Bone Mets Thread
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It's so painful to hear that Wendy is gone! And how many were gone and who knows how many will be gone! I am depressed, mad and in the same time scared. Doctors, researchers and scientists from the whole world are fighting together against this Monster and still nothing, only medications to postpone the end. Knowing that soon or later we are going to loose the fight is the worst, unless there is a big discovery.... this is our hope and the Prayers. Actually ,nobody is going out of this life alive , so we better accept it and believe death is not the end.
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Bobs, good luck with the scans today and prayers for stable results. How is your grandson?
Hugs and prayers. Elena
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I’m just back from my appt. , he told me that I’m in complete remission now (THANK GOD) after AC and Taxotere, and that I’ll start Nolvadex (tamoxifen) for 2 years as I’m still premenopausal.
But I’m still confused as apparently most of you here started Zoladex with Femara and Ibrance, which was actually my second Onc.’s opinion but after more rounds of taxotere.
However my Onc. told me that they are both effective but with less risk for osteoporosis with tamoxifen and that we’ll switch to femara later.
So what’s your opinion ? I still don’t know what to do.
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Hi, AnimalCrackers. I'm doing well, except for this disheartening blow... Been busy living and got involved w/a several FB bc groups (Integrative Healing, Xeloda, etc.) that have just become overly time consuming, so not on BCO as much. And, as you know, when you aren't here or in any on-line discussion group for even a few days, it's easy to feel totally lost and out of the conversations. But wonderful seeing you, Iwrite, Lynne, Babs, Z, and everyone here, although the circumstances couldn't be any crappier. Big hugs to you and all. PM me anytime. Feeling heartbroken today for Wendy and her family... Deanna
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I don't know if BluebirdDE posted here, but we have learned she has unfortunately passed away yesterday. The sweet beautiful writer who would love her doggie more than herself. I can't believe all of this is happening. She was a sweet kind funny supportive sister and I will also miss her. I just can't even swallow, I haven't eaten today, I just can't help feeling physically ill with all this loss. Much love you wonderful ladies. ~M~ If someone else has already posted this previously.... my sincere apologies.
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And now Bluebird DE...no words.
Scan results back and still stable...survivor guilt today with these lovely young women lost.
I admire our sisters for living fully, fighting bravely, sharing what they learned with us, and loving their families and friends (including BCO friends) until the last possible moment. Getting out my pink hat, horse and beach pix to remember... and determined to follow their extraordinary examples of living every day. Cancer...you B@&$!!:, you will have to catch me first. I’m going to make you work for it and I refuse to go gently. (Insert image of the Terminator here.)
Sending hugs to all as we remember sisters.
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Oh, Micmel, the news about BluebirdDE is almost too hard to bear on top of Wendy. The other mbc groups I'm in have also had a shocking number of losses in recent weeks. Once again it leaves me wondering, where is the outrage? We all get it, but much of the time I feel like we're simply preaching to the choir. Let's pray the researchers truly get it.
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Crushing to hear about Wendy. Sending love, strength, and positive thoughts to all of us.
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Hi Ryan,
I have been on Zometa for almost two years with no problems. The only issue with me was that I had to skip a dose when I was having some dental work done. This was just a precaution to protect my jawbones. The only thing I would suggest is that your Mom talk to her onc if she is planning any dental work. I wish your Mom and your family all the best.
Nancy
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So sorry to hear about our lost sisters. I knew BluebirdDE but can someone tell me Wendy's screen name? What a lovely soul.
Iwrite, good scans are what we live for here. Jumping on a table and doing the 'tequila' dance for you!
Sheilamarie, sorry you're feeling crap. Jennifer's response was spot on - you have lots of options to manage through this. But, at root, we have all earned an invitation to that pity party and sometimes we just need a good wallow.
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she will be very missed , stilll so not real.
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It SUCKS that Wendy died, too quickly, much too young. Its just heartbreaking..
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Has anyone seen information on gadolinium toxicity? (Gadolinium is the MRI contrast.)
When I read the symptoms I want to say no to further tests with contrast. Plus, I want to know how to rid my body of the chemicals. I believed that by drinking lots of fluids would flush it out but maybe not.
I’ve had many MRIs since Dx and the cumulative effects could be causing symptoms instead of the MBC...
Just curious about whether others have heard about this.
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lwrite - Oh crapitoa. I've been demanding MRI because I thought they were better for me as far as reduced radiation. Need to look at this. I have had 4 MRI in the last 3 months: 2 liver, one spine and one brain. I am going to have to have another brain MRI in the next month.
