Bone Mets Thread
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http://www.heraldsun.com.au/news/victoria/melbourne-scientists-behind-worldfirst-cancer-drug-breakthrough/news-story/be5fb879847315cb2e5a5c8803333e5c?nk=4fa74d46cd5fef95c874d1474a10ed15-1486549832 A very exciting breakthrough in mine met breast cancer at our cancer centre here in Melbourne. Hope you can open link
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So the holiday is over I now have liver mets too. One cm in the liver freaking out big time . My son who is 18 can't stop crying and it's breaking my heart.
Wendy
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Oh, Wendy, I'm so sorry! Is there a chance they can blast (ablate) that one tiny met? Damn! It breaks my heart to hear about your son's reaction, but hopefully you'll be right back on top of things with whatever tx your onc has in mind for you.
And Patti, you have been on my mind and in my heart a lot this week. I know you are at peace with your decision, but it's very hard for me to process, especially since I feel like we have just gotten to know you here, and even in that short time you have still had some very good days. I'm hoping that God or the universe or whatever your higher power might be will continue to guide and comfort you.
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Aw Wendy, I'm sorry. Damn. Breaks my heart too.
Looks like the holiday is over for me too. Two new bone mets on sternum, two axillary lymph nodes met and several new nodules on both lungs, two of which are probably mets.
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(((Linda))) Now I'm doubly bummed. Sigh...
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Wendy - GRrrrrr. That wasn't what you were supposed to come back to. Local treatment of that single met, as Deanna suggests, should be on your list of things to research. It's just a wee little met ready to take it in the gills from modern medicine. They do have local treatment of liver mets figured out. See BestBird's guide for a tour of the options.
Linda - That's not the news we wanted from you either. GRrrrr.
Joining you both in a virtual cup of tea as the news sinks in. Lot's of solutions and possible next steps, but first there is the fact that this s2@#ks. One would like to be free from thinking about this for a good long time.
>Z<
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Wendy and Linda, Damn is right. I'm so sorry to hear of your progressions. I truly hate this disease. Now to get a new plan in place and keep fighting.
We are here for you.
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Wendy, I am so sorry to hear that you have a liver met. I can imagine how you feel. When my liver mets were discovered last July, I felt like I had crossed an imaginary line from bone-only mets, where I felt a certain amount of safety, to bone and liver mets, where I felt that things would quickly go downhill. Well, here I am in February still feeling great. My 3 liver mets had become less noticeable on scans in December, so I have chosen to ignore them although I am obviously still having treatment. Do you know what your treatment plan will be? As Deanna suggested, they can sometimes blast a solitary liver met. If that is not the direction that can be taken, there are other treatments that can knock that tiny beast to the curb.
Linda, I am also sorry to hear of your new mets. Have you discussed a new treatment plan with your MO? Are you scheduled to have additional testing to confirm that the lung nodules are mets? This disease is so unpredictable. It seems like we can never let our guard down because we get sucker-punched with progression. I know that you have a wonderful vacation planned for next month, and I do hope that this development does not interfere with your plans.
You are both in my prayers and in my thoughts.I hope your new treatments keep you progression-free for a long, long time.
Big ((hugs)) from, Lynne
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Lynn, I picked up the report today and I haven't spoken to my MO yet. I could go on and on about the waiting here but I will spare you all. Let's just say I'm anxiously waiting to hear from MO. This may be my last trip and I will go rain or shine.
Any of you gals on this thread have lung mets? May I ask how they were dx'd and symptoms, if any?
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Sorry to hear about the progression, ladies. I was dx'd with bone, liver, pancreas, and kidney mets de novo last April. I've been on Xeloda for 9 mos.; MO still says I have options when X stops working.
I know that's not very encouraging for your progression, but it's something to think about. I'm not giving up yet even with all the pain I'm in from compression fractures all up and down my spine and some newer abdominal issues related to organ mets.
We're here to support you and lift you both up, no matter what.
My next PET scan is Monday. I hope I'm still stable, but because of my growing fatigue and increasing pain, I just don't know.
Praying for all of us.
