Bone Mets Thread
Comments
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Cristina..... I'm new here...but I am praying for you...((HUGS))
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ok ladies...bone biopsy is in the bag. They did not put me out. I was awake but they did give me versid to relax me. But I am very sore. Have already had Lortab and thinking of taking more. He said he got a good piece of bone, so I hope it's what they needed
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Gracie,
Certainly hope you get good information and heal quickly.
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thanks Kaption
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Good morning Ladies,
For the first time since 2015 I'm feeling as though I'm losing the battle. Having progression on Ibrance/Faslodex feels like a huge loss even though I know it's small progression, 2 9mm spots on hip and T2 BUT I never really got much if any progression-free time. Last September while on Femara only, there were numerous new spots, so rads kicked most of them down and in January 2016 I moved to Ibrance/Faslodex. Two hospitalizations later, aka Ibrance kicked my butt, I still have progression, July 2016.
I'm thrilled it's still only in bone, but this has taken an emotional hit, so much so that I actually see my demise. I'm hearing words at my funeral and imagining the kindness of neighbors for my husband and children.
Just want to ask if others have these little "movie trailers" playing in your head? That's how it feels right now. In the past, when the end game was much more subjective and less-defined, I'm feeling a major mood shift with a tick, tick, tick...
Just had to put into words my helplessness...maybe I'll feel more optimistic when my MO has a new plan.
Another weekend almost here...make it a great one!
With love AND hope...
Amy
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Amy,
I have most certainly run those scenarios through my head repeatedly. Periods when there has been progression, those darn cancer cells have mutated and tricked us, or the treatment itself has reduced my QOL...that's when I go "there."
But, you are exactly right- new plan will get you a new mindset. Also, trying to be active, be with others, and make a plan of something to look forward to (even short term). Those help me.
You did the right thing in writing to us. We've all been there. Write about it, then feel our ((hugs)) and prayers!
Keep us informed.
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Amy, those scenes play in my head every day! I try not to let them in and stay busy but it still happens. I try to concentrate on what I can do today, which is exactly what I could do before bone mets. My latest thing is the election coming up, I wonder if this will be the last election I will vote in. Strange thing to think about I know, but that's how Cancer messes with our minds. I think you will feel better when you get your next plan of attack started.
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Amy I'm so sorry you are going through such a hard time. I will be thinking of you and I hope your MO gets you a new plan quickly
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Amy, i am so sorry that you have progression. I know only too well those feelings that you are having right now. Last year I decided that I was going to be a super-responder. I was going to spend 5, 6, maybe even 7 years on Arimidex and then move on and spend another 10 years on some treatment that hasn't even been discovered yet. You can imagine how quickly those dreams faded when I was told a couple of weeks ago that my bone scan shows mets in "essentially every osseous structure" and, worse yet, CT and PET confirmed that mets have now spread to my liver. My DH and I wept, and I spent several nights tossing and turning - worrying about who will be here for my DH once I am gone, stressing about how difficult it would be for him to have to care for me as my health declines, knowing that he will not reach out for help. I felt sad and defeated. Progression reminded me of how ugly and cruel mbc really is. It also reminded me of my own mortality. Somehow my DH and I found the strength to move forward. My DH told me we can handle this. It was time to enjoy the now instead of worrying about the future and risk missing the beauty of today. I have already told you about my appointment with my MO. He was so reassuring without making false promises, that I believe I could very well be here for a long time. I am in a better place emotionally, now that I am on a new treatment plan, and I pray that will happen to you, too. The shock of progression cannot be minimized. What you are feeling is normal. Somewhere within you, there is the strength to handle this. You might not feel it right away. You might find it through prayer, meditation, exercise, conversation, medication, or a new treatment plan. In the meantime, remember that we are all here for you. (((Hugs)))
Love and prayers for you,
Lynne
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Cristina- so sorry to hear that things are difficult these days!!! Thinking of you
Amy- trying to stay out of the dark places feels like a full time job...hang in there.
Lynne- Fear of progression and news that it has happened are two things to hate about this disease!! Glad you are feeling steadier and have a plan.
On vacation, but the carefree feeling is MIA. Still...seeing family together enjoying life is wonderful.
