Bone Mets Thread
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it is tough to keep up here!
Terre- love the rainbow unicorn/cat picture! Hope hubby's LE is a little better.
Valerie, sorry you are in such pain. I hope the drugs from the hospital help quickly.
Insurance, ugh. Fortunately dh handles all if that, often need to call and question a bill, it's often wrong. I Was pleasantly surprised first dx that we didn't end paying as much as I thought we would. See about this time. Thank goodness for yearly maximums.
This is one more thing I worry about though. Insurance is through my work and I am sole wage earner. If I no longer get benefits, we are sol I think.
I did it! Skied today, only 1 hour and then took 2.5 hour nap! Since only bone met to sternum and NED for now, onc said okay, "this is year to do it". Good for kids I was there.
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Sharon,I apologize, that was probably a stupid comment, that you seem to be adjusting so well. Who the hell can adjust to hearing they have stage 4 bc?! I am happy for you that you are feeling good though. Would think that is a good prognostic indicator, so hoping life goes on more or less normally for you for a loooong time!
I'm not really much of a sports fan, but I will be cheering with you as the Pack takes on Seattle tomorrow. DH might throw me out if he doesn't hear the occasisonal "go Pack go!" out of me! Hope you enjoy the game.
Your Wisco sister,
Jo
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Dear romansma,
Thank you for your kind response. I am doing better everyday and out of the hospital hopefully post patriots game. Got a husband snoring right Next to me, and a tempurapedic hospital bed (al though it's in a hospital) no surgery needed on my spine! And am thinking of every one on this page tonight. I send my love with an open heart. I would love to hear how all of you are doing!!!!
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Glad you're doing better, Valerie!
We had an amazing sunset tonight. I was shooting through the upstairs window, so sorry about the spots, but ... it was awesome.
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exbrnxgrlA slight correction to your post regarding US insurance
- the ACA is not a public health care system. Each state has set up insurance exchanges and there are plans that you can choose from. There are a few states that have chosen not to do this (unbelievable!). Not sure what folks in those states do.
There are actually 34 states that did NOT set up exchanges. Folks in those states have to use a federally run exchange to buy health care in their state. This is the only way to get a federal subsidy to help offset the premium cost of health insurance. This is going to become very important when the US Supreme court takes up a challenge to the ACA next summer, as the ACA legislation specifically talks about subsidies for those using state exchanges. (No mention of federal exchange.) Those of us in the 34 states using the federal exchanges may lose any federal subsidy due to the law being poorly written. Those using state run exchanges should not be affected.
Sorry, way off topic, but this has the capacity to affect a lot of people.
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Beautiful Terre! You live in such a beautiful place.
Valerie, Good news, hope you're out of there soon!
It's a beautiful day here after a horrendous rain storm last night. Pic of the sun coming up in our back yard. Gotta go finish up the laundry! Cheers, Dee
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Meegan,So happy for you that you were able to ski! Must have felt great and been well worth the nap time required after. Hope you aren't suffering for it today.
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jobur,
Thanks, I wasn't aware that more than half of our states have not set up exchanges. Guess I was confusing it with the adoption of Common Core
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Jobur, Please please do not apologize! Your comment was not stupid at all. I really am doing Ok with everything right now, probably because I have no symptoms whatsoever from the cancer or meds. I know that will likely change down the road, but I'm just not accepting it now as much as I did 2 weeks ago. It's not that I'm in denial, but I'm not giving this thing any more power than I have to, and not any sooner than I have to. I was struggling to accept, and right now I'm not. Right now I'm kind of pissed off really. I have seen the MO and had lab work and or scans at some point every 3-4 months for almost 9 years, I thought to keep this very thing from happening. Surprise! So I'm angry and very ready to fight. I intend to be healthy for a long time, so take that, cancer!
Packer/Seahawks game is about to start, so I hope they get some of the feistiness I'm feeling right now! I don't care about football much -- kind of a brutal violent game, but I am a Packers fan. What can I say? I'm a Wisco girl!
Thanks for all the great pictures, everyone. Beautiful. Loved the dogs. I'm a dog lover -- we have two. The unicorn kitty was the best -- a real LOL moment. Thanks for posting those, sisters. You're the best.
Have to go cheer on the team now. Have a great day, everyone.
Sharon
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Reading - glad you got to ski! That's so awesome!
Sharon - good on you. Keep up the attitude. My MO said one of the things he likes best about me is that I have an "FU" attitude toward the cancer. I'm not in denial, I've moved past the anger (mostly - still get angry sometimes when I think about how the medical folks let me down here), but I'm not going to let cancer totally define who I am and let it consume my life. Like you, I don't have many problems from the cancer, just fatigue and some aches and pains. So that helps, I'm sure.
Dee - STUNNING! Thanks for sharing the beautiful photo. You live in paradise too, I reckon!
