Bone Mets Thread
Comments
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Musiclover - Just sending you a BIG virtual hug and hoping things improve soon.Linda
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Linda that's a great idea, and best of luck to Dani. Maybe she's finally catching a break. That would be so awesome.
Music Lover, what's going on? Are you feeling sick? In pain? Depressed? You sound depressed. What happened to knock you down?
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I shouldn't have posted that, I'm so sorry everyone. I want my old life back so badly. I feel like I dreamt this nightmare up and then it happened. I know we have no control over our destiny and all of that. Basically, I am not as tough as I need to be. Please don't give my comments another thought, there are so many here who are going through a very tough time. The zometa effects will wear off and I will be a lot better. Thanks ladies.
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Musiclover - Please don't apologize - you're expressing what you're feeling these days and that's OK. We can't always be perky and positive and this is the place to let it out. We're all here for each other - the good and the bad.Linda
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Linda sweetie, you are just being honest. It's not even me personally, it's my daughter going through this hell, and yes it's hell. Because you guys have to constantly be reminded of this monster, we try so hard not to make it a subject in our family, but how can we not, when all the time it's another test, waiting for another result, the pains the worries the decision making, constant...it's too much for anyone. You, all of you, all of us, caring family we are strong, but we are not made of steel, and that's actually a good thing. Yes, there are ups and downs. I can only wish a better day tomorrow, really don't beat yourself down when you are feeling low, go with the flow, and of course try to distract yourself. I tell you a little secret, my vice - Housewives from anywhere, it's so mindless that my mind just whirl around and it relaxes me, what can i say.
Dunsleeper, a break, what's that?? It's been so long....really hope so.
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musiclover,
No need to apologize for what you post. I think it's healthy to let it out, certainly better than keeping it in. Forgive me for being blunt, but we will never get our old lives back, never. Having bc, especially stage IV, changes us forever and there is no going back. For some, the changes are more devastating than others but all of us need to forge a new reality. I have no magic formula on how to do this andto be honest, not even any helpful hints. But, I do know that whatever my life becomes with bc, I'm not putting my foot in the grave before I have to. I am so mad at bc, that I refuse to let it take my life even one minute before I have to. Am I crazy, in denial, unrealistic? Nope, just stubborn snd determined (and on Effexor!). Don't be hard on yourself, bc is hard enough.
Caryn
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MusicLover, I totally understand how you feel and I'm pretty sure everyone here does. I agree with Caryn, better to let it out than to keep it in. Some days are harder than others and I'm sure the side effects you're experiencing from the zometa infusion are making you feel down. I did so well over the holidays and then the day after New Years Day I woke up crying and couldn't stop, it's like I had held it all in and it just needed to come out. I miss my old self too and wish I could have my old life back. I guess we just have to forge on and do the best we can and it's ok if there are times when it makes us sad, we are human after all. Be kind to yourself, you're doing great.
Hugs, Annie
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Hi Ladies! Well, I got the official reports yesterday and it was exactly as I suspected/predicted. The Taxol/xeloda combo is shrinking the liver, lung and brain tumors/nodules/lesions. The CT scan report said of the five lesions in my liver, only one remains and that one is half the size. The largest nodule in my left lung shrunk by about 2/5 of its size. Doc was very happy with this report. But like he said, and I already knew, "the bones are not cooperating". This was very evident on the bone scan in comparison to the older one from 3 months ago. From the report: "There is widespread osseous metastatic disease with several new and increasingly avid lesions. New lesions are seen on the upper and lower sternum, thoracic spine, lumbar spine, ribs and scapulae, hips and pelvis". There are "spots" pretty much everywhere in the core area of my body.
So, it seems to be hanging out on my bones, trying to hide perhaps? Doc wants to continue this treatment plan for 6 mos now, with scans again in three months. I'm going to start an alternative therapies program in conjunction with this:
We'll see how that goes. I posted pics and more info to the www.caringbridge.org site under the name sky lotus.
Scans don't freak me out. I think it's cool we can see in there. But, I remember they did when I thought I was cured, or in remission, or NED, or cancer free. So, I can empathize with those of you who get unsettled by them.
Thanks for your kind words! Happy 2015!
