Bone Mets Thread
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Thanks KWC - I needed to read those words today. Just had my bi-weekly acupuncture treatment - that should make me feel better as well.Linda
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Terre -- So sorry you're having a crap day. I'm just at the beginning of all this, and while I hope to be around a good while yet, I read about everyone's struggles and see how long some of you have been in this fight, and I marvel at your endurance and resilience. And you fight so hard and struggle so much to hang on to what is a crappy quality of life at times, and a just OK quality of life at other times. It's such an emotional roller coaster and I pray that I can do it. I'm not one to give up and hope is everything, but kind of hard to hang on to it at times, too. I hope you feel better tomorrow and know that I'm thinking of you.
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I know those words weren't to me Sharon but I needed to read them none the less. We are not suffering alone and we all have times of sadness and weakness. Wanting to give up but feeling ok enough and with enough sweetness in it all that keeps us going. Especially the kind and compassionate words from our friends who know what those late nights are like, the uneasiness and the fear. But triumph too which allows for some pride and strength. Thank you for your post Sharon. Best to you and all my new sisters. Much love.
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Valerie -- Anything I say here is for anyone who wants to read it and gets something out of it, so I'm glad it helped you. I've only been here a week or so, but it has become an important lifeline for me. It means everything to me to be able to communicate with other women who are on this path. Only those of us in this fight truly "get" what we are experiencing - the highs and lows and fears and doubts and all the rest. You are all my sisters!
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Love your friend, Rob's, advice, Terre!!! I don't think there's anything more important or more true. Without hope, we might as well throw in the towel. I love it and think we should adopt it as our rallying cry here -- DON'T EVER GIVE UP HOPE!!!
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Carla, the same thing happened to me. Over 4 years with bone mets and then in August suddenly 2 small lesions on my liver.
I still have a hard time believing it.
Leah
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Thanks for the great posts Sharon, Valerie, and dlb! And the lovely picture Bosco. It's true - never give up hope. I just have some "down" days when I'm depressed. Unfortunately, depressed is a rather natural state for me. I'm mostly scared right now, hence the depression. The Christmas before I was diagnosed with Stage IV, all I wanted to do was sleep. I was mind-numbingly tired. Christmas 2013 wasn't as bad. Anyway, all I want to do is sleep again; there's not enough sleep in the world for me. Part of it is because I sleep in two to three hour increments (back in the day, I could do 12 hours straight easily enough!). But I'm also afraid that it's more than that. I have a CT scan on the 28th; I'm sure that will help my mental state, because then I'll have more info. Hard for me to admit to being scared - I work really hard to keep the fear at bay, but sometimes it just creeps up and surprises me. I'm sure tomorrow things will look better!
Hugs to all,
Terre
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Hello to all,
Carla I'm so sorry to hear of your possible liver mets. I'm praying it turns out not to be that, maybe something like hemangiomas which many people have, as I do myself and it freeked my onc out during a scan for my ovaries last year. We're all thinking of you, please let us know how you are.
Bosco, thanks for the lovely pic, that's how I try to live every day. Some days are harder than others but I do my best.
Terre, no problem admitting you're scared, I think we all are. I don't think we'd be human if we weren't. We all have reason to be because of all the unknowns but even someone not facing what we are daily has no guarantees. I guess that's why it's important to make the best of each day. I hope things are looking better today and praying for good results on the 28th!!! I'm feeling positive that everything is going to be ok.
I have an appt on the 20th to see the orthopedic surgeon about my humerus. I guess he wants an x-ray to see if it has healed and whether we need to proceed with surgery or not, praying I don't need surgery.
To all the wonderful women on this forum, thinking of all of you and praying your feeling well.
Hugs to all, Annie
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Dear Kiwi Cat Mom,
I am in the same boat. Sometimes I think it's time of extra healing when I have to sleep and sometimes I think it's avoidance of the whole situation . Depression comes and goes and even though I take 40 mg of Celexa I still have days when the depression won't lift. I'm married to a shrink so he wants me to talk but I want to protect him also. But when I do talk it is amazingly helpful if I can keep the guilt at bay. Other times , I just have to accept the sadness and know that it will pass. I feel like I am still at the stage of trying to accept it all. It's only been seven months and it is life changing on so many levels. I think we should be kind to ourselves and let it all flow! See you all again soon! Love,
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Hi, folks! I've been reading and keeping up with the thread, but haven't posted in a while. I'm still here, though. Carla and Terre - hope things turn out well for your future scans. Good to see new faces...
