Bone Mets Thread
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I'm praying for things to go your way Romansma.
Oh my gosh you should see my silly birds. Dusty, the cockatiel, is on the top of the cage. Soebe, the parakeet, is inside the cage. Soebe is playing with a toy that is hanging from the top of the cage. He pulls it closer to him. Then Dusty, on top of the cage, grabs the hook that holds the toy and pulls it in the opposite direction from where Soebe slid it. This went back and forth for some time. Now they are both in the cage, playing tag.
I have a 9:45 appointment for an Xgeva injection, followed by an appt with my oncologist at 10. I guess I will find out what my tumor markers are and whether or not she will be changing my medication, since there was progression on the anastrazole (but also some healing). It is very confusing. So, I think I will go back to watching my birds.
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Romansma,
I hope Pfizer is able to get this to you at no cost. Sounds like it may be a good one to go on.
Terri
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Romansma,
I hope you are able to get the Ibrance. It sounds like you need a new therapy both physically and psychologically. The side effects don't sound good, but if it can make a big enough difference, I guess we endure what we have to. My thoughts and prayers are with you. Hang in there.
Sharon
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So I have a technical question for you ladies. The PET scan report says "the mass in the sacrum infiltrates the right S2 foramen". So the foramen is the opening between vertabrae where the nerves go from the spine to the rest of the body. Have any of you experienced this? It sounds pretty scary to me.
Leah
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Good luck Romansma........thinking of you.
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Leah, I have not experienced that yet. I think you are correct in your understanding of the purpose of the foramen, though, and I can understand your concern. Have you experienced any pain or numbness associated with, was it S2? The doc will know what to do. Have you talked to doc about it?
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It's 4;30....am. Couldn't go to sleep last night, either. One of the wonderful side effects of Xeloda, Insomnia. I hope everyone else is sleeping well, so important. Yes, I'm aware that SEs might be a little tough on Ibrance too. But, I think it will be a a more effective medicine for my profile, so that makes me more accepting. The psychological side of cancer is half the battle. I am so grateful to have a wonderful psychologist at my oncology clinic to keep me semi sane.
Leah, not familiar with foramen. I know reading the reports is pretty scary. My last described many of my vertabrae as fully infiltrated. Couldn't get that out of my mind for some time! I hope you get the answers you need, soon
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hey hope. Happy to hear your trying something new. Seems like your attitude is in the up swing. Hope def can change that for the better. Praying this tx will be more effective with less side effects. Hoping for family time for all of us.
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Dune - how did your appt with MO go today?KWC - and your ortho appt?
Well, I booked my trip to Cuba today from 22 March to 5 April. 2 weeks with my sister. Can't wait to dig my toes in the sand...
Linda
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I was just reading more about Ibrance. It said it's for people who haven't had any previous hormonal therapy. Who gets to stage IV bc and hasn't had some hormonal therapy???? Am I missing or misunderstanding something?
Sharon
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Hi all,
Linda - ortho wants to see me in a year.
Said I have no restrictions and the he agrees with my theory - my leg aches are essentially growing pains because the bone is growing back. And, regarding your trip - wow!
Sharon, I've read that too, but I think the statement "no previous hormonal therapy" is a bit misleading.
Hugs to all,
Terre
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Sharon,
I looked, though not super thoroughly, through Pfizer's site and didn't see that. It does say it's used as a first line tx, but I didn't see anything about not being able to take it if you havetaken other hormonals. What stage IV women haven't taken hormonals you ask? HER2 negative women
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Caryn,
I can't remember exactly where I read that in the past few days, but I just looked at the FDA announcement, and there it's even broader in saying it's for people who haven't had any previous treatment for advanced disease. Very confusing. I'm seeing my MO tomorrow and will see if he has any insight on this. If that is true, it's not going to be available for most of us. Can't be true. There are HER2 negative women here who have taken hormonals, but perhaps not at the advanced stage. I don't pretend to know a lot about that. I guess we'll have to see how it shakes out. Early information is not always reliable.
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Thanks Sharon. Keep us posted. I concur that it's confusing; I've seen conflicting statements from FDA regarding eligibilitly.
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Question: I have bone mets between T7 and T10. Radiation July 2013 and xgeva shots monthly for over a year. Regarding pain, radiation dr. states this is probably the best it will ever get. The oncologist states the scan really don't show much almost as if I should not be having pain. (I do not request pain meds on a regular basis at all) Does pain ever really go away even if scans don't show much? I believe I will have the pain for rest of my life regardless if it from cancer or scar tissue. Your thoughts?
