Bone Mets Thread
Comments
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Denise, I'm so sorry about the situation you're in at the moment, but I am holding out hope that perhaps whatever that lesion is, it will not light up on a bone scan. I'm not sure what else it could be, but obviously when we've had bc, that becomes the number one suspicion. And I totally get your shock and dismay, especially since you had a Grade 1 tubular bc. As you may know, there are women with mbc whose original dx was DCIS -- supposedly non-invasive -- and although we can theorize all sorts of possibilities, it's often a total mystery why it happens.
I hope there's another explanation for that bone abnormality. Please keep us posted. Hugs, Deanna
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Gracie~ such a relief that your heart is healthy and strong, I know that was weighing on your mind. It is such a good thing to have read before I go to sleep, I will continue to keep all in my thoughts and prayers !!
~M~
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Gracie - I was thinking of you. Your heart is solid ... yay! Your mood upbeat! How do you feel?
Lulubee - I could use an update on you. Are you still on oxygen, or are you running about unfettered causing trouble? Sorry if you have already posted elsewhere ... so many threads and people ...
Deanna - Wondering how you are feeling ...
>Z<
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Okay, yes, I'm overdue to post a little update! Yes, Z, I was able to get off the oxygen mid-March, thankfully!
And then... I could breathe, finally, but I just could not seem to get back to where I was before. My face hurt, I had constant headaches, my nose was a raw, bloody mess 24/7. I just flat felt bad, all the time. And then my bladder began to burn and one morning I wiped pink, so I went straight to the clinic for a culture. What I thought would be a garden variety UTI turned out to be a rare superbug (klebsiella pneumoniae, more rare than MRSA) that I picked up in the hospital way back in January. Turns out it can be spread by oxygen equipment (which I was on for five days in the hospital) and usually affects only people who are immunocompromised (cancer patients and elderly and such). It usually goes to either the bladder or the lungs, and if it goes to the lungs there's about a 50% chance of dying from it. Glad it went to my bladder! Lord have mercy, how many bullets can one gal dodge??
So I was put on those whopper Levofloxacin antibiotics, and things began to turn around. I am still nursing my nostrils back to health-- six weeks on oxygen (with a superbug growing all up in there, and apparently all Down There also) really took a toll on my nasal passages.
I just had my 10th Taxol infusion. Latest echo a week ago showed ZERO pericardial effusion, finally. That took awhile to completely kick, but the Taxol finally prevailed. My lungs are completely healed, and boy howdy that was a slow recovery-- took about five Taxol infusions to knock out the fluid and the atelectasis. My tumor markers are stable, and the CT last month showed all my bazillion bone mets are stable, which is a miracle considering how many I have.
I am up to my ears getting my son graduated and finished with Eagle scout and his varsity baseball season, so I'm not posting much right now, but I am still here checking in every day or two. Also expecting grand baby #2 in less than a month!! Busy times. Glad to be alive, that's for sure. It's been a rough year so far!!!
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Yeah Gracie💃💃💃
Lulubee you are one fighter, thank you, you give me hope 😊 Just finished my first cycle.
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So do you have a week off now, Wendy?
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Wendy you sound good for finishing your first week of tx. Cheering you on
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There's so much great love here. It encourages me as I have MAJOR bone mets and multiple organ mets.
There is indeed hope for everyone.
Lumbar pain is a bit better now after nine rads treatments.
It's bought me some more time.
Don't give up hope.
L
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lita. Yes hope is alive glad to hear your pain is better. Yea !
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Lita~ clapping hands for the lessening of pain from the radiation! You deserve it. Please petSofia for me! You give everyone strength and hope Lita!!
Lulubee~ all I can say is wow! Thank goodness you made quick work of grtting that figured out. That is some serious stuff there. I am so pleased you're finally feeling better. It's scary that this was introduced to you, through equipment that you desperately needed. That really gives me pause about hospitals in general. Infection runs rampant there and it makes no sense! Glad you're ok!
Patty~ so nice to see you! Hope you're also feeling stronger each day! Power on ladies! Prayers to all ~M~
Wendy~ Nice to see you as well! I really hope that taxol will kick that cancer to the curb. You're a strong woman!! And always in my prayers.! ~M~
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so much going on with all of us!
Mic, thanks so much for your prayers and thoughts I really appreciate it! Hope this finds you feeling pretty good today!
Z, thank you! I feel so relieved I am about the same age my mother was when she had her first heart attack and so yes I was a little concerned. But now it's onward and up word and I'm going to getout and start kicking some rear in this walking thing 😁 I sure hope you're feeling better and that your pain levels are starting to go down. Who knew yoga and steam could be such a great combination!!!!
Lulubee, wow you have really been hit hard! I am so thankful for you also that that bug didn't go to your lungs and that you're on some medicine that can kick it now,and you can get hopefully healed up a little bit to get back to a little bit more normal life. Will be praying that intention for you that your body heals !
Wendy, so glad to see you posting and hoping that that Taxol is just doing the job and you're going to start seeing some results really soon. I think about you a lot on Taxol and I am praying for you!
