Bone Mets Thread
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Want to give you all a laugh We arranged for a car rental every weekend but they gave away our car. This is what they gave us!!!!!
I think they should have paid us!Babs
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Babs, omgosh so, so funny.
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Babs that is so funny
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Babs, it looks like one of those vans they transport prisoners in.
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Hole in one. I was the prisoner. What a bumpy ride!!!!! That was the only vehicle on this holiday weekend. Gave our friends a good laugh when we pulled up to their gorgeous home yesterday. We decided to turn it on this am. I wonder why?!?!
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Babs, that is too funny!!! Thanks for the laugh!
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Deanna
Thought we all could use a laugh!
Babs
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Important news for Her2+ gals! MomATT, are you around and reading?
http://www.bcrfcure.org/blog/lab-study-shows-drug-...
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Carol, I am glad to see you back. I was worried about you. I am glad your scan results were good. We have had very warm weather here in NH, too. My DH and I traveled to NY state for a two day visit with my son and his family, and it was in the 90s there. My grandson had a soccer tournament on Saturday. Luckily, we were able to sit in the shade, but I felt bad for all those 11 year olds running around in the heat. They did have water breaks, but they were really hot by the end of the last game. We arrived back home in NH an hour ago, and it is down to 55 degrees here now. Crazy weather!
Linda, Thank you for the Patty update. I was really hoping that she was doing better. Do you know if she has traveled to the NCI cancer center for a second opinion? I hope she will do that soon if she hasn't already.
Ebru, It is nice to see you here. I am happy that you are back to the boards because I enjoy reading your posts.
Babs, I had a very good laugh at your posting. I have been imagining the comments I would have received if I had shown up at my son's in that elegant vehicle. I don't even know what to say. I AM STILL LAUGHING. Thank you.
I have an exciting week ahead - Zometa on Tuesday, pre-op EKG on Wednesday, riding 1 hr 45 minutes each way to visit my 97 year old mother-in-law on Thursday, and laser blast for kidney stone on Friday. What a life! I bet you're all jealous.
Lynne
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So very jealous Lynne! NOT!!!!!
When I sent that photo to my friends, most of them said they would never have gone into that van! I guess they have no sense of adventure in their souls!!! With what we deal with, riding in that van was a piece of cake and just a great source of laughter!
Babs!
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Babs, you were creating memories that just aren't the same with a first class town car.
Lynne, the laser blast for kidney stone sounds scary, painful.....unknown....
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Deanna, I'm one of those HER2+ gals, so thank you for sharing that study. Good news and information to have in my back pocket for the future.
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Hi ladies...I'm new here...just found out I have bone mets after being originally diagnosed with BC in January of 2011. After several weeks of back pain and scans , I got the news😢 I have started rads, had a bone marrow biopsy last week and will have an appt with my ONC on the 10th for final plan. I 'm still in shock and it's hard to process everything....treatment options include a clinical trial or more standard therapy...should I keep working or not ?....how far ahead do I plan in the future? You seem like a very strong group of women who are living life to the fullest..I'm trying to get there 😓....I was really enjoying the past few years when I didn't think about BC every day...now it's time to hit the reset button and try to manage all this....thanks for listening
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Stilts
Welcome, I am sorry for why you are here.There is great support and information here. You are asking lots of good questions. My thought is give yourself sometime. See what your treatment plan will look like. And check on resources for health insurance and income. Check on the life does not end with stage 4 dx thread. There is lots of hope there.
Hi to everyone. Christina you are in my thoughts. Patty I am saying hi and hoping you have days to enjoy your family. Carol glad you are back with good scan news. Lynn good luck with the darn kidney stone. Deanna thanks for having such good information so frequently.
I am off to the garden store. I have to replant basil. It did not like our 40 degree nights.
Peace to all
Mary
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Good morning all,
Stilts - a warm welcome to you on this thread, but sorry you have to join us. This is best place to have info, support and knowledge. The first few months after a Stage V dx are the hardest. It's an emotional roller coaster and tests here and there. Once you have a tx plan in place, you will feel much better. Many gals continue working. And I say continue to plan ahead! Jump in any time, we're here for you. Keep us posted and BIG hugs to you. Good luck with rads, they brought me great pain relief.