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Amy, I've been thinking about you since I saw your post a few hours ago -- wishing I had the right words to make you feel better, but, of course knowing I don't. I guess I can just say, absolutely yes to your question about the movie trailers that play in our heads. It's very normal. But I have this other, more prominent one -- and I think you do too -- that is still full of hope that there will be more breakthroughs in the very near future. In fact, one that comes to mind is the new Ibrance-like drug (can't recall its name) that patients reportedly can stay on without a week off each month. And I'm not a doc, but not sure that two tiny new spots are that concerning, especially if the rest of your mets are stable or better on your current regimen. Ibrance can be a bit unpredictable that way.
But for today, I'm sending you all the strength and healing vibes I can muster and beam out to you, as well as a prayer that this scare turns out to be not nearly as bad as you fear, and maybe won't even require a change of meds just yet. Hugs, Deanna
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Amy, yes to those scenarios playing in my head, too often. Although I've been relatively stable, I've been having so much pain lately and it takes me to dark places. I just don't have as much tolerance to pain as I used to. Bugger on darn progression although minimal. I hope your next tx will be gentle and stop progression for many years. Big hugs to you.
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Amy what can I say that the others haven't already pulled from my heart. The sad scenarios play in all our minds I think it's part of the "fun" that is cancer I would try and lean into the other direction the one where the hope lies. It's a roller coaster ride for sure. But you will have ups again and successes you need to hold this idea strong first and foremost in your heart. There will be new drugs coming around the corner, you are one tough lady this I have learned reading all your posts. Surround yourself with good people and give yourself lots to do. I always find if I sit at home my mind always goes to the dark places. I'm sending you a big ol hug right now 😀
So now I have a cyst on my kidney I'm supposed to believe that's what it is with nothing else to go on but the radiologists say so. One thing that keeps me going is the fact that the pharmaceutical company responsible for this trial would have me off in a second if they thought I had progression so I guess there's that.
Also there is someone who wants my horse got the call yesterday and I can't stop crying. I don't want to sell her I feel like my heart is being ripped apart. I have to try and look ahead but ahead seems like a dark place .
Wendy
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Oh Wendy, I feel for you in selling your horse. I rode a lot as a kid and know how attached you are. Tears in my eyes for you. Lots of ((hugs)).
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Wendy, I can only imagine how difficult it is to sell your horse. I know she dear to you. I am sure you will only sell to the right person, so you will be able to take comfort in the fact that she will be happy and well cared for. It is interesting to read that you have a cyst in your kidney. I had one show up on my recent CT scan report, too. No one seems particularly concerned about it, and with everything else going on, I am ignoring it. If I develop pain, I will call my urologist, otherwise, I will just wait to see what she says when I see her in January. I did read that the cysts are not uncommon. I wish I could say something to lighten your mood. Please accept this (((hug))).
Lynne
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Wendy, I've been a horse owner so can feel the heartbreak in your heart right now. Is there ANY way you can keep her...make her your priority no matter what? I still regret selling one of my Arabs and by the time I realized what a mistake it was, it was too late. This was over 40 years ago.
Lynne, Wendy, Deanna, Linda, Kathryn and everyone else who stopped by with encouragement and wisdom, thank you!!! I think I had to write the dark thoughts down just to accept and acknowledge they're there. Back in 2013 after initial dx, surgery, chemo etc I mentally prepared for "years" on AL's after all, my MO said 5 even 10 years of Femara...well I got 18 months, but of course, I want more. Then Ibrance became my new "hope" but gosh looks like 6 months is all she wrote...anyway, today was rough feeling as though my options are few.
Thank you for listening and offering hope and compassion when it feels as there is little left. I know we have so many BCO members much worse off, those in Hospice who truly are facing their own mortality square in the face. I admire the grace and dignity with which they do it. I hope whenever that time comes, I am as graceful, but for now dear sweet friends, thank you. You've helped immensely.
Amy
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Amy-we've all gone to that dark place. After I was diagnosed with stage IV. I was put on Ibrance/Femara. It only lasted for me for about 6-7 months. before I had progression. Then onto a clinical trial that was so very promising -but, not for me! I was on it for 2 months with more progression It was at this point that I was at my lowest. I was counting my days on this earth!!!! My MO put me on Xeloda and as of June I am NED. Speak to your MO, see what treatment he/she has for you next. You never know when you'll hit on the right treatment for you. We all travel on the BC roller coaster with ups and downs.