Lita, big YAY on A little pain relief!!! What great news that is for this morning that just set my whole day into a really positive mindset!!!! Great big hugs for you!
Patty, so glad to see you posting! I think of you so often and worry about how you're doing! I hope you are finally getting a little bit better, and are getting better news on your health overall. Gentle hugs!!!
You have all been such a huge blessing in my life, I don't think you'll ever realize how much it has meant to know that you are all here to listen to me when I'm down or to hold my hand when I'm scared, or to offer huge signs of support when I get good news! You are all incredibly amazing women, and I am so blessed to have found you!!!!!
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Yes had my third infusion on Monday and I'm bleeding out of every part of my body. Not fun also today the hair comes off so had it with touching my head and coming away with a handful,of long hair. Have a bit more energy but it comes in waves.
My daughter is currently visiting from university helping out and we went for a walk yesterday I felt good I felt pretty strong. Then I didn't and I had to sit down like an old grandma on a bench for twenty minutes. I want my body to handle this better and it's very frustrating when I can't even make it up a hill or a flight of stairs. Forcing myself to eat more when you get excited about gaining .4 of a pound because you didn't throw up your dinner that's a new low.
I hate to be such a whiner I know many of you are going through so much more and maybe this is just the build up so I can handle that later better. But it fucking sucks ass. My life as I've known it is gone and I don't know where to find Wendy anymore..
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Lita I'm so happy for you thank goodness eh? We need to grab onto on the good days and may there be many more ahead.
Sorry Lulubee I'm a dork you have been through the wringer and here I go on bitchy up a storm. You give so many woman hope and your strength is a beacon to us all. I'm so glad that you are coming out now on the other side to better days
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Oh my goodness Wendy - you are not a dork and you are not whining. You are going through so much with tremendous courage and good humor to boot!! We all want to hear how you are doing and be here to support you when things get tough and cheer you on through triumphs! Sending love and hugs!
Cathy
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wendy~ honey my heart really breaks for you because I had long hair also. It killed me. I know exactly how you're feeling. I know it does effing suck. I realize you are lost in this supposed new normal. Well none of it seems normal at all. I know how you feel when your mind says one thing and your body won't follow through with what your mind says it thinks it can do. You're not alone. I cry everyday when I look in the mirror wondering why? And where did I lose my old self. Unfortunately I never get the answers I want. I walk around with one boob and have got heat flashes that would melt plastic. I would give anything for us all to have one medicine to take And be told you're fine. It's cured. Go live you're life. I'm ready to scan next week and I am a nervous wreck with anxiety and panic feelings. One day at a time, and one cry at a time, and vent when the anger gets the best of you. I had abraxane and it was viscous, you aren't whining, it blows out the as*! You're allowed to be mad, I am out now one year and three months diagnosed and I still wake up thinking what the fuc* happened to me?? I know I can't take away your pain, but I promise you, I understand the loss and sorrow youre feeling and you're by no means alone. I am keeping you close in prayer always. All of you. ~M~. Gentle hugs.
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Lulubee, so glad that you have that infection under control. That's a scary thing. I know. I am sitting here in KD's hospital room as she is recovering from Sepsis that started with Thrush in her mouth and throat. What we thought was a couple of "mouth sores" blew up fast. But, they have it turned around and she's on the mend now.
Lita, LESS PAIN!!! Time for a glass of wine. 🍷 That is great news.
Patty, it's wonderful to "see" you more and more now. So many of us were so worried about you. I hope that you keep getting better and better.
Wendy, first off how do you have a daughter at university? Did you marry an older guy who already has kids?
Vent away girl. You would tell any of the ladies (or husbands) here the same, wouldn't you? I think you are going to find your rhythm with this Taxol soon. KD found that she just had to hunker down on Days 3 & 4 after her Taxol infusions. She usually got hers on Monday, so she knew Wednesday afternoon and all day Thursday would be her worst days. You are going to power through this.
Hugs to all,
Louis
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Wendy, you just vent away. When I got radiation to my face and neck, I started vomiting a week in and could hold nothing down. For my treatment, they would have to get me out of the restroom, give me fluids and meds, then they could treat me. I would lay on the bathroom floor, in the fetal position and when I wasn't vomiting, I was crying and begging for someone to make it stop.
Hopefully your body will adapt soon.
Lisa, 🙌 for the pain relief! It should get better everyday. Can't wait for my ten to be over with. I went to yoga last night and it was hard to do deep breathing when I felt like vomiting, but I stuck it out. So Zofran has helped, but if bowels don't get moving by tomorrow, I will have to go off. Oh well.
Luulubee, happy you are finding your way back.
Luis, also glad you're wife is getting better
Hugs
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Wendy, Don't worry about telling us how you feel. We all understand. It is hard to deal with anything when you feel lousy, tired, sick, and overwhelmed. It is especially hard to deal with anything as big as you are going through right now. This is not easy for you. You feel horrible, you are losing your beautiful hair, you don't know what is coming next, you are scared. Who wouldn't need to vent? We know you are not whining. None of us here compares one person's suffering to another's or judges whether or not someone is complaining too much. You deserve to say whatever you want. You know we understand and will accept anything from you. We all share the misery of this disease, and I believe that everyone here will join me in saying that we are here to support you without question and without limits. That is just what we do for each other.