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Hi MusicLover, Gosh I would imagine that many of us have felt that overwhelming sense of loss. It is truly a "life changing event that sneaks up on us...unaware, unprepared. I know with my first dx it was surreal.....pretending that I could handle it all...to my family....to my friends ..to hospital folks....my co-workers. As an NP I was way out of my league in oncology. And it was Scarey! Those scans, and other freaky imaging experiences returned me to my teens in that I relearned how to hyperventilate! I wanted to stop and "get off" the weird cancer ride. Then somewhere along the ride during my current MBC diagnosis it started to really change......I was still.me....still in there and feeling more in control. It takes time and for me being open to helpful support. I wish you every success in your journey back to wellness. Hugs, Peggy
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Linda - glad you're on top of it! As they say here in NZ, I wasn't trying to teach you how to suck eggs!
Dune - good luck with the water.
Momallthetime - I am so happy they've figured out the deal with your daughter (HER2+) so she can get the right treatment.
SkyLotus - so sorry your bones aren't cooperating, but so glad the liver, lungs, etc, are. I'll send you some "blast the bone mets" thoughts.
MusicLover - Please don't apologise for being honest. I think we've all had times when we wonder if we will ever be happy again. I have found some "tricks" that work for me to help pull me out of that space and into a happier space. That said, Zometa infusions made me feel like hell and that really screws with my mind. I was explaining the disease (quickly) to one of my managers and she said, "wow, this thing is really a mind f--k isn't it?" Not politically correct, perhaps, but quite true. If you want me to PM you with some tips and tricks that I've posted before, let me know. Happy to do so. It's damn hard, and there's no shame in admitting it, especially here.
Hugs to all,
Terre
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Musiclover- We totally get it, no need to apologize. I had a bit of a meltdown with the New Year. Everyone kept telling me to put 2014 behind me, but that year held the remnants of my pre-cancer self. And then I realized I would never get that back, and that every year hereafter is a big shakey unknown and so much is out of my control. I cried and cried for two days...and then I was done and I felt better. So let it out - tears, words, whatever it takes.
Momallthetime- lots of good options for HER2, I'm hopefulthey will find one that works well for your daughter.
Skylotus- Yay for shrinking liver, lung, brain mets! Boo for growing bone mets. Do they have any theories? Is it possible that the cancer there has a different profile?
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sky - yea for the shrinkage !!! Boo for the bones. So waiting game for 6 mo. We all hate the waiting part. Hoping next scab will show improvement everywhere.
MusicLover. I hear ya. Don't apologize. We all get that way sometimes. The holidays sure make it worse. I hate the out of control feeling. Cancer sucks indeed. After I allow myself a good meltdown once in a while it's back to living for the now and fighting like crazy for life, although it's def a different life. I've been teary eyed and downright sobbing the last few days too. But trying to find my big girl panties. There just so ripped from so much pulling up. Lol. Think I need to go buy some new ones to fill up my drawer.
Hope everyone had a pain free day.
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Getting teary eyed reading all the tears and meltdown posts and feeling better, or at least like I'm not alone in the funk I find myself in. I had a full meltdown this weekend with tears, anger, pathetic sitting on the floor of the garage sobbing with my dog craziness. Not completely sure why. Maybe because I don't feel good. Tired, nauseated, in pain. Maybe because everyone else's life seems to be in full swing with work, fun, hiking, parties, etc. and I'm having a hard time getting out of bed in the morning. It feels like a rainy, sick day and I'm watching a sad, tragic movie......but, it's my life and the movie goes on and I know I may not see the end of this movie.....it's likely the power will fail before I get to see how it turns out. I want something equally as grandeur (to dying young) to happen in the time I have left. But what? Strange thoughts, I know. Going to see MO today. Will see if tumor markers moving. I start Xeloda again tomorrow, so NOT excited about that. Hangin there everyone
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Well, I'm right there with you with the feelings expressed. I started back on chemo Monday after a holiday break and a break before that due to a toxic reaction. So I've really only had two chemo sessions since October & my labs reflect it!! Markers up again, highest ever (began with bone mets & now also have liver mets). Very scary, however, I have to say I felt good when off the chemo. Ate like a pig and had energy; was hard to return to it. I know it was only a matter of time before that reversed. Honestly, I could feel progression with pain in areas I haven't had in a long time, etc. Very grateful I could at least enjoy my family in from out of town and enjoy eating anything during that time. Now slipping back into my solitary slump, but that's how I live. Don't see a way out of managing side effects as a way of life. Also, losing my hair again. I had lots of regrowth while on taxol, not enough to go topless (still wigging it), but it was encouraging. Getting some slight signs of hand/foot again, on Adria - this month should tell if I can tolerate it. The Doxil did a huge number on me after only 2 infusions. If not, then on to something else.