I'm mostly doing well at this point. My blood work looks good and my last scan was very encouraging.
Insurance, though... Hole guacamole, Batman. What a scam!
My original referral was for a Dr. Intimidating, who I saw once. The next appointment, he wasn't available, so the cancer center substituted Dr. Sweetie (names have been changed to protect the innocent, or guilty, as the case may be.) I liked Dr. Sweetie, so I asked if I could keep seeing him instead. I called everybody twice to make sure I was still covered for Dr. Sweetie, even though I didn't have a referral for him. My primary care doctor, my insurance company, and the cancer center all assured me that I was equally covered for Dr. Sweetie and didn't need a new referral. For two months, all was well.
A week ago, I got a statement from my insurance co. saying the Sweetie visits and treatments are covered as "non-referred", meaning I have to pay for half. We're talking $1200 for two months. Hello? I asked about this in advance. I asked everyone twice.
And now I'm waiting to hear from my primary care physician about getting a new referral. I called her on Friday and left a message. I called again yesterday, and got some assistant, who says they're waiting for an approval. "Approval from whom?" I never got a straight answer.
I already have high blood pressure. I don't need it to go any higher. grrr.
Sorry about the rant.
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NineTwelve, that is so frustrating, but it sounds like it's an insurance error. Your PCP may not have directly referred you, but since Dr. Intimidating wasn't available, you basically got a substitute -- not your choice. You didn't go to him directly as a non-referral. It will be some added frustration, but I think I would call and write letters if necessary and fight those charges. Since it sounds like both docs are in the same practice, it may be something as simple as an incorrect billing code by their insurance biller. I would start there (with the doc's office.) But Grrrrrrrrr is right!!!!!
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Thanks, dlb. I haven't tried the cancer center yet. According to my insurance co., Dr. Sweetie is in their system as working from a different hospital (he probably has two gigs), and his specialty is listed as "internal medicine", rather than medical oncology. According to my insurance company, that was why my last bill got kicked back as non-referred. I think I will call the treatment center and let them know about this. If nothing else, I may prevent future patients from getting this run-around.
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Good luck with the insurance, NineTwelve. I don't have fond memories of US insurance.
Valerie - it takes time to get to a place of more acceptance. Sounds like you're doing great with just 7 months of experience at this beast.
I'm doing better today; sorry for the whine yesterday. It's Friday here in New Zealand! Yea!
Saw this on another thread and stole it, following on to the Don't ever give up hope...because there's always cake!
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!!!!!!!!!!!!!CAKE !!!!!!!!!!!!
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Hey ...yea since I can't talk verbally its good that I can type...I was dx with Laryngitis (Acute)..Last nite went to ER..cuz my throat and tongue felt like they were swollen up...so that is a sever side effect from Faslodex so my paranoid self went to the ER...and of course the ER was packed with folks..they said that all the Boise Idaho hospital rooms were full...anyhow..yes I was loosen my voice just thought it was from the swelling ....I have never had Laryngitis ever...LOL...Go figure...I need to get better for the big Game Packers/Seahawks game Sunday...cuz I need to yell...Another day in Carla's Journey...
Have a nice evening Sisters...L&R Carla
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NineTwelve, I just have a concern about Dr. Sweetie's specialty not being oncology. I definitely want an oncologist on my team. It's nice to have a sweet doctor, but they need all the tools and information too. I now have a new primary care physician, specialty internal medicine. He is soooo much nicer than that bee ya ha choo I had before. I'd rather have my old oncologist than my new oncologist, but certain practicalities pushed me to make the change. I think the new center has more to offer me, but my old onc was so nurturing. Anyway, my mind just decided to do one of its little hop skip jumps so please forgive, and I hope you are able to resolve the situation to your satisfaction, whatever that turns out to be.
