Bone Mets Thread
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Hello good people,
I haven't posted in a while as I have been waiting for results from Letrozole.
Breast cancer 2011.
My first blood test, February 15, when I suspected something was up, showed CA 27 29 at 312 which prompted a PetCT confirming innumerable bone mets. Started Letrzole immediately after scan results. Had another blood test on April 26 showed CA27 29 at 311. Too soon to tell if the Letrozole was doing much according to the Onc. Just had another test on June 23 and CA27 29 at 295.
The number has gone down but not by a whole lot. I am grateful nonetheless.
The weird thing is that in the past couple of weeks I have had a lot of pain in my low back, leg joint, lower right side of stomach (sort of near the site of the cyst or fibroid that was seen on scan) and pain in ribs higher up than before on my chest.
Not sure what to make of the new pain. Letrozole? Flare? Mets on the move? My paranoia on overdrive? Any experience in this regard would be greatly appreciated.
My onc has now ordered Ibrance and I will begin that shortly to be taken along with the Letrozole.
Chats
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Chats - Any new pain that lasts more than 2 to 3 weeks should be investigated. It's very common to have scans at 3 or 4 months after dx. Are you due for upcoming tests? That said, what you mention above are possibilities but only imaging will tell and TMs are only one indicator and are not reliable for everyone. Healing mets can also cause pain.
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Linda,
My next blood test will be in July. The Onc wants to see what the combo of Ibrance and Letrozole will do. As I said, my numbers are dropping a bit and I guess that's a good sign. If they continue to decline - which I hope and pray they will - then I suspect we will do another scan in six months.
Apparently, for me, tumor markers are of some significance as they were well in the normal range for 5 years, then I missed a year and a half of follow ups as I was going through some very rough times in my marriage. Finally went for a follow up because my spidey sense was on high alert and I felt some weird pinching in my chest area when I bent over. I had a lot of joint pain in my right leg but I had a history of sciatica so I didn't think too much of that. Also have had a lot of low back pain due to disc issues. Surprise! Bone mets.
One bitch is that I had to wait five days to find out what this last test showed. Five days! I can't even imagine why it would take that long unless the lab is so busy they simply can't handle the volume. However, it was five days of on and off anxiety. I do my best not to think about it but given that I am on Letrozole which does have some effect on my moods, I have had some weepy moments and being scared.
Hate this sh##t.
Chats
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Lita every time docs ask D are you taking pain meds? They don't get it, it's absolutely as you said. She wants to feel the World, be aware of what's around her, she wants to participate, for that she pays a high price. She will ONLY take pain meds when it's really bad.
Oh my gosh, NAN that's just the best. There you go. Love the idea. Reading what you wrote on the Brain thread, pushed me to recheck DD's scan, just needed to be sure, let's see what her RO says.
Chats so sorry for what you are going through, at least Onco is adding new tx, good luck on your next scan.
Lindalou glad you are holding in a good place. You deserve it that's for sure.
Linda, finally you should be able to get a break. What awful symptoms. But gr8 that your numbers are better.
Z – yeah, a walk in the park, what is that? Actually, my mind has been on overdrive. I checked in last week to see if they got any info on the liver biopsy, so far it seems that she is still triple HER2, but all info is not in yet. Then I asked about Foundation One, and they tell me that it was not ordered, but another type of mutations test, but that one takes months to get answer, AND it's pretty much for research, I am like hmm that's not what Onco told me.
So waited till Monday, then sent back and forth a very political correct email to Onco, about our understanding that she gets her mutations checked, and I told her that in Dani's case waiting months, is really ages, time that she ain't got, like should we not take the opportunity to send tissue now that she went through this ordeal. So another day goes by, and finally today, she said, yes, we'll authorize that. So now 2 weeks later we begin again. Ughhhhhhhh. Every little detail, then there is another mutation PDL1 that has to be sent separately and wasn't, so I gotta beg for it, and see if tom they will do it. Then took the scans done by trial doc to her RO to recheck Brain MRI because it showed a larger edema, and I would trust more her RO than the ppl doing the study. SO yeah, I feel blessed that things are or will come together, but it's insane the energy spent on checking these people's work. And that's good people, in the big city, how does a/t function anywhere else?? How do planes don't fall from the sky??? It makes me wonder.
Lemondrop what can I say? I could send you an enormous warm hug, this awful monster and then go through a divorce at the same time, it's just too much. Re: the numbers, what about getting scans earlier than you thought? Would that help?
So…Patty how did it go? Are you back? How did it go? Dani's is resuming her trip as we speak. It was great to be away, they enjoyed every minute away. Away from this madness!! Weather wise also was a great week.
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LindaE, My DH and I are doing well. Can I say that out loud without jinxing things? I do have a stubborn UTI that caused my urologist to delay removing my post-surgical kidney stent. I am on my second round of antibiotics and will continue on them for several days after this annoying stent is removed on Friday. I am not really complaining. This is just a nuisance thing. I am sorry to hear that you are still having issues from you rads. I hope that they resolve soon so you will feel better. Do you have meds that work for the nausea and vomiting? I have heard that thrush can be stubborn. Thrush, nausea, and vomiting...hmm....are you able to eat enough to keep up your strength?
Lindalou, I am happy to hear that your DH had such a good result for is PSA level. YAY! That is one time when zero is a good thing. I had scans a couple of weeks back. DH had scans in May so isn't due for next round until November. His scans were clear. Now, it is funny that you should mention leg cramps. I keep myself well-hydrated, but I get terrible cramps in my legs, feet, and hands. My hands are the worst for me because they get stuck in a grasping position, and I have to massage them to get relief. I noticed that the pain became more frequent right after my last Faslodex shot, so I thought that Fas might be the culprit, but it sounds like it is probably ibrance. Well, either way, I will tough it out as long as the combo works. I am lucky that I don't have other SEs. Is there anything that can be done for the vertigo?
Chats, You have a lot of company in those moments of feeling weepy and scared. I think it is safe to say that everyone here has times when things become overwhelming. It is especially difficult when you experience things like scans or what you are going through now - a delayed in getting test results. Linda gave you some good information about the pain you have. Listen to your body. Ask your MO about it if it doesn't go away. He really does want to be aware of the way you feel.
Hugs from, Lynne
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Linda. Great news!!!!!
Anita. What an amazing picture!!!! Thank you it made me smile
Babs
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Thank you all
for the nice comments on the Crowned Crane. Thought we all need a crown sometimes.
50sgirl, yes I have traveled all over the world. I started learning photography underwater so that was a huge challenge using a camera with everything else that goes along with diving. But it took me places I would never had gone. Then after my first bout with cancer I started doing land photography to keep my sanity. I needed to do something that would help me focus on something other than the cancer. I totally involved myself in nature. It sounds so strange but I started noticing all of the little bugs the birds and then my husband started buying me new equipment. So my photography took me to Africa many times, Asia, and all over.
Now with the fact I feel like I have a chain around my neck hooked to an oncology office I have to work around it. Pain in the but, but I've made a bucket list and I'm going to go everywhere I want just in case I can't go down the road.
All of you ladies have been a lifesaver for me. I hope everyone has good results and feels ok.
Hugs,
Anita
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Anita, I would love to see some of your photos from Africa! Sounds amazing!
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Lynn - I'm also scared to jinx it but no nausea or vomiting over the last 2 days. Thrush is also better. I am losing weight which I can certainly afford to but hopefully appetite will come back soon.
Mommall - geez what can I say, on top of things you are as usual!
Chats - Of course you're having those weepy, scary moments, I'm sorry. It will get easier with time, months after dx are especially rough. But I still insist that your new pain be reported to MO. Keep us posted. Big hugs to you!
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Lynnwood1960. I'll post some for you. Great pics of lions, elephants, lots of birds. I hope that if I can stay on Xeloda and work out a schedule I'll go back this fall. I always told my husband if I had only one year to live I would like to be in Africa. We had planned on retiring there but now this bump in the road has changed our plans. He would worry about all the medical care I need.☹️
Chat, I agree with LindaE54, I cried for 4 months and if it wasn't for the ladies on this site I may have lost my mind. You will come to terms and feel better I promise. Just keep in touch with everyone here. We are all fighting the battle together! If you have more pains, tell your MO. I had bone mets and was put on Xgeva Faslodex, and Ibrance for 8 months and then I started not feeling good. Another pet scan showed liver mets. This disease is tricky and sneaky so be open and honest with your MO. Then if something starts happening they can change treatments. I'm only 10 months in this game, but I learned a lot from all the ladies here. I love them all.
Good luck.
Anita
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Lynnwood1960. Here is a photo of a young lion I took in Botswana when I was camping in the bush. There were two together and then Big daddy came in to check on them. Needless to say that was a little scary. But the young ones stay with the pride until they are old enough to hunt for themselves. I hope you enjoy. I wish I could reach out and hug them! Hugs Anita
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Good morning to all.
I had a marathon of onc appointments yesterday, seeing both my MO and RO. Both thought I looked better than last time they saw me. MO thinks my new steroid will jump start my adrenal gland and get me back on my feet. Blood pressure was better (it's been extremely low) Other blood work was mixed. Only real concern is inching up of TM after my initial big drops on Xeloda. I really hope to stay on X as my side effects have been minimal.
RO says I have nothing that needs immediate rads and holding off is better, especially as I work on the fatigue. May need a round on T2 in the future. The confusing part is still the location of the brain lesion. He's convinced it's not in the lining/fluid or I'd be in much worse shape. The MRIs are not specific enough to say what layer it's in. It will be watched carefully.
PET is scheduled for July 17.
You all help keep me going for sure. What courage on these boards.
I found the word "ataraxia" a while back. It means "robust tranquility." I work on that.
I'll cross post this on the Xeloda board.
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Anita, I'm going to Google you to see if I can find some of your other photos...gorgeous!
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Anita: You may not consider yourself a professional, but you sure are talented, skilled, and lucky with moments to have such vivid pictures. I know you have copyrighted your pictures, please excuse me for saving some of those beautiful images in my album for my enjoyment later. you should consider publishing them. Thanks for sharing with us and giving us smiles.
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anita...i just love your photos....there is a thread called "calling all artists"...i would love to see more of your work so please let us know where or if you decide to post....im so jealous of your travels and your art makes me feel up close and personal with our beautiful world...thank you for that......keep shining bright
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Anita, thank you so much for your photo...it is stunning!!! Anxious to see more. I've always loved to see animals in their natural habitat as opposed to behind bars in a zoo. Very striking photograph.
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Anita,
What kind of camera do you use?
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Anita-another wonderful photo! I think you're MUCH better than you realize.
Babs
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Anita again the photo is gorgeous love the animals all of them.
So I just spoke to my oncologist after she had told me on the phone that the tumours in my liver were all scare tissue. Now the story is different with the actual ct scan in front of her. My tumour markers went from 350 to 100 which I guess is good. Bone mets are all increased in size all soft tissue is smaller or gone. She believes since I have no new pain this is just the bone lesions flaring up because of treatment. I'm so friggin tired of this up and down ...give and take ...happiness to sadness crap. I'm going to go nuts. I guess I should be thank ful I'm responding at all.
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Oh Wendy, it's so easy to feel that way. I experience a range of emotions in ten minutes that would drive someone to the looney bin. My guess is they really don't know. I'm sick of blood work and medicines, crying, and just feeling like I'm stuck in this body that can never get rested. And so we go on.... hang in there. Yes at least you're responding. Xgevea shot and blood work for June. Check. Moving onto July. A month ahead is really all I can think of. I am thinking of all you strong ladies! Have a peaceful sleep. Hugs ~M~
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Anita what a gorgeous picture. Such a stature the way they stand in attention just taking it all in.
Wendy up and down, is there a different way?
Does anybody have any experience with PDL1. So Onco wanted Dani checked for it, she was thinking of immunotherapy that is being used for it, in Dani's case sometime in the future. So first lab she sent to refused to test it, because they said it's geared for lung cancer only at this time, She will try to send it to another lab. I did some reading on it, it does seem to have some results on triple negative metastatic bc. I told her to keep at it.
Waving to all.
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Yes Momallthetime your right it's just so hard and scary and sometimes like all of us I guess I don't no where to find the hope sometimes. When a treatment works we think maybe we can beat this beast or at least keep it down for a time. Then the next thing comes along and we are at square one again. It's exhausting sorry ladies
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Thank you all for the kind comments. I really do this photography for fun. My only claim to fame was a rare owl I saw on the Okavango River in Botswana and they put it in Africa Geographic. Otherwise I just love being out in the wild it keeps my mind settled since I've had breast cancer.
Kaption, I use a Nikon D820 full frame and use Nikon lens. I have different lenses depending on what I am going to photograph. I hope you are doing ok, they had to check my canals in my spine from all the bone mets but I have a lot in my skull too. I wonder if the cancer will go into the brain? I just get so confused and stressed like everyone else. My mind goes a little crazy.
Wendy hang in. I'm waiting to see what has happened to my liver mets. One day you get a gold star, the next time you get told something else to freak you out. I hate it. I get so much anxiety every time I go.
As I said before, I love you all and we need to keep fighting the battle!!
Hope you all enjoy the weekend and thank you again for all the kind comments on the photos. I'm glad I can make you smile.
Hugs to all,
Anita
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Wendy - Is it your MO's interpretation of the scans or the radiologist's? Although MOs may have a good eye, I would not rely solely on their reading. Do you have a copy of radiologist's report?
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Wendy, I had a similar situation a few weeks ago, where the MO and radiologist interpreted my NM CT bone scan results differently. I found an article which noted that progression should not be determined without the presence of new mets due at least in part to the flare reaction vs progression issue. Screen shot below, FYI.
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Illimae, thanks so much for this. It could be enormously important to so many of us in the future.
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I tend to rely on my RO to interpret confusing scan results. Even my MO says he is better at reading the actual pictures than she is. Wendy, do you have that option?
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Joynerl, you're welcome, I figure the more info, the better at least for Q & A with our docs.
Kaption, I agree about the RO's interpretation in general but since bone mets are so tricky, it seems sometimes like we're flipping a coin without additional evidence to support the scan results. It's frustrating for sure when we can't get a straight answer.
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kaption yes the scan result printout is from the Radiologist and even she sounded confused. Thanks so much Illimae the oncologist is betting on it being this as well I will cross my fingers that you are both right. Otherwise I need to shake the gloom off my family is all together (which is rare now a days) the sun is shining and I feel pretty good. Micmel Linda and Anita thanks so much we seem to trade off and pick each other up when we are down. Love you guys with all my heart
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Love you too Wendy💜All of you. Don't know how many days I am down and look here and see something that lifts my heart. That just happened. Thank you. ~M~
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