I did a lot of reflecting while around family & friends during the holiday, & realized how much this disease keeps taking away. I'm definitely not the person I use to be. I'm very aloof & find it difficult to be happy. I'm grateful for the many blessings in my life, but not happy. I honestly don't think I can be happy again, strange. I also find it very difficult to make small talk with others, as I feel so removed from "normal" life. I watch & listen to others living their lives, but feel no part of it. All I can think of is why that would be difficult for me; for example, no energy or difficulty walking long distances, etc. In so many ways this is a living hell, with breaks every once in awhile. I apologize if I sound morbid, it's really not my intention. Just expressing what's been on my mind recently. As negative as I might sound, I want to stress I do realize the blessings in my life & how I could have it so much harder & I'm very grateful for those who have extended themselves & have stepped up. I have also let go of many "toxic" people in my life & have no regrets; this includes my birth family.
So, these are my thoughts for today & again, I apologize if I sound negative or if what I said upsets anyone.
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Hi Shutterbug73-thanks, how are you feeling on Herceptin and Perjeta? They are still keepg her on Abraxane. Hope it's no too much.
I wonder, do we still go for the other opinions? Now i feel kinda lost, because I know that the right protocol is the chemos she just started on, and they are all prob gonna say you need to give it time to work..., i think we are def gonna go to Sloan, and the others i don't know what to do.
Skylotus - what DOES the doc say, that the bone mets are not moving? what's the plan?
Pattypeppermint- keep up ur sense of humor, it does make things easier, i say very often, if i wouldn't be laughing i'd be crying. Did you follow the blog from "my big girl pants" , i used to, she was so sweet.
Romansma- too bad you find yourself in this funk. Hugs
Hey, where is Deanna, haven't heard from you, hope you doing ok
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Momallthetime - I'd definitely go to Sloan if at all possible. A second opinion never hurts and if nothing else, it may give you peace of mind that the protocols are correct.
Music, Srymom, Shutterbug, Patty, Romansma - geeze. I just want to give you all a huge hug. I'm so glad we have this forum where we can safely express what we feel, particularly to people who get it.
Sending good thoughts to everyone,
Terre
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SyrMom, You sound just like me but without all of the se's of chemo since I am only taking an AI. Living but not happy, that sums it up.
I think I wanted to be honest about my feelings with all of you for several reasons but one being that I was telling everyone that my TM's are down again and blah, blah, blah and I wanted to make certain that you have the full picture. I am glad about my results given the predicament that I am in but in no way will I ever be the happy person that I was in the past. Thank you all for your advice.
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momallthetime - I'm still getting the Taxotere too, and I hope most of my SEs are from that. There are a few days with each cycle that bring body aches and fatigue, but overall I feel pretty good most days. Fingers crossed that we will be dropping the Taxotere soon.
I had actually been feeling pretty good emotionally the past month or so (happy even?) and not thinking about cancer 24/7. That is why my New Year's sob fest took me by surprise. But I don't think we can grieve all at once, we have to do it a little at a time. I didn't try to push it away, I just went with it.
I sometimes have the irrational thought that if I get too happy about good news then I'm going to jinx it or something. It sounds crazy, I know. When we first found out that my treatment was working and the cancer was shrinking, the first thing I said to my husband was "but how long will that last?". He basically said this is the best news we could possibly get right now so just enjoy it. I'm trying to be better about living here in the present and not in the uncertain future.
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Well said, Shutterbug!
