Bone Mets Thread
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Sue2009 I am looking at possibly starting afinitor. I meet with MO friday to talk about treatment change due to progression. I am still bone only so might look at just switching hormone tx to falsodex(spelling?). I hope the rads worked for you and I would love to hear what you do next.
rnsparki, thanks for all the information. I do want to put all my faith in the pet scans but cancer in my hip could only be seen by mri. It is just so much info to manage. Somehow understanding it as crazy mets does help. I am glad you feel support from this thred. It has also been a life saver for me.
Rushjackson I am so sorry for your dx,but happy you have found this thred. The women here have such wisdom and kindness. I am on similar tx. Zometta was difficult for me the first 3infusions but now I have no side effects at all. I wish you the best of luck with your treatment.
Peace to everyone
mary
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Rushjackson, so sorry you need to be here with us. I'm also newly diagnosed. These ladies are too wonderful! They are a fountain of wisdom and support. I am one month into treatment, and have begun to feel some of my old self returning. A new me, but I definitely feel better. Things will look up. You have us to relate to now
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Welcome Ruthjackson - this is the club no one wants to belong to. But I'm glad you found us. Amy is right - what you're going through now is the worst part. It does get better with time. You'll find a lot of support and caring here. Don't be shy about speaking up and asking questions. Also remember that a lot of us have menopause brain, chemo brain, brain fade, etc., so sometimes we miss responding to people. Don't think we're ignoring you - we're just a spacey lot.
Well, some of us are anyway! Sending you hugs and good thoughts.
Terre
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Amy, I get my flu shot on my butt now because it made my arm so sore I had a hard time using it. Also they tell me to take 2 tylenol an hour before having the shot to avert the headache & flu like symptoms. It's worked for me the last 2 years.
Rushjackson, sorry you have found your way to our little space on BCO, but you will find support and answers to most of your questions. We laugh, we cry, we understand when no one else does. Right now is the worst time, you don't know what's coming, but trust us when we say it does get better, once you get a plan. Any questions, don't hesitate. We're here for you. And like Terre says, sometimes on this thread, there are so many of us that it's easy to miss someone in answering. It's not personal, I'm just a space cadet sometimes (maybe not just sometimes! LOL)
Hi to everyone else, hope you had a painfree weekend. Mine? Full of rock picking! My RO was actually happy to hear that I was shoveling dirt & picking rocks. My back is feeling a tiny bit better, if I take pain meds.
It's election day here tomorrow, thank gawd we can finally be done with all those stinking election ads. It's all done but the crying. Cheers, Dee
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Hi rushjackson. Welcome to Breastcancer.org! We hate the reason you're here, but we're glad you've found this amazing group of supportive and encouraging women!
Hope treatment is kind to you and works well to reduce the mets soon.
All the best,
The Mods
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Happy Monday, everyone. I hope everyone enjoyed the weekend. It was cold and windy here in New Hampshire. There were a few snow flakes in the air, but no accumulation. It looks like there was some real snow in other parts of the country. I am not ready for the cold weather.
rushjackson,, Welcome to the bone mets thread. I am sorry for your dx, but you have come to the right place for support and information. I know how you feel. I was terrified when I was dx in June. I thought I wouldn't live to see Christmas. Well, guess what, now I plan to live for a very long time. Don't pay any attention to the statistics you might have seen. They are outdated and don't give a clear picture of reality. It sounds like your onc has a good treatment plan in place for you. I am not on Ibrance or Aromasin, but there of many women who are having success with them. Ibrance is a drug that was just approved this year and is always given in comination with another drug, in your case Aromasin. I have read many posts about Ibrance even though I do not take it. People have seen good results with it. I did begin Zometa infusions last month. I had heard that some people have flu like symptoms from it, especially the first time. I asked for advice, and the wonderful people on this thread told me the following: be well hydrated (I drank lots of water the day before, the day of, and the day after tx), take a Tylenol and an Advil ( I am allergic to Advil, so I only took tylenol the day of and the day after tx), make sure the infusion is set to take at least 30 minutes (I was given saline solution followed by 40 minute Zometa infusion). I am glad you have supportive family and friends. That is important.
