Bone Mets Thread
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Good morning all,
Having my morning coffee and reading your good wishes this morning. Don't know what I would do without all your support. Thank you. Appt is at 11:00.
Dune - holding your hand as well this morning.
Sending hugs all around. Will post results this afternoon.
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Sending positive thoughts to you Linda. Seems your appointment would be right now.
Dune, my sweet tooth is often my down fall. I know the comfort I find in cake and cookies feeds my soul, more than my darn cancer cells.
Cjanet, So glad you had a. good day. Seems like you have been through a lot lately. Those ordinary days when I am an active mom, friend and partner are my favorite.
Hello to all. Our October has been bright and sunny and I am still getting eggplant out of my garden. I wish blessings. for all of us this week.
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Hi all,
Mixed results. First, my Onc apologized profusely for having omitted to include the cervical region on last scan request. A scan is ordered within the next 2 weeks. So, on the one hand, 5 new mets in spine confirmed, very small. The thoracic spine mets are stable when compared to May 2015. The Sept CT and bone scan did pick up the lower region of neck where there is progression of the C5-C6. No fractures. On the other hand, improvement of iliac met, substantial decrease of axillary lymph node met and pubic bone met shows some healing and consolidation of the pathological fracture. Never thought that would happen and quite happy about that! Plan is to wait for results of the CT scan of neck to see if C2 is stable or not. If that is stable, she wants to stay with Femara because "stable" globally (improvement vs progression). If progression of C2, we are thinking of going into the Sandpiper clinical trial (Faslodex + Taselisib or placebo) or with Faslodex alone depending on whether the trial will accept me (clinical.gov says no longer recruiting in Montreal but her access says differently - she even called and there is a possibility I could be included). I have mixed feelings - I'd like to stretch Femara for as long as I can. Any thoughts/opinions are welcome.
My Onc is pregnant again! Not too happy about that - she will leaving on mat leave in December for about 9 months. I just hate switching Oncs again.
Edited to add that we are switching from Aredia to Xgeva
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It's a toughie Linda. Staying on Femera as long as possible is always good, but if they are in fact new mets then maybe Femera isn't working anymore. Boy it's hard to know, maybe decide after the CT? Can you have those new mets radiated? Because the others are healing. I have to run out right now, but I'll check in later & see what others have to say too. Cheers, Dee
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Linda,
Mixed results are always so maddening! But it does sound like there may be enough stability (provided C2 is also stable) to stay put with Femara. Especially if your quality of life is good, with minimal side effects. I've been on Xgeva for quite awhile (recently went from every 4 weeks to every 6 weeks), and have had no problems. Hugs to you… with best wishes for more and more stability!!
I read all of you every day, but often only have the energy to respond to the last poster. Good news is I will find out today if I'm stable enough to stop chemo and move on to Ibrance/Aromosin (weird combo… haven't read of anyone doing this regimen). Anyway, my thoughts are with you all…
Rose.
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Linda, that's a tough call! So sorry about the mixed results but it's good to see you have some improvement in areas as well. Of course I would want to stay with Femara since like you said the longer you can stay on it the better. I would wait to see what the CT scan shows in your cervical spine. Sorry to hear your onc is going to be going on maternity leave again. I know it's hard to adjust when we're comfortable. Big hugs to you, Annie
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Linda, what's with the mixed results? How frustrating! Of course, I'm very happy for you that there's so much good news, but how confusing that you also have some new areas, along with stable and improved areas. Is that common? I guess I'm too new at this to offer you much of an opinion on what to do going forward. I know when I thought I felt stable in spite of rising TMs and was very slow to get scans and switch regimens, I almost regretted it because I suddenly got very bad (lots of pain) very quickly. But then I also realize that I got another 4 to 6 mos. in there (while on Anastrazole that probably wasn't working much, if at all), but who knows if some cells might have moved somewhere else or had the opportunity to get more aggressive during that time? One thing I can tell you is that I love Faslodex! Of course, I'm only starting my 3rd month on it, but my local onc tells me he has women who have been on it successfully for many years. So if you truly have some new spots (just thinking out loud here), maybe it's time to shake things up with a different tx?
Rose, good luck today! Hoping your results are stable and that you can stop chemo!
Hope your tx went well today, Dune!
It's finally cooling down here! YaY! Neutrophils too low (900) today (Day 28) to restart Ibrance. Seeing my UCLA onc on Thursday.
Big HUGS to all!
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Thank you Dee, Rose Annie and Deanna.
Deanna - I have no idea if this is common! I started another thread to get a larger audience. I don't remember seeing cases like this on the boards but, hey I can't be that unique! LOL
Rose - I see you've been at this mets' business since 2009. Does this sound familiar to you? I hope you are stable and stop chemo. I've searched Aromasin + Ibrance and I don't see much other than a clinical trial (Pearl 3?) that uses that combo with Xeloda.
