Bone Mets Thread
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Lulubee, I recently discovered brain mets and had no symptoms, I had a multi day migraine but it wasn't near the location of the mets, I suspect it started as a pain/tension headache from my radiated breast. Neuro docs said they were too small to cause any symptoms too but I believe brain MRI would be the test for that instead of PET, of course docs differ. Side note, I think I read somewhere that brain mets may not cause a rise in TM's like other parts of the body. My CA 15-3 two days after brain mets confirmation was only 12.
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Lullubee -
So sorry to hear about your progression. Glad you are back on treatment.
Will a Pet scan look at your brain? I have never had one. In the past, my doc has not ordered an MRI unless I had symptoms. .However, it doesn't hurt to ask. I have heard that some people do not get symptoms with small brain mets.
Persistent headache and word finding/memory issues were symptoms that prompted one at one point. It was most likely side affects of medication. Nothing was discovered in my brain at that time.Sudden eyesight changes are also a symptom warranting an MRI.
Anyway - long story short. Have you had a recent bone scan. Any new skull mets?
The thing about CT scans and bone mets. Bone mets can increase gradually over time. Only significant increases are reported. From one CT to the next, if a large change is not seen, stable disease is reported.However, this can still increase your overall tumor load. Some tumor markers also go up with general inflammation.
Hope this was helpful.
Good luck back on Taxol. Take good care.
-Jee Nee
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Lita57 -
So sorry to hear your symptoms are back. Was hoping for you to get a break for the holiday. Let us know how the MRI looks.
Sending caring thoughts your way.
JeeNee
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Ct scan today!! Am nervous as my tm’s have inched up into the 70’s
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GracieM,
Hope all goes well with your scans today! Praying for good results.
Ronnie
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Thinking of Babs tonight. Hoping you get on that plane and see your DD
I’m on my second round of antibiotics. Trying to keep this viral thing from turning into pneumonia. It’s pretty keeping bacterial in check I guess but I am coughing from my navel.
Doesn’t help the ribs etc. no call on MRI. What was I thinking it’s a holiday week.
I had an interesting talk with my primary today. We go back 30 years. I am able to say things to him that my mo doesn’t get. Maybe because he knows the family and me. After he assured me I wasn’t going to expire from this ridiculous cold we really got into what treatment I am willing to pursue and quality of life Issues. I went there to get an inhaler and listen to my lungs and ended up discussing my decisions that may be ahead. Kind of weird but comforting.
My DH will not hear anything like that, my children want me to get 3 more opinions and the mo always has more in her bag of tricks. Somehow tonight I feel calmer about the progression because someone listened to my basic fears of “ how do you know when you had enough and who do you tell? I have no answer but at least I said it all out loud.
Hoping you all have comfort and peace tonight.
Maire0 -
Maire. I’m going tomorrow night come hell or high water. I hate this fuing disease. I had my CT which they rushed due to my symptoms. They took my CEA also for this reason. Well CEA more than doubled in 3 weeks. CT shows progression mainly in liver but also in chest. They didn’t see anything in my stomach The NP thinks my distended stomach could be a muscular issue. She’s having the radiologist recheck the scan. Today when I saw her she thought it could be a hernia. I’ll be off the trial. I come home Tuesday night and see my mo Thursday morning ( she’s away this whole week). Thursday night I go back on Halaven. This sucks!!!! I just hope when my dd sees me she doesn’t realize that somethings wrong!!!! Thankfully I’m good at make up!
Bab
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Babs-So sorry to hear about the progression! I'm glad that you are going to Paris anyway! Has anyone talked about the possibility of the new drug Abemaciclib (same class as Ibrance-but, different) It supposedly has been successful in heavily pretreated people. The study was called Monarch if you want to read about it.
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Babs you are one tough lady .. I say that with awe and admiration. Wishing you lots of hugs from your DD. Hope the wind is at your back .. there and back. Mair
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oh Babs, I’m so sorry to hear of your progression! Going to see your DD will be good. It will give you some distance. You are in my prayers!!
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Maire67, I have the same thoughts. I think I will know. When qol is so poor, I’ll be ok with saying stop. I completely understand what you feel. I really think my DH and kids will be ok with it. My DH is very outspoken about right to die. (We are not in a dwd state though.). My stepmom made the choice to stop treatments and everyone was supportive.
Babs, so sorry to hear of your progression and hope your trip to Paris is lovely and comfortable.
Happy Thanksgiving to all.
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Babs, go to Paris and don't pack the cancer. Have a wonderful trip and take lots of pictures to share.
lulubee, in any other universe you'd be celebrating those results. Wishing you wisdom as you sort through your options.