My special Kiwi Terre, I hope you really are feeling better. In Five Element Acupuncture, Spring is a time of great energy. Sometimes we don't have the energy to quite keep up. For me it is my depression. Spring is my absolute favorite season. I look forward to it. As it approaches, my mind fills with all these ideas of things I'm going to do. I buy tools, paint, wallpaper, gardening supplies, etc. But then I crash. I cannot sustain the energy of Spring. So many years these things sit. Now, Autumn is a season that I hated when I was in the depths of my depression. The colorful leaves only meant death to me. Everything was death. Plus, Winter was coming. Horrible. What a terrible season! I'm much better with Autumn now, and I see the colors as beautiful. Moreover, the energy of Autumn is downward. Autumn and I are very sympatico. LOL. I get much more accomplished in Autumn than in Spring. Perhaps it will help you if you ease into the activity of Spring. Or perhaps it will help you to just laugh at the insanity of this post. Definitely it will help you to eat cake. Love ya Terre the Terrestrial.
Valerie -- married to a shrink -- too funny. Well, maybe not. I've only known them professionally, and I've known a lot. Muahahahaha. If he is able to step into his professional suit for you to talk to him, I think that he is a handy guy to have around. He should know if it is too difficult to listen to you talk about your feelings, and then he can refer you. He's bound to know who is good. Meanwhile, I would totally take advantage of his training. Oh my yes.
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Oh my, Carla. I had laryngitis once. It was great fun trying to call out sick for work, call my doctor. It was really crazy. Mine only lasted a day or two. So, yea, I hope you get well soon for the game Sunday. Take an extra shot of vitamin C too. If your hospitals were all full for the same reason ours have been, flu, you need to help your immune system. Of course, only take stuff you know to be safe for you.
We had our 3 year old today. I was foolish and didn't take any pain medicine in the morning. 3 year old boys do not give you time to go upstairs to take your oxycontin. They just don't. So I grabbed the 3 oxycodone I had in the cupboard downstairs. No problem. These are good for 4 hours. Well I kept moving (walking, dancing, throwing snowballs, and saving imaginary kitties in imaginary trees). He left. Mom and I sat down to eat our soup. When I got up to do the dishes, I was done, kaput, fini. Not level 10 pain, but seriously uncomfortable. I came up here at 6:30. It's 8:40. I'm still waiting for pain relief. It just about goes away and then I get up for something: to share something with mom, to try to get my baby to come over to the bed and join me, to start to wash my sleeves (I have to get up again to finish washing them). We had a great day though. No complaints here.
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terre, love the quote about not giving up hope! Trying very hard to not stress about work, so unimportant in long run and to do more things I enjoy each week. Hard this time of year as work is crazy busy, but I am not getting as stressed as I used to.
In terms of livings wills, etc, I have seen suggestions for videoing your wishes, writing in LW of course and writing "preferences/suggestions" also. I am not ready to think about this yet, so will focus on more concrete wills and trusts for now.
Hugs to all
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Terre, with all you have been going thru lately, end of year work, dh medical problems, holidays, your friend passing, and dealing with living with bc, yikes woman, no wonder you can't sleep enough! I also sympathize with the 2 hours at a time sleep pattern. Have definitely been there and it wears you down. So glad you are feeling better today, but maybe your increased fatigue has more to do with all the things you have been dealing with than anything else.Ninetwelve, Nice to hear from you again! I mostly lurk too, but have been wondering how you are doing. I spent my morning on the phone with clinic and insurance trying to get a procedure preapproved. Lots of frustration, no results. Insurance wants preapprovals, but won't actually commit to paying before they see the charges. Hope you are able to fight and win!
Valerie, I'm relieved to hear I am not the only one still struggling some months after dx. The last few days I almost felt like myself again emotionally, at least for a while. Even tho your dh is a shrink, maybe it might help to talk to someone else professionally? I know there are things I would like to talk to someone about that I don't think my dh needs to hear.
Sharon, Wisco sister! You sound like you are doing wonderfully well at accepting your dx so far. Sorry you have to be here, but welcome just the same.