Hugs to all,
Terre
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Well..The Packers loss...
I"m wondering if there is any sister's here that are going through this disease with no partner or family? That is what I'm dealing with ...I live by myself...and have very little friends now that my disease is more extensive..they all went away...go figure...and my youngest daughter and son in law live a mile away and my grandboys ages 2 and 10 mths...live a mile away from me and i think if I didn't go to them...I would never see my grandkids...Just learned Tuesday that my cancer has gone to my liver...sm lesions have PET scan on Tuesday and start new treatment...I don't the spelling on the chemo...but it's RED in color weekly.....along with Felasdex and bone booster too mthly...
I know there is support groups...but here it just is slim pickings...just saying...Carla
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Right with you, Carla. One daughter 3 hr away, the other across the country. Was dx approx. a yr following divorce. One friend has been very supportive in that she goes to the "important" MO appts with me (scan time, etc.) & I'm very grateful for that. On a daily basis, it's tough; spend too much time staring at the 4 walls with no motivation, either too tired or physically feeling bad. I did attend a cancer support group for over 3 yr & it was very helpful. Recently quit for a variety of reasons, mainly that I didn't feel comfortable talking about what I really deal with regarding my MO, as his other pts also attended the group.
Sounds like you might be getting Adriamycin - it's red. I'm on that now, too. 3 weeks on/1off as long as I don't get severe hand/foot syndrome like I did with Doxil. Getting some signs it may be starting, but subtle so far.
I, too, started with bone mets and now also have liver mets. I have no easy answers for you other than to "hang in there." If it weren't for the various discussion boards here, I'd have no outside contact with the "real world," most days.
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Thanks Terre. Love our attitudes! I'm finding it very liberating to not be spending a lot of emotional energy on accepting this right now. And right now is all anyboy has, so I'm good with that thinking.
Carla and SryMom, I can't imagine going through this alone. I have a loving partner and many friends standing by me who are almost begging me for something to do, but I don't really need anything much as I am feeling very good. If/when that changes, I'm confident that most of them will hang in there with me because they're that kind of people. I'm not religious, but I have a strong spiritual life and have like-minded friends, and they are the best. They are ready to do anything for me. It is humbling and I feel enormously blessed. Their love for me helps motivate me to fight and hang around as long as possible. I would urge both of you to try to find a good support group if you can. Even with my fantastic support, it is important to me to be able to interact with people who know exactly how I feel about this because they've been there. This discussion board has been so valuable to me in just these couple of weeks, and I'm going to try out the support group at the cancer center I go to as well. They also offer reiki sessions at no cost to patients, so I'm doing that this week. I know it's easier for me because I'm still feeling physically well, but it would be hard for me to be stuck at home alone all the time. I've been home with my partner, Rebecca, 24/7 since she had some surgery last Thursday, and I'm getting cabin fever just being home so much for those few days. I'm looking forward to going to the grocery store a little later! The point is, we have to do everything we can to make this life worth hanging onto, so being with other folks is important. I know, easier said than done sometimes.
Yes, my Packers lost -- gave it away. Disappointing, but hey, it's just a game. I do like the Seahawks' colors better, though! Don't tell anyone around here I said that! I wouldn't have to think about cancer knocking me out!
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shaon,
I don't know if you've seen this thread (I apologize if I linked it already), but it's good to read about how some of us are living, and enjoying life, as long as we can, even at stage IV. Clearly, at different points in the disease process, this isn't always possible but we can try to enjoy each day while we can.
https://community.breastcancer.org/forum/8/topic/8...
Take care, go shopping and hope Rebecca is recovering comfortably
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Finally, good results after 2 months of testing & waiting.
Dec scan showed liver met & I had 2 new bone mets, 1 fractured my rib. Today, I got good news that the MRI did not show any liver mets...Yeah! Dr. glad they did MRI instead of biopsy. Since lots of new bone mets popping up, I switched to XGEVA today from Zometa & may be doing a Palbociclib trial at UCSF. I have an appt at end of this month.
2 months of sweating it out. In any case, I hope he gets me off of A/A combo.
Terri
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Fantastic news, Terri! Good luck with the trial.
Carla and SyrMom - that's got to be beyond hard. I have very few friends who live close by in New Zealand. Tons of friends in the US, but not so many here. And the ones I do have here are an airline ride away - not easy to stop in for a cuppa! But I do have my DH, who helps a bit despite his extreme denial, and I do get social interaction through work.
Hugs to all,
Terre
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Terri, that is great news! I was feeling a little down today so your good news made me smile. Best of luck with the trial.
Carla and SyrMom, my heart goes out to both of you. I have a lot of friends, but many have disappeared since my new diagnosis so I now know who my true friends are. Still there are days when dh and dd's are working and friends are busy and the alone time is hard for me. I totally understand how hard it must be for both of you.
