Bone Mets Thread
Comments
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Happy Birthday Carla!! Sorry I've missed you today (it's only 6:30 here on the west coast) My friend with stage IV colon cancer has told me "we spent all these years denying our birthdays, now we must revel in each one that we get to celebrate"
So if your way of celebrating is getting a good night's sleep after an exhausting day, you revel in that sleep. Cheers!! Dee
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Happy birthday Carla! I worked at Royal Farms before my bone mets diagnosis, and I don't think I could do it now. I pushed myself then. It took a long time to get to where it didn't totally kill my feet and knees to stand that whole shift. There were no places to sit down. I actually ate a piece of chicken sitting on the toilet one day. Then came the breading the chicken and fries part. Each tray I filled with 2 chickens and then had to carry it to the refrigerator room and then had to carry it out to dump in the fry containers when they needed it -- and it was a non-stop thing. I could barely lift those trays then. I did drop a tray once and nearly fell with a tray another time. So, I totally get that the job would have been too much. That doesn't mean there isn't another job you could do. Now, I work in a mailroom of a company that does a number of things, one of which is to send out new patient letters for dentists to people who move into their area. We sign the doctor's name, address the envelopes -- must be handwritten so that the person receiving it will be more likely to open it. It's all ridiculous, but it's a room full of very nice ladies who are fun and caring. My job title is mailroom correspondent. Look out for something like that.
Also, I keep meaning to tie up those loose ends you mentioned but have not yet. It's on my todo list. The doctors will have to make sure I live long enough to finish my todo list. LOLDeanna Thanks for the reminder to hydrate!
Terrestrial Terre That sounds like very good news for dh, but what is causing the lymphedema? Any theories on that? I'm sorry you are feeling buggish, but you are a shining example of a good attitude girl!
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Happy birthday Carla! May this year bring you peace and contentment
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Carla, Happy Birthday. Celebrate every day.
Leah
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Happy Birthday Carla! I hope you had a great day and did something special! Good luck with your treatment tomorrow and praying your tumor markers are down.
Hugs, Annie
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Best wishes to you, Carla. i hope that your birthday will be the start of a great year! Peggy
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Happy birthday Carla! Sorry my good wishes are a little late. Used to hate getting older, but every B-day is a good one from here on out. Hope you are enjoying a peaceful nights sleep.0 -
Carla / happy 54th birthday
Kiwi - very good news they your dh does Not have cong heart failure. !
Deanna - yes I am better than the hospital but still grumping about back pain. Stay hydrated ! Glad you are feeling better.
Dune - Hopewell sounds awesome.
Shout out to everyone else. Hope y'all are sleeping a pain free sleep
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Annie – I do think the lower TMs are good. It's a shame the scan results are mixed, but I think overall it sounds very good.
Sharon – I hope you still have no SEs from the Xgeva and Aromasin. I've sometimes had joint aches from xgeva, but nothing too bad.
Romansma – Your unicorn poop comment made me laugh out loud. I need to find a way to work that into conversation.
Dunesleeper – Your yoga center sounds fantastic! I found a yoga class for cancer patients near me, but I haven't worked up the courage to attend yet. I hope you enjoy it! Congratulations on your (mostly) good scan results.
KiwiCatMom – Hope you and your dh get some definitive answers about his health soon. Glad you had a little break from work. BTW- loved the link you posted. I was struck by how optimistic he is about having a 1-2% of regaining feeling in his upper body. "It's better than 0%". Right on!
Carla - Happy Birthday! Sorry the job didn't work out, but I'm sure there is one that fits better out there waiting for you. I haven't completed my living will yet either. It is my goal for early 2015…but I'm still procrastinating.
I had my scans on Saturday, but probably won't get results until next my appointment next Monday. I'm not worried, but I do hope things have shrunk enough to get off the Taxotere.
Best wishes to everyone!
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A late happy birthday, Carla. Every birthday now is a good one, isn't it? I hope we all have lots more.
I can't get unicorn poop off my brain! LOL.
I had a great day Sunday watching the Packers win and then later visiting with other friends for a belated Christmas celebration. I was whipped when I got home, but it was a good day and I slept like a rock. I finally had my brain MRI Monday, first MRI ever. Thank God for Ativan! I felt like I was Hannibal Lechter being shot into space in that tube with the face mask thingy on. But it's done. Don't know when I'll get the results as doc is gone for a week. I'm not too anxious about it. He only ordered it because the PET scan showed a suspicious area on the skull. It's not in any other organs, so he said the chances are good that it's not actually in the brain either.