Love, hugs, and prayers, Lynne
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Wendy, you just vent as much as you want, I would be doing the same going through what you are! I wish there were something I could do to make you feel better! Cancer sucks!!!!
Louis, oh my gosh!!!! Glad she's a little better, will be thinking of you two
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Well said 50sgirl!
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Wendy, if you're a dork, I'm a dork right there with you. This is where we all "go on bitchy up a storm," as you put it (LOL, I love that). Thank goodness this thread is not a competition for whose life sucks the most from day to day, cuz who would hang around to win THAT?? Not I, said the Lulu.
So, sweetheart, you are losing your hair today. {{{{{Wendy}}}}} I will sit with you in respect for the moment and the passage and the pain. This day, too, will pass. And tomorrow you will wake up and feel the fresh shock of it all over again for a moment, but you will still be Wendy, dang it, and you will still be beautiful and alive and beloved. The day in February that my lovely mane went in the trash was one of the hardest days of my life. Do I feel like a plucked chicken? Uhh, yeah. But I am managing, a little at a time, to let the shame and embarrassment fall away from me, and I am discovering that I can still get dressed and go somewhere and have a good time. So will you, friend. Little steps can make a tango if you just keep shaking ya hiney, honey.
I have hit rock bottom so many times in the past ten years of living with this awful disease, and a few times I have been in such wretched physical and emotional state that I have looked hard in the mirror and asked if it was still worthwhile to keep trying to hold back these blasted gremlins. Honestly, there have been a couple of times when, if my life was just for me, the answer would have been no... "come on, sweet Jesus and release me from this broken body already, I'm SO done with it"... but then I think of everyone I love and how I still enjoy them all, and so far all that wild love has never failed me-- I want more time for it. Even if I have to get over some towering aches and pains for it. So on we go, bald and bleeding and popping pills, all for love.
I think I said all that to say this... as a long-time metster, I've been through enough of those rock-bottom downers at this point, only to rebound and find that I can actually regain my joy and lay firm hold on my will to live, one more time. I've almost died a few times when things have gotten really bad, only to get patched back together and recover enough to have good days again. And I think by now I simply don't expect the bad times to outlast me. The pendulum swings, we have good days and bad and good again. I have enough experience with this rollercoaster now that I can say, well maybe my time has come but then again maybe this is just another nasty stretch of the road and maybe I'll be better a little farther along if I can just hold on a bit longer. And so far, that has been the case. Someday it won't be. But for now, I'll take my chances and hold on for the next patch of something better.
I hope you feel better tomorrow, Wendy. If not, come on back here and go on bitchy up a storm again.
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wendy my heart goes out to you. If you look all of our first post up I am sure they are similiar to yours. We have to get through the understanding and denial and grievance. Stick around and you will get support and helpful tips
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Lulubee - that was a beautiful post! Thank you.
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Lulubee, wow you said it perfectly!
Wendy, hang in there.
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Ottawa,
Sorry you find yourself here but this is a place of hope. These wonderful people are very knowledgeable and supportive. Please know we are here to support each other through the good and the bad.
Sending hugs,
Ronnie
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Lulubee, you have a way with words! God bless you, I think you helped all of us with what you wrote.
Wendy, sending you love and hugs. You've got this and we're all here for you.
Hugs to all, Annie
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Wendy, hugs to you my friend. Lean on us and we will hold you up in spirit. Lulubee, beautiful words, calming and healing for all.
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Wendy- let her rip darlin'....I forget if this is your first experience with "traditional" chemo, but it is a bear, and one does feel like crap on certain days. There is that "grace period" for a few days after the infusion. After that man, I was hard down for at least two days. I had trouble wanting to eat anything until about week before the next damn infusion. So yeah, it really stinks. You just say whatever you need to, we are here.
Lulubee-you are the best!
Lita- SOOOO happy to hear you are getting some relief!
Louis-Yay! She is doing much, much better!
Love to all my MBC sisters, may the force be with... MJH
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Thank you so much all feeling restored once again the hair is gone or very short so it will be a getting used to in two phases. I love all you guys Lulubee ❤️❤️❤️❤️❤️❤️It is what it is and you are right Lulubee we do it for the people we love. I am so overwhelmed with the kindness of everyone. From you ladies to my team mates on the boat who bring me soup or wheatgrass juice. Love is everywhere. Here is a pic of Wendy now the new Wendy the fighting Wendy😊
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Wendy, you rock the short hair look. Now, just add that beautiful smile of yours. 😁
Lulu, what a wonderful way for me to end an extremely exhausting day. Now, I am filled with the anticipation of getting up early and driving to the hospital to read your post to my princess. You are absolutely right. It's ALL about love.
Praying for all of you strong women (and men).
BTW, I read a great quote this morning that applies here.
"Intercessory Prayer is like loving our neighbor on our knees." - Charles Brent
If that is the case, there are lots of people in our lives that need to invest in a good pair of knee pads. LOL
Sleep well Ladies
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