Gracie, I had my CT scan today, too, getting results Friday. When I had my scans at 2 months on Ibrance, my sternum and ribs were intermittently sore. Results then were mixed, lung, lymph and bone mets stable or reduced. But ribs were "inflamed" and a 6mm something showed up on my liver. MO wasn't convinced that it was disease progression but ordered another scan in 2 months, which is what I had today. I'm actually feeling so much better in those two months, no pangs in my chest and even gained a couple of pounds back. It would be such a blow to fail I/F after only 5 months, but trying to brace for the news, and get through the holiday with a shred of sanity.
Wishing all the US women a wonderful Thanksgiving. And to everyone on these boards, I echo Claudia, you're on my list of things to be thankful for and I send up prayers daily.
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Babs...I admire your spirit and courage. You deserve to have the best time ever. Go for it and love every moment
Lulubee...I'm so sorry about progression as well. I think someone else asked this question. Wouldn't a brain MRI be the way to go?
Gracie and Jaylea....good luck for your results. It's so hard waiting.
To all of you in the US, happy Thanksgiving from Aussie me xxx
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Lulubee - You've got a few options …
1) As you know CA27.29can be wrong, and that has to be considered.I've read a couple of papers that suggest these markers are particularly unreliable when they are below 50.Although you have seen a correlation the truth is that the correlation can stop at any time.You may not have progression.
2) You have a met where they haven't been scanning … the brain. I am not an expert on brain mets or whether they even show up in TM's.But I will say that if you want a scant that includes the head, you can get one covered by insurance given the rise in TM's.It will require a justification.The nonsense spouted by medical practitioners to avoid work is endless. If you want your head in the next scan because you need peace of mine, kick a@# and take names until you get it.If rising TM's is not a "symptom" that needs to be followed up on, I am not sure why we measure TM's.Smelling BS from that nurse, is what I am saying in a nutshell.
3) You have developed ILC in addition to IDC.I know nothing about whether you can develop ILCafter being apparently IDC for a long time but given the weirdness of cancer, I don't see what not.It is a question for your oncologist. ILC is poorly detected by scans but it can be seen in a CT with contrast by radiologists who know what they are doing.
All I can say is to keep drilling into the diagnostics until you are at peace.I failed to do that in the spring. I got tired of fighting with my clinic for proper diagnostics and I am paying for it.
Gracie - I hope your scans are awesome but you remember that anything you get back you can deal with.We're here.
Hey Leapfrog - Thinking of you and the bold and wise changes in your life.How is the plan going?
>Z<
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Thanks to all who responded to my conundrum. It really helps to hear other perspectives.
Illimae, that is interesting about brain mets not affecting markers. I do the CA 27.29, so I wonder if it's the same across the board.
JeeNee, my last bone scan was in January. My research nurse also mentioned that we ought to get a fresh one soon. I get what you're saying about CTs and gradual progression, and that does concern me. I always had PETs before this current year's insurance switch. In this research trial, we have to get CTs (and since the trial is paying for CTs, my awful HMO does not want to pay for ANY scans unless my team pushes back). I am having a hard time taking these CTs seriously, though, because I am so accustomed to comparing my SUV numbers, which feel more like facts than the fuzzy math we get from CTs. For instance, we have to keep an eye on my pericardial fluid levels, and at first I thought the CTs every 8 weeks were taking care of that. Then my onc told me no, a CT would only show a pericardial effusion after it had already accumulated a good deal of fluid, so she wants echocardiograms. That just added to my anti-CT bias, I guess. But I do know they are preferred for certain types of investigations.
Z, I presented ten years ago with both ILC and IDC, so the ILC has been there all along. It's the ILC that recurred. The IDC has never shown up again since my BMX in 2007.
To clarify about my research nurse, she has been on my team for seven years and she is awesome. She just knows how awful my insurance has been because she's had to fight them for me all year, so she had reason for saying that about them not approving a PET without *what the HMO would consider* valid symptoms. She did quickly add that we would submit the rising TMs as a justifiable symptom and keep pushing back. She and my onc are both rockstars and they really go to bat for me, so I cannot complain.
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Z.....from my perspective my plan is going well. Somehow I don't think my husband shares my feelings about it though. He's now desperate to win me back. He accepts I can't live in our house because as soon as I'm there I'm an invalid again. It's just too BIG! I won't give up being independent, which I can be in this tiny apartment. But, as I said to a friend today, a promise can't make up for forty years of selfishness, especially as he has a history of broken promises. I feel glad and sad. Glad to have this feeling of freedom and starting out anew and that we won't be doing all the nasty stuff like divorcing and dividing up property or any of that, but sad that, despite several warnings, he just wouldn't give up with the lying and deceitful, selfish behaviour. What a shame it is because the man I fell in love with was funny, kind and generous and I know he's still in there somewhere but the selfishness and domination became too much of a habit. I pray that my disease will remain stable. I pray with all my heart because I so want to keep my independence after so many years of being helpless and ill before my diagnosis, operation and treatment.
