Bone Mets Thread
Comments
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There is absolutely no shame in using a handicapped placard. Your doctor wouldn't urge you to get one if they didn't truly believe you needed it.
None of us answer to some ill informed or judgmental individuals who have never walked in our shoes. So I would strongly encourage you to
NEVER let anyone make you feel bad about getting some extra help in the form of a parking placard. Okay, I'm done now.
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Iwrite- funny story! Crazy stuff happening here in Colorado. I am using THC-CBD drops daily. As well as a CBD cream and some smoke. It really helps me! I wish that it were medically legal everywhere. I feel so many of you lovely ladies would benefit from this natural treatment.
Lynn- please feel free to post all your worries here! We are here to support each other.
Annie- so glad your over the hump!
I use a handicapped placard, I have zero guilt or embarrassment. My grandfather is 96 and I care for him. It is very useful when it comes to the snow and ice. Also nice to have a larger space, where you can feel safe in the fact your doors won't get dented from other careless people opening their doors. Love and hugs to everyone, Chelle.
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Thinking of you Patti, prayers for feeling better soon.Marilyn
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May I just jump in here? Seems a little... I don't know... presumptuous or something to just pop back in here and start yakking without saying hello again. I am a longtime veteran of these boards, going back to 2007. But I have been scarce around here for a while-- had to take a break from the boards after saying goodbye to so many close friends here in a short span of time a couple of years ago, which any old-timers here will surely understand.
I've been scanning the thread this week and you all are just lovely and so kind and supportive. I'm proud of you. Truly.
Anyway. Just wanted to pop in and say that I totally rock the permanent princess plates on my car. You gals just need to tell yourselves "I am the Princess of Every Parking Lot!" as you whip into those prime spots. ("I say whip it, whip it good!" LOL!) Seriously, I don't even bother wondering if anyone is looking. If the judgey judgersons out there had lesions in practically every bone of their bodies, they would want my Princess Plates, too. After going on nine years of navigating breast cancer, it takes a whole lot more than a handicap placard to make me hand over even a sliver of my happiness!
And I also wanted to cheer on the sweet sister with the one bone met that is gnawing on her joy. (SO sorry I don't know all your names, and the name I need is back on another screen now, so please forgive me.) SO. You tell that little spot to get outta your way, okay? Your glorious mind is still way up there above that dumb little pin dot, and your mind has sparkly magical powers. You're going to be fine.
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lulubee!!! Love your attitude, which must be why we have the pleasure to hear from you again.
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Chelle, thank you and how are you doing?
Lulubee, thank you for gracing us with your presence! I loved your post and what you said about the judgey judgersons, because it happened to me yesterday. A woman was actually glaring at me, my youngest dd wanted to go and ream her out. She said mom if this woman only knew you've had MS for 16 years and never got a handicap permit and now you have metastatic breast cancer! She was furious and I had to restrain her but this woman judged me by my looks and the fact that I'm young. So from now on I'm going to rock my Princess Plates!
Heidihill, love hearing from you, you've always inspired me and I love reading your posts.
This is just such an incredible group, Deanna just said it but my God it can't be said enough. You ladies rock and I love you all!
Hugs to all, Annie
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Annie, I think we've all stared or glared at ppl who park in handicapped parking spaces and then proceed to hop out of their cars and dash into a store. I've done it, before I realized that you don't have to be in a wheelchair to feel like crap and not have the strength to walk across a parking lot. Sure, some may be abusing the situation, but I think if someone glared at me the way they did you yesterday, I would have approached them and shared my dx, or in your case dx(s). It sounds like she needed to be enlightened.
And lulubee, your take on the princess plates is priceless! Thank you so much for sharing it! I will never look at handicap plates or placards in the same way again!
3-16, Thanksgiving in Montana sounds heavenly And I totally get it about your cousin's reaction. I've had something similar happen recently when an old high school friend saw some of my October FB posts about mbc and the need for research and contacted my sister to ask about my health. She then proceeded to share the "news" with a lot of people, mostly high school classmates, who have been sending me all sorts of lovely cards, including a few that sound like I'm literally on my deathbed, which, thank goodness, isn't the case. I can smile and joke with my family about it, but I also see the forced smiles and unsure looks on their faces when I do. I guess these encounters are good lessons in how to deal with others in our situation. For example, I love the cards that talk about a childhood memory, vs. the ones that use words like "comfort," "peace," and "struggles." Oh, well, I guess it's just one more way we need to continue to educate ppl about Stage IV bc. And I don't think it's denial as much as it is their lack of understanding that we can have a good QOL hopefully for many years with this disease, plus the hope that within that time, more advances will be made.