Lynne - Oh yes, very jealous! Wishing you the very best this week. Patty didn't mention anything about the second opinion. I will ask her the next time I text her.
Babs - I can just picture you riding in that van! Yes to adventurous souls!
Cristina - how was your getaway?
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Deanna - I am also Her2+ so thank you for sharing that article... sounds promising. I'm behind on this thread (again).... went on a little vacation and decided to take a BCO break as I was on an emotional downward spiral because of Nancy.
For those of you that I'd been discussing Xgeva with and why I have been on it every six weeks for over three years when some stop after two - my oncologist was out the week before last when I went for my appointment! So bummed - I had planned to question her to death on the topic. Anyway, I have a new meeting with her on June 7th, so I should be able to share her perspective then. Stilts - "welcome" to this thread... this is an incredible group of women that are a wealth of information. I'm sorry you had to join us, but you will find friendship, support, knowledge and love. It's so hard not to completely panic when you are initially diagnosed but it DOES get better. Not knowing what the plan is is the hardest part.. once you have a treatment protocol in place it will be a little easier. My vote - keep working if possible, and keep planning for the future! You will find so many here that were diagnosed years and years ago, so don't lose hope.
XO
Andi
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Stilts, for ER+ there are quite a few very effective standard therapies available and I will be surprised if your ONC recommends a clinical trial at this point. If you have bone only mets, the prognosis is actually better than soft organ involvement.
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STilts. Welcome and sorry you had to join us. Before you make any decisions take a deep breath and find out your treatment plan. I find work my safe place so I'm working full time. It makes me feel more "normal." You'll find the women here truly amazing. They're all my sisters now. They're a wonderful source of information, hope and support.
Babs
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Hi Stilts- So sorry you had to join us😓 I'm also have ILC and they Are famous for loving the bones. I call it sneaky ILC as I went on an 18 year remission before it came back only to bones and not back in breast!! I know how you feel but I promise things will get better.
My advice to you and anyone of us that is in this situation to get a second opinion on treatment with a breast care treatment center if at all possible. ie: MD Anderdon, UCLA, Dana Farber. In my situation, my treatment plan was much different than what my local MO had suggested for me. The pathologist at Dana Farber had a complete different interpretation than local patholgist which changed treatment plans. One thing for sure they would not have done rads to a met I had in the ribs.
I have been on letrozole (was on that back in 2004) and Ibrance. It's a pretty easy protocol and I am responding well.
Please feel free to ask more questions. There is so much light at the end of the tunnel that you will need sunglasses. 😎
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Babs- The van!! That was a gift for all of us to see. Made my day and the humor was just what we needed!
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Stilts, welcome! You will learn more here then any doctor could ever tell you. It takes quite awhile to absorb the shock of this...I know firsthand! You will find that there are many treatment options available. Sounds like you are on the right track, one of the first things my onc did was send me for a bone biopsy. I am 13 months our stage 4, on Ibrance and doing well. Keep us posted on your progress.
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Well I must say these messages have made me feel better already 😍 I needed something positive after being in panic mode for several weeks...I really appreciate your input. The clinical trial I am considering is Phase 3 double blind placebo controlled with Entinostat and Exemastane ...have more reading to do before my appt on June 10th...this drug was given a "fast track" by the FDA...apparently there is a resistance that can develop to AI 's over time...I have been on Arimidex for almost 5 years ...lots of ?'s and of course I could be receiving the placebo but would have very close monitoring....PS....I'm a hospital pharmacist which believe it or not isn't helping my information processing right now
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Scanxiety! I just got my first CT scan in several months, and my onc included the head this time looking for ONJ. I think I may have it, actually.
I'm rather ticked, because I've been trying to get this molar fixed for over a year now! It takes so long to see the specialists, and once they decided that my regular dentist could perform a root canal I think it might have just been too late. Not that the tooth is fixed...four root canal appointments and the infection keeps coming back.
Anyway, my appointment for the results is next Tuesday.
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Hi All,
Just a quick note about my MO's appt today. Even though the MRI & CT scan came back as stable, because the bone scan came back showing progression, she seems to feel that it's progression? Why? Because I had a very minor increase in pain for three days & took tramadol instead of t/i combo.