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Praying for all you ladies dealing with progression or pain. I just hate that any of us have to deal with this. I had a pap last week and my Drs office called and it was irregular so they want me to do a biopsy. I'm on ibrance/letrozole/gedatolisib and xgeva. They said it could be inflammation from a virus or lots of things. I'm trying not to worry, it's hard. I'm new to mbc so I'm hoping it's not more progression. I read it's not common to metastasize there. Anyway I have been a mess today so I don't know how you ladies handle it so well. It just sucks!!
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Linda I'm so sorry that sucks, why can't they figure this bloody disease out for crying out loud. Is it really the money aspect only. So the pharmaceutical company said at the beginning of the trail that if I was on placebo I would be eligible for the real drugs once I left the study. So they changed their minds no drugs for Wendy, makes me so mad.
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Wendy and Linda so sorry to hear if your progression! Once the "dust settles" and you have a plan in place you'll feel less anxiety Boy do I hate BC!
Bab
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Babs - Just thinking about you today. How are you?
Lita - Fingers crossed for the worlds most boring scan results for you. We certainly have enough going on on this thread already.
Wendy - Does your hospital have an ethics committee?
You went through all this trouble, knowing that a placebo was possible. In fact you got the placebo and likely progressed as a result. Part of the reason for doing this despite all the unknowns was that you would eventually get access to a drug that you need, one way or another. This is Wrong with a capital W. Not a small thing to brush off, not a little misunderstanding.
Conflict and drama is not what you need right now. You just need them to do the right thing. But Ibrance is the obvious next step. Lawyer? I want to see you on Ibrance.
>Z<
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Hello everyone, I've been away for a while because the thread fell off my favorites. I see from the last entries that Patti is on the path to transition next Saturday. I haven't met you Patti or know much about you but I am sending you hugs and prayers for peace as you go on your way to rest in His arms. May God bless you.
Summary of the last of my situation: Last October I was started on Xeloda but I rapidly developed raging hand and foot disease, it really was bad. My skin was raw, my feet were peeling and burning so was my left hand. I saw my onco and told her I was discontinuing the Xeloda. I also inform her at the time that I would be moving to Naples Florida ( I was in Orlando at the time). She agreed to let the Naples oncologist make the next plan. That was in December. Unfortunately due to insurance issues I couldn't see the new onco until last Friday. Monday I had a CT scan and tomorrow I was supposed to start Abraxane which had worked for me in the past. I'm on Medicare and my clinic in Orlando always got me help to cover the 20% that Medicare doesn't cover. The clinic here in Naples couldn't find me the help. My appointment is tomorrow at 8:30 am but if I show up for the infusion I am expected to fork $500 which I certainly don't have. I got the call from the financial adviser at 4pm so I wasn't able to ring up many places requesting assistance.
I'm wondering if anyone here knows of an agency that may be able to help me pay for the copay for chemotherapy. Specifically for Abraxane. I realize it will be too late for tomorrow but perhaps if I can get it worked out tomorrow I can get in the infusion room on Monday. Please let me know. I think I will start a new thread to see if anyone knows.
Thank you
Aurora
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Hi, Aurora! I would start with the drug manufacturer. Here's a link:
Looks like they have a financial assistance resource link right on that main page:
http://www.abraxane.com/mpac/financial-support-and...
And here's another resource searchable by zip code I just pulled up for you: http://www.cancerfac.org/
Good luck! I'll pray that your infusion goes smoothly and that your new cancer center will work with you and not make the financial part an added stressor.
(((Hugs)))
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Thank Deanna. I had already check the Abraxane.com websited and submitted an application. and the CDF-Chronic Disease Fund is out of funds for breast cancer. I will check the other ones tomorrow. Thank you.
Aurora
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Lita - Yes, as Z says, wishing you a very boring scan.
Wendy - that's absolutely unfair. Do you have anything written to that effect in the clinical study consent forms?
Apg - it's happened to me in my "younger days" and turned out to be nothing. I don't think you need to worry.
Aurora - welcome back. Hope everything falls into place for you, soon. Deanna, you're a wealth of information.
