrogen positive. The last biopsy showed I was er negative which doctors felt was a false negative. A definitive positive opens me up to trials as well we now know that faslodex is the correct medication. There has been no distance spread! Thank you God!!!!! It's still bone only. We are waiting for my films from the first pet scan for the radiologists to compare, but from the notes it looks like everything is stable or shrinking. I have been an absolute basket case for days and crying like a baby. I am continuing my macrobiotic diet ( please let it help because this food sucks) and walking better since surgery. I know all I have is today and today , right now, I'm very grateful. Thank you all for holding my hand. Much love.
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My heart hurts for those of you who are dealing with progressions, pain, and fear.
I'm glad to hear you are feeling better Terre. God bless antibiotics. They are definitely helping Dusty get better. He's still gimpy, but he's getting around much better and did not fall off his perch last night.
I had my last radiation treatment today. Now, I'll take that pain relief. LOL
Annie, the bull story made me laugh.
The pain is getting to me so I have to get off here now. TTYL.
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Rachel1-woohoo and yippee for the good news. I am glad that the onc told you in person rather than relaying the news through you DH. I hope the good news keeps comingfor you and that you continue to heal quickly from your surgery.
Lynne
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Rachel - so glad for the good news.
Dune - happy you're done with rads and that Dusty is better!
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Cathy - I'm so very sorry to read about your fall and progression. Sending you big virtual hugs and prayers.
Rachel - I'm absolutely thrilled to read your post. Wonderful news!
Dune - hope the rads do their job quickly. Good to hear Dusty is better.
Terre - that was really confusing!
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Great news Rachel!!!! Now it's time to kick butt! - Dune, glad dusty is better! And hopefully some pain relief for you!
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Cathy, I'm so sorry to hear about your fall and progression. Did they do a brain scan or MRI? I'm just wondering if they actually saw something or making the assumption based on your fall? Praying for you and sending healing hugs.
Keetmom, praying for positive results with Emma's clinical trial, and for Ibrance to be a very successful treatment for you. Enjoy the weekend!
Terre, this bull wasn't the calm eating the grass kind of bull, it was a crazed running frantically bull that looked like it would charge someone, I'm not kidding it scared the crap out of us, that's no bull shit!
Rachel1, I'm so relieved to hear your news and glad you got it right from your onc. Stable and shrinking are all good things to hear. I'll do a little happy dance for you.
Dunesleeper, sorry to hear Dusty is still hurting a little but glad he didn't fall of his perch last night. Yay to your rads being done and hoping for quick pain relief.
Wishing everyone a pain free weekend. Hugs, Annie
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