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Babs - Progression is on the short list of words we don't want to hear, but our bodies do tell us without words. Hoping your meds keep you comfortable during your visit to Paris. Seeing your daughter is the best medicine right now. No one wants chemo, but if it helps you maintain QOL then it's worth considering. You have something big to live for with that new baby on the way!
Leapfrog - IMHO, people become more of who they really are over time and unfortunately selfishness is one of those that can damage a relationship irreparably. I think we MBC folks need to be selfish sometimes in order to maintain our QOL and whatever health is left to us. Living a peaceful, drama free life is very attractive!!! Do something you love every day and relax knowing that the drama is somewhere else for now.
Welcome to the newbies! So sorry you have joined us, but you'll find great information and nice people here!
I was out of town for six months and it was so peaceful. Drama is exhausting regardless of love. I have the moving company on speed dial just in case.
Zarovka - Thank you for leading the way on self advocacy when dealing with doctors. No one cares as much as we do about our disease and being ignored is unacceptable. The Y-90/TACE discussion is fascinating!
Happy Turkey Day to those in the U.S. We need a happy day...no tweeting allowed.
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lulubee my onc always said to me numbers are always accurate, I know they have been for you but maybe just maybe it's really nothing. Just the pre meds wouldn't that be great? How are you feeling ?
Babs why does this crap always happen when we have something important planned. I hate this f&@$€king disease too. The roller coaster that always lands at the wrong gate. Last year I was supposed to go to Germany but my liver had other plans and my onc said no. If she ever tries that again she will get an earful. Get yourself some new drugs and get yourself back to your normal self. Get over there and enjoy your family a new baby and seeing everyone will help your health. I swear when my daughter comes for a visit I perk up immensely. Take lots of pics Babs I'm excited for you.
Speaking of trips I planned another trip to Costa Rica in February and this time my daughter the biologist is coming with me and my husband. Can't wait I just hope I'm able and don't wreck it for everyone else. Going to do a bit of outreach and introduce dragon boating to the breast cancer woman of San Jose
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Wendy, that's just awesome, will be a great trip!! My daughter is studying biology too, but she's become distracted with her alarm over global warming and is now considering environmental sciences (except she's going to graduate college in the spring in developmental bio), so yeah, its such a critical time for young people thinking about a lifetime career- how old is your daughter?
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JeeNee, good point about the tumor load..
lulabee, I think it is MRI for brain scans which are super expensive. My insurance denied me not too long ago. A TM of 48 would be a dream come true for me. Mine hovers around 700-800!
Best wishes Gracie and Jaylea for good news!
comfort and peace to you too Maire.
babs, I guess I missed the part that your trip was a surprise. Very fun! It's for her birthday right. The baby still has a month or so to arrive? Feel better!
leapfrog, I am so glad to hear you are feeling better about your situation today. Way to take the bull by the horns! Enjoy your new earned independence.
Wendy, that trip sounds fantastic! That you are doing an outreach program too is so cool. I'm double crossing my fingers for no glitches.
Hi kaption and Kathryn! Happy Thanksgiving to all!
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Hi Artist! I hope your pharmacy issue is resolved ASAP! That’s really ridiculous.
Hope your Thanksgiving is lovely and filled with love.
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Wow Iwrite....what you say is so sensible! I was having a chat to myself about that last night and that's more or less what I said to me!
This is one of the good things about living alone, the great conversations you can have with a person you totally agree with....yourself haha.
Love and hugs to everyone. Sorry I can't check out the thread properly tonight but I'll get back.
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Regarding pain girls I have been taking Endone twice per day and slow release Targin (OxyContin ) twice per day since my bone met diagnosis 1 year ago. Mypain level was 10 and now my oncologist has said he wants to keep it around 2. I can do most things taking them and I haven't had to increase the dose at all, If I didn't take them I think I would go insane from the pain.
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Delvzy - Three cheers for successful pain management. Thanks for sharing your experience.
>Z<
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I want to share the look on my dds face when she finally realized it was us walking over to her table!
Happy Surprise 40th. She was totally shocked!It worth all my discomfort!!
Babs
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Babs, it is just priceless! What a gift to your daughter
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Babs. You are a rock star. The perfect present for your daughter. Those smiles are priceless. Enjoy. Maire
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Babs, I am so glad you were able to make the trip. I can imagine how excited your daughter was to see you. You must have made her day! I have no doubt that you enjoyed being there for her 40th birthday. Please take care of yourself.
Hugs and prayers from, Lynne
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Gracie- Hope all went well with your scan. Hoping the results are good.
😊JeeNe
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Marie -
Glad you could get support from your primary care. Sounds like you had an important talk. These are real issues we face. It’s good when someone we trust listens.
Wishing you peace.
- JeeNee
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