Editing to add... Impossible for me to address everyone by name at the moment, but 50s girl, you and your DH have been on my mind and heart since I read your post yesterday. I can only imagine how scary this is for you both, and I hope and pray his 2nd & 3rd opinion docs will have some good news and that he will find top notch care and have an excellent outcome. (((Hugs)))
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Lynne, please don't hesitate to post about DH, it's relevant bc it's relevant to you! I am so sorry about the diagnosis but glad to hear it hasn't spread. Please don't stop sharing if it's something that makes you feel better!
I have a new pain. I reached up to get coffee, not too far at all, not a big stretch at all, and I felt a new pain on both sides of my back, on the ribs, mid back, is the best way to describe it. It's a dull ache now and I've taken so many pain meds that I feel so sluggish and gross. I'm at work. Everyone, please say a small prayer for me, or a thought for me, I really need things to turn around for me, even if just for a bit, I need to hang in there.
One more thing, I had asked on Facebook for a good recommendation for my DH just to cope with my breast cancer and for him to get more support. Does anyone have any books that have been helpful to them or for their spouses? I want to do something for his birthday to acknowledge that I know he doesn't have it easy, but lately, he's not making it easy for me. Last night he told me "the least I could do" is put a diaper on my son since DH puts him down every night and comforts him every night. Somehow, that rubbed me the wrong way. He is doing a lot, bc I am ill and I'm in pain. He may even have to do ALL OF IT. I just wish he would do all of it without so much bitching and moaning about his feelings, and about how tired he is, and about how HE doesn't feel well. He's truly a child. This is when I fantasize about running away.
I am so glad I have you ladies here for support. One day I won't be so selfish and I will be able to give more!
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Hi all,
It continues to pour here. I went for my CT scan yesterday and fell into anaphylactic shock from iodine. I've had iodine before but did not agree with me yesterday. Had 3 shots of epinephrine in scan room at 5 minutes interval, could not breathe, I thought I would not make it. The Doc was asking me to talk to him and open my eyes, I could hear him but everything was so swollen in my throat that no sound would come out. At some point I heard the "Code Blue" on the PA system and realized it was for me. Never had so many people around me, they took me too ER trauma area for a few hours and then a cubicle in ER for 24 hours total. Got IV Benadryl and cortisone, my face is still a bit swollen. Having so much epinephrine is hard on the heart, heart enzymes were high but it seems as if it's the shock of the med and allergy. I had a rash on my arm on Saturday, turns out it's shingles! Can't get better than that. I got the vaccine a couple of months ago, anyway they started to tx in the hospital, I was still within the time frame. And they lost my cane in transit to ER! Have to go back to hospital tonight at 7:00 pm for bone scan, OH joy. I'm totally exhausted.
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LindaE, WHAT THE HECK?... How terrifying for you. I am so thankful that you are recovering. I just don't know what to say. I want to come give you a huge hug and make you feel safe.
Lynne
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oh, and the shingles and cane on top of everything else.......UGH! I hope Only good things happen to you from this moment on!
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Hello All-I have been so fortunate to have found this site. Everyone has been so helpful and supportive. As you can see I was diagnosed Stage IV September, 2015 mets to rib, sternum, spine. I have had three rounds of T/H/P. Bone scan was done Nov 30th which showed some progression. My MO called to tell me he will be starting a new med, Kadcyla. My TM during this treatment had improved from 164 to 25. So I was not expecting any progression. My pain level has been very manageable with occasional ibuprofen. Has anyone been on this med? Not sure of SE. Thanks in advance for any advice.
Wanda
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Ohmygosh, Linda! How terrifying! I'm so glad you're okay! That's crazy that you had that sort of reaction out of the blue. I wonder what went wrong this time?
Welcome, Wanda. Glad you've found us. My first thought reading your situation is, could the radiologist possibly have mistaken healing for progression, especially since you've had such an astounding drop in your TMs? And just fyi, in some instances, progression and healing in the bones can look very similar on a scan, and it takes a knowledgeable onc to evaluate everything that's going on with you, such as TMs and pain level, and make a judgment call -- even if that means overriding what a radiologist thinks he or she sees. Just a thought...
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lindae. - oh my house scary code blue wow. Was your sister there with you? And they lost your cane. What are you using to walk now? Are they going to replace it? And now shingles ? You deserve a break. Hope tonights scan goes a lot easier. Virtual hugs.
Lynne - how is dh today ?
Cristina. You are not selfish. I am praying right now for you. And yes dh rubs me the wrong way too. When he has to do chores. He doesn't complain a lot but I feel the guilt of him working and coming home and taking care of the house too. I try to do all I can. But I'm not going to wipe myself out doing housework that can wait. I'd rather spend my time with the boys. Dh is a total clean freak. I used to be. But priorities have changed.
