Bone Mets Thread
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xavo. - jeoulus of all the places you've been. Hugs
Hootie hoo
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Jen, Welcome. We're a great bunch here.
Deanna - Crappity crap. But only scans will tell. Praying there is no progression. Are you having more pain or symptoms?
Mommallthetime - Sorry about Dani's brain mets. I read the brain mets thread from time to time and a lot of info there. I hope you get answers to your questions.
During the past month, I've had quite a few migraines, much more than I usually have (5 or 6 a year). Now it's about twice a week - and not very painful - it's mostly the light flashing in my eye. My next Onc appt is on 23 July - will bring it up and ask for brain MRI.
Caryn, good to see you. I also hope also that akward is due to your wonderful NED.
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deanna,
Yes, I feel somewhat out of place here. Four years of NED, no pain, no real complaints about se's. I did switch from Arimidex to Femara a bit over a year ago hoping for less achy knees and I got it. Unlike most people on the stage IV forums, my life is virtually unchanged. My kids are grown and married, so no worries about them, when things go south for me. They live very close to me, so I see them all the time as well as my fabulous granddaughter. I am very well traveled and have continued to pursue this passion without hesitation. I not only have a job I love, but it's a calling that gives me great purpose. My medical providers have been great, so no complaints there. I love my recon and I love my port (even though it was only used for Aredia, scans and blood draws, but caused a complete pneumothorax😊). I know it sounds crazy, but other than actually having MBC, everything else is pretty darn good. I love bco and it was a real life saver during the first 6 months in bc land, but now, I'm just an odd duck. Sadly, there have been a few ladies on bco who have pm'ed me ,and unkindly suggested that I take my too happy, not stage IV enough self elsewhere. My experience with MBC may not be typical, but it is my experience. It doesn't invalidate the experiences of others, nor do I wish to diminish the pain and hardships of others, but I guess my brand of MBC is considered, by some, to be less valid. I suppose in the eyes of those folks, I haven't really paid my dues. It makes me very sad to think that there is some sort of caste system for MBC.
Caryn
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It's not a caste system. Just imagine that you were invited to party where everybody was divorced. You happen to get along great with your ex, he's wonderful, picks up the kids pays support, money not a problem, never a lick of any issues. No drama, no nasty expose to friends and family, no pain nothing zip. Now in my experience I would say about 3/4 of the divorced folks I know have been through the ringer. Whether it's financial, kid related, ugly family scenes, splitting assets you name it. Some of the folks I know who have gotten divorced have suffered ugly affairs at the hands of their ex spouses it leaves me speechless. (men and women each) Now then back to the "party" the one thing you have in common is divorce. When the rest of the folks start talking about their experiences and sorrows and you pipe in, how do you think that will be received?
Now then imagine the stakes are death, endless treatments, ugly side effects, lost jobs, lost health, lost wages, self esteem, pitiful kids, pain and suffering and people dying right and left. It's really hard to listen to a pollyanna expose even if it is all true and precisely your experience. Be thankful and LOW KEY because it is clearly NOT the experience of 75% of the folks here or the boards wouldn't even be here to talk about so much misery and celebrate so many angels. Which was my point before you bit my head off a year ago when you started "Life doesn't end at stage 4 really." I thought given the constant death of so many it was in poor taste. I know I will get my head chopped off again, but there is a lot of BC in my family and nobody will ever convince me it's "easy street!" So I will post this let you read it and take it down.
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lindae- darn sorry about the migraines. I sincerely hope a MRI would rule out bad stuff and give you some reassurance. I hate the fear I now have with nearly every ache . I never worried about a common cold before. Def body\ mind situation. K
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Hi Caryn, I can somewhat sympathise with your "out of place" feeling.
I don't belong with my local Breast Cancer Support group, because I am living proof that sometimes there is no cure, and they are trying to stay positive. Also, I have never had chemo, so I don't belong with those suffering hair loss and the other awful side effects of the drugs.
And since I don't have any symptoms of the tumours in my hip, I don't really fit in with the Bone Mets team or the other Stage 4 ladies either!
Physically, I am fine - mild warm flashes from the Tamoxifen, but no pain anywhere (other than normal old age), no lymphoedema, no reconstruction dramas. So when I go out, (provided I wear my foob) no-one can tell I'm a cancer patient.
