Bone Mets Thread
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Great photo, Dee! What a treat you must have had seeing orcas like those so close-up!
Aurora, YaY to going home! I can only imagine how wonderful your own bed is going to feel!
Patty, love hearing that you are energized once again!!!
Myra, the news about your PET scan results is upsetting to me. I'm glad it wasn't a shock to you... glad you are confidant in your onc... and hope you can get into the trial you mentioned. But you've still been on my mind and in my heart as a "not fair" situation after so much happiness surrounding Mallory. Stupid mbc can sure put a damper on things fast.
Cristina, it seemed like when you went to Rutgers for a second opinion, that onc was really helpful. I can't recall without going back through a lot of pages, but what did she have to say about your pain? If you haven't discussed it with her, do you think maybe you should?
Hi to all. Hope everyone's having/had a nice Saturday.
Oh, and momallthetime... Is Dani by any chance BRCA positive? I'm asking b'cuz I'd posted something on FB that I probably ought to repost here, but one of the facts mentioned in an overview article from the Department of Defense Breast Cancer Program, is that women who are BRCA positive are exquisitely sensitive to diagnostic radiation, increasing their odds of getting breast cancer. I know Dani isn't old enough to have had annual screening radiation (e.g. mammograms), but I'm wondering if the same holds true for the constant scanning many of us get. Anyway, here's the link: http://cdmrp.army.mil/bcrp/pdfs/bc_landscape.pdf
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GG27 thanks for sharing your pictures. That must have been wonderful
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GG,
Thanks for that fabulous picture. You really did have an awesome day.
"I debated with myself about posting about our day with so many who are having a tough time of it right now, but I thought that we should all share in good times & bad. When I'm having a tough go of it, I love to hear & see what others are up to."
We have stage IV bc, so, sadly, there will always be someone having a tough day. I hope this thread will become a place where we can share in good times and bad and like you, I love to hear what others are up toeven if I'm having a tough day.
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GG,
Thank you for sharing that amazing scene - nature is so healing, even just looking at the pics!
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Gg I love the pictures of happy times, keep them coming.
CJnet, I hope you can get answers for your pain. My doc is a serious pain investigator and has given me many different. meds to address pain.(anti inflamitories, muscle relaxer, narcotics) I. just hope you can find relief.
Patty Great to see you posting!
Lindalou is your pain gone yet? Still using walker?
Auora Enjoy your home. I wish. you continued recovery.
I am sitting in a motel this morning as our home is still with. out power. Borrowing sisters generator today to get heat to pipes and get edge off cold. I have been eatting horribly. My routine is shot and my son is so sad and frustrated with the situation (he has ocd) it is breaking my heart.
Peace to all
send wishes for power my way!
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Good morning all!
Thank you all for the kind words. It was a wonderful day that I will never forget.
3-16, I wish I could send you our generator. I hope the power is restored soon. Hugs.
Happy Sunday to all, cheers, Dee
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Mary, How many days has it been now without power? I can't imagine how difficult it must be for your son. Home and routine is a safe haven for all of us. I'm not using the walker as much, and pain is diminishing a bit. I have CT, MRI's coming up first week in December.
Dee, Riding in a convertible with heat blasting and chilly outside is one of my favorite things to do. I'm so pleased to hear that you had a perfect day. I just put mine away for the winter.
Rachel, I'm 6 years out.
Marilyn how are you feeling today? How did Zometa go?
50sgirl, Your dh's biopsy is tomorrow isn't it?
How's everyone else doing? Best to all....
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I got out and went to Whole Foods!!! I did fine pushing the cart but DH insisted I drive one of the scooters. Good news... I didn't run anyone over!! First time to a grocery store in 8 weeks!! My family starts arriving tomorrow and I am so excited. Love seeing all the pics and wanted to add my positively today!! Hugs!!0
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That's great news, LovesMaltese!!!! Big smile as I'm sitting here reading your post. Sounds like you've really turned a corner!
(((3-16-11))), what a tough situation. Hoping things move fast to get you and your family back in your house. Extra hugs, prayers, and positive thoughts for patience and heat coming your way, although I know it's probably little consolation today.
Lindalou, I've also been wondering how you're doing, and good to hear things are a bit better. I'm not sure I realized you're 6 years out from your dx, but I'm encouraged to hear that and hoping whatever has been causing your increased pain turns out to be short-lived -- just a blip on the radar.
What's everyone doing for Thanksgiving?
