Bone Mets Thread
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Hi Tee,
Welcome to the Bone Mets Thread. I am sorry that you have reason to join us, but this thread is filled with wonderful supportive people.
I also have lots of bone mets. I was diagnosed just about a year ago. I have been on Arimidex and Zometa since then. So far, it seems to be doing its job. I am pretty much pain-free, and my daily life seems pretty normal. Last year before dx, I had severe pain throughout my body, so I know the treatment has done some good. My blood tests have all improved, and my tumor markers decreased dramatically. I was stage IV right out of the gate, so I still had the primary tumor in my breast. It has shrunk and is now very small.
I also questioned the wisdom of the treatment plan at first. Many other women were starting with Ibrance and letrozole , but I have found that I have virtually no side effects. (I did have some hot flashes in the beginning.) I feel strong and healthy. I hope to remain on this plan for a long time. My onc has some stage IV patients who have remained on Arimidex for 8 years.
Everyone is different, but your treatment plan has worked for me. It has treated me well by giving me almost no side effects while beating down the cancer cells. I hope this helps.
Lynne
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Hi, Tee. It looks like we were posting at the same time. I also had diffuse and extensive bone mets at diagnosis, along with fractures, and my first line of treatment that worked for about 18 mos. was Anastrozole. Many oncs, including mine, take pain level and TMs into account when assessing the need for scans. As long as I don't have increasing pain or TMs going up or other concerns, my scans have been every 6 mos., with the caveat that I'm to call if any new concern comes up prior to that. Remember, scans do give us a lot of radiation exposure, as well as exposure to contrast which can eventually be rough on our kidneys. So scanning every 3 mos, as some oncs automatically do, is not what I personally want.
If you have any doubts about your onc's recommendations, you can always get a second opinion, but it sounds like you're in good hands.
Welcome, and glad you've found us! Deanna
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gg27 and 50sgirl I've never had any bone pain except for the night I woke up and coughed and cracked a rib. That's how my Mets were discovered. If it wasn't for that I was going to start chemo and radiation for a stage IIb diagnosis but that got cancelled when we discovered the mets. They did a CA 27-29 in April and it was 25.9. In May it was 35.1 kind of scary and I haven't gotten any results for June yet . My oncologist said if I do have pain I could have the area radiated but my rib has gotten better on its own. I think I will have more scans in August or September.This is so scary the not knowing is so new to me and I'm wondering if I'll ever get adjusted to my new life. I was put on depression meds last month and has worked wonders for me so far. I was crying every day and was miserable before starting. It's a relief to know that you guys have the same treatment as me. I'm sure glad to meet you guys and I'm sure I'll be spending more time here. I finally found someone going through the same thing as me because most people I talk to just don't get it and I'm sure you know where I'm coming from.
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Hello, thank you all for your support and celebrating with me!! It really does lift my spirits, knowing I have you all in my corner.
Deanna, love the bathing in Epsom salts tip! I do once a week on a regular basis. But after my recent pet scan, I took three relaxing soaks a day. Love dr. Teals lavender salt. Smells so good!!!
Tee, welcome to the club nobody want to be in! (Gilda Radner) I thought that my treatment plan was too soft as well. I have been diagnosed 9 months now. I have been on tamoxifen daily and zometa every three months. My ca27-29 has been within normal range since December. And the scans show improvement. Find an oncologist that you feel secure with. I put my condition in his and gods hands. Just do your best to eat healthy, stay active as much as possible and try to keep a positive attitude. I know how hard it is to do that! Especially in the beginning!!!! We are here for you every step of the way.
Love Chelle.
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dlb823 nice to meet you. I always have my doubts about being on the right treatment but from the information I'm finding out maybe I am. I would have liked a second opinion just to ease my mind but I had no insurance so I'm going to a university hospital. Thank you all for the support.
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Tee, I must add that I also take a couple of medical marijuana tinctures. CBD-THC. Not sure what is making those cancer cells so sleepy. But I'm not going to change a thing
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Tee, yes, we all "get it" here. I remember being exactly where you were 2 years ago, not knowing what was going on. After the first little while, it does get better. Other than a few bouts of pain which I am able to control pretty well with tylenol/ibuprofen combo and scanxiety (where you are so anxious about your next scan) life is pretty much back to normal.