Mentally though, I am handling this very badly. I am now seeing a psychologist for "Adjustment Reaction Disorder with Mood Disorder". I haven't been able to go to work since January, so lost my job, but am back there doing a couple of days work per month - not really a proper income. Which basically means my life skidded to a halt in January, and I want to crawl into a hole and forget I've got cancer.
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"It's not a caste system. Just imagine that you were invited to party where everybody was divorced. You happen to get along great with your ex, he's wonderful, picks up the kids pays support, money not a problem, never a lick of any issues. No drama, no nasty expose to friends and family, no pain nothing zip. Now in my experience I would say about 3/4 of the divorced folks I know have been through the ringer. Whether it's financial, kid related, ugly family scenes, splitting assets you name it. Some of the folks I know who have gotten divorced have suffered ugly affairs at the hands of their ex spouses it leaves me speechless. (men and women each) Now then back to the "party" the one thing you have in common is divorce. When the rest of the folks start talking about their experiences and sorrows and you pipe in, how do you think that will be received?
Now then imagine the stakes are death, endless treatments, ugly side effects, lost jobs, lost health, lost wages, self esteem, pitiful kids, pain and suffering and people dying right and left. It's really hard to listen to a pollyanna expose even if it is all true and precisely your experience. Be thankful and LOW KEY because it is clearly NOT the experience of 75% of the folks here or the boards wouldn't even be here to talk about so much misery and celebrate so many angels. Which was my point before you bit my head off a year ago when you started "Life doesn't end at stage 4 really." I thought given the constant death of so many it was in poor taste. I know I will get my head chopped off again, but there is a lot of BC in my family and nobody will ever convince me it's "easy street!" So I will post this let you read it and take it down."
rosevalley,
If this is how you feel, there is no reason to remove your post. Your opinion is valid. I would rather see a public expression of it than receive a private nasty-gram. Am I a Pollyanna? You bet, by nature, no matter what has happened in my life, I make lots of lemonade. I won't apologize for that nor will I hide my light and pretend that my life is anything but what it is. I have never said bc or any cancer is "easy street". I too have lost many, many family members, including my younger sister, to it so I have seen the horrors it can bring. Please don't assume that I haven't, but understand that I have always been an optimist and probably always will be. I am who I am, just as you are who you are. Nothing wrong with that. If you believe in what you've posted, stand by your convictions and leave it.
Caryn
PS: I am eternally thankful. I also loved your divorce analogy, because I LOATHE my ex, but I created a separate thread so no one had to attend my "party" if they were uncomfortable.I also, if you will go back and re-read, never bit your head off on the other thread you referenced. I put down neither you nor your profession, I simply explained my position, and asked why you felt the need to denigrate me and my profession. Please block me if you find my posts offensive or upsetting. I would understand
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Patty, don't be. I paid price for travel light - not having any children. Sometimes felt a little empty at the bottom of heart. Your boys' pictures always made me feel happy for you.
Rose and Caryn, please do not get personal, having mbc is bad enough for anyone here. Rose, I have read quite several pieces of your posts, which are heart breaking for me. I would love to respond, but I am new to this club, I do not know how to be helpful. Believe me that I whole haertily felt the sorrow underlined your all posts, including the one here. I whole heartily hope you will get the treatment you wanted and be helped. On the other hand, I would not assume Caryn was being insensitive when I read her high-spirited posts. I felt that not only she meant well, but also provided more aspects to the colletive experience of mbc. I was encouraged by her in seeing that there are more ways to treat our mbc experiences. Although no one would choose to have to experience this terrible thing, the fact is it is never a question. So, what is the question is probably how we choose to deal with the relentless reality. I know there are the limits of our choices. Still we probably have to try anyway. After all, I am happy for Caryn to have a long lasting NED. I do not understand why she should hide it. I think telling others that it's possible to have long lasting NED is a good thing to do. Trust me, the ultimate inevitable is in everyone's mind. No one actually needs to be reminded. Rose and Caryn, love you both.