Dee and Annie - I agree I have to wait for the neck results and see. But if I stay on Femara, I will insist on having scans in 2-3 months. Not 4 months for sure.
Oh this is mind boggling....
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Linda,
Yes, it sounds very familiar. In fact, I just got similar results from my MRI. Not to boggle your mind even more, but my oncologist often says she has trouble distinguishing "healing bone mets vs. active bone mets." Talk about maddening! We had the same conversation today and I requested a PET-CT based on what I read on a thread here ("Would PET-CT always show ILC bone mets?"). I haven't had a PET scan since 2010. The US insurance companies apparently don't like them because they're costly… don't know anything about PET-CT's in Canada. Anyway, I got sidetracked here but clearly there's a lot going on with these "mixed results," and a lot to sort through! In my case, I guess I'm stable enough to stop the chemo and begin Ibrance/Aromasin in Nov. Good news, yes, but of course I'm suspicious!
Hope I didn't make you more frustrated. As long as you're being closely monitored, I don't believe there's a right or wrong answer as to whether you stay on Femara or move on. I just wish these scans would give us more definitive answers about our mysterious bone mets.
Deanna, thank you for your wishes! And I hope your Neutrophils bounce back soon so you can restart Ibrance. I will have to catch up on that thread!
Love to all…
Rose.
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Thank you Rose. My Onc also said it is very difficult to track (for lack of a better word) bone mets. I thought about a PET scan as well, but it's next to impossible to have one here in Quebec. The waiting lists are so full for our public system which has very few PET equipment. Of course, I could get it in a private clinic but the cost would be $2,500. Being sick is expensive. Faslodex for example is not approved in Quebec (although approved by Health Canada). Luckily, my former employer's insurance covers it but at a cost of $420/month. One has to pick and choose where to spend. Ok, I got sidetracked here too... Best of luck to you with your new combo.
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Linda those results are so frustrating! I'm glad to hear of some healing going on but what does that mean in terms of your cancer? Do you have more than one type if some mets are healing but meanwhile new mets are appearing? I would wait for the next scan before making any decisions on changing meds. I am into my third month of Faslodex and also restarted Ibrance tonight. Massive headache, but that could also be work related. The state came today to inspect our dialysis clinic and will be here tomorrow as well.
Wishing everyone a peaceful night and a good morning tomorrow. I must say the weather was beautiful today
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Well Linda some mixed news but a lot of good. Sounds like you have a super oncologist and she is really on the ball. I switched already once it's not easy to get everything organized but I'm sure you will manage. I wish I knew more about all these different drugs, but you are getting all sorts of good advice. I would want to see all the scans. So also the CT scan before I would make any decisions regarding medication changes. I know what you mean about wait times for scans in Canada it really is such a money game eh? I'm sending big hugs to you.
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Linda, count me in as someone who gets similar results all the time. But I don't think it is common for most. I have never been NED and I always show progression. My MO and RO explained that bone regeneration and cancer growing or new mets elsewhere can happen at the same time. It sometimes also depends on the timing of the scan and what it happened to pick up. Are you getting a CT of the cervical spine or MRI? I always get an MRI of anything spine related as my RO says it gives a much clearer picture of what is going on. Having just said that, comparing CT to CT may be the best for you.
Christina, good that you can start Ibrance again. I always get migraines with Faslodex. That may be casing your headaches.
Rose, sounds like we have similar monitoring. I haven't had a PET in 3 years but MRI every 3 months of total spine and CT every 4-6 months.
Good day to all.....Linda
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Good morning all,
Thank you Cristina and Wendy. Cristina - I hope your headache subsides, I simply loathe them.
Wendy - Money game indeed.
Lindalou - I'm having a CT scan to compare with the CTs of May and Feb of this year. Bone scans were also done in Sept, May and Feb. She wants to compare with similar imaging. Hospital just called and scan is next Wednesday. I suggested an MRI but I guess it could be the next step. I'm thinking of maybe getting in touch with my Ortho and ask him to review the images.
Dune - I hope your tx went well yesterday and got a chance to see the nurse.
Good day to all
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Morning all!
I'm off to get TM's done & my CT was moved to this afternoon. Good thoughts please. I haven't found any waits where I am, but maybe we just don't have the number of people waiting for tests. RO called on Friday that she was booking me for a CT & I'm having it today. Rads are next Friday.
Cristina, hoping for no headache today.
Kind of overcast here today, they're saying possible showers, but we've heard that all summer & nothing. As my neighbour likes to say "it's drier than a popcorn fart"
On that note, have a good day everyone! Cheers, Dee
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Dee - Sending you good thoughts!
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Dee - Sending you heartfelt, supportive thoughts. I've heard that saying before but have no idea what a popcorn fart is.
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Sending you positive vibes and all kinds of good ju-ju, Dee!