Everything seems fine after 5 days on the meds. I do seem to get tired fairly easily, even after a good night's sleep, but otherwise I feel good. Had lunch with a friend today, and that also helped me feel like I'm getting back to some normalcy after the January 2 dx. I think I'm adjusting better than my partner, Rebecca, is. She frets over everything, including the MRI results. We'll get the results soon enough, I think, and I try not to expend energy worrying about it.
I did end of life stuff and all that a few years ago just because I'm older than Rebecca and we couldn't marry then. We will probably marry in February, now that we can, so that will put everything in order. Hard stuff to think about, but really necessary for everyone, no matter what their health status.
Many of you have posted good things happening the past few days, so without listing them all, let me say I'm happy to hear them. Stress is our enemy, so any news that can lessen that is good to hear.
This is all new to me, this latest dx, and while I was shocked and sad, etc. at first, now I've kind of settled in with the news and I feel almost confused. Here I have this cancer that has metastesized and is "incurable" and my life is likely to be limited, but I feel good, healthy, pain free and able to do what I was doing before I knew the dx. So I'm sick but I'm not sick. I don't know how to feel about it. Is that crazy? I guess it'll sort out in time.
Well, everyone, peace and blessings to you all, and I hope you are having a good day. I have to get my "not sick" butt into gear and do some laundry. Nothing confusing about that!
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Thanks for the kind words everyone. I'm back at work in the office...blah. Not feeling it, especially since it's summer here.
Sharon - for what it's worth, my mom's cancer was 10,000 times (at least) harder for me to deal with than my own is. I think there's a thread here somewhere for support people; it may help her a bit? And I know what you mean - someone wrote a while back "I look like hell on paper but I'm doing great overall!" It's hard to know how to feel, sometimes. So, I just try to enjoy it while I can. Easy to say, harder to do.
Glad you liked the link Shutterbug. I hesitated putting it up due to his comments about God potentially offending someone, but his attitude is so amazing that I thought it was worth a share. I look at people like him and my BC sisters who have Stage IV in their 30s and 40s and have little kids. And I know how lucky I have it. Helps me keep my perspective.
Well, I'd best get some work done.
Hugs to all,
Terre
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Hi all,
Sharon - I also was much more worried and stressed out when my late dh was sick. It seems somewhat easier for ourselves perhaps because we are more in control of the situation. I don't look sick but I'm sick - some days I don't feel sick but if I over do it, boy my body sends me a few messages. It's like an invisible disease and sometimes I find it hard to set my limits/boundaries with some people around me. One of my dear friends is going through some rough times and we've always helped each other. But I'm no longer able to help like in the past and I'm not always sure she fully grasps the extent of this disease. Anyone else going through this?
Best wishes to everyone and especially those awaiting results.
Linda
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Well...Should I be PISSED OFF....OR CRY!!
Went to emergency room this am...because of pain in my right lower abdomen...thought it was my bowels...since I have had issues in the past that caused me to have a colostomy bag...so the tests begin..blood...then CAT scan...and guess ...Oh..yea...my Cancer has spread...in my bones since April...now found 2 sm spots on my LIVER!!!! God Damn it!!!
So PET SCAN next week...to get a better picture...still had my treatment today...but I don't know how to feel right now...
So may I ask who has bone mets...and as lesions on there liver please help to digest this...PLEASE ****TEARS****
Carla
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Carla: When I was rediagnosed in June of this year, I initially had no idea that my cancer had come back. i was suffering from bad back pain, and I thought it was my osteoporosis. I went to my regular doctor one day because I thought I was having gall bladder issues with some pain to be noted on my right side under my rib cage. I had just had a full blood panel done at my oncologist's office in May, and everything tested showed up completely normal. It turns out that my cancer had come back in full force after three years with too many liver lesions to count and numerous bone mets. I was started on Taxotere, Herceptin, and Perjeta immediately, and it was no time at all until the liver lesions started to shrink and heal, and the pain in my back subsided a lot. There are many of us who have had the same experience as you are having right now, and it was pretty terrifying in the beginning. I believe that your oncologist will find a treatment plan that works for you to take care of your mets, so even though you are really scared right now, I believe with all my heart that soon you will be feeling better about it and not so scared as you are right now. Give yourself a good rest tonight, and hopefully you will feel better tomorrow. Ann
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Carla - no advice, but bugger!