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I wish NED for the entire cancer community every last one no exceptions. Who would wish this on anyone? Not to be. Not yet anyway. A pity party for having NED is a bit much because you are not sick enough to quite fit in.. awhhh. I have been watching the ravages of BC since I was a kid. The reality of it sucks. It killed my Grandmother within 3 years and is working well at taking me out in 8... but the essential reality is unchanged even though many decades have passed. Oh and my my Aunt got it 2014... a Great Aunt died of ovarian cancer after she had BC 20 years earlier... decades and decades of suffering. You can not dress up MBC as anything other than evil.
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Xavo,
Yes, I agree that we should not get into a personal dust up, but I had to address rosevalley's post. Differing opinions neither bother nor offend me, as long as we are civil about it. I hope it ends here and that those who are bothered by my positive, sunny outlook (in the face of MBC) simply block me. Even if only a minority of us are living a "normal" life with MBC, our voices have every right to be heard. I am Pollyanna, not Shrinking Violet 😘
Caryn
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lindae - thx for your support. And pls let us know how the scans go.
Deanna i feel so bad you had this uptick on the numbers. How often do they take the markers for you? Feel better!
With my daughter it's only about every 4/5 wks, it makes me nervous but her Onco does not want to put much weigh on the #s.
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Hearing you, Rose. Crying with you. The sorrow, the profound frustration and unfairness in this cancerland!
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momallthetime,
If it's any comfort, there are oncs who do not do tumor markers at all, even at stage IV. They are not reliable for everyone, so some oncs just stick with scheduled scans. I have never had tumor markers done, just scans at regular intervals.0 -
suems
I'm so sorry you are in such a dark place right now but proud of you for seeking help. I hope your therapist is able to guide you through this awful time and help you find some joy again.
I wanted to join this thread thinking it would be helpful but I find the squabbling between Caryn and Rosevalley discouraging. What is wrong with people?! Do we really need to be nasty to one another? Wherever you are in your treatment, NED or otherwise we ALL HAVE F#$@+ING STAGE 4 CANCER! If someone is lucky enough to be NED right now God bless her, cause unless someone finds a cure or she gets hit by a bus she won't always be NED.
Be kind to each other. There's enough hurt in the world let's not add more.
Celeste
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Hi Celeste,
Thanks. We should be kind and I apologize if this discouraged you. I thought a long time before responding. I just don't want to have to apologize or dim my light because my MBC doesn't look like most others. I want to be free to express my feelings just as much as everyone else here does. This flared a while ago on another thread and, sadly, was revived here. I hope it will end here as well.
Caryn
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really? Y'all are going to bring that junk here. It really upset and offended a lot of people on both sides the first time. At least the first round was in a new separate thread . I figured it you don't like what was being said then dont read that thread. But now its on a very ongoing thread. Most of us are like family including Rose. 😁. We have always been about encouraging each other , a hand up not bringing dividion . I don't want to have to quit reading this thread because of some squabble and I certainly don't want to lose 1 or more family members over such a thing.
Why try division in such a place as this? I agree with Celeste, this WILL scare people off both newbies and close family members. I would hope you both take some time to reflect and can see what this can do to our bone mets thread and delete those post.
Just my opinion.
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Celeste. - so glad you found us. Welcome. So sorry you had to see us in the wrong light right off the bat. This is not normal behavior for us. I hope you stick around and get to know us better. We really do encourage each other and not tear each other down. You will find a lot of support, knowledge of our previous treatments and laughter here. Others will be along soon to say hi.
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caryn reading sues post got me thinking that you are not the only one feeling "out of place ". Maybe you could start a NEW thread to encourage others in your same situation and truthfully would be very encouraging to newly DX also. A new thread hopefully will keep this one from being hijacked. Then if people don't want to read your post they can simply not read that thread.
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Please forgive me for not addressing everyone individually. I get overwhelmed. I love reading everyone's posts and feel like I'm getting to know you all. Had doc appt Mon. Scan showed stable and healing lesion in sternum. We will do scans every 2 months and hold off on chemo unless I get another cancerous lesion. I asked him if he thought I would get more and he said yes. Just no way to predict when of course. I felt good about the visit. I need to get copy of the scan report because I didn't understand all the words he used and even though explained I can't remember. Searching for private health Insurance. Anyone happy with their Insurance company I'd appreciate some leads. My disability check will pay for Health insurance thank goodness for it! Payments start the end of Sept . Hoping a restful peaceful day for everyone
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HopeFaithCourage, congrats on the good scan results and thank you for removing us off the negativity. I don't know your age, but if you are over 50 we have AARP Unitedhealthcare. We have very high deductibles ($2500.00 and same out of pocket), but they have been a decent insurance company. We are self employed so our insurance options were very limited.
Deanna, sorry to hear about your rising TMs. Are you sure you will be on Ibrance/Falsodex. Most of us are on it in combo with femara. Please check out the thread, it is very informative.
Linda, good luck on your MRI. I know in the last few months you have changed pain meds, could this changing caused the change in migraine frequency?
Good morning to Xavo, Patty! Dune, Rose, Caryn. Let's all take a step back and breathe! This stress will get to us all, and anger can be one of its manifestations.
Hugs, Myra.
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HopeFaith - that's wonderful news. It calls for a little celebration! Can't help with insurance, we have a socialized health system in Canada.
Myra - you may be right. I've tried medication in the past which that had quite an effect on my migraines. And in fact, looking back, the frequency (you got me thinking - thank you) increased after starting hydromorph contin. I remember taking Lyrica years ago for chronic back pain which did a number on my migraines.
Suems and Celeste - Welcome to this thread! and please chime in when you feel like it.
Suems - this beast is hard mentally and physically. I hope you will get all the help you need. We all need some professional input at some time or other.
Rosevalley - your input is always so wise. Hang in and I hope you're feeling better. Good vibes coming your way from Quebec.
To all you lovely ladies, enjoy your day! in as much as we can, bearing in mind our limitations, pain, scanxiety, etc and other non-related MBC issues.
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Patty
Thanks for your comments. Deanna asked me a question and I responded. Someone else chose to start the fire after that and I simply cannot allow anyone to tell me that I cannot express my feelings openly and honestly. I do sincerely apologize for creating discord here. In answering deanna's question, that was the furthest thing from my mind. I will, however, no longer post on this thread. I did start another thread for folks who are doing well with mets (which is still active) but found it helpful to participate in a thread specific to my mets.I had hoped it was for everyone with bone mets, but I can see I was mistaken. Again, my apologies for contributing to a contentious atmosphere.
PS: I rarely delete posts. I mean what I say and I say what I mean. If I have the conviction to post something, I have the courage to stand by it. I never post in anger and always think about what I write before submitting. As I said, I was simply answering Deanna, and in no way invited someone else to dredge up an old issue, but I won't be passive about it.
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personally I find NED stories inspiring. I don't feel I really have a voice to comment on this now as my bone lesion has been zapped although of course it may return but I hope we do not become an exclusionary community that only wants to hear from those who are suffering and banishes those who have good results.
Can't help on the insurance question - sorry.
But to end on a positive note I am celebrating my 20th wedding anniversary today - a happy day
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I am very sad to see Caryn go. You see I think so negatively, and frequently I tell myself and others I have only a year. That's based on a poor response to treatment so far and my negativity. When I go to that dark place I think of Caryn and Terre, and I feel hope. I'm very sad.
OMG, but you Patty, I can see you getting your boys to do their chores properly. Patty's ds1 is taller than her. Sweet little Patty Peppermint doesn't take any crap. You go girl!
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Bosco, happy anniversary. What are you doing to celebrate your 20 years? Have a great celebration.
Hi Celeste. Welcome. These ladies have really been so supportive to me as I walk this path mostly scared to death and without a trust in my doctors. My do likes to dismiss information when I say it's from bco. She doesn't get that these ladies have tried these things. The info is good.
I have Cigna for my insurance. The retirement system pays most of my premium, and they've been great.
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I too am sad to see Caryn go. I have been reading this thread for well over a year, and she is someone that stands out in mind as hopeful and inspiring. She seems very knowledgeable about so many aspects of MBC and bone mets despite her "limited" experience and always offers intelligent advice and suggestions to those who ask questions. I find her NED very encouraging and have always been very happy to read all of her posts. She is also someone I feel I know beyond just her cancer diagnosis... aspects of her life, which is always nice. I understand the divorce analogy ( I have an ex husband, too...).... but really hope she will reconsider. She is a valuable part of this group!