Wendy-I am so sorry you have to sell your horse. I know how special they are. In our last house we had stables that we rented out to a woman with 3 horses. I never thought I'd feel anything for them but, of course I did, so I know how hard this is for you. Is there any way around this sale?
Babs
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Amy,
I have certainly been there. As a matter of fact, I already have the music picked out for my memorial service: Vince Guaraldi and Bola Sete playing a lovely instrumental of "The Days of Wine and Roses," Luciano Pavarotti singing "Nessun Dorma" from Turandot, Pat Metheny's wonderful "San Lorenzo," and a couple of my favorite praise songs/hymns. When the time gets closer, I'll select the photos for the slide/video portion and work with my appointed eulogist. I want lots of rose arrangements because I'm an avid gardener - really sucks that I can't do that anymore because MO has forbid it while I'm in Tx. I love dahlias and irises, too.
I don't know how much time I have. I was Dx with St IV right from the get go this spring (April '16) with extensive mets in EVERY vertebrae in the thoracic and lumbar region, tumors in the muscles adjacent to the spine, as well as the iliac and psoas muscles. I also have bone mets in my pelvis and hips as well as nodules on my kidneys, adrenals, and bladder. Latest CT scan shows mets in lumbar are getting worse. (Duh, I guess that's why I'm having way more pain now.) Doing my best to manage pain with medical MJ (thank God I live in CA!).
Right now I try to live day by day and not project myself too much into a future that I may never have. CA just put their "Death with Dignity" law into effect this past June. I looked into it already, but you have to jump thru SO MANY hoops, get two outside Drs to certify you're terminal, get a psych evaluation, and then there's a waiting period, to boot, That's bullcrap. You could already be dead by then! I'm better off doing what my best friend's mom did when the time comes: Go off all meds except the ones for pain and sedation, no food and no water, and then you'll be home in Heaven in about a week, depending on what God decides to do.
Sorry this seems so morbid. Some of my friends chide me for being a little pessimistic. I WANT TO SCREAM AT THEM: "Hey, toots, when you get a cancer diagnosis like mine, we'll see how YOU handle it!" I want to be prepared so my DH and DD (22 yo) don't have to stress about making all the funeral arrangements. It's going to be hard enough on them as it is. Thank God we have this forum. You gals are the only ones who understand that we Stage IV'ers in all likelihood will not be here as long as our St I and St II sisters.
I plan to live each day to the fullest. I guess I'm like my 5.5 yo rescue English Bulldog. Bulldogs only live about 8-10 yrs (altho we fostered one that made it to12!). She may only be around for another 4-5 years. I hope I can be here for her. I don't worry about my DH of 27 years...he has great friends and a large family (biological and church, too). He'll do just fine. DD has accepted the inevitable as well. My oldest bro has had congestive heart failure for TEN years, and he's still hanging on w/ oxygen, etc. (There's hope for me yet...) We touch base all the time now and joke about who'll kick the bucket first. He's very philosophical and a strong Christian, too. Death is a part of life, he says. Some of us will go sooner than others, and that's just the way it is.
I leave you with a lovely black/purple iris for inspiration. Snapped this shot from my wheelchair in April while on a garden tour shortly after my Dx. Irises don't bloom for very long at all. But even as their blooms fade, they are still beautiful, and so are we, even in our fading days.
Love and (((hugs))) to you. And perhaps another treatment will give you a lot more time to spend with your family.