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Caryn, when you said Her2- above, did you maybe mean ER-?
Roberta, I went from having significant pain that required a narcotic med 24/7 plus lidocaine patches -- and still sometimes pretty miserable, to being virtually pain free for several months. I have extensive bone mets, but somehow managed to get to a point where I haven't needed any pain meds for several months, although for the past two weeks, I have had some pain again, which probably isn't a good sign. But don't let any doctor predict your future pain level or tell you it can't improve.
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Yes, Deanna, I did! Long day at work and too little sleep. Thanks for the catch.
Caryn
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Roberta, I would concur with dlb. I have mets in my spine, hip, and femur. And arthritis all over the place. The mets are stable; no active cancer on the bone or CT scan. And some days my spine hurts like mad. Other days, it's fine. I had a doctor tell me that I'd have the same level of pain from here on out after my rads. Definitely not true. Some days I hurt more than pre-rads, some days I'm almost pain free. So I don't think they can predict the level of pain you'll have "for life".
I'd check on non-narcotic pain meds, they might help. I've been through three and the one I'm on now seems to help quite a bit.
Hugs to all,
Terre
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Linda I'm so excited for you and definitely want to hear more about Cuba. That island has been a mystery for us for so long. I have come to believe I can only know what is really going on by seeing it myself or through the eyes of someone I trust.
My appointment was kind of a drag. This doctor just rushes too much. She came in all bubbly about how wonderful my scan was and just blew off my concerns about pain where it is supposedly resolved and the new mets. She cut me off when I was telling her about that horribly painful day I had last Friday. And she was out the door before I could ask my questions. So I asked for someone I could talk to about my questions. They got me a nurse navigator. From her I learned my tumor marker went up and a little about what exercise I can do. Oh, also, the doc made a comment about not wanting to switch to chemo yet. In my head I was doing a major wtf. There are about 4 more hormone blockers we're supposed to try before chemo, at least according to my old onc. I may have to go back to my old onc and the dreaded Shirley. I'm really liking being closer but am I getting proper care? I have some lousy luck with doctors.
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Dune - wtf is right. Going back to your other Onc seems like a good idea. But the current Onc seemed quite happy with your scan, yes? Brushing off the intense pain you had is really a shame and it gets me boiling. Of all people, they should know that pain management is an essential part of this journey. You talk about what exercise you can do - I remember doing floor exercises and that triggered so much pain - when I explained the exercises I was doing to my Osteopath, she described all the muscles and the this and the that (would not be able to repeat) were involved around the met and she recommended I stop those exercises and showed me what I can do. I also have a dreaded "Chantal" as a nurse who is on either on vacation or on sick leave, who doesn't relay messages to Onc or who simply doesn't follow up. I asked my Onc if I could be switched to another nurse and it's not possible. There are 3 nurses in Oncology on the frontline and the best one is on sick leave and not replaced. So when something pops up, it's a real challenge to link up with my Onc, but I'm stubborn, nevertheless, it takes a lot of energy. Luckily, I appreciate and trust my Onc very much.It's so important to feel we have a supportive medical team in place.
Linda
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Dune, surely there has to be a competent and compassionate onc with a competent and compassionate staff in your area. As big a pain as it is, I would strongly suggest looking for someone else. Could you maybe start a thread here mentioning your area in the headline and asking for recommendations? You shouldn't have to put up with either of the scenarios you've gotten.
Roberta, in addition to trying different pain meds, have you tried any anti-inflammatories, either RX'd or holistic? I think I posted a link to another thread a few pages back where another BCO member had posted a list of all sorts of things that work to relieve pain, including some that aren't pain meds per se, and a few I'd never even heard of.
My local onc is sort of a shake his head, what do you expect when you have mets, kind of guy. But in several instances I've overcome pain I would have lived with if I'd bought into his attitude. Your radiation doc is speaking from his perspective -- that perhaps he can do no more to help you. But that's not a final verdict on your situation by any means -- just one person's opinion.
(((Hugs))) to all going into the weekend! Hope it's a good one! I'm excited about meeting a very dear on-line bc survivor friend I've never met, then driving to San Diego tomorrow to pick up my sister who is attending a medical conference (she's in RT research and also a bc survivor) and bringing her out here to enjoy our glorious weather (in the mid-80's today) for a few days before she heads back to the snowy northeast. Deanna
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Linda, I sure am sorry you have a dreaded Chantel for your nurse. It is worrisome not knowing whether or not your messages are getting through. I commend you on your ability to persist. I just collapse into a pathetic depressed blob. I will see what happens next visit and decide if I want to switch again. There are some Johns Hopkins oncologists nearby, but I sure don't want to be hospitalized at Hopkins. Ick.
