Bone Mets Thread
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so cute Chelle omg so tiny I don't think my kids were ever that small. They are both so precious
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Chelle - Congratulations Grandma! They are both adorable. Mommall told us she was mostly going to other threads more pertinent to Dani. My niece is expecting a boy any day now. First boy in the family, too many girls lol! Can't wait to see that little guy.
LindaL - love that message that I will keep in sight.
Lita - anytime I see my vet's beautiful car, I know I contributed to it!
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Beautiful picture, Chelle.
I checked on momall's posts and she is trying to learn about the new combo Dani is on. Turns out it's a brand new combo and still in trial. I was unclear how she got on it. I don't think she knows much new at this point.
Hope many of you are having lovely weather like we are having in the middle of the country. It's a real relief from the heat and humidity.
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Chelle, congrats on the new little one.
Linda, very inspiring quote...I tend to 'dress rehearse' for a lot of things in my life, but interestingly enuf, I don't get all that worked up over scans and tests. W/St IV, you have to try and roll w/it (easier said then done for some, I know). Cancer's gonna do what cancer's gonna do, and chemo's gonna do what it's gonna do. Either it shrinks it down or it doesn't, and if it doesn't, it's on to the next drug. Of course, I may feel different about this if my cancer keeps spreading, like it has, but I'll face that when the time comes - I won't 'dress rehearse' for it. I'm grateful I can still walk and only need a wheelchair some of the time.
Kaplan, it's smoky here in No. Calif. as we have several fires still burning. Thank the Lord I'm not near them, but the smoke is burning my eyes and making my nose run.
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Chelle, your grandsons are beautiful, I'm jealous! Maybe one day...
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Hi ladies, I've been missing in action. We had a huge storm move through on Friday and I lost power and when it came back on, I lost several breakers out of my breaker box, so have lights I cannot use and at least five plug ins that have all gone bad.
Chelle, what beautiful children
You are blessed Today is my appt. with the oncologist to find out about my cancer. Am very nervous and doing it alone, so wish me luck! Will let you all know what I find out later.
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my best to you, Gracie. Hugs! You have us to use as a place to reflect. Since you are going alone, I suggest you get as much in writing as possible.
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Will be thinking about you today Gracie ((hugs))
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In your pocket Gracie
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Thinking of you, Gracie, and sending calming vibes to you and healing vibes to everyone from Sedona this morning.
Beautiful grandchildren, Chelle! Jacob is adorable!
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Thanks so much ladies
Ok, we know it's ER+. Which is what my last one was. They don't have the HER status yet, but he said he should have that and would be having his nurse find out what the hold up is. My last one was ER/PR+, HER2 -. So he's already called in Femara, which I can't pick up until Wednesday, so will start that on Wednesday and shots of Xgeva. I hope the Femera does some good and slows it down or halts it for a while. You ladies are a great inspiration and wonderful cheerleaders Am so glad you are all here Will let you know as soon as I get an answer on the HER2 status. He also said that the ones that have shown up are all very small, which I took as a good thing. He is very hopeful I can get five to seven years at the least. I told him I was shooting for 20 He said he was glad to hear that 0 -
Chill- your grandkids are adorable. Enjoy them!!!!
Babs
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Hi. I had breast cancer in 2001. Lumpectomy, radiation and chemo. In 2008 I was diagnosed with a new breast cancer at the site of my lumpectomy. Had a mastectomy and chemotherapy. Today i would tell you that I feel pretty good and really never think about cancer, or at least until last week.
I went in for a CT scan of my upper chest because of nagging reflux issues. Dr. said it doesn't look too bad, BUT you might want to get an MRI. We see something on your cervical sign. I asked what, how, who etc. and he said that the radiologist really couldn't tell but there is something.
So Wednesday I'm going for an MRI. I'm writing for two reasons. If it is positive I would love to have a bit of any idea of what I can expect. Am I looking at chemo and being bald for the rest of my life? Will I be an invalid? How much time can I expect?
Second, I am sick to my stomach panicked and I guess I just need a pat on the back.
Oh I should add that I have no symptoms at all, so this has really shocked me.