I I'm staying another night at the hospital.wbc has decreased not increased so more antibiotics also vomited 6 times last night . Boo. Dss going to be so very upset. They worry I will not come home from the hospital. I tried to tell them that we are not in that situation yet. But it's hard for them to believe when they see me so sick. I try to fake it. Don't we all? But some things you just can't fake. So dreading telling them. They will be home from school in about 30 minutes and they will call. Don't want to tell them. Hubby was at work when I texted him. And text me back oh great just perfect. that ds1 it's going to be very upset .wth??? I can't help it and making me feel guilty helps no one. I don't think that was his intention but he needs to choose words more wisely0 -
Lulu bee you rock! Love your attitude princess plates so funny that's exactly how I feel about it I could give two hoots what anyone else thinks. If they have a problem they should speak to me I would give them a nice ear full.
Linda OMG okay bad things happen in threes you are so done now. Boyfriend , dog and now this you are in for some good times now. Your scan will show no,progression only NED I'm hoping for this for you.
Cjanet it's very sweet of you to help your hubby with a gift I wish I knew of some good ones... It's hard enough with little children without this added crap. Hopefully a move in the new year to sunnier climes will be just what your family needs. Shaking things up is sometimes a great idea. You are not selfish.
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Hi Everyone,
Wanda, I am sorry to hear of your progression. I am on THP. My Dr. doesn't take tumor markers. She said they r unreliable. I hope ur new line on treatment is more successful.
Linda, omg, I just want to bring u dinner and take care of u. Something good needs to happen to you I'm hoping it's great scans.
Cristina, most of my close friends are therapists so I will ask them what they recommend. My one friend is a caregiver and therapist so I'm sure she will have some really good ideas.
Lynne, please share about your husband. I think about u but don't want to pry.
Lulubee, u r a gem. Welcome back. Hope u stick around.
Patty, I think I read u r in the hospital but feeling better but I have chemo brain and can't remember what I read. Ha ha. I hope u r feeling better.
Terre, I thought of u today when my fitbit told me I have walked the length of New Zealand. I thought oh wow, Terre would be proud of me. Ha ha Hope all is well with the new house.
So im currently getting chemo. My red blood cells dipped. Does anyone know anything about maintaining red blood cell count?
Hello to everyone else...Wendy, Chelle, Myra, Annie, Dune. Hugs to everyone.
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Linda, OMG, all these things that have happened are so unfair! I hope you are feeling better now. Shingles on top of it all? Praying for a good scan and all this won't matter. Hugs.
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Christina, I will say a prayer for you. I know how upset I get too when I feel a new pain. I ache all over today-- maybe it's the weather or you moved and pulled a muscle. My one rib in the area you described has been that way since early August, never gets better never gets worse and heating pad helps it. My ribs do have mets so I am sure they cause inflammation.
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Lindae, my heart hurts for everything you are going through. My goodness I can't stand so many horrible things happening to one of the nicest on these boards. I wish we were closer.
Lulubee, I just started on Xeloda today. Any hints would be appreciated
Lynne my best to you and hubby. Gosh, so much ugliness going around!!
Hugs all around, get in tight, squeeze each other and ask for health, love and better times ahead. Myra.
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Cristina, you might check out this book... http://www.breastcancerhusband.com/ It's highly recommended by psychologists. I'm just not sure if it deals with mbc, or just early stage bc. Maybe someone else knows.
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LindaE oh dear!! that is just insane!!!! how are you handling? Do you have someone to help you out? who is giving you physical support? Fingers crossed for the next scan. Maybe they could be nice enough and give you a cane till you get your own? AGH, hugs hugs hugs and much kisses.
Wanda wow that is really weird with TM's coming down so, and then progression - really weird. These are suppose to be terrific tx. Kadcyla was approved only about a yr ago. Good luck.
Deanna as usual you are right on target. Seriously, we have no patience to explain to ppl. We just don't bother telling them. Heaven forbid my girl would get any of these cards, she would vomit, no kidding. Change ur addres
that is exactly what I am always hoping for, she should be able to be well till they find the NEXT good thing. And then keep going....How are you doing?Annie -Princess plates like Lulubee said, it rocks!!
Mary - Montana, what a dream. Happy for you.
Just to update, spoke to Onco, stay the course he says, let's give it more time, he did upped the dosage again...he feels it will turn around, and so it goes...
Nice to hear from the experienced ones, welcome everyone
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Hello All!
Linda, so scary for you, I hope you're ok now? Ok, so that is the 3rd thing, we're done now, right?! Oh right, shingles too. You can't catch a break these days.