For some of us, like me, my tumor markers (TM's) are very accurate, for some they're not & their Dr's don't bother with them, but it does take a while for them to go down & they can go up as your tumors are ramping up, fighting the drug, this can be the cause of pain as well.
If you feel that you would like a second opinion, I would say that might set your mind at ease. I don't know where you live, but in BC, our files go before a cancer panel consisting of many onc's and they all discuss your treatment, so it's not down to one opinion. It may or may not be where you are, you could always ask. cheers, dee
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I don't think the bill passed yet for medical marijuana. I'm in Louisiana. I have gained 8 lbs. since I've started Arimidex yikes!!! I try my best to eat healthy. I have been eating veggies that I've never eaten in my life before. I had my own vegetable garden for the last 10 years and use to till it on my own up until last year. I'm so excited to meet you all 😂 I can't figure out how to put a photo up from my phone.
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Tee, trust me -- that feeling of disbelief, or as you described it -- wondering if you'll ever get adjusted to this new life -- will pass. Of course, there are moments when we all get overwhelmed with worry or fear, but I think I can honestly say, for the most part, many of us have very normal days once the treatment kicks in and we realize we're not going downhill nearly as fast as it might seem in the very beginning.
I think you are very fortunate to be at a university teaching hospital, no matter how that evolved. Clearly not having insurance can be a huge worry, but in your case, I haven't heard anything to make me doubt that you're getting excellent care, as well as doing good things for yourself, like eating more veggies! (((Hugs))) and hang in there! Deanna
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Hello to everyone!
I am getting ready for a girls weekend that is taking place at our lake home. There are seven of us that have kept close contact since high school and we are all celebrating "When I'm 64" (when I get older losing my hair.. many years from now) lol.... so much for many years from now.....
Tee- I thought of Chelle when I read your post and was so happy she responded to you.
Mary, Glad to read your report was reread and happy about it-
Deanna, Dee, Lindalou, LindaE, Lynne,Babs, Zar- MomATT-
Christine and PattyP always thinking of you
Anyone that I missed- Hugs to all
Carol
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Hi all!
Chelle - great news!
Tee - welcome to the group.
Dee - Fingers crossed for you. Just listen to Tom Petty's "the waiting is the hardest part" and it helps.
Lindalou - thanks for the link!
LindaE, Babs....I've divorced some people too. And yes, I hate that "but compared to you..." A big problem to someone is a big problem to them, no matter how small it may seem to someone else.
Sending love and hugs to all. Not posting much, but I am trying to keep up with the thread and thinking of all of you.
Terre
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LovesMaltese - have a great girls' weekend! Sounds like fun. Fun and laughter can do wonders for what ails ya!
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You ladies are incredible - sometimes the information and advice you have in your pockets make me forget that I'm not reading scholarly articles in medical journals.
I'm embarrassed to ask a couple of Breast Cancer 101 questions, but I can't seem to find the answers myself. I'd really appreciate your help:
I'm now seeing my third MO (first one I fired and the second one moved to a research lab). He is the first MO to have recommended that tumor markers be tested. Mine have been very consistent with PET/CT results since 2-27-15. I graph them myself, and the peaks and valleys are almost perfectly aligned with stability and progression. The lowest scores were 40 for CA 15-3, and 41 for for CA 27-29. The highest were 67 and 70 respectively. I had nothing to compare them to until I joined the forum, and saw others' posts when TM's were in the hundreds, while others are in the twenties. I think I read somewhere that 'Normal" is under 30, but why in the world is there so much variation from one person to another? I'm wondering if they are more similar to scaled scores than to comparison to a standard score. You can tell I'm really confused.
How do you get copies of your bone and PET/CT results? My cancer center uses Navigating Cancer for patient information purposes, and I can view summaries of clinical chemistry, hematology, tumor markers and vital signs a few days after appointments. I can't find the information you discuss regarding radiologist's interpretations, etc. Should I just request hard copies?
Thanks so much for your help,
Angela
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AngelaO - Most tumor markers are antigens produced by our own bodies' immune system. They are going to depend on the characteristics of the cancer and on your immune systems, both of which are going to vary highly among people and with time. The range of antigen levels that people see does vary a lot for these reasons. There is no absolute scale. Only your personal scale.