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GG, The pictures are wonderful. Thanks for sharing them. I love to see pictures of and hear about good times. Life is full of great moments, and I feel that sharing them with others spreads the joy.
Mary, I am glad you are staying warm in a hotel and will soon have use of a generator, but i feel like you have been without power for a long time. I am sure it seems even longer to you! I am sending my thought waves your way in hopes that your power returns soon.
Lindalou, Thank you for asking about my DH. He will have an MRI tomorrow. CT scan shows evidence of kidney cancer that has invaded vena cava. The MRI will give a better picture of blood vessels,etc. Right now they think that the lymph nodes and all other organs are okay. We have changed our insurance from Medicare advantage to Medicare supplement plan so we will be able to take him to the best place we can. Needless to say, I am feeling overwhelmed so try to ignore the situation. We have been very healthy people all our lives and now we are both hit within a 5 month period. I don't know how we will tell our children. Even though they are adults, it will be difficult news for them to hear. I know there are others who have it much worse than we do. Anyway, we will meet with his PCP Tuesday morning for his final analysis of MRI and a discussion of where we go next. (Sorry to talk about bad things when we have so many good things going on.) He feels GREAT, by the way.
I do have a good thing to talk about. I went to a baby shower today for my nephew and his wife. This will be my sister-in-law's first grandchild. She is beside herself with joy. The shower was lots of fun. The baby girl is due December 27. My 9th grandchild, also a girl, is due on December 28. It could be a very busy week for the family. Of course, babies come when the want, so who knows what the actual birthdays will be.
Carol, I know that I would have knocked over displays if I had been driving the scooter. I am sure that I would have both embarrassed and amused my DH if I had tried. Although you would have been okay walking with the cart, your DH was just trying to keep you from overdoing it. Have fun with all your family.
Deanna,We are staying home for Thanksgiving. Two of my 6 sons will be here along with their wives and my youngest grandchild, who is 14 months old. We also invited my daughter-in law's parents since they would have been alone for the holiday. For us, that is a small gathering, but we will talk to everyone else by phone. Last year we had a snowstorm and lost power on Thanksgiving and didn't get power back for several days. We all drove to my son's house in Massachusetts and had Thanksgiving dinner (and heat and water) there. He was able to get a last minute Cooke, complete turkey dinner at their local grocery store who took pity on him. Surprisingly, it was delicious -just like home cooked. I really enjoy the holidays. It brings back so many memories from my own childhood as well as my adult years. We will take a cancer holiday and just enjoy all the love and blessings we are lucky enough to share.
I look forward to hearing what everyone else in US has planned for Thanksgiving.
Lynne
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So like - what is down time??? I can't find it!!!! My granddaughter had an ear infection so she was staying by me, she is hopefully going to school tomorrow! So i kinda stayed up Thursday night and after that i was a goner, I woke in the middle of the night last night thinking she will still call for me, no she didn't, she went home today, and I took my precious migraine meds and hit the bed for a midday sunday nap, NEVER did that when my kids were little, I was just real out of it. I hit the thread asap, and my goodness I got an hr worth of catching up!
Patty - i have missed your energy, so glad you are getting out there. And the boys, fantastic! how old are they now?? My daughter is the same way, she loves to spend every waking moment with the girls, but she loves when it's time to go to sleep!! Oh and then only to find them next to her in the morning!
LindaE - hope you will be able to see the results soon from the rads. Interestingly, Onco is so adamant that Dani does not have radiation, the truth be told, WHERE would they hit? it's all over!! but he is really scared she will get weaker and scared to weaken the bones further, Rads Onco agrees for now, I hope they know what they are doing.
Dee - i think it's beautiful that you are sharing with everyone life's beautiful moments, that is why everyone here wants to live so much, because of Orcas!!!!!! My hubby, always tells me, your friends will be happy for you, and your not friends will never be happy for you anyway.
Myra - one can only imagined your disappointment at progression. It's nice to know that doc has things under control.
Annie you are so right, Dani was never NED since the mets started. We don't even know what it means, she has been on a revolving tx constantly.
Deanna - No she is not BRCA, we tested right away after she was dx, having her 2 sisters was a big concern for her if that was the case, but one doctor that we had gone for an opinion, did mention that maybe the sibs should be tested also, i got mixed emotions about it and mixed reviews about it from other docs, so it's still on the table, but...I downloaded the link, i will read it later today. Thanks a lot.the other sis do have now diagnostic mamos, but what is the alternative! The truth is a constant game.