Dune - it was me that said I like steroids.... although they didn't stimulate my appetite... that was the one thing they didn't do. They DID give me energy... which otherwise I had NONE of... so they helped me to get out of bed in the morning and accomplish some of my normal routine. That was the positive; the negative (as my husband and children will verify) is the grumpiness.
Deanna - so sorry to hear about the TM's. I HATE TM's, especially when they go up....they cause so much anxiety. I am glad you are getting scans quickly...and hope they will show that the rise has nothing to do with progression.
Xavo - "simplicity".... that is the key. Going back to my little rant a few days back, I the mistake I made (we made... my husband and friends spread the word while I was flat on my back in the hospital with bone mets so extensive that I had compressions everywhere) was being too vocal about the diagnosis up front. So... three years later, I am still running into people that I haven't seen and invariably get some sort of look... pity, whatever... it's just exhausting to me. I am part way through "Anti Cancer" and I think one of the lessons that jumps out at me ( I am trying to ignore the part about "no sugar" since I am just a dessert addict).... is the mind body connection.... it's sort of the old "if you think you can, you can"... idea. Obviously, I have Stage IV cancer, period. However, I am trying so hard to be optimistic and live my life very normally... I'm doing all of the things I did before and am as "healthy" as possible, both for my own reassurance and for the reassurance of my family.... SO ANYWAY it's frustrating to try to live this way and then to be reminded by every random person I run into that really barely knows me that I am sick.
So - simplicity is good. Maybe we should ALL move to Italy... the Italians have the right idea... great food, great wine, siestas every afternoon (or is that Mexico? Anyway, they take a long break.)
XO
Andrea
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I so much hope that everyone can feel comfortable and warmly received anywhere cross the board on every thread. Sometimes personality clashes with each other. We allow that to happy with sense of humor and without judgment just like families. I so much hope that both Rose and Caryn will post here again.
Welcome, Suems and Celeste!
Deanna, I did not find your post mentioning your TM number somehow. Learned it from others' posts. Concerned. Hope it gets normal soon.
Dune, have you gone through your second dose? Hope you will continue doing better.
Bosco, Happy 20th wed anniversary!
All, have a nice day!
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LOL Andrea. Beware: rant ahead. Again, I am having trouble getting my xanax. I do not have enough to last until my PCP appointment. He won't be in until this afternoon. They told me yesterday they were sending 2 scripts to the pharmacy. Last night, no scripts at the pharmacy. Today the doctor's office says they were sent around 7:30 last night. I call the pharmacy. They have one script but no xanax. For those who have not heard my xanax rant: I've been taking it since 1982 when it first came out and they thought it wasn't addictive. We learned differently but it was the only thing that helped my pathologic anxiety. I never abused it and take only 2 mg daily, 1 when possible. Up until my insomnia got out of control, about 12-14 years ago, I often took none. Well, now I need 2 to sleep, occasionally 1. But now that I have mbc, they are giving me a hard time. It started with the shrink I was seeing to help me through a rough spot dealing with the disease. I ended up in the luney bin for a week without xanax, a week in a hell hole without sleep. I moved across town. New PCP says she won't prescribe it. I didn't ask her to. I was only listing my current meds. I was still seeing the shrink for that. Then my new PCP. He agreed to prescribe my psych meds. However, we seem to be having a problem with xanax. We haven't talked about it. But we will next week. They have had me jumping through hoops to get it. My thing is: what sense is there in depriving me of a med that helps me, at this point in my life? Know what I mean?
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Xavo, yes. Thanks for thinking of me. I'm doing fine. Last week, Thursday was when I started feeling terrible. That will NOT be happening this week. Right girls?!?
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Andrea, adding one thing Italian: when we, my husband and I, arrived in Rome (from NYK) several years ago, it was around 4:00 pm, NO ONE was on duty at the Costumes to check our passports! The plane-full passengers from NYK entered Italy wthout their passpots stamped. Everyone, holding their passports in their hands, looked puzzled and slightly worried while quietly and freely entering the terirtory of Italy. The Italians are lovely in that sense, relaxed, may be too relaxed.
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