Lynne
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Dee, I wish the elections were over and done with here. The politicians are here in N H ever day until the primary election. We get lots of phone calls for surveys and invitations to attend events. It is great that we hear the politicians's views, etc, but enough is enough.
Amy, your weekend in northern MN sounds wonderful. Take it easy today and get some rest.
HI got my flu shot and had no problems with it. I had the flu years ago, and I NEVER want to get it again. I think mbc is more than enough!
Rushjackson, I forgot to tell you that there is an Ibrance thread that should be helpful. There could also be a thread for Aromasin, but I am not sure. Other people on this thread who have had the tx will undoubtedly provide you with information about their experiences. Let us know how you are doing.
Lynne
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Good morning all. Hope you all had a nice weekend. Rushjackson welcome and as everyone has said, sorry you're here. I am on Ibrance/Femara combo. For the most part it has been very successful. My TMs refuse to cooperate, but scan is good. Having another scan in November. Several of us have the same thing. I just started my 8th cycle and the blood counts and fatigue are basically it. I seem to be the most fatigued when I let myself get bored, so keep as busy as your body allows. Dee on this thread digs rocks and builds car ports and Terre works full time and still flies around. Many others also work at least several hours per day and take vacations and love kids and grandkids. Do as much as you are comfortable with and you will see life falls into place!! Join us on the Ibrance thread also lots of good info there too.
Got to run, everyone enjoy your day. Myra.
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cjanet there is a retreat in Ocean Grove NJ for female cancer patients. Free here is the link https://www.marysplacebythesea.org/
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Good morning all,
Rushjackson - a warm welcome to you but sorry for the reasons that bring you here. I echo everything said above. We're a great bunch of women here - don't hesitate to ask questions, share your feelings, whatever. We are here to support you. Sending you lots of hugs.
Dee - You "rock"! Yes, election day here - can't wait for this to be over.
Good day to all
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Just popping in for a bit. Headed to Chicago to pick up my son who is flying in from NYC!! Can't wait to see him.
Rushjackson, Myra has said it very well. We all try to keep going as much as we can and support one another here all the time. I cherish this group of women.
Amy, one of my favorite vacations years ago was to northern Minnesota.
Love and hugs to all...gotta get going......YAY!!! ( Can you tell I'm excited??)
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Rushjackson-Welcome! I don't post very often but I read everything here and in the Ibrance thread. The information and emotional support from the women here is amazing. I've learned a lot about BC by also how to mentally get through this because of the women here. Even when the support isn't directed to me specifically, I get a good vibe from it.
I was diagnosed stage iv right from the beginning with 4 spine mets. I started Ibrance and Femara in June and I am in my 5th cycle. Today I am going for my first spine MRI to see how well the therapy is working. I tolerate the Ibrance and Femara well and have minimal side effects.
Good luck with your treatment.
Ellen
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HI ladies,
Your support means so much to me. Whenever I read your responses, I always cry. I am going to pick up a book on my way home from work today just to get in deep and to distract myself. I am also going to look at the positives in my life: I have 2 beautiful kids, I have a wonderful house, I do have supportive friends (one I wish would visit me more, but I am going to tell her so), my sister just moved from Colorado over to South Carolina to be closer to me (and she was tired of the winters), I am not in as MUCH pain as I was, and my DH has supportive parents who would come and stay w us if I asked and they would give us money if we run out bc of DH's real estate "venture." Some days are easier than others. Some days are harder. I am going to increase my antidepressant especially with the winter coming on so hard and fast here in NJ.
Rushjackson- welcome! I can relate to where you are. There is a LOT of hope here. I am just one of the ones having difficulty adjusting bc of issues I already had with my husband and I did have depression when I was younger so it's rearing it's head in negative thinking. I think you will find a lot of answers here and support. I was diagnosed metastatic in April 2015 of this year but had been struggling with pain since November 2014 so basically now a whole year! My oncologist thinks I had mets all along since the beginning (diagnosed Feb 2012 BUT had the lump in my breast since 2011, another long story).