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Carla, so sorry you got that news today. Praying that a new treatment plan will kick it back to the curb. Hugs.
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Carla, sorry to hear that, as KCM says "bugger" ((hugs))
Linda, I don't think anyone other than us "gets" MBC. I don't look sick & most for most of our friends, they don't know the day to day & I don't want them to know. But my friend with stage IV is probably the only one who understands how you just can't do what you used to do. I too feel like this is an invisible disease. I don't have any advice to give you on limits as I don't seem to be able to set them either.
KCM, Any answers yet on your DH? I've been trying to read back thru the posts.....
Sharon, this is part of the problem, you're sick, but you're not "sick" Sometimes a friend will say something like "but you're sick" Oh thanks! I had kinda forgotten that for a minute, thanks for reminding me.
Hope everyone else is doing OK. My friend is starting her "last ditch" chemo treatment tomorrow. We are all trying to keep the best thoughts, but it's hard when nothing else has worked & has just made her so sick.
Cheers, Dee
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Hi everyone! Checking out a few threads. I was here in 2009 and mets to the spine in 2014. Starting radiation after Femara and Faslodex for the last nine months. TMs went from over 800 to 91. BUT I have some stubborn spots in my spine that still cause significant pain so we r gonna do radiation. I am already so exhausted I can't imagine what radiation is gonna do! Tired me out the last time but I'd live to rid myself of pain.....I think I get tired secondary to a fairly high dose of opiates. Ugh.....would love normal again but acceptance is a HUGE part of dealing with this disease! Anyway"........... HELLO!
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Carla - bugger indeed. Sorry to hear that. Do keep us posted on your new tx plan and thoughts and prayers coming your way.
Valerie - sorry you have to join this thread but welcome. I had radiation on several bone mets and brought me great pain relief. You may also be aware that rads can sometimes cause a flare up of pain at the beginning which subsides after a couple of weeks. I had a flare up once but almost instant relief the other times. I certainly hope it helps you like it did for me. You'll find a lot of support, information, compassion and humour on this thread. Keep us posted. Wishing you the very best.
Linda
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Welcome (back) Valerie. Sorry to hear about the stubborn spine!
Dee - I laughed out loud at "thanks for reminding me!" It's hard because on the one hand, I want people to recongise that I can't do everything I used to be able to do and that I hurt and I'm chronically tired. But..I also want them to treat me "normally" and not like I'm overly fragile. I want it both ways, I guess. DH meets with a lymphadema specialist tomorrow to see if that's what's causing these problems. It would be amazing if he could wear real shoes by wintertime.
Carla - what crap news. I am so sorry. But I know that there's quite a few (check the liver mets thread) who have had liver mets which treatment has kicked to the kerb, and also have active liver mets but are still going strong after several years. Sending hugs your way, and positive thoughts, and prayers.
Terre
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Carla. - darn sorry to hear that. I have no advise but I hope someone vines along soon who does
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Carla -- That totally sucks. Being newly dx'd, I haven't experienced any setbacks that will likely come, so I have no info to share with you, but know that we are sending healing energy to you for your body and spirit so that you can deal with this with strength and hope.
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Carla, that stinks! I'm so sorry. Wish I could offer you something more than a virtual (((HUG))), but let's just hope and pray you get better news from the PETScan.
Welcome Valerie, although I'm also so sorry you have reason to be back. But I'm thrilled to know your TMs have dropped that dramatically, and hopefully a few zaps of RT will take care of the pain issue.
And Teakie (Ann), I'm not sure if we've seen you here before, so welcome if you're new to this thread. If not, I plead chemo brain!
Terre, how fun about the rodeo relative! I'll have to look him up (on-line, that is), and ask my DH if he knows who he is. He follows that stuff much more than I do. I just go for the good time.
Extra prayers for you tonight, Carla! Deanna
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Carla, So sorry to hear. I do understand what you are going through. I was dx stage IV out of the gate with bone mets in 2010. Had 18 mo of femara, that failed with bone met progression, then on to faslodex which seemed to do nothing & in 2013 progressed to liver mets!! I was devastated & certainly understand how you feel now. I've found a number of discussion boards helpful - pls try out "how are people with liver mets doing?" I've found many with liver mets have been living with them for years. Occasionally I read how after having liver mets they disappear when a pt is on a certain chemo & one pt's liver mets are still gone after 10 years! So, you never know. There's so much not understood about this ugly beast. So hang in there! In a way it was good you had the abdominal pain today, so this could be discovered before it progressed any further - now you and your MO can come up with a plan.