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Lita, it's very normal in the first few months -- which you're still in -- to have an overwhelming sense of mortality. But I think -- I hope -- you will find as you do well with your tx -- that life does go on, and there is much reason for hope. I'm curious... Do you know why you're on chemo out of the gate, so to speak? I realize you have extensive bone mets, as many of us here do, but in many cases our situations respond very well to less toxic tx, with chemo reserved for use a bit later. There's also a wonderful new targeted therapy, Ibrance, that is proving to be super helpful for many of us. I just hear so much doom and gloom in your post, which reminds me of how I felt when I had only seen my local onc -- prior to going back to UCLA. Just the look on his face had me planning my funeral, and now I don't feel that way. I know UCSF in your area is a great place for mbc care, and I'm just wondering if you have or would consider getting a second opinion there. Trust me -- a positive onc who deals primarily with bc can make a huge difference in outlook! I'm also not understanding why no gardening, especially since it clearly gives you so much enjoyment? And are you on a bone building drug such as Xgeva? Just some random thoughts I wanted to throw out to you along with a welcome to BCO! Deanna
PS ~ Just wanted to add after reading another post of yours elsewhere ... Many of us also dealt with a lot of pain initially, and in quite a few situations (mine included), we had undx'd fractures in our femurs, pelvis, and/or hip. I suffered for weeks not realizing I had them -- to the point I could hardly get around, as you described in your other post. I eventually ended up in the ER and needed surgery, as have others here. That sort of pain will totally bring you down because you mistakenly assume it's par for mbc and there is no solution, when surgery can make a huge improvement. Just one more thing to be sure you have thoroughly evaluated.
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Lita,
I just want to share what my RO said to me as I was wheeled into my first rads on my back on a gurney because I could not walk. He gently smiled and said "I know your life feels very small and restricted right now, but I promise it will get better." It hasn't been easy, but he was right. I don't know how my situation compares to yours, but I also have extensive spinal and pelvic bone mets with a L1 fracture (and various other bones). I've had radiation several times. But, I was off of that gurney within a week. I came home from that first hospital stay and put the walker in the closet.
I'm not running races, but I am able to live a pretty normal life.
As Deanna said, seek out helpful, positive medical people. We have so many options now.
Your life can get better!
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I saw this on another website and had to share.....
I am fairly new here and reading everyone's posts have helped me so much emotionally.0 -
Lita - I don't remember seeing you on this thread, a warm welcome to you although I'm sorry for the reason that brings you here. I certainly remember the roller coaster of the first few months after dx. I was in pretty bad shape and never thought I would be doing so well more than 2 1/2 years later. I just finished reading your post on the "would you share your stage IV story with us". By the way, I love your dog, I'm a dog lover myself. I see in that post that you will be switching to hormone therapy later on. You will find that SEs are much easier than your current tx. I echo what the gals above say about a second opinion and many options available out there. I was dx'd stage IV like you out of the gate and now lead a pretty normal life. That iris is gorgeous. Big hugs to you.
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Thanks Deanna and Kaption
)I had radiation in the thoracic spine immediately after diagnosis because the tumors were causing major spinal cord compression - the excruciating pain put me in the hospital. After radiation was completed, I had my first Zometa infusion for my bones. A week later we started Xeloda pill form chemo. I was offered intravenous chemo options, but I declined because they SEs are even worse - and my MO concurred...the dry heaving would not be good for my spine and adjacent muscles (which are also cancer ridden). I will have more radiation in the lumbar spine after chemo because my RO doesn't want to do it concurrently with chemo (increased SEs).
I'm a bit curious, you asked why "you're on chemo [right] out of the gate?" Surgery certainly wasn't an option to remove my left breast - the horse was already out of the barn and pooping sizeable metastases in the pasture every where. They had to do something immediately to start shrinking the little bastards down.
I can't garden because I can't bend over any more. (I physically CAN'T!) I have several compression fractures in the spine and ribs, and the latest CT scan showed NEW ones
(. I also have degenerative arthritis and four bulging discs back there. My drs have been very thorough, and I've done my own research w/Mayo, Johns Hopkins, etc. The protocol I'm on is the right one for me given what I have. I am confident in my drs' abilities. They also did a bone density test, and at age 57, I have the bones of a 90 year old. My RO (sweetest guy in the world, and a cancer survivor himself) says the worry right now with my bones being what they are is continued fracturing which could lead to paralysis. I know of a woman who actually had that happen. She was St IV with spine mets, too. She was only in her 30s with little kids and ended up paralyzed in a wheel chair. She lived about 3.5 years after Dx. If I fall down out in the garden it'll be all over for me. [Don't tell anyone, but I have "cheated" and gone out there with my cane or walker and done a teensy bit of pruning, but no bending over.]I'm seeing a medical MJ specialist to help with pain and nausea. Zofran and other anti-nausea meds don't work on me, but MMJ does, and it also helps with the deep bone pain. Norco (hydrocodone) didn't even touch that.