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Aurora, I am sorry that Xeloda didn't work out for you. It is terrible that you now have the added stress of having to pay a high copay for your new treatment. I hope that you are able to find some assistance soon. Will your oncologist's office continue to look for funds even though they were not successful when they first tried? Sometimes funds get freed up. It is a terrible that people are unable to get the medications they need because they are too expensive. I could go into a long rant about the cost of prescription medications and the impact it has on so many of us who have serious medical conditions, but I know I would be preaching to the choir. Do you know how long it will take to get a response to your application on the Abraxane site? Copays.org and cancercarecopay.org might also be able to help.
Wendy, Did the clinical trial people give you a reason why they decided not to allow you to take the drug now that you failed treatment with the placebo? Since they changed their minds, you deserve an explanation. Is there an appeals process if there is no good reason for the decisions?
Apg, Many people have irregular results from Pap smears and then have normal biopsies. Don't worry too much about it. I will send good thoughts your way.
Babs, I am hating bc right along with you. It really sucks. I hope you are doing well.
Lynne.
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Linda: I have lung mets that were originally diagnosed as COPD. I just kept getting shorter and shorter of breath to where I couldn't walk more than about 5 steps without stopping to rest. It turned out that I had a bi-lateral pleural effusion which is where the membranes surrounding your lungs retain fluid which decreases the room for your lungs to inflate.
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cive, you are describing me. I have been on oxygen for three weeks following a procedure for severe pericardial effusion (malignant). Also discovered I have pleural effusion and scattered lung collapse. If I try to walk to the kitchen for a glass of water, I have to take off the tube because I have a gas stovetop. My oxygen saturations will drop into the 70's within a couple of minutes and I lunge back into bed gasping on the tubetill the sats recover. Sometimes just getting up to get a shower or get dressed, I get coughing spams that continue until they make me vomit. Nobody hasn't mentioned lung mets but honestly I can't help but wonder if that's only because my onc is on vacation and I haven't seen her since all the scans were done in the hospital. I wonder what she knows that I don't.
Something about my hair falling out this week while I cough nonstop with a tube up my nose in sweaty, mismatched pajamas... gee, I dunno, it's just making me feel really old and suddenly in accelerated decline. Hard to believe that I was NED, happy, looking cute, and boating around Vancouver with my husband and children on vacation just last fall.
Dance whenever you can, girls.
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Thank you Cive and Lulubee. Report says no pleural effusion. I looked back at my reports and one non-specific micronodule was seen in July. So jumped from 1 tiny thing to several nodules in about 6 months.
Lulubee - You have enough on your plate right now without having lung mets!
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Linda and all, the problem with me is I never do anything half-arsed. Never have when I was a healthy gal, and apparently my body just follows my personality. "BC? Okay, let's do it up right! Queen Lulubee *must* get two kinds at once! Multicentric! Multifocal! Innumerable tiny tumors!! Make it sparkle like the Milky Way on that MRI!!! Oh, and make her hormonals off the charts plus plus plussity plus plus. And then-- bwah hah hah-- let's screw with her Oncotype-- make it ZERO! Only zero in history! YEAH! Dazzle the docs!"
Three years later: "Time for bone mets? Well then, let's go for leopard print all over the skeleton, no bone left behind! Dangle a little chandelier of mets down on that ovary, why dontcha, just to keep it sexy, hahaha. Yay, more surgery!!! But no easy laparoscopics for this gal! Throw in just enough mets down there to warrant the big zipper hysterectomy, ya ya! Oh, and wave the mets wand over the pericardium, just a flash. That's always good for drama."
Three years later: "Yo, this stable bit is getting boring. Let's blow up the biliary tree. See that happy common bile duct over there? I'm going in, gonna shut that sucker down for good. You there-- go blow up her pancreas. 5cm mass overnight? Heck yeah, make it wicked awesome. And you-- go crash her liver. Whoopee! Three times, aww heck, four. Keep 'em hopping. Ready? Goal: FOUR more surgeries between Halloween and Christmas!!!"
I have never once in ten years been told, "You have one new met." Or even two. I swear I would faint and then when I came to I'd be ordering champagne for everyone. I either get "still stable, exceptional responder" or "you have extensive interval progression, multiple new lesions"-- or "go straight to ER, you could die." There's never been anything in between.