Hugs to all, Annie
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Terri - Must have been a long 2 months! But no liver mets - good news. Good luck with the trial! I'm guessing you didn't like the A/A combo?Linda
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Thanks everyone for comments on liver mets. Linda, I hated the A/A combo. My blood pressure was high on this, made me anxious, lots of mouth sores & body sores & loose stools when I had to take 2 Affinitor. I hope other treatment is not as bad, I know every drug has side effects.
Terri
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Hello everyone,
I'm off to the orthopedic surgeon tomorrow afternoon to find out about my humerus and whether or not I need surgery. I have to have an x-ray before I see him. I guess the bone scan I just had on the 5th isn't good enough. All this radiation!!
Anyway it all just got me thinking of Chrissyb, does anyone know how she's doing? She was so helpful to me when I first found out about my arm and the possible surgery. I haven't seen her post in awhile and was just wondering. I hope she is well.
Hugs to all, Annie
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why is it that are good friends seen to disappears? Then newcomers come along I exoectancy.
Hey ladies. Reading back noticing this isn't just a problem I have experiencd others have too. That's what I love about bco esp you ladies.
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I messaged Chrissy a month or so ago to see if she was ok. She said she's been really busy and is watching the boards, but only participating when something specific comes up that she thinks she can help with.
Good luck with the ortho doc, Annie.
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Terre thanks so much for letting me know about Chrissy, just really felt her absence. Thanks for the well wishes and wishing you the best as well on your upcoming scan.
Hugs, Annie
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Tomorrow...I have a Echo gram.....PET scan....Blood work....see the OC...and maybe start up my new treatment regiment...Adriamycin..weekly...along with (Faslodex....and bone booster) mthly.
I'm ok...just got over having Laryngitis..and a ear infection lasted a week...drained me out...but now to get ready for another jolt on my journey..
I hear you all talk so knowledgeable about your disease...not saying anything bad about that...I just feel kinda out of the loop...smart wise......I have only the means to trust my OC..who cares about me very much along with my whole team...He worries alot about me living alone...we've know each other for going on 3 yrs...he was my OC when I was just having 6mths check up when I first move to Idaho 3 yrs ago...He likes my bluntness and come forward attitude...and that I ride a Harley...believe it your not...he purchased one a yr after seeing him..and he saids he likes it...LOL!!
I ask alot of questions...and being on here helps me to ask more...but I feel that my OC and his team have my back...I only have that to hold on too...and believe...I am not financially able to do much of anything else...but believe that they have my best interest in mind... when they are making there decisions...The clinic has a great outcome from this disease...so i'm going with that...like I said that is all I a have going for me...
So with that...I need to rest so good nite...sisters...L&R Carla
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Carla,
You made laugh a bit with respect to being knowledgeable about our disease (laughing at your comment, not you). I don't know how smart we are and I sure as heck wish we never had to learn about bc, but most of us just started learning and researching after our dx. You know, just your average gals with stage IV bc. For me, that knowledge makes me feel like bc doesn't have the upper hand and allows me to be a fully informed decision maker, but , I realize that not everyone wants that role. Do what you feel comfortable with, learn as much or as little as you want and be thankful that you have a caring medical team that you trust. Take care.
PS: I'm a bit of a geek. I love to learn about almost anything and everything so bc was no different
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Terri, you caught my attention when you mentioned the Pablociclib trial. Are you eligible for that trial after having been on Afinitor? My MO checked for me and said that my time on Afinitor disqualified me for the Pablociclib trial. If you know something more, please let me know. I wanted to move to this trial instead of my current Xeloda/rat poison regimen. Afinitor was tough on me in the beginning and I had some of the same issues as you. But, way easier on me than Xeloda. Not liking his. and can't wait til Pablociclib is approve
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Romansma,
I have an appt. for the 27th of Jan to check eligibility. My onc has also sent Dr. Pamela Munster information. They are going to start another trial with Palbociclib alone. I will let you know what I find out. My onc said originally, it was for those who exhausted chemo---I have not. I have not been on Faslodex or Xeloda yet. There are a couple trials with this at this time at UCSF.
I'll keep you informed.
Terri
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Thanks, Terri. I hope it works out for you. I have already done Faslodex too. That was the easiest one, but didn't seem to work at all for me. I probably got about 7 stable months out of Afinitor, but when it stopped working, my bone mets called all their friends and started a huge party. Pablociclib seems very promising. I think I will start looking to see if there are any updates on trials here in socal.
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Good luck today, Carla, and happy birthday.
I've had a hell of a night. I hurt so badly, and this is my day to go to yoga. I guess we'll see. I hope to be back later talking about the yoga class.
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I too miss ChrissyB but glad she's OK. Was wondering about Tracey-Canuk - we haven't heard from Tracey since mid December - anybody know how she's doing?Linda
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