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Dee, you go girl!! Myra
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I'm in a bit of a battle with my onc's office right now. I want to see my doctor after the results of my MRI next week are in. The office said the nurse will call me with the results. Well she's the same nurse who totally misread my PET/CT results a week or so ago so I said no. I want to see the doctor and not hear by phone from anyone, especially if we're making plans for rads. Turns out my onc will be on vacation until November but I still insisted on seeing a doctor and not hearing from the nurse by phone. So it's a waiting game...I know there are worse battles out there but I spent a lot of emotional energy after hearing bad news from the nurse, which wasn't as bad as she said, so I'm not going to subject myself to that again.
I don't feel I'm being unreasonable.
Amy
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Not unreasonable at all, Amy. I don't think most medical staff have any comprehension of how a careless word or two -- no less a misinterpretation of a scan -- can send us spiraling downward. You are totally right to protect yourself from the possibility of incorrect or incomplete information!
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Amy, You are right on track with wanting a doctor to give you results. You are not unreasonable at all.
Had my faslodex shots a few hours ago and my nurse who has given them to me for 4 years came too close to the sciatic nerve. Shooting pain in my butt and down my leg. Yikes. She felt so bad. I also have nerve root inflammation to L4 and S1 and I think that contributed to it. Went to Starbucks and treated myself to a Pumpkin Spice Latte. I was limping when I got there and they gave me a free one. Guess there is always a silver lining!
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Amy - Very reasonable request!
Lindalou - Ouch! Just what you need. Never heard of a Pumpkin Spice Latte.
I managed to get an appt with my Ortho on 19 Oct for a second opinion on imaging.
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Lindalou, I had sympathy pain when you described the injection. ouch...ouch...triple ouch. Happy Starbucks had a heart. LindaE, happy you have an appointment for the second opinion. That sounds like a smart plan.
Dee, good luck with your blood work and scan. I hope they're normal.
Amy
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Dee, hoping the CT scan went well and I'm sending all my positive mojo your way! When will you get results? I'm hoping the CT shows what is really going on with those mets. Best of luck with the rest of your rads.
AmyQ, you most definitely are not being unreasonable. I would insist on seeing the doctor too.
Lindalou, so sorry about your ordeal, that sounds so painful! How nice of Starbucks to treat you to a Pumpkin Spice Latte, I just came back from there and had a Salted Caramel Mocha. I'm sure it's going right to my hips as we speak. Prayers for your pain to subside quickly.
Linda, good for you getting an appt with your ortho for a second opinion on the imaging, you were very smart to do that. I hope you get some clearer answers to help you with your decision.
Hugs to all, Annie
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Thanks all for your great words of support. I got home late because my blood work got screwed up & had to have it redone. It was so wonderful to come here tonight after such a long day & see everyone's posts!
I don't get the CT results until next week when I go for rads on Friday. I will bug my Dr's ass't for my TM's tomorrow.
Amy, I don't feel you're being unreasonable at all, we've got your back!! Lindalou, How painful!! That's too bad, I'm sure the nurse felt bad, but you have to put up with the pain. Hopefully your delicious pumpkin latte did the trick. Linda, I think that's a good decision.
It's been a really long day, I'm off to bed now. Sweet dreams everyone! Cheers, Dee
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Hi i did not get to go thru any of the posts, sorry. I will come back to it soon.
Deanna if you see this soon, could you tell me again about the biopsy or blood test that you were telling me about? I mentioned it once to him, but i wanna ask agian and I forgot, I even went to the lab that does it, something with a G... do you know what it is? If you could let me know, because we are here now, and I would like to ask him about it. Thx a bunch
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Mommal - could this be it?
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Linda, how are you doing today? So sorry about the sciatic nerve issue. I hope it's a lot better today, but I can also imagine it might take awhile for the nerve to settle down. And how thoughtful of the Starbucks employee to notice you were in pain and to do something to make you feel better!
Momallthetime, glad to see Linda gave you the info you wanted. I'm not sure Hope ever reported back to us on the results of that test the USC second-opinion onc did. But she hasn't been on BCO for more than a week now either, which is concerning. Has anyone possibly heard from her?
Ouch to having to re-do the bloodwork, Dee! That's not fair at all! Praying for great scan & TM results!
UCLA appt for me tomorrow. No tests, thank goodness. Just a followup since starting my new meds and my ONJ eval and work.
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Hi ladies,
I had a rod inserted in femur 3 weeks ago in Boston. I just returned home to Rocky Mtns. on Saturday night. I have zero energy. Just took a shower and it wiped me out. I'm not sure how much pain meds-oxycodone I should be taking at this point. I'm finding I'm very anxious and shakyand weepy much of the time. I had pet/ct at Lahey Clinic. Showed no new involvement. But my ribs on the right are tender. Argghhh...i don't even know what I'm asking. Does this all sound normal? I don't know how to do any of this. I used to be so active, now a shower is exhausting and put me in bed! I was actually hyperventilating. My husband is trying to get home physical therapy for me. Please, any advice?
Rachel
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