Bone Mets Thread
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hi Daniel, I too have damaged femur, pelvis. I have had chemo, followed by radiation in 2016. More radiation recently which has helped. My onc does not recommend surgery in case of infection. Surgeon also reluctant as I have another small lesion in my liver. I can cope with a cane or crutches. My best wishes for your wife
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Hello ladies,
Does this mean that I'm NEAD ? That's the opinion of the PET CT scan, till I go to the Onc. on wed.
" The study is currently negative for the detection of any significant FDG avid residual viable tumor tissue involving the left breast primary or the old bone metastases keeping with good response to therapy. And no new developed metastatic lesions."
Thank you.
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Off to the PET Scan I go!! Optimistic that I don't "light up" too much. Still shaking in my boots.
Thanks to all of you for encouraging words.
crissy50
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Fingers crossed Chrissy for the worlds most boring scan. But whatever it you can deal with it and we're here. Keep us updated.
>Z<
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Tropa, it sounds good regardless
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Chrissy, thinking of you and hoping your scans are cold.
Tropa, there's a lively discussion about exactly what defines NEAD, but you can celebrate great results in any case!
Z, always happy to see your snap show up. Think of you often and hope you're doing well.
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Tropa- such wonderful news, regardless of how we label it! interested in how your doc explains it to you at your appt.
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I have a question
My blood test, by tumor markers, says:
CA 27.29 229.0 U/mL ≥ 0.0 H What does this mean? Is this bad? In April it said 305.2 U/mL so going down has to be a good thing right?? I know some don't take much stock in tumor markers, I just want to know what it means.
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Big peaches - This is indeed a good sign! While lots of folks don't rely on tumor markers because they can be influenced by other factors, in others it is an indication of the general direction things are going. Small changes in the numbers usually don't mean much, but yours is a significant downward jump. The other thing that I have learned is that trends are more important than actual values, but with only two data points, you can’t yet define a trend. Your next lab will help with that. In the meantime, i would celebrate this as a potential indication that your treatment is working!
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Lauren, thank you so much! That makes me feel better
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Oh friends, I'm passing on very sad information that I came across on a FB page for MBC.
Some of you may know Wendy Buers. Sadly, after a few months struggling with progression of liver and brain mets, she died peacefully this past weekend. I miss her terribly.
Our dear Wendy....
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Wendy? No! Oh no no no.
So much loss at once. Everyone hang in here together, please. That is what kaayborg, Kaylynne, and Wendy would want us to do.
Wendy was such a lovely, caring woman. She had grown quieter here of late and I've been concerned about her the past week or two. Just had a sense that something was changing. I hope she is galloping on a beautiful horse somewhere in paradise, with her long curly blonde hair flowing in the breeze. We love you, Wendy. Be free.
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wow, so sad. I realized she had been missing here too but saw that she had been posting elsewhere. I hope there’s a dragon boat or rowing thing for her, like a paddle out for surfers, she enjoyed that so much.
Thanks for letting us know Jen
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I just had a message from Andreas, Wendy's husband. I knew about her brain mets dx earlier this month after a seizure, and it sounds like she just was never able to rally after that. I had kept in touch with Wendy via FB messenger, and like everyone here who knew her, I am devastated.
The friend who posted the news on FB was a team mate on Wendy's dragon boat racing team. She reports that tomorrow the team will be having an on water flower ceremony for Wendy. I will ask her to try to get a photo to share here.
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I’m devastated. Too many losses lately
I hate BC
Bab
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OH NO! Wendy was such a strong soul whose positive spirit came through in her posts. This is such sad news. Thank you, Jen and Deanna for letting us know and posting that beautiful photo. Too many tears.
Hugs and prayers from, Lynne
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I am stunned and so very sad. Tears and prayers for all of us b
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Oh No! We’ve lost some wonderful ladies in recent days. We miss you Missy Kaylynn and Wendy! Fly free friends...
Waiting to go in for more scans this morning. Hating cancer a lot today
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Iwrite I hate cancer everyday. Also waiting to go in for my scans today This is getting real old!
Babs
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Kathryn and Babs, I will be thinking of you today and hoping that you both see good results from your scans.