AnnieO, Are you still feeling wore out from the rads? Fingers crossed that you don't need surgery.
LindaE, Have you gotten that arrogant ass of an onc straightened out? I hope you got a better explanation of why some mets were not mentioned previously. Sometimes I think we pay more attention to the specifics on the radiology reports than anyone else.
Sending caring thoughts to Carla (Go Pack Go!), Deanna, Dune, Dee, Terri, Caryn, PattyP, Meegan and LeahS (you have given me some really good laughs with posts elsewhere). I'm sorry if I am still missing anyone. Wishing all a sweet night's rest.
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Carla - hope you feel better soon and it's not a horribly icky flu bug!
Dune - thanks so much. You're so funny - you always make me smile. I've always loved spring and summer, but maybe they are over-energised for me. I used to love autumn in the Black Hills - the days are still warm, the leaves smell wonderful, and the nights have that crispness in the air. And then it snows, and I'm totally over it. I've only mentioned this like 20,000 times, but I'm not fond of cold. Glad you had fun with the 3 year old, but sorry you're sore.
Reading--I hear you at trying to not let work stress you out. I try to keep things balanced, but there are times which it's just nuts. I feel like I should be starting to wind down my career, but the demands are bigger every day. Oh well...keeps me entertained!
Update on DH..went to the lymphadema specialist yesterday. She gave him a bit of a work over!
From massage, his feet went down to normal size! Didn't stay there (normal size) for more than a couple of hours, but was the smallest I've seen them in almost a year. She gave him instructions on self-massage to drain his lymph system and some exercises to do as well. So that's looking positive and he's more positive than I've seen him in a while. It's Friday, I'm done with work, and the Levin A&P show is this weekend. It's my favourite annual event. Sheep dog trials! Love them! Here's a link if you want to know what it is.
Like an old-time county fair in the rural midwest US. Like where I grew up. http://www.levinapishow.co.nz/Hugs to all,
Terre
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Good morning ladies from freezing Quebec (-25 celcius with so much wind this morning!)When I looked up the temperature this morning, I thought I'd do my groceries on line with home delivery - no availability - I guess a lot of people had the same idea.... The snow is blowing off the trees, it's beautiful from my living room...
Jobur - I'm seeing my onc on the 27th. Have not heard from my email but was not really expecting to. Anyway, if radiologist Dr. Incompentent is still in the picture, I will advise my onc that I do not want him involved in any way or form in my reports. He was seeing mets where there were none and no bone tissue where there is bone tissue....Crazy, huh? The nuclear doctor who read my last bone scan (not the same Dr who read previous ones) talks about stability of L1 met. None of my reports ever mentioned L1! According to ortho, not only was it on previous bone scans, it's now bigger. I'm scheduled for a CT scan of the lumbars on the 22nd to see if the lesion is indeed a met. I go through all my reports with a fine tooth comb. Had I not brought up the L1, it would have gone under the radar. I think we have to be proactive and stay on top of our results/reports.
There was a bit of scandal a few years ago concerning inaccurate mammograms. Dr. Incompentent was one of several radiologists who reread 1,000 mammos. I hope he did a better job with those. Can you tell I'm a little frustrated?
Anyway - let's stay on top of things and be proactive. I hope you all have a nice day and sending good vibes to all of you.
Hugs - Linda
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On a more positive note, I was thinking how I felt in Nov 2013 prior to dx. I was in so much pain, could not walk without crutches, had very little energy and was always tired. A little more than 1 year later, I'm feeling so much better. It was a roller coaster year in terms of appts, treatments, rads, surgery (rod in femur), scanxiety, etc. but all worth it. Not like my pre-cancer life, but certainly much better than I had anticipated 1 year ago.
Linda
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I'm new to bone mets after 4+ years with mets to pleura (lung lining). My onc originally felt biopsy was unnecessary, but agreed to make sure that this was really bc, and not one of the other cancers I've had. I was particularly interested in sending off part of the sample to FoundationOne for genomic testing and asked the radiologist to be sure to get a large enough sample. So I just saw my onc, who tells me that they sent two slides to FoundationOne, only to be told that the first slide didn't have enough cancer cells and they had misplaced the second sample. I'm still hoping it shows up, but this doesn't exactly inspire confidence!