The problem, of course, is that I have had so many serious brushes with death at this point, only to be observed vacationing somewhere far from home with my family just three months later, dressed in something new and fun (I mean, isn't that what you do when you don't actually die??) that nobody ever thinks I'm really as sick as I am. (I think some people think I'm faking the whole pile of poo, seriously.) Right this minute I am bedridden and on oxygen and can't walk to the end of the sidewalk yet AND I'm also holding tickets to Scotland for my son's graduation trip in August, DANGIT. And if I'm not at least half dead, I'm going. (I didn't homeschool three kids for 25 years to get no whoop-tee-doo at retirement. DANNNNGGG IT.
I tease my pastor brother, the eternal optimist, that he will still be taking my pulse while giving my eulogy, just to make sure.
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Lulubee - OMG you have a way with words! You should write a book.
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Wendy, Lulu, Linda, Aurora - Well phooey! Sending you all some good mojo that new treatments will be effective in holding this thing at bay so you can enjoy life!
Lulu - Scotland is a great idea. I'm thinking having things planned is what keeps us going.
I don't want anyone to be on this MBC ride, but I'm thankful we are in it together.
Thinking of you all!
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I am so thinking of each and everyone of you. Why must we get hit when we are already down? Just makes me want to scream and pound my fists. This (every name in the book) frickin' disease is just way beyond a bad joke.
Praying for normal results, normal breathing, "normal" helpful meds for each. Having scan on 17th, expecting some degree of progression. Oh joy.
Love and hugs to all my sisters, MJH
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Lulubee,
You do have a way with words...I especially loved "no bone left behind" and your brother giving your eulogy while taking your pulse, just in case. I am sorry to hear of your situation.
Wendy, when I was told I have two small liver mets, I went off the rails. I've always happily rejoiced in having bone mets only and knowing bone mets will not kill me, I've been confident I'll live to 100. But enter liver mets...a whole new ballgame, but since then I've gotten a lot of encouragement and been reading that as quickly as those buggers showed up, they can exit with treatment. I'm currently on Xeloda and although I have hand foot syndrome, I'm surviving just fine, especially after a reduction in the dose. Good luck to you. I'll include all you ladies with progression because I know how dang unnerving it can get.
Saying hello to Kathryn, Linda, Lynne, Z, Lita, Babs and Aurora. I am sorry to hear of your progression, Aurora. I hope you can get that under control quickly.
I'll include you all in my prayers.
Amy
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Lulu, I was getting exhausted just reading your bio. So frustrating, I too have had similar experiences, the get to hospital now, you could die was a favorite, esp'ly since I didn't die. But it did take a toll on me. I too have been experiencing shortness of breath. CT scan shows nothing as did chest x-ray . I had to cut a shower short because I got so SOB I thought I would faint.
Very frustrating disease. My BC buddy here in my town, we met thru BC.org, died this past Dec. That has been hard on me too. Huggs to all, Su
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Amy, It is good to hear from you. I am glad that you have adjusted to living with liver mets. I continue to ignore mine as much as possible. I hope that Xeloda beats your liver mets into oblivion and that the symptoms of hand foot syndrome are manageable. Have you had any scans since you started Xeloda or is it still too soon?
We had about 15 inches of snow here yesterday, are expecting several more inches tonight, and another sizable storm is predicted for Sunday. I am not complaining because we haven't had too much until now. Luckily, yesterday's snow was light and fluffy and easy to shovel. It is pretty to look at, but isn't sticky enough to make a snowman or have a snowball fight. I am sure kids are enjoying it anyway
Have a good weekend.
Lynne
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Lulubee - You are in my thoughts. I am concerned that whatever is going on has impacted your ability to breathe and move.
When I first got into this, I became very interested in the lymphatic system. We have no pumps to move lymph around, except our own muscles. And the lymph is what clears all the garbage from the medicine and the healing process going on. Do try to get up and move about a bit, with the oxygen. But don't blow the house up.
Since you are not very mobile, consider dry brushing. The lady in that video is a bit long winded and pedantic but it is important. Especially if you have to be lying around a lot.
Hugs. You clearly have nine lives and several more to go. Thanks for the update. Please keep them coming.
>Z<
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