Rnsparki- glad you came back, I love to have your feedback on clinical issues as you are a nurse. I do think these bone mets are crazy. Some days are ok, some days a dull ache and some days downright awful. I do find emotional tension immediately makes the physical pain worse.
NYC chutzpah- I've seen that retreat before and am so tempted to go. Mt kids are so young though and I do feel guilty leaving my husband alone with them a whole weekend. Maybe one night I could do it and line up help for one day as well.
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Cristina,
Maybe your in-laws would be willing to help out with the kids if you go on that retreat. As a grandmother, I can tell you that I enjoy having some special times with my grandchildren. If they aren't available, maybe one of your friends can help, especially if they have children close to your kids' ages. They might all have fun. It sounds like you might need some time away. You are going through a difficult time, and you owe it to yourself to find time to relax and recharge. The retreat would give you an opportunity to connect with other people in our situation. Just think about it. Maybe it's a possibility.
Lynne
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I just read "The Silver Star" by Jeanette Walls, it was an easy, good read.
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Rushjackson, welcome! I am on the Ibrance/ Femara combo and have seen my tumor markers go from 203 to 58.6 in 6 cycles. I am working full time as a nurse and doing well. My onc is very optimistic that I will be around for a long time! Come on over to the Ibrance thread..LOTS of valuable information!
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just dropping in for a quick note. Day 5 of radiation and hugh pain improvement! So happy for this relief.0 -
Quick MRI update - I received a note from my oncologists office saying they cannot release MY MRI results to ME without MY signed authorization releasing MY MRI to ME. Is this insane or what? I am livid.
I'm heading over there tomorrow morning with release in hand to pick up MY results. Good grief. I get to wait yet another day, meanwhile the pain continues to increase and I'm playing games with them...
Amy
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Amy, My head is spinning. Really? They need YOUR written permission to send YOUR results to YOU? No wonder you are livid. That makes no sense what-so-ever. I am sorry they made things so difficult.
Lynne
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Hi all,
3-11-2011 - glad relief is coming quickly. Rads have been good to me to.
Amy - how frustrating! Wishing you good results tomorrow.
I had my consult with my Ortho today to have his opinion on my "new" spinal mets and the overall evolution of my bone mets since dx in Nov 2013 to now, and to help me make a decision if a change of tx is required. As per his interpretation of imaging, the cervical and thoracic bone mets are stable since Feb of this year with no progression to C5-C6 as opposed to what radiologist said in Sept. The hot spot on the bone scan was a bit bigger but CT scan shows no changes - they are so small that it can be misleading. The other spinal mets do not light up on bone scan. As for the suspected met on T4 - he does not think the lesion is a met (at least for now). So confirmed mets at C2, C5, C6 and T2. We know that those mets were not there at dx, but no CT scan of neck/thoracic/abdomen/pelvis was done between April 2014 to Feb 2015. So no imaging to compare to. The Onc replacing my regular one who was on mat leave during that period of time used US for vital organs and chest X-ray to avoid too much radiation. I will not accept that again and will insist on regular CT and bone scans from now on (because my Onc is pregnant again). Ortho confirms light improvement of iliac met and stability of other mets since dx. X-rays were done today of pubic bone and femur (rod insertion in femur). Orthopedic material is in place and he confirms that pubic bone pathological fracture due to a met is not only partially consolidated (as per Sept scan) but fully consolidated! He says that globally all is well and without asking him, he said he would not change tx now. Those new mets appeared somewhere between April 2014 to Feb 2015, we will never know when, but since they have been stable since Feb of this year, no change is needed. No fractures in spine nor compression. Plus, the axillary lymph node met reduced by 20% since beginning of tx. I feel so much better having had his opinion and will continue with Femara.
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Linda, Even though I don't have my MRI results, your dx and progression sounds much like mine, complete with pathological fracture of pubic bone back in 2013. I'm happy to hear you will stay the course with Femara and for now no other changes. Good news about no fractures in your spine or compression. I hope you continue to feel better.
Amy
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Rushjackson, welcome to our thread but sorry you have reason to be here. You've found a good place to come for knowledge and support. Wishing you the best with your treatment.
AmyQ, that is absurd that you have to sign a release form for your results to be released to you! I feel livid with you, just stupid red tape. Praying for good results.
3-16-2011, I'm so happy you're already feeling improvement with your pain, sounds like the radiation is already working.
Linda, that all sounds pretty darn good to me and that's awesome you can stay with the Femara. I'm doing a happy dance for you and what a great idea to consult with your Ortho doctor. Your good news made my day!
Hugs to all, Annie
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Linda, that sounds like things are under control! What a relief Hugs Chell
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Congrats Linda!! Smile and celebrate!
Amy that is totally absurd! They are your results.
Good evening to all. Myra.
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Rushjackson,
Sorry you have to go through this with us. I just joined the forum recently but was diagnosed stage IV right from the beginning and have been getting treatment for over a year. Hang in there.
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Amyq,
I'm a bit late, but the answer is, no, I have never gotten flu like symptoms froma flu shot, just a sore upper arm which lasts less than two days and it's not too bad
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Thank you Amy, Annie, Myra, Chell and Hydrane for your good wishes. It will be 2 years next month since my dx, and I am very grateful for this stability. I thank my medical team and all of you on these boards for your support and love. Couldn't make it without you all.
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yay Linda! My head is still spinning from your update, but I'm glad it is basically good news! So glad you are able to stay the course with your treatment. I would be so frustrated about mo going out again and the possibility of something falling through the cracks! Big hug for great news
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Linda, everything sounds good. Glad to hear it.
Amy, I must do the same thing. I have to make a written and signed request for copies of my test results, and show ID when I pick them up. Waiting to hear your MRI results.
I just had a bone density scan, and the nurse asked me what Ive been doing differently, because the results were remarkably better than the last one, two years ago. Could just one Xgeva injection cause such a marked improvement? Also, I wonder if that might bode well regarding my bone mets. My next appointment with my onc is the 30th, prior to getting Xgeva injection #2. The shot went fine last time, no side effects, and my fingers are crossed that it will be the same again.
I'll be getting my flu shot in mid November. Is it okay to get it in the same arm that I get the Xgeva injection in?
I'm still having difficulty absorbing all of this. It's almost as if I'm going to wake up tomorrow morning, and realize I've been dreaming all of this. But, I know that's not true. Do you think I may request a CT scan at the end of my third month of taking Arimidex (about 3 1/2 weeks from now), to track if it is helping me?
Thanks for being there, lovely ladies. Good night and peaceful dreams to everyone.
~ Valerie
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I complained to my MO last week about new pain in my hip. He wanted to schedule an MRI to see what's going on and If lesions are there perhaps spot radiation would relieve pain. I went in for a MRI last week and was told that my results would be ready Monday (today) because they would rather me come in the office for results instead of over the phone and my oncologist was out the rest of last week. Well as suspected, there are mets to my left hip. My MO now does not want to do radiation because he saw no fractures. He said because my TMs are very low (21) that he would rather refer me to a pain specialist about the nagging pain. I guess I was disappointed that he didn't want to follow thru with radiation for instant relief. Anyone out there had same outcome where MO did not want to do radiation to area with known mets? He also mentioned something interesting and that was that my bone scan showed that they were always there from day 1. Well I don't recall that conversation at all or I wouldn't have been wondering if there were newly mets to the hip especially since I just started having pain there about a month ago. He said I might notice it more now because I'm more active but deep inside I know that's not the case. I still trust his direction with my treatment. I Feel great outside the pain in my back (spine and lumbar area) and now hip. Looking forward to seeing pain specialist. Keep me in your prayer
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