Take care ...
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Carla, I guess I'd be pissed, sad, and afraid. It is certainly news none of us want to hear, and I'm sorry it happened to you. This is interesting though, sort of. I went to Hopewell for their yoga class for the first time today. I guess I got scared to go because I woke up depressed and not feeling well. I made "o anyway, but I didn't smile and go out of my way to talk to people. (Obviously I'm not afraid people will bite me, lol, so I must be afraid they are going to hurt me emotionally.) I tried to stay out of the way and all. Well, my totally cool sleeve caught the attention f this one woman and we actually talked. She is 86 and looks great! Her breast cancer had spread to her liver. She told me she wouldn't even know she was sick if they wouldn't "keep telling her these things." She was great! She acknowledged she was lucky, since she claims not to feel pain or illness. She's going to be starting some study. I'll learn more from her next week.
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Carla, I'm so sorry about your news. I had a liver met, along with my bone met and both were gone on the last PET scan, so there is hope. I agree to check out the liver mets thread. And I'm quite sure you don't feel like celebrating anymore, but I wanted to wish you a happy belated birthday.
I agree with GG, I look at birthdays very differently now. I will be the big 5-0 in 2 years and while I certainty wasn't dreading it, I wasn't exactly looking forward to it either. Now I will be thrilled to reach 50 and will do something special.
Dine, hopewell sounds like an awesome place, I hope you enjoyed the Yoga. I know there are free classes of different types for cancer patients around me, I need to look into it more. Most are during day though and conflict with work.
We went to lawyer last week to start to update our wills and life insurance trust. I will take longer to update advanced directive/living wills as I want to spend more time seriously thinking about what I want and don't want b
Hi to everyone else and hoping for a good rest of the week.
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good morning ladies. I am feeling so much better emotionally and right now even physically ( might be the pain med I just took ). Glad the holidays are over.
Carla - ((( hugs )))
Valerie / welcome back. When do you start radiation ?
Dune - glad you made yourself go to Hopewell. Hope you enjoyed the yoga class and are not "feeling " it today.
Hope y'all have an awesome day ladies.
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Carla,
Sorry you are going through all of this. I've had bone mets from the start in 6/09. Zometa has worked really well for me. I just had an MRI done of my liver this morning because Dec PET scan showed possible liver metastasis. I also fractured a rib. Won't know for 2 days whats up with the liver. My onc said I may have to move back to chemo if in liver, planning possible Xeloda. If not, I may be eligible for the Palbociclib trial at UCSF. They are doing a stand alone trial for this drug only instead of mixing it with AI's.
Keep us posted.
Terri
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Hi all,
Patty - glad you feel better!
Terri - good luck with the scan and decisions. I'm really interested in the Palbociclib trials - my MO told me a year ago he was hoping it would get quick approval because he thinks it would be good for me (with my Femara).
Dune - that's great about Hopewell, glad you went. The lady you met sounds fantastic - always so wonderful to meet inspirational people who give us hope.
Reading - very smart to take some time to think about things. The hardest thing for me here in NZ is that I don't really have any close friends (I have friends, but not close friends, if that makes sense), and my DH's family's views on end of life issues are much different than mine. So trying to find someone to make the decisions I would want made has proven a bit difficult. Oh well, one day at a time!
The endless doc appts for DH continue (which is ok..closer to a diagnosis). Off to see the lymphadema specialist today at noon. Hoping it's funded and we don't have to pay for it, but in any event, may get us closer to figuring this all out!
Hugs to all,
Terre
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PS...I don't know if this is of any value, but...I have a friend who was a nuclear sub commander in the British Navy. He's funny as heck; just a brat in his own way. But he can also be quite serious and intimidating. I was having a bit of a pity party and Rob got right in my face, grabbed the front of my coat and yanked me closer, bent down so we were eye to eye and with this steely gaze (honest) he said, "DO NOT EVER GIVE UP HOPE!" He said it very slowly - one word at a time, with a pause in between. He let go of me and said, "And that's an order."
So when I'm feeling scared, pitiful, etc., I just remember Rob doing this and it reminds me - DO NOT EVER GIVE UP HOPE. Some days, it's all we have.
In case you haven't figured it out, I'm have a crap day for no apparent reason. And am just hanging on to hope today because it helps keep the fear at bay.
Hugs,
Terre
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