She feels that I should travel to Vancouver to be put on the Ibrance trial. Now I would be ok with that, but I really feel like I would like to continue just the way I am right now. But she says that we should do something before it really progresses, like not wait for 3 months til we get back from our trip. I'm so depressed tonight, I know it's partly because I'm exhausted. We didn't get home from my 3:30 pm appt until 8pm because she was an hour late. I'm off to bed, I'll check back in tomorrow morning. But I would love your thoughts. thanks all, cheers, dee
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Dee, My first thought is get a second opinion. Most MO's rely on CT and MRI more than bone scan so this is puzzling. Where does the bone scan show progression and it is identified on the CT and MRI's? How far would you have to travel for a second opinion? Still keep your trip in your plans, as it is very possible that you will be able to do that.
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Milaandra, nice to hear from you. Praying for excellent scan results and no ONJ. How have you been feeling?
Dee, I'm sorry but I disagree with your MO. Perhaps you need a second opinion. I've been told repeatedly that they get a clearer picture when comparing to the CT. My last bone scan showed an area which appeared to be larger on my L5. When they looked at the CT it is completely healed. I was told that when a met heals it can sometimes appear larger on the bone scan and even if there is increased uptake or activity this can all be due to healing or just inflammation. As a matter of fact a couple of areas that lit up on my bone scan did not exist on CT. Also how accurate have your tm's been for you? Has your Alkaline Phosphotase increased? My MO looks at that too as indicators for increased activity in the bone. I hope you can get this all sorted out. I wouldn't want to be hasty in changing treatments if I didn't feel 100% sure.
Hugs, Annie
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Dee, I would definitely get a second opinion. I just did a quicky google search and came up with a website that reads:
Computed tomography (CT) scanning and magnetic resonance imaging (MRI) are useful in evaluating suspicious bone scintiscan findings that appear equivocal on radiographs.[10, 11, 12, 13] MRI can also help in detecting metastatic lesions before changes in bone metabolism make the lesions detectable on bone scintiscans.[14, 15, 16]
http://emedicine.medscape.com/article/387840-overv...
So, if an MRI can detect lesions before a bone scan can, I don't know why your doctor would be relying on the bone scan, which, as I understand it, is a good cheap basic test to start off with...not a definitive diagnostic tool.
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Dee,
I have to agree with the others here. You need to get a second opinion. I think you will have to travel a bit to get one, right? It would be worth it for your peace of mind. I read just recently that although bone scans are very valuable for detecting bone mets, they can give false positives, and healing will sometimes look like progression. The article went on to say that a CT scan and/or MRI should be used to clarify suspicious findings. I wish I could remember where I saw the article. I will try to hunt for it. I am not an expert, but it seems to me that three days of increased pain should not be a significant indication of the need to change treatment. With that said, if a second opinion agrees that a change is needed, the Ibrance trial is certainly a good choice. As you know, many people here are doing really well on Ibrance. I hope you can go on your trip either way.
I hope you are feeling better and that you were able to get a good night's sleep. I can understand why you were exhausted last night.
Big (((hugs))),
Lynne
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Milaandra,
I had similar molar troubles and ultimately ended up pulling the tooth - I was scared to death of ONJ but so far so good. Good luck to you. This is not a fun road to go down.
Amy
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Hi Dee... I'm sorry you are going through this and I agree with everyone else; that if possible, I'd get a second opinion, although I know you have to travel a long way to get one....and that the bone scan doesn't necessarily mean progression. Three days of pains seems fairly insignificant to me. My MO won't make any decisions/reach any conclusions unless both the bone scan and the CT scan appear to cause alarm, and she then moves on to a PET scan. (this is what she's told me...I haven't actually been through that yet.) Don't cancel your trip just yet...... can you get a second opinion without traveling? Is there somewhere else you can have your scans sent, and then arrange a call for follow up and feedback? I wouldn't want to change treatments unless I were 100% sure either.
I hope you were able to get some sleep last night...I am sure it seemed totally overwhelming. Thinking of you and sending a big hug....
XO
Andi
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