This page lists symptoms. I have been wondering about this strange burning sensation on my torso skin, and that is one of the symptoms. I'll be lightening up on the MRIs until I understand this ...
https://gadoliniumtoxicity.com/category/help/sympt...
Sheila - I am really hoping this is a bad patch with an end. There are many bad patches,. Please keep us posted, try pain relievers and anti-depressants and anything to get out of this dark place.
>Z<
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Agree totally with Jennifer. Shelia Marie, pain has to be dealt with. I know how you feel. Keep going!!
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Shelia, we are all entitled to bad days, but don't let it consume you. Call your doctor, there are many, many ways to deal with every single side effect and emotion.
I'm so sad about Wendy and all the others we have lost. This sucks
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shortness of breath is often caused by low hemoglobin.!i haven't had a bone marrow biopsy but the dr was 95 percent positive it is in bones but after 18 months bone narrow. Trialling a couple of drugs so hopefully won't have to have chemo, I had a blood transfusion last Friday and 5 days later I am back running again with weekly blood tests to check my hemoglobin keveks
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Well,....PET SCAN was done on Monday 5/21. Apparently I lit up like a Christmas Tree. Bone mets everywhere they could be. No involvement to liver, lungs or brain. Onc said came back the same way as it left. (supposedly) Low grade, not aggressive, but is in all bones. What now? He was considering Chemo - but because my WBC counts are soooo low, not the best option. So he advised Faslodex with Ibrance. Pending insurance approval start next Wednesday. Anyone else on this combination and how are you doing?. I just can't believe this. I feel so good. It is in bone marrow, and from what I understand the Faslodex should help repair the bone marrow? - so that it starts producing the good bone marrow again and get my WBC up? Not too sure if that was what he meant. I think so. Just a mass of confusion right now. Never in my life did I think the BC would come back after 16 years. When I was on these boards years ago, (16yrs) lost some great women warriors. Sorry I didn't get to know Wendy but she is truly an angel among us!
Lordy - look over all of us! crissy50
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Chrissy, Well, DRAT, DRAT, DRAT for lighting up like a Christmas tree. I know how shocking it is to hear that your bc has recurred and metastasized. I am sorry that you are going through all this. It really stinks, and I wish you didn't have to face this. Although you received bad news, you have given us some facts that I want to focus 1. It is only in your bones, not in liver, lungs or brain. 2. It is low grade, not aggressive. 3. You feel good. 4. Your have options for treatments particularly since you are apparently ER+. Those four good things for you. Almost exactly 3 years ago, I was diagnosed with mets in virtually all my bones, too. I was originally given Arimidex, but I experienced progression to my liver after 13 months. I have been Ibrance and Faslodex for the past 22 months, and the combo has been a relatively easy one for me. I continue to live a normal life, and I still feel good. The best news is that I have experienced a positive response. I am not NED, but my liver shows only a few tiny spots now, all too small to be classified. The tumor in my breast is no longer seen on scans and not palpable. My bone mets have shown no progression during that time, and the bone mets have been described as "improved" on some scans and "stable" on all others. Stability is always good news, and improvement is a bonus. When I was first diagnosed, my WBC, RBC, and hemoglobin were all very low. The gradually improved with treatment. Although Ibrance does play games with blood counts, they usually rebound during the week off during each cycle. Please stay in touch with us so we know how you are doing. You will find lots of knowledge,kindness and support here.
Hugs and prayers from, Lynne
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I’m hoping it’s just a bad patch. My labs look good, so the pain and fatigue have to be a side effect, which we are trying to manage; it’s just been a struggle. Like you said, Jennifer, I’m trying to learn (and accept) that taking pills to help me through the day is just going to be a way of life for now. A couple of weeks ago I had all these things going on, I felt good overall, and my spirits were high. I’ll get back there, hopefully.
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SheilaMarie,
I have noticed, over the years, that Spring is not the best season for we metsters. As a gardener, I love the season, as it is the time of renewal and growth. Sadly, maybe for cancer cells too.
Forgive yourself for the pain and frustration. And, as my nurse friend once said, "Take the damn pills."
Jennifer
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My palliative care dr says the same thing: Take the pills, use the gels, put the cbd tincture under your tongue. Don't try to be a martyr.
None of us know how much time we have left, and we deserve a halfway decent quality of life.