Thanks
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Fran, Shock and panic are normal reactions for someone who is facing the possibility of metastatic breast cancer. I would tell you to try to stay calm, but I know that would be impossible for you right now. Keep in mind that you have not yet been given a diagnosis, and it is possible that you do not have MBC. I hope that is the news that you receive - no recurrence or spread. If you do have mets, it is not as bad as you are imagining. Many of us are leading pretty normal lives. Many of us are not on chemo, are not bald, and are not invalids. We do expect to be in treatment for the rest of our lives, but it is not the harsh treatment you experienced earlier. I will keep you in my thoughts and prayers as you go for your MRI on Wednesday.
Gracie, Did you mean that the mets that show are small? Sounds like good news, WOOHOO! I am sure you will feel better about everything once you take that first dose of Femara. Will your onc consider adding Ibrance if you are HER2- or is that not something that is on the table? My goal is 20 years, too.
Lindalou, Thank you for that quote. I needed that reminder today.
Chelle, it is always good to see you post. I want to come hold Jaxon before he gets any bigger. They do grow quickly.
Dee, How are you doing on the reduced dose of Ibrance? I hope you are able to tolerate it better. Are you still feeling light-headed every day?
Faslodex round 2 for me tomorrow.
Have a good night everyone.
Lynne
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Chelle,
Precious!!! No words other than precious!
Thank you for sharing -
Amy
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Thanks Lynne. I appreciate the encouragement.
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Fran - bone mets have among the best prognosis of all types of metastatic breast cancer. everyone here has been through a lot but many are doing well for a long time. many of the treatments are rough but don't radically change your life or hair etc at least while they are working. a lot depends on the specifics of your cancer, but it's too early to worry about that. there is a good chance the MRI shows nothing.
we are a nice group but we all have terribly mixed feeling when someone new shows up.
>Z<
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50sgirl, Yes, the mets are very small in size, although there are quite a few of them, all are small. He didn't say what he would add, but he did say if it were HER positive, he would add something else. So, it's a waiting game to get that information in. The shots of Xgeva will be once a month, if my insurance approves it. They have to get prior approval.
Fran, I'm only about a month or so into my experience with mets to my bones. I can so relate to what you are feeling. I was also panicked and very scared for days. But things are calming down due mostly to the great women who I've met on this site. They really will help you out. I think I remember you from before. My original was in 2007. I hope things turn out well for you and that you find out you are still free of cancer!
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hey all,
You guys are a great group of ladies and I learn so much from reading this thread. I have a question tho...my dr recently saw a Lucency or lytic lesion in my T6 via cat scan. It did not light up on the bone scan so she ordered a pet scan because she said that type doesn't always show up on bone scans. It was visible as a hyper metabolic area on the pet ct but did not light up and the radiologist said it might be because it is just now the size that would show up and recommended follow up and MRI. My question is what will the MRI show that the other scans didn't show? I mean will they be able to tell more about its characteristics to see if it is mets? I have been on tamoxifen for 18 months so could it just mean that the medicine is keeping it from growing and that is why it didn't light up? Confused and concerned about all these scans. After the MRI she said we will just watch that area with future scans. Any help appreciated. You guys are so knowledgeable and I even feel reassured that even if it is mets it is still early enough to try all these treatments you all have described.
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Hi Ladies-
I just had my 2nd reoccurrence with 4 new spots on my spine, femur, sternum, and lower back. I switched insurance 2 years ago and have a new dr. who is not very aggressive. My reoccurrence last year he had me to Sabre radiation and the spot is gone! But this time around he just wants to switch me from famara to Flasodex and wait 6 months to see if it works. I am not a wait and see kind of person! After doing research, I did decide to switch to Flasodex and had my first injection yesterday. Man they weren't kidding when they said you would be sore for several days, can barely walk or sit. Anyone on flasodex that shed some light on how long the pain lasts? Anyone have reoccurrence where you just changed your meds and no radiation or chemo? Interesting that people are talking about bone biopsies because I have never had one. What is the purpose for having one if they show up in the pet scan? I'm extremely frustrated that I have had 2 reoccurrence's in 1 year and all he wants to do is change my medicine. Any other advice would be so appreciated!
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hi!
just cried my eyes out reading that people with spine mets never walk again..is it true? I have been having severe back pain running down my legs and so difficulty walking..bone scan showed mild uptake in lumber spine..onco says just take xeloda we will see it later. I had decadron injections on my hips for two months so thought that might be the reason..But now reading this is making me cry..anyone of u ladies has spinal mets and still walking?
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Mary -
I know many people, including a good friend and a fantastic and very active nurse at my hospital, with spine mets who are walking, swimming, biking and jogging and generally make me look like a pansy. I have no doubt that bone mets to the spine cause major issues and extraordinary pain, but certainly not always. I worry about these things too. They do happen so I can't tell you not to worry. But there are many examples of things going well. Xeloda has done wonders for many people. Radiation can relieve the pressure of the tumor on the nerve.
>Z<
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Mary,
Zarovka is being much too modest; her activity level has been an inspiration for many of us on this thread. I'm not a runner or cyclist as she is, but I'm 64 with bone mets in the lumbar and thoracic areas of my spine, and I just walked in after spending my morning trimming, mowing (not the riding kind of mower), and blowing off all of my walkways. When I was first diagnosed, I couldn't get out of bed without help. Hang in there and believe that better days are coming!
All the best to you,
Angela
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I'm getting a Zometa infusion on Sep 13th- can anyone tell me their experiences with it??
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For the record, I am in bed after having a tooth extracted. It is hard for me to imagine the kind of morning Angela just had and all I have is a terrible toothache. Bone inflammation/pain is incredibly difficult mentally. Angela, thank you for a great vision of where Mary and I will be soon ... my yard could certainly use the attention.
>Z<
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Hello Heather I've been on Faslodex for six months now and have had zero pain even the injections are not a big deal. They tend to store this drug in the fridge so it helps to warm it to body temps before the shot. Also the nurse needs to really take her time with injecting it usually with me about five minutes per hip. Also to avoid the Siatic nerve in Canada they do it on the side of the hip about a hands length from the hip . In the states I heard the shots are done on the backside which can create some serious issues. Good luck hope this helps.
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Silviah, I receive monthly Zometa shots, and I have no had any problems. Some people do experience SEs including fever, headache, fatigue, and aches and pains. This is most common with the first infusion. There are some things you can do to reduce the changes of SEs. I learned all these suggestions right here on this thread and follow them faithfully. 1. Make sure the infusion is set to take at least 30 minutes. Ask the nurse and she will set it accordingly. Some centers do it in only 15 minutes - not good! 2. Drink lots of water the day before, the day of, and the day following following the infusion. Hydration is important. 3. Take Tylenol or Advil the day of and the day following infusion. I think that's it. I hope you have an easy time with Zometa.
MaryK, I have mets to the cervical, thoracic, and lumbar spine as well as all other areas of my bones below my head, and I run around like a crazy woman. When I was first diagnosed, I couldn't move without moaning and groaning. Now I am virtually pain free most of the time. I do get a bit stiff if I sit too long or stand still for prolonged periods, but I move fairly well for an old lady. Don't believe everything you read on the web. Listen to the wise people on this thread who are living with bone mets. Everyone is different, of course, but there are a lot of unnecessary doom and gloom articles when you google.
Z-I have always thought that a toothaches is one of the most painful things to have. I hope you recover quickly.
Heather, I am a newbie to Faslodex. I just had my second set of injections today. My nurse followed the steps noted by Wendy, and I haven't had any issues except a bit of local bruising. I don't think that your pain should last more than a day or two. I was told to put cold compresses on the area several times a day if there is pain or tenderness. I am not sure if that will work.
Lynne
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words cannot describe the relief i am having right now..though i am younger than most of you ladies but count me in. I am only 29, can't imagine myself on a wheelchair. Hugs to all wise ladies who responded to my post and made me breath again.
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hi all
Lynn I keep meaning to thank you for your kind words. When I am going through stuff with my family, I remember how gracefully you went through your husband's illness. Things are beginning to calm down for me. My husband lovingly threatened to throw away my phone if I did not start taking care of myself.
Maryk I wanted you to know I am another person with spinal mets who stays active. I walk 3miles a day. It is my favorite part of the day especially when my family comes with me. We are all different in how mets effect us, so keep asking your medical team questions.
I love the grandbaby pictures just beautiful.
Enjoy the end of summer
Peace
Mary
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MaryK: I have mets in my thoracic and lumbar spine as well as 5 compression fractures in my vertebrae. I had searing, stabbing pain, but after Xeloda, Zometa and 10 radiation sessions to reduce the tumor in my mid spine, I can now walk without a walker around the house. I use a cane around town for safety and balance (if I fall again, it will be VERY bad). I still have lower back pain, but it is manageable. I'm doing way better than I was 4 mos ago.
Do be careful about falling. Otherwise, you should do well on meds.
L
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