Thanks again for your thoughts and prayers. I am trying to stay as optimistic as I can, given the circumstances. If I came down with this ten years from now (in my late 60s), it wouldn't be as big a deal. But I'm suppose to be in the prime of my life, and I've had to quit a job I love (been there over 21 years) because I can't sit or stand for very long, and I can't lift anything over 3-5 pounds. I've never acknowledged it until now...but I guess I'm going thru a grieving process. The old Lita and her old life is dead. I have try to find a new one, and I hope you all will help me with that.
L
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Silvia - Thanks for the GREAT poem. It brought tears to me eyes.
Linda - Thanks for the kind words. Is that your dog? I love cockers - they have some health issues just like bulldogs, and you have to stay on top of them.
Cheers!
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Lita,
So sorry to hear about the many complicating issues you have. ((Hugs))
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Yep, Deanna, surgery may definitely be an option in the future, as I've been told. Hip pain has subsided, but the lower back pain is always an issue. They don't want me to see a rheumatologist just yet (for the degenerative arthritis) until they can get the spinal tumors under control a bit more.
L
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Yes Lita, that's my dog. She's 6 yrs old and I adopted her last Dec. A few ear infections already!
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Linda, we had a hard time w/our first English Bulldog's ears - seemed like they were perpetually infected, even tho we had her on a special allergy diet and cleaned them regularly. Lots of purebreds have allergy issues which manifest in the ears, webbing between toes, and skin. And our Tiffy had 'em all. I know we helped a vet put his kids thru school because of all the vet bills ;o).
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Hello everybody! I don't post often, but read everyday. To those of you who don't know me, welcome to this gathering of strong,helpful,loving,wise,understanding,compassionate women. We are all in this together and lean on one another when needed. You have come to a good place. I now have a little over a year under my belt. I can honestly tell all of you who are fairly new to this dx, that things get better. You fall into a groove, a new normal. Scan time is always an emotional roller coaster. Most of the time, I keep cancer in the back of my mind and continue on with my life. My oldest Dd gave birth to our second grandchild. Another boy. Healthy and beautiful! Jaxon Wade. 7lbs.3oz. I am over the moon,in love with my grandsons. They are worth fighting for, living for and draining my checking account for!!
Patty waving hi
Dee- I am so sorry to hear that you have had such a crappy summer. Hopefully you can get adjusted to the new tx and take that drive across Canada. Hugs!!
Lynn- you are amazing. You have been through so very much in the last year, and you still have such a great outlook. We should all follow your example. You are always there to encourage others, even in your darkest hour. You really are a special kind of sweetheart!
Annie- nice to see you, you look great! Beautiful daughters too!
Christina- please come back to our thread. We all love hearing from you. Lean on us, we are here to help! How are things with Dh?
Wendy-You are so awesome! Two gold medals!
Has anyone heard from Momatt? Worried about Dani.
Deanna- Thank you for always sharing your knowledge with us. you really know your stuff! What would we do without you???
Carol- I am amazed at how far you have come! It hasn't even been a year since your surgery and no pain meds!!! That's really great!
I know that I am missing a dozen amazing wonderful women. Please know that I love and pray for everyone.
Love Chelle.
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Chelle, Jaxon is adorable and look at all that hair! Congrats and I assume that is big brother holding him? What a joy for you to be near your daughter and to welcome a new grandson. I can sense you are beaming!
Couldn't sleep well last night and ended up watching some obscure channel and caught a woman being interviewed. She had been through some very tragic events in her life. I did find what she said applicable to many of us here.
She said, "trying to dress rehearse a possible bad outcome so we can beat vulnerability to the punch is fruitless. Replace the rehearsal and shudder of fear in your mind with gratitude and it will help keep fear at bay"
I thought that was interesting and appropriate as we all face scans, our own mortality and the unknown. So today I will say I am truly grateful for all of you strong women who have made my life better.
Linda
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