L
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Chrissy, join us on the Ibrance thread too. Lots of folks there having good runs on Ibrance. (And that was not a pun for GI distress...lol). We discuss SEs too.
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Checking in tonight and so saddened to read about Wendy's passing; so hard. She joined around the same time as me and was always such a positive, humorous force here. I'd noticed she'd been missing lately and wondered. I had no idea about the brain mets. Rest free Wendy, you will be sorely missed. Hugs for your family.
Edited: I'm re-reading and see we've lost BluebirdDE as well, oh my word, I'm so sorry to read this, too. Thanks, Micmel for letting us know. I haven't been on your thread lately, but that's where I knew her, and had no idea she was so ill.
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Chrissy- It is so hard to get reports like that! Thinking of you and looking forward to seeing you on the Ibrance thread. I have had 31 good months on that treatment. There is hope!
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Sorry everyone, I've been having a break from thinking about cancer for a while. I just had to go away from thoughts of it for a while, put my head in the sand and do other things with my mind but now I check in and see we've lost two of our lovely girls. It's too sad for words and so unfair. Thanks Micmel for the screenshot showing Wendy's name. I remember her well. I'm not sure I knew BluebirDE but I send both of them my blessings.
This is getting really hard for us and a lot of us are having bad days while we ponder on on our lives and why this happened and how we are going to get through the hard times. We all have them. I feel fortunate and am counting my blessings because, while I know I have a skeletal system full of bone mets, with a lot of active spots, overall it's called stable. I take all the pain meds I'm offered because I want to have as good a quality of life as I can while I'm in this place, knowing it's probably inevitable it won't last. I refuse to think about what happens next, although I have a loose plan in my head that I'll put into place if things change. The rest of the time I WILL NOT let cancer dictate where my thoughts go. I WILL NOT follow the path my mind would lead me if I dwell on it. I'm going to continue to live the very best, most joy filled life I can, filling every day with happy thoughts despite what's happening to my body. My body is not who I am. It's a vehicle I was given to spend this lifetime in and when the vehicle completely breaks down I will still be me. Nothing can change that. I have my times, usually when the Ibrance cycle is coming to its peak and my immune system and haemoglobin go down, down, down and take my physical and mental strength from me, but now I recognise that that's what is happening.
I look back over my life and know that I'm fortunate to have made it to my sixties having crammed a lot into the 55 years I had before I started to become ill but wasn't diagnosed or treated and I count my blessings for the opportunities I had to fulfil my adventurous spirit, not in the usual way. I didn't get to travel to Europe and follow in the tourist path but that wouldn't have been what I wanted anyway, although there are places I would have loved to see. For me, every day was an adventure because I followed my heart and that little voice in my head that said, "Dare to be different. You're unique. You're you. Do life the way you want to" so I did. I have no regrets.
This is my tribute to those sisters we're losing. We've all lived our lives in our own way, the way our soul dictated. When my time comes I'll know that this is what my soul chose. It chose this life for me to explore and learn from every experience that has challenged me...and there have been many.
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Chrissy50 I also have just had it diagnosed in bone marrow. As far as I known only one other person on the boards has it, This lady said that her Onc in the U.K. has said only chemo can fix it but my dr is trying Exemestane and Afinitor which he believes has a 50 percent chance of killing it off in the bone marrow. He met with quite a few breast cancer specialists both here in Bendigo and also in Melbourne to come to that conclusion. I have had 1 blood transfusion because my hemoglobin dropped to 71 and I was feeling terrible and now 5 days later I am interval running again, cooking not having to sleep for hours in the middle of the day. What will do with your bone marrow?
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Amen Leapfrog! Living fully while we can leads to alife with great memories and few regrets.
Totally understand stepping away for a bit.
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Delvzy, hi I'm actually in the US. New Hampshire to be exact. So my oncologist said to knock it back chemo is the best because it targets rapidly dividing cells. I think aromatase inhibitors coupled with Ibrance or Abema are part of the "it's a marathon not a sprint" way to treat. I was on Letrozole and it was working then BAM! mets to the marrow. Chrissy50 I'm sorry that it's progressed to your bones/marrow. Hoping they find a treatment that works for you. I see my oncologist Friday. I'm nervous, hope the Taxol is working.
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Well, I'm doing Faslodex and Ibrance (if my insurance approves the Ibrance). Hope for the best. I really do feel great, with very little bone pain. I, too, hope that it will work and stop it in its tracks. Never any guarantees in life, is there? Just want some kind of normalcy. First Faslodex shots on Wed.
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