Has anyone here had useful results from FoundationOne? Is it worth locating an older sample, or having a new biopsy?
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Wow, carpe diem... that's crazy! I wonder who actually misplaced the second sample? Since the first one wasn't useable, I wonder if they both weren't and your onc is doing a CYA thing?
Can you tell us more about Foundation One? I guess I could look it up, but curious how you heard about it, what others have said about it, etc.
Linda, good for you for speaking up about the incompetent doc! That's really quite scary to think that a radiologist could incorrectly dx mets in one area, while neglecting to mention or missing it entirely elsewere! That should be a reminder to all of us to read our reports carefully and ask questions, especially when something doesn't sound right or jibe with what we're being told. And I'm totally with you on what a difference a year makes!
Terre, glad your DH got some relief from the LE massage. And I'm sure he would be much happier with the heart failure dx off the table and not hanging over his head! But what is the LE from? (Ignore that question if it's too nosey, LOL! I've just always associated LE with bc, but I guess it can develop other ways?)
Hugs to all heading into the weekend! And Carla, my thoughts & prayers are with you especially as you wait for more news! Deanna
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dlb,
This is from their website: FoundationOne, the first clinical product from Foundation Medicine, is a fully informative genomic profile that complements traditional cancer treatment decision tools and often expands treatment options by matching each patient with targeted therapies and clinical trials that are relevant to the molecular changes in their tumor based on the most recent scientific and medical research. The test utilizes next-generation sequencing to identify alterations in all genes known to be somatically altered in human solid tumor cancers.
They claim to get useful results in 80+% of cases. I've had gene testing before for individual genes (PTEN and P53) with negative results, and I'm not likely to have one of the BRCA genes since my family history doesn't include early-onset cancers, but my sister and I have each had three different cancers, so you have to think something's screwy. My onc knew I was interested in further testing if anything seemed reasonable and suggested this. She's had patients who were tested by FoundationOne, but found the the recommendations didn't always work out.
I'm still hoping to get results from this, but it does seem the Murphy is hard at work. As usual.
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Very interesting. When I had casually asked shortly after my mets dx if the testing that could predict what drugs might work best were worth pursuing (not sure if that's technically genomic testing or something else?), my UCLA onc had said much the same thing as your onc -- that it works for some, but not for others.
Two more questions... Is it expensive? (I would imagine it is.) And does your health insurance cover any of it?
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I sure hope I feel better in a year. In fact, I need to feel better by May, goshdarnit. Maybe I'm just a wuss. Probably I need to take my meds properly. I have a bunch of pills to take, including a lot of supplements. My morning and nighttime supplements are best on an empty stomach. My morning pills include synthroid, which needs to be on an empty stomach. So I get up and take those pills and then have coffee (which I shouldn't have with synthroid but oh well). Then I need to wait a while before I eat, and after I eat I can take the pain meds. So I tend to put off the pain meds, which then causes me a good bit of discomfort, which wipes me out -- and so here I am in bed. So, now that I have noticed the problem and what is causing the problem, I will find a fix for it. When I get up for a nighttime wee wee, I'll take my empty stomach pills. When I wake up, I will eat something, even if it is just some crackers, so that I can take the pain pill. Tada!!!! Problem solved! I'm a genius.
I'll work on my computer later. I am sort of rebuilding it. That reminds me. I need to find out if my power supply can handle 2 drives. This will be interesting: trying to find out about my power supply with me upstairs and the computer in the basement. Challenge accepted.
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hi ladies. Just a shoutout. Hope everyone is having an incredibly wonderful day
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terre, so glad the LE massage worked at least for a while. If it's been bad for a year, I would expect it could take some time to resolve. Will he go back to the LE specialist or try the LE massage at home? I too thought LE was only from BC. I bet you could get a lot of advice from the LE threads too.
Linda, you are so right that we need to be proactive and our own advocates. I feel I have a lot to learn about my cancer still
Happy weekend!!! I am trying to ski tomorrow and Monday for a few hours. We will see if I have the energy.
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