Sometimes it is so hard to keep coming here. I have lost so many friends, most of whom I have never met. The pain and sense of loss does not weaken as more and more friends have their lives shortened by this horrible ugly disease. It is sad. It is scary. Yet here I am. I always return., not as well known any more, but still here. There is a special connection here that draws me back for the warmth, support, and knowledge that are shared by so many. New people continue to join us here as they receive the news that will forever touch their lives. Will it ever end? I pray for the cure that is desperately needed and long overdue.
Hugs and prayers to all of us, Lynne
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Thank you ladies! Devastated by the losses, but uplifted by you all each time I check in. Babs, Hope your scans come back clean! Give Anton an extra hug when you see him. Lynne, thank you for your encouragement! It is a blessing on dark days.
All the best
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Love you Wendy. Miss you. You kept me going through the early months with your critical mind and determination.
Z
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Very sad news. I’m so sorry to hear this.
Lynne, me too, just the continual bad news makes me want to get away from it all and forget about it for a while.
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Thanks dlb, I’m happy to hear about the flower ceremony and surprised about the brain mets, I didn’t know. Love her spirit and smile 🙁
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well wow😞 I have nothing. Nothing. No words. I can't believe this all has happened. What on earth is going on. To much sickness and sadness. This is unreal and I can't even believe it still. So sad. So angry. So full of whys? Such beautiful ladies. Nothing makes sense. I'm deeply deeply saddened by all of this. It's just too heart breaking 💔 women with such a zest for life. Too much loss, too young , I am at a loss for words, but filled with such sadness and disappointment! Fly angels fly... you're free now. ~M~ I am sorry for the families and DH's. It's just not fair.
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It’s been a tough couple of weeks. I guess I had a pretty good run though. For about a year I had no terrible symptoms of my MBC. Now that’s changed. Everyday I hurt. I cry regularly. I lay around way too much because of the pain or meds for pain. I feel like I’m letting everyone down and honestly, as if they’re letting me down. I look like ass. I just want to be normal. But if I’m completely honest, I was at least hoping for a really good summer before everything went south. When I started this new chemo (abraxane), I felt better than I have since diagnosis, most days I felt great,then out of the blue things changed. I guess it’s cumulative side effects (joint pain and fatigue). But that really puts a wrench into all the summer plans I’ve made. Guess I’m feeling sorry for myself today.
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Sheila-so sorry to hear about your pain and fatigue. Praying for brighter days ahead
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Oh no - Wendy... she was such a lovely person with good sense of humor. She will be missed.
With all of these losses I’m thinking I shouldn’t be squandering my good days by working full time. Just hate to lose the income. But I’ll regret not enjoying life while I’m still in pretty good shape. We all know how quickly things can turn...
I have scans coming up June 1- I’m feeling really well but that doesn’t mean much. It’s all about the scans.
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dlb - good to hear from you but not under these circumstances. Thanks for posting the beautiful picture of Wendy. My eyes well up thinking of her being gone now. Really hard to take.
Hope you are doing well. You are missed
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SheilaMarie,
Come join me in a pity party! I've been feeling the same way - these things ebb and flow depending on how our bodies are feeling, I think. It's terribly hard to maintain a positive outlook if you are in pain, sedated with pain meds, or fatigued from cancer treatment.
I can't tell what treatment you are on now, but if it is hormonal, that can also play with your mind. Please talk to your medical team about how you are feeling. Honestly, there are interventions that can help.
You can try switching up pain meds to get a more even delivery of relief throughout the day. If you aren't on an extended release pain medication, the highs and lows throughout the day can really wear you out. Bone mets hurt. You aren't making this up.
A lot of us get benefit from ritalin to address treatment fatigue. I would not be here without it. If I'm this fatigued on it, I would probably not have the energy to breathe off of it. I have heard of some folk taking Provigal (sp?) for the same anti-fatigue effect.
If you are on a chemotherapy, simple anemia can truly mess with you. That's my particular struggle. According to the numbers, I'm mildly anemic, so MO won't intervene, but it means that I'm short of breath and too tired for most of the day. I'm seeing him tomorrow, and we are going to have a little talk about quality of life, and all that.
My point is that you don't have to feel bad. Well, there are a exceptions to that, but unless you are end-stage there are many interventions to get you back on your feet mentally and physically. I used to feel bad about taking a pill for this and a pill for that, but my attitude has changed completely. I feel like taking all the pills now if it'll help me get through the day well.
Let us know how you re doing. Do you have someone you can talk to? PM me anytime, if you just want to talk, or anything.
Cyber-hugs,
Jennifer
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