Lynne, what wonderful memories always, if the kids don't kill each other! We are getting together also, and looking forward very much. Then I will still make a Hanukah get together, which i already booked with the clan, so they will know it's just a coincidence that it's one celebration next to the other, but everyone gets enough time to plan their schedule.
Lindalou so happy for you.
Auroaya - such wonderful news, how great that you are home, you got your food and no one is waking you up at odd times!
Mary so sorry for the misery you have to go through! Being cold is so unpleasant! And then not having a happy kid, agh!! Hope this changes real quick!
Carol there is gr8 promise with Ibrance, Dani is on line to get it soon, we are always hoping!
3Holly - that's real funny if it were not true!
Daughter- hang in there! Maybe don't tell her you knew right after she tells you, you could always tell her at a later time, it won't change a/t her knowing that you knew, I think. At least you did your homework, and you got some idea what you facing. They keep telling me also, that while it's in the bones it's great! Yep that is what the doctors say!, They are happy, meanwhile i get 3 hrs of sleep, but so it goes. We love these ppl, and nothing could change that.
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Hello Ladies:
My weekend has been rather quiet. I've been working on a project at my computer. Nothing too exciting. I had a bone scan last Thursday and am waiting for results. Oncologist wanted it to check if the Ibrance is working. But I've only had 2 rounds of 14 days of it and have been off of it since 10/28/15. I will start the new lower dose (75mg) the day after Thanksgiving. There is NO way I'm gonna miss that because of nausea, etc. Also, I'm still waiting for the Marinol to get here from the PAP.
When I went through radiation treatment last year, I had 5 days of high dose to my T11 vertebrae, and by Wednesday I was very emotional & exhausted.
ChelleG - Thanks for sharing the photo of the puppy, he's soooooo cute.
Terre - So glad you're getting to move into your very own home.
DaughterLov - My oncologist told me that having mets to the bone is better than having it to soft tissues/organs. That it tends to progress slower. I sure hope she's right.
dlb - thanks for sharing that link, it was very encouraging and inspiring. I hope we all get to see that kind of miracle.
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thank you jazzy and momal. The encouragement is really nice to hear and as moms, daughters, and those living with the cancer, I hope we all have a wonderful Thanksgiving with our loved ones. Eat up!
My mom still insists on overdoing it and hoping she accepts our help throughout the day.
I might not let on right away if and when she finally shares the news but I'm afraid my reaction won't be appropriate (or how she'll expect me to react) . Also, her biopsy was last tuesday.. I wonder when the results will come in and if my father will continue to share the news with me. I hate being in the dark and not being able to fully support her but also want to be respectful.
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Thanks for all the kind thoughts. I HAVE POWER! I am feeling so greatful for central heat as it is in the 20s outside. My son has not had school since Tuesday due to the power outages all over town. He is restless and wants his routine back, but we are all happier with the heat and power on.
Thinking of all of you with loved ones with cancer 50sgirl, monallthetime and daughters love. Thoughts of healing and peace to your families.
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Good morning to all,
Dee, sounds like you and dh had an amazing time and I'm so happy for you! Keep sharing and how awesome it must have been to see the orcas!
50sgirl, sending positive thoughts to you and dh as he has his MRI today.
LovesMaltese, glad you were able to get out and do some grocery shopping. I bet it felt good. Enjoy your family time together.
Momallthetime, big hugs to you and Dani. Please rest whenever you can, I know it's hard but you do so much that I'm sure you're physically and emotionally exhausted.
Jazzy, prayers that your bone scan yields good results!
DaughterLove, it must be so hard for you to pretend you don't know what's going on. You're right though, your reaction may not be what she would expect given that you already knew but that doesn't matter. You're a wonderful daughter and you will be of great support to her going forward. Hugs to you.
Mary, yay to power! I feel for you and your family having been through that situation once before. We take these things for granted until we have to do without. Glad things will be getting back to normal for you.
Hugs to all, Annie
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Good morning all,
Lynn - so sorry about hubby. Am I right in thinking that the kidney issue was completely unrelated to the symptoms he had? This may have gone unnoticed if there had been no further investigation. Good luck with MRI and sending you and hubby prayers.
Loves - Happy to hear of your first outing!
Daughterlove - I admire you for being able to "fake it". It can't be easy for you.
How is everybody doing?