Deanna, have a great time meeting your friend. I'm having an anxiety attack just imagining it. So I'll have to experience it vicariously through you.
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Hello to all,
Dunesleeper I hope you can make a decision regarding your oncologist, I know how tough it must be weighing out the pros and cons.
Deanna, how exciting meeting your friend, have a great time and wonderful weekend!
I just returned from my pamidronate infusion and visit with the mo filling in for my usual onc. She is so nice and I just love her, very thorough and compassionate and never makes you feel rushed. Well I decided I couldn't hold it in any longer and told her about how I'm feeling about my onc and the mistakes he has made with me. First neglecting to tell me about the met in my humerus, secondly arriving for my pamidronate infusion and being told I was getting Eribulin which is a chemotherapy drug. She was appauled, said that she received the blame for his mistake until they tracked down the paperwork and found his signature! I am very surprised how comforting she was and expressing her concerns about him to me as well. I also told her his bedside manner has been unacceptable lately, that I'm a patient going through a difficult time and that I deserve respect. She agreed with me. Unfortunately not a lot she can do, I would have to report him to a higher up, she said these complaints have to come from the patient.
I asked if I could be under her care, as I'm having anxiety when I need to see him. Because he is head of oncology, I will not be able to totally avoid him but she said if I want to speak with him she will come into the room too. Not sure what I should do? Any advice would be much appreciated. Do I just leave it, address him personally or make a report? I'm finding it very stressful, I should be comfortable with the doctor treating me.
On a good note, I met a very nice lady in the waiting room. In the span of 2 minutes we became friends. She has breast cancer metastasis as well, and has been at it for 6 years! She gave me so much hope.
Wishing everyone a wonderful weekend and pain free! Hugs, Annie
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Hi all,
Dune - keep shopping for an oncologist. I remember when I was on the boards with Stage I that one of the bc ladies fired four oncologists before she found one that was right for her. See comment to Annie below - this is YOUR life and you are not here to massage their egos. When I fired my MO here in NZ, the second one asked if I was concerned about hurting the first one's feelings. While I don't like to hurt people's feelings, when it's my life and health on the line, frankly my dear, I don't give a damn.
Annie - I know the anxiety about seeing the MO. That's what caused me to fire mine in the US (she was a witch with a capital B as my grandma would say). I know confrontation is hard, but I would set an appointment up with the male MO and tell him. Write out what you're going to say, and go in and tell him you have something you'd like to read to him. Alternatively, write him a letter. Ask to be switched. And make it not about him, but about you. I think if you do it in a non-accusatory manner (i.e., I feel more comfortable with the other MO because she's a woman, I feel rushed and intimidated when I meet with you, etc.), it might work. If that doesn't work, then come out with both barrels blazing and write a letter to the person above his head and point out the mistakes. Remind these people that it is YOUR life they're screwing with. You have enough crap to deal with without dealing with someone who's not engaged with your wellbeing.
Linda - sorry you have Chantel, but at least you like your MO.
Deanna - sounds like a great weekend! We want to hear all about it!
Ok...DO NOT READ THIS PART IF YOU'RE SQUEAMISH...but this is too funny not to tell (even though it's probably TMI). I've had this tummy problem for some time now. And it's not cancer. So I go to the GP and he thinks it may be a form of food poisoning or similar and requests a stool sample. Gross. It comes with instructions and you have to kind of grab one (with toilet paper) and then scoop it into this little jar. Ick. So...I grab one. With toilet paper. And go to set it on the counter and it rolls off onto the floor. I pick it up and it's covered with cat hair. So I try to choose a spot with minimal cat hair, scoop, and take the sample to the lab. I told my husband about it, because despite being gross, it was rather funny. I said, "I wonder what they'll think if they get a glob of cat hair in the sample," and my husband says, "they'll probably tell you to stop licking the cat to groom it." (trust me, I don't lick the cats!) Every once in a while, I wonder why the hell I married my DH, and then he comes up with something like this which makes me laugh til I cry and I remember why.
Sorry if I grossed anyone out.