The behavior of markers can depend on treatment. Mine increased when I started treatment even though the tumors were shrinking. This is very common with hormone therapy. It's called a flare reaction. Time will tell if my markers are useful predictors
Yours are likely useful, given the correlation you have found over a long period of time with PET Scan results.
However, I do see why many doctors don't use TMs. It's hard to tease out the meaning.
For the PT scan results, go to the medical records division and ask for a CD. I've been looking at my scans this afternoon.
>Z<
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zarovka,
Thanks so much for your informative reply to both of my questions! Your explanation of TM's helps me understand why my previous MO's don't use them. I've been placing a lot of blame on them for "allowing" my Stage I cancer to evolve to Stage IV by not ever recommending TM's; now I can let go of that unhealthy emotion.
I had NO idea that I could ask for a CD of scans. I'm the type of person who needs an image to show me what is going on. My MO quickly runs through the scans on his computer, and is good about showing the comparison between current and past results - but he goes too fast for me to process. And, of course, my "white coat syndrome" is in high gear during the appointment following a scan, and I can't concentrate on either the images or what he is saying!
Thanks again,
Angela
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It is a good idea to look at your scans so you understand fully the amount of judgement that goes into the interpretation. Ask the medical records department for the CD. They give you the images with a program to allow you to view them. If you have any trouble with the program just ask the nearest Millenial (10 to 20 year old person).
>Z<
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Zarovka,
HA! You can obviously recognize a Luddite from afar. I had to retire from my public school SLP position in December because the cancer ruined my voice (bet you can recognize the irony in that); I really miss the tech support I received from my students!
Angela
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Hi all!
Still haven't heard about the trial, but I'm assuming that I'm in as I got a call yesterday from our local hospital for another bone scan on the 5th. I guess they want baseline scans. I don't know if I mentioned or not that the new MO agrees that I probably have not had progression, but she said "why wait until it goes somewhere else before we get you on palbociclib" but said in her report that she would be saying she believes there is progression as that is one of the criteria.
Hope everyone is doing ok this weekend. We're having some showers here which I'm happy to see, my cisterns are full & my garden is happily damp!
cheers, dee0 -
Dee, I think you're doing the right thing- No Monday morning quarterback with this disease that is for sure. Will you know if it is Ibrance or are they doing placebo as well? I hope it isn't a blinded study... pretty easy to tell if you're on Ibrance though.
lm Glad you got some rain we got sunshine and really nice hot days without any humidity.
Carol
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hi Carol, the trial is just different dosages. 125mg, 21 days out of 28 or 100 mg over 28 days. No placebo. I hope I get on the lower dosage, hoping for fewer SE's. cheers, de
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Dee -
Tribe Ibrance meets on the Palbociclib 2015 Thread. We are all going to be very interested to hear how it goes for you. Please keep us updated.
I like your oncologist's attitude.
>Z<
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Dee, good luck with the dosage. I know you're going to do just fine!!
Carol
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Dee- Im sure you'll do just fine on the Ibrance. Good luck!!!!
Babs
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Dee, congrats!
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Happy for you Dee
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Morning all!
Interesting to see that Carol, Babs, Cathy & Zarovka are on Ibrance and thanks Linda & Jen & everyone else for the words of encouragement. I'm nervous about starting a new drug or 2 new drugs. I remember Susan taking new ones & saying afterward that she wished she'd never done it. I know this is a different situation but her words resonate.
I have taken a look at the Ibrance thread, but like bone mets, it's so long, but I'll pop in & say hello. I hadn't wanted to until I knew for sure that I was going on the trial, but all indications point to it.
Is there any tips or tricks that you can offer me? Probably won't start until around the 12th of July after all these scans & labs are done, baseline I guess. Lovely cool, showery weather here after so hot & dry, I'll get out in the garden today. Happy Sunday to all, cheers, dee
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Dee I'm not on Ibrance any longer but I was for about 7 months. I'm on Xeloda now. Ibrance and Letrozole were easier for me so hoping it's the same for you!!!!
Babs
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Dee, I don't think you're going to have any SE that you will complain about. I had a problem with bone marrow suppression because I started rads and this treatment at the same time. I got lowered to the lowest dose (have completed one cycle of low dose) so I can complete a month without interruption I personally feel the worst on off week. Noticeable low energy. I call it the heart and butt disease. "Sit on your butt all day and don't have the heart to get up!"