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Linda, Yes you are correct. My DH has had no symptoms of kidney cancer or any kidney problems (or any symptoms at all for that matter) although we now know that last month's pulmonary embolisms were a direct result of this issue. If the PCP had followed normal procedure, he would have sent my husband to a hematologist next April for blood work to look for clotting problem, and who know when this issue would have come to light. Luckily for us, the PCP decided to do additional tests just to rule out pancreatic cancer. He did not suspect kidney proble. ( It would have been nice to catch this earlier, but now is better than later.) MRI is done, and we will get results tomorrow.
This is a busy week. This afternoon I have to go grocery shopping and get the turkey and everything else for Thanksgiving. Tomorrow is dh's PCP appt, followed by my blood tests and Zometa infusion. Wednesday is cleaning and baking day, and Thursday is the big day. I am really looking forward to it.
Daughterlove, I have been thinking about you and your dilemma. I don't think that I would want my children to tell me that they already knew about my breast cancer before I told them. I don't think that anything would be gained. I know I would have been upset to learn that my husband told them when I asked him not to. My DH and I had a long conversation about how and when I would break the news, and I told him not to tell our children until I was ready. I think there were many reasons for my decision. I wanted to have all the information about dx and tx plan so I could share it with them. I thought it would make them feel a little better knowing that there was a strategy in place. I think it also made me feel a little more in control of the situation at a time when everything seemed so OUT of control. This is just my opinion, of course, and you know your mother very well and can make the right decision for both of you.
Jazzy, let us know about your bone scan results.
Mary, hooray for getting your power back. There is nothing like being warm and cozy in your own home.
Terre, How is the move coming along?
Patty, I hope you continue to enjoy days full of energy. Try not to overdo it.
Momallrhetime! You always amaze me. I know I have said it before, but your daughters are lucky to have such a loving, caring mom.
Aurora, how are you doing? Are you home?
Cristina, are you doing okay? I haven't heard from you lately.
Hi Annie, Caryn, Chelle, Dee, Myra, Holli, Deanna, I hope you areal doing well. Sorry if I forget anyone.
Lynne
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3-16. Glad too see power prayers worked
Hugs to all. J
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Hi all,
I had a consultation this morning with an RO - he answered a puzzling question that no one else seemed to be able to answer - what are the spots seen on my left and right hip? Turns out there are two old spots of cancer from 2 years ago with new cancer growing in them. My onc was sure they are completely new spots of cancer, my husband thought they're just old healed up spots - so in a way they're both right.
Treatment is to radiate my spine on the two news areas T 6 and L3 (I think) but it doesn't matter, he wants to avoid having them collapse. AND He's going to radiate both hips, so I go in tomorrow for mapping and if an area presents itself for a new biopsy, he'll do that too to make sure the cancer is still ER/PR +
It's always to concerning when we don't quite know whats going on but now that we do, I feel much better about the plan.
I hope everyone had a nice weekend enjoying nice weather.
Edit to add, this RO recommended Turmeric pills which can be purchased at Costco - I don't have a membership there but he does so he's stopping by to pick some up for me tonight. I thought this was a little unusual that he'd be willing to pick up a supplement like this for me, but I'm grateful.
Amy
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I was wondering if everyone could comment on what type of bone mets you have? Lytic or blastic? or both? Mine are all lytic. I think those are the two different types. I know that the lytic eats the bone away- and blasitic is different.
I met with my RO again today, he sees you every Monday and I have had 4 rads so far. I found out that I have to have 10 treatments to my femur (where rod was inserted) and also to my rib, but 14 to my hip where the largest lesion is and that is the one that does not hurt whatsoever. He was upset that I was using a cane to walk with and said I absolutely have to use a walker for stability. He said the cane is not going to give me the stability I need if I lost my balance. So that upset me.
I am also worried about the Ibrance/Femara working for me. My bone biopsy came back neg for er/pr but Dana Farber thinks that the way the stain was done removed the hormones from it.
Does your oncologist tell you where all of your spots are? I am so new at this and feel like I should know more than what I ask.
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Loves - All initial mets started out as lytic, then pubic bone and pelvis mets became a mix of both. The new spinal mets are blastic. My Onc tells me where they are, but then again I have all my reports. Radiologists are not always good at reporting all, that's my experience.
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Hi, Carol. I have such "diffuse and extensive" bone mets that I have honestly never bothered to learn exactly where they all are, although I have a pretty good idea from reading my CT reports at least once, and based on where my pain is when it's been at it's worst. So while I consider myself an extremely well-informed patient, I'm not going to identify and thus worry about every little spot, if that makes sense. When I was initially re-dx'd, the report said lytic lesions. Since then, one or more CT or bone scans noted both lytic and blastic (or sclerotic) lesions. Again, this isn't something I need to thoroughly dissect or understand. I just want whatever meds I'm on to work! Period.