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Hello to all of you beautiful ladies. I can't tell you how happy I am to find you. I was diagnosed with Stage IIb lobular carcinoma in both breasts in January, 2006. After bilateral mastectomies, I declined chemo and took tamoxifen for 5.5 years. I then tried Femara, but went off after 6 months because it was literally making me crazy and physically miserable. I was never sick or had any pain from the cancer, and was shocked when it was discovered. My oncolologist has been checking me every 3-4 months, and the most recent development is that after all these years of nothing apparently going on, I now have bone mets. I found out a week ago, and it has been slowly sinking in what this means. I know I'm not going to die tomorrow, but I know I'm going to die sooner than I likely would have if not for this cancer. As it sinks in, I'm having a hard time wrapping my head around it. I have no pain, nothing to indicate there's anything wrong, so it feels very surreal. I'm sad, especially for my beloved partner, who is 16 years younger than I am, and who loves me very much. Now that same-sex marriage is legal in Wisconsin, we will marry soon -- were planning on it before this all came up. I'm strong and positive, and felt like I got off easy the first time, but this is throwing me for a loop. I need to be able to talk to someone sometimes without further burdening my partner, so this forum is a huge blessing for me. I am realistic, but also very optimistic and will fight hard to have as much good time as I can, but for the first time in my life, I'm having little panic attacks, especially when I'm alone, and I have trouble sleeping. I start Aromasin and Exgeva in a couple of days and not looking forward to it. It's hard to sign up for side effects when I have no pain or sickness right now. But I have been reading your posts and I feel like I have found my people. So thank you for being here to help me with the ups and downs that are coming.
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The tumor markers weren't back yet, darn. Got an early Xgeva shot. Needed some retail therapy before I start round 3 tomorrow, so I got some new shades
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Sharon8 - Sorry you had to join this club but welcome. I'm glad you found us. I was dx about 1 year ago with bone mets and these forums helped me so much. You will find a lot of information, knowledge, support and compassion here. Keep us posted.Hugs, Linda
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Romansma - Darn for those TNs! Your new avatar is beautiful.Linda
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Welcome Sharon. You will find a lot of commraderie and good advice here. Several of the women here are doing very well on anti-estrogen drugs, and I suspect you will too. The first months are the hardest. I suggest asking your doctor to prescribe something for anxiety, if you haven't already. I take the occasional Ativan when the anxiety keeps me from sleeping. It gets better over time, and it sounds like you have a good support system with your partner. I wish you the best as you begin treatment.
Nice shades Romansma! I need some like that for the blinding snow. The sun came out today and my Michigan eyes went into shock.All the best as you head into round 3!
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Love the shades Romansma!! You look fab!
Hope you will be wearing those for round #3. Shutterbug, I find myself not celebrating things like my TM's going down because I'm scared to jinx things too. Logically I know in my heart that it doesn't work that way, but I can't help it either.
Sharon8, sorry you have to be here at all but we all support each other thru thick & thin, good & bad. I've only been diagnosed with mets since May so I am just getting into the rhythm of things but it does get better.... eventually.
ML, hope you're feeling a bit better. We all have our good days & bad.
Sorry if I've missed anyone, hope everyone is having a good day! Cheers, Dee
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Great shades Romansma! Nothing like retail therapy.
Sharon8 - I'd just echo what the others said. I think it's about my two year anniversary of finding out that my hip pain was actually my dissolving femur. It does get better with time. And this is a great place to be for support. So, sorry you're on the roller coaster but glad you found us. And when you get married, we want pictures!
Hugs to all,
Terre
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Welcome, Sharon,
I, like many, had no pain and felt well at my initial dx. That's quite common. Six weeks after that, my bone met was found, again, no pain or symptoms. I had the met radiated, which rendered it necrotic. I have been on Arimidex and now Femara for over 3 1/2 years and have been NED the whole time. Yes, I have had some se's from the AI's, but it is manageable. I have been able to maintain a a fairly normal life. I look for happiness every day and continue to work, travel, enjoy family and friends etc. I don't know how long this will last, so I'm making the most of it. Yes, it can be tough at times, but this is what we deal with. Congrats on your upcoming marriage
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Thank you all so much for your warm welcome. It means so much to me to know you are here to share your experiences, encouragement and humor. I'm big into humor and love to laugh, so feel free to bring it on! Sometimes that's all that really works! Your compassion shines through. Thank you. I hope that in time I can share my successes and encouragement as well.
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Romansma, great picture, love your new shades. Praying your third cycle treats you well.
Sharon, welcome but sorry you have reason to be here. You will find a wealth of knowledge and understanding here. Congrats on your upcoming marriage.
Hugs to all, Annie
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Sharon - welcome. Glad you found us. It's a great place to share feelings that we don't want to burden our loved ones with. Bco has truly been my life line.
Romansma - rockin the shades. Love em. Thinking of you today on your tx.
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