Hugs to all,
Terre
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Just got home from my MO appointment, and after reading all of your comments about your providers, I count my blessings once again! When I chose this doc after my original dx, I was told I'd wait forever on appointment day, and I got used to calling his office and checking on when I should really arrive. For the past year or so, they have been managing his schedule better for shorter waits. I was always patient, though, because I liked the fact that he took time to listen and I figured people really needed that. Now that I need more of his time, I get it. Today I had questions that I didn't have the presence of mind to ask last month when I got the dx confirmed and started treatment. He took time to talk about everything I wanted to talk about. He spent an hour with me and I never feel rushed when I see him. I don't care for his assistant, but she's not really part of my care. His nurse is fantastic and keeps telling me I can always call her, that I shouldn't just stew about anything. Unbelievable. I couldn't ask for better people to work with. I've been on the Xgeva and Aromasin for only a month, but my overall level of aches and pains, even from my arthritis, are way down. He was really happy to hear that and felt it's a good indicator that I'm responding to the treatment. So, off to a good start. Got another injection of Exgeva and will see how things are next month. He said it may take a couple of months to see how the tumor markers settle out, but so far, so good.
I asked him about the Ibrance, and said there are many new drugs available, and their suitability for any one person really depends on that individual, what she's already taken and how her cancer is behaving. So, nothing solid there to report back. He did say that this is indeed becoming regarded more and more as a chronic condition to be managed. I found that very encouraging.
I asked him how I got from "cancer free" to this in less than a year, and he told me something I hadn't heard before. He said breast cancer is regarded as a systemic disease, and you can never be sure it will not come back, no matter how you treat it. I had declined chemo before, but he said even women who do chemo, radiation, all of it, have recurrences and they are often metastatic. This is the kind of information that needs to be out there, not just "buy pink" stuff, get your mammogram and all will be well. I am amazed at my own ignorance about some of this.
I feel very hopeful and blessed today that I have the resources I have to battle the beast. If you're not feeling good about your doctor, GET A NEW ONE!! Sorry to shout, but I don't know how anyone can cope with this disease with unfeeling, uncaring, rushed providers taking care of them. No one needs that stress on top of everything else. I know it's not easy to change doctors, but you deserve a decent quality of life, and part of that is good care providers.
OK, time to once again put away the soap box. Have a good , pain-free weekend, and think of me Monday about 2:30 CST. I'll be saying "I do" !!
Love to all. Sharon
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Terre -- That is a great story!! Obviously you're not dealing with unicorn poop here!
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No unicorns at this house, Sharon.
Glad you had such a good appointment, Sharon. Thanks for sharing the info on recurrence. When I was in the hospital having the pin put in my leg, an older (probably late 70s, early 80s?) woman came to visit the woman next to me. She said she had bc twice - two different types, one type in each boob. The last one had been about 15 years ago. She still sees her MO early and she asked him when she could stop seeing him. He said, "when you're dying of something else." I've read about women being "cancer free" for 20 years and having a recurrence, and there are others who never have a recurrence. And there's several of us here who had a "low chance of recurrence" but recurred. I am quite inclined to agree with your MO; sounds like you got a good one!
After horrifying weather yesterday, we have blue skies and sunshine today. However, it's only early February and they have snow warnings for the south island. For those of you in the Northern Hemisphere, that's like snow in early August. It was flat cold here yesterday and still chilly today. All I can say is that summer had better not be over with or I'll just be angry.
Off to the grocery store - I know how to enjoy a sunny day!
Hugs to all,
Terre
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Annie - I like KWC's approach to meet with him and make it all about you. But I would go further in a "manipulative" way, ie. "I don't feel comfortable with the omissions and mistakes namely..., these events generate a lot of anxiety for me, I realize that error is human but I was very shaken by this". That will attack his ego for sure, but he will be aware that YOU are aware of his mistakes. Before filing a complaint higher, I would have a talk with him. I had a few confrontations with doctors when my late dh was sick (brain cancer and he could no longer speak) one of which actually apologized for his behaviour. It's hard to do, but the longer you wait the more stress and anxiety you will have. You'll feel much better after.Just found out my MO will retire but don't know when. Damn!
Linda
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I just wanted to post and say I got my scan results from Wednesday back and I am holding steady and stable. I was hoping that after my clinical trial some of the tumors would have shrunk or gone away-stable is my new normal and 18 months post diagnosis stable is a blessing.
Have a great weekend everyone!
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Partyoffive - Stable sounds excellent! and may you remain stable for a very long long time.
What clinical trial did you participate in?
Linda
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