Patty, Do they have any idea what is causing all your digestive problems? Is it an infection of some kind that you just can't shake. Anyway, I hope you get out of there soon.
Mom A.T.T. - I hope he's right, that this will turn it around.
Wanda, This happened to me just in Sept. I was sure I was stable but the onc said no, it's progression.... however, it turned out that they cannot tell the difference between bone healing & progression for some time, about 3 months. Annie & Linda both told me this, but it's hard to believe when the MO tell you otherwise. Sounds to me like they might have done the scan too soon, this was confirmed in my case by the RO. Welcome BTW.
Hi to everyone else. It's a cold, wet day here, so I'm going to go volunteer at the little bookshop for a while. BBL, Cheers, Dee
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Wanda, Welcome to the bone mets thread. You will find lots of help and support here. I have never been on Kadcyla, but I am sure someone here will Be able to answer your question. I agree with Deanna. It seems odd that your tumor makers are down so much if you have progression. My onc does believe that tm's are a good test for me, but I know they are not accurate for everyone. I am sorry that you are seeing progression. Is the progression that was found new mets or progression to previously existing mets? I hope your new tx destroys those nasty mets.
Patty, I am sorry that you are spending another night in the hospital. I know it is no fun, but it is important that you regain some of your strength. My grandson is in fifth grade. He had to learn the capitals of the ten northeastern states the other night. They. Are working on ten more now. Once they have learned all 50, they will have the final test on the unit - filling in the names of the states and their capitals on a map of the U.S. I have to admit that I have forgotten some of those darn capitals.
Cristina, I will say a prayer for you, and I hope you feel better soon. You have had such a rough time lately. MBC is ugly and indiscriminately spreads its pain, both physical and emotionally, on all of us as well as our families. I wish I could make this horrible disease go away and make everything better for you, but I know I can't. For now, all I can do is hope and pray and reach out to everyone here for support.
Lulubee, Welcome back. I hope you stick around for a while. I will enjoy hearing from you.
Txmom, I hope your red count comes back up soon.
I had an appt with breast surgeon today. I see her every few months so she can keep an eye on me. She started talking about a discussion we had previously about maybe removing my primary tumor. I broke down in tears and told her I couldn't even think about doing anything right now because I have to give all my attention and strength to my DH and I told her about what he is going through. I did NOT want to do that and was upset with myself. I felt so bad for her. She handled it like a champ and said she was going to ask me questions about me and exam me and that she was also going to pull me away from the conversation about my DH. Once the exam was over, she told me to get dressed and left the room. When she came back, she asked questions about dh's situation and just got me to open up calmly. She was just what I needed. I am not sure she would say the same thing about me. I am a mess. Lol. The goods news - the primary tumor that was raised 5 x 4 cm mass in June is now just a 2 cm flattened mass.
Linda, I hope your bone scan was uneventful. You need to get some rest.
This thread is indeed includes of many special, wonderful people. Thank you all for your help and support. You are always inmy thoughts and prayers.
Lynne
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Linda, oh my goodness, I can't believe what you've been through. I was in a panic reading your post. How are you feeling this evening? Shingles on top of everything else, seriously that is enough. Your scan results are going to be good, you must get some good news now. I wish I could give you a (((hug))).
Txmom, praying your red counts come up very quickly. I'm not sure what you can do to maintain them but I would imagine there has to be something.
Cristina, praying for you af sending you virtual hugs.
Momallthetime, praying things turn around in a positive direction for Dani real soon.
Lynne, it's ok that you broke down, you have alot on your plate right now. Praying for both you and dh, sending healing hugs and positive thoughts.
Patty, I don't think dh meant it that way but that sure came out wrong. You have no control over this and the last thing you want is to be in the hospital. Hugs to you and prayers for a speedy recovery.
I hope I didn't miss anyone. Sending hugs to all, Annie
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LindE,
Oy vey! You've had more than your share of challenges. I hope that you are feeling better and nice long break from trying times
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Today when I was doing books at the store, I came across a book of sayings, not my usual thing, but for some reason I picked it up & looked through it. This jumped out at me, especially the last four words.
"In spite of illness, in spite even of the archenemy sorrow, one can remain alive long past the usual date of disintegration if one is unafraid of change, insatiable in intellectual curiosity, interested in big things, and happy in small ways."
I forgot to say to Lynne, that I'm sorry you're having to deal with your DH as well as yourself. I hope your tumor continues it's shrinkage.
Take care, cheers, Dee
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Txmom I have been drinking morning and night a glass of Chaga tea. You can pick it up in a health food store it's known for building white blood cell counts. I like it because it's natural.
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Txmom sorry meant red
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Had to share this from a FB mbc sista! Too funny...
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deanna. Too funny. Needed a laugh thanks for sharing
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