My biggest complaint for me and I had/have active mets was a burning deep pain. Came after I started Ibrance after a couple cyclesMaybe it's neuropathy but it got better when I had the 2 weeks off. Other SE is tender scalp and a tad bit of hair thinning.
Carol
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Dee, I am glad that things look good for acceptance into the trial. Won't it be nice when all the tests and scans are complete, you have official word of acceptance, and you start on your new treatment plan? It must feel almost like starting all over again. I hope the new medications are kind to you. It is always a bit scary to change things around, but this seems like a good opportunity for you.
Lynne
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LindaE I am very behind in all the reading, it's been very hectic with "my thinking process", work etc… the progression for Dani, but what's this about you looking into a clinical trial? Were you not stable?
Chelle so happy for you. Thank you. I know. And I could imagine your worry. I have questioned why her, so young, so much to live for. I give up on the questionnaire, that's for sure.
Dee which trial would that be? I can't believe that they say "when" you will get Mets to the liver? Really? Well. And no bone? So what do they mean? How many places do they want you to have mets to be a candidate?? So what are you to do in the meantime? Sorry but I guess I am not clear on this whole picture, so sorry Dee that you have to go through this.Lynwood it's been trying time. But you guys here were just so precious. Thank you.
Zar I am trying to get the Good Spirits around us, you bet. You are so right, about my faculties. I am shocked as to how fragile we are as Humans. I do try to be strong and I work through the day, but the nights are devastating. And the worry and the thinking that takes place in dire times are the thing that breaks you. I am holding on.
Debbie maybe this link could help you understand the HER2 pathways better. https://www.youtube.com/watch?v=vS1mA2qvPe8 this helped me understand a lot.
Lynne how are things with you. What a smile! I know you guys know where I am at: listen, Dani is so sweet, when I hear her making a plan for something, and always having to say: well I will go unless they call me for this test or that, or I have to go in for Infusion. Her life is upside down. She is still helping others. Still wants to be the kids MOM. She never ever complains. Here, I am, much older, and I am ok, and she is not. It's the truth what can I say. And also b/c it's always something going on, the constant changing and thinking of new tx, aghhh that takes so much.
I am suppose to try something new, Trazadone, suppose to be better than Ambien. I was told to count on 8hrs of sleep!! Oh,my. That's just crazy. And yes, thx for driving it home. I did get in touch with a doctor/friend from a large Hospital network, and we are to be expecting a call from the MO he referred. This MO is from a large Cancer Center, we are really looking forward to see his take on all this, of course there he works with a whole team, so I will post as soon as I know. I listen to ALLLLLLL of you wonderful ladies. I will still go further if needed, this is just the beginning.
Lynne what do you mean by "entering a referral"? Also love what you wrote in response to Dee. It's so true.
LovesM thx so much for your input about different receptors. That's something that is on my mind. I am actually gonna have a "real" meeting with her regular MO tomorrow and another colleague to go through the tx options, etc… It's funny you ask about the chin, it did get a bit better on it's own, but just the last few days it has been acting up. And she did not even know about the progression on the area of the mandibular and the frontal in her skull. This is gonna be a question for the 2nd opinion doc we are supposed to go to, hopefully any day now.
Babs so sorry for what you had to go through in making this hard decision about your son. But your health, physical and emotional definitely is a priority. He will come to realize how precious your relationship was.
Amy that's just awesome! Kids, and beautiful places, what could be better?
Lindalou that's so interesting, who could participate in this trial? How do we get to it?
Tee510 this is definitely like "coming home" being here.
Angela I always call the Radiology place and either I get someone to fax over the report, or I get the report when I go pick up the CD. I have all CD's. It comes handy. Maybe as soon as tomorrow we are planning to go for a 2nd opinion, and if I would only start requesting and getting together all info, it would take that much longer to get the help we need.
I did not share with D yet about the liver things, I guess tomorrow is the ugly day. I decided today to concentrate here, I have to share and learn and support the other threads also, hmm, not today, it's late already. There is just so much to learn. But even today when I was speaking to doc/acquaintance(really) for guidance, and he said, oh you know your stuff, I am like, hmm, no, it's my peeps, not me.
GN everyone,
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