As far as using the walker, I think that sounds very prudent for now. You know, after my hip surgery my UCLA onc made a very sobering comment that neither my DH nor I have ever forgotten -- that a fall now could kill me. This was said in the context of agreeing that I could do whatever I'd been doing prior to my hip/femur surgery -- except skiing -- something my ortho surgeon hadn't ruled out when he cleared me. But that comment was a huge wake up call that made me realize that repairing a second fracture in the hip area, for example, or one in my spine, may not go as well as it did the first time. I think I would heed your rad onc's advise for now -- at least until you're done with rads.
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Hi Carol, I have lytic ones. I had a 6 cm one in my iliac bone/pelvic area. It has since healed up. I have no more pain in my hip and I no longer limp. I also have 2 spots on my spine. L4 and L5. Those have also healed. I read all my reports on line. I have had no rads. I am triple positive. Is Dana Farber going to retest your sample? MD Anderson retested mine which was originally tested at a different facility and I turned up HER2 + when initially I was HER2-. My whole treatment plan changed. Hope this helps. Hi to everyone else. I read all of the posts. WAY too many to comment on everyone but Myra, I'm sad you had some progression and hopefully your MO is able to push it back. Daughterlove, I agree with Linda, don't say anything, your Father probably just needs someone to talk to. It's a really big secret to carry alone. Valerie, hoping you have an amazing Thanksgiving with your family. Hope everyone is having a wonderful week. XO
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Deanna right on about the meds doing it's magic. And so right abut being extra careful.
Amy you are one lucky gal for having such caring RO. I never used tumeric, should I buy it and give it to Dani? I don't even know how to use it?
Jazzy good for you.
Daughter again, love Linda and txmom comments re- Dad. He needs you too.
I just met 2 young women, sisters, in the early 30's, their mother passed away suddenly 6 wks ago. One of the young women were just dx out of the gate with Breast C Mets, yep, she ignored a lump, thought it would go away and the rest is hx. Sunday their niece got married, I was there. We danced like fools. I told them, what i was told so many times before - The world is a stage, we are all actors, some are better than others. I am going for an Academy Award, so are they. That may be your next calling.
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I just love all of you for answering me so quickly. Yes, I am using the walker everywhere I go now. I saw the look in my ROeyes today and he was not happy I was so happy that I felt good enough to use a cane. I left like a dog with their tail between their legs.
Deanna, i also have read my ct/pet scan results and I try and pin point each one they mentioned that are there and then I look for pain... I have pain actually where there is nothing noted (both scapulas) and it makes me think new things have come about in the past month and of course I start to think that the IBrance isn't working. The biggest lesion with the most bone destruction I have zippo pain. Go figure?
Linda- I read where they can be a combo of both too.. but so far mine are al lytic.
txmom- looks like I have the same met in the same spot. Mine is 6.2 cm but I never have had any pain there. That is the one where they are hitting the rads for 14 days. The one that I had the rod put in is 5.5 cm.
I will be under Dana Farber Care in January and hopefully by then we will know what is working and what is not. I have scans scheduled for mid Dec and another tumor marker test next Monday. Dana is relentless on thinking that this has to be positive, I have trust in them... What treatment did you do?
Momall- I am always praying for Dani.. Tameric is suppose to help with inflammation.
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Carol, I have both lytic and sclerotic lesions and have mets in upper ribs, spine, lumbar and pelvis. My onc always goes over the scans with me and of course I know my scans so well, that I can see in an instant if something is different. That in addition to reading the radiologist's report tells me exactly what is going on. And YES, use the walker. I don't like it either and just got done using one for a couple of weeks but it is worth it to keep stable. Last time I had a reaction to the contrast dye, and ended up speaking to the radiologist in person! That was great. The wall was full of my images and I was like a kid asking questions left and right! It was like seeing The Wizard OZ behind the green curtain.
Amy, Sounds like your onc is really on top of your tx's and is steering you in the right direction. You are having lots of rads...take care of yourself and don't get too fatigued.
Lynne, hope you get some good answers for the MRI tomorrow and that your zometa infusion goes well for you. Your Thanksgiving sounds wonderful.
Dune? How are you?
Deanna, how are you feeling? What cycle Ibrance are you on?
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Carol, I also have both lyric and sclerotic lesions with mets in both femurs, both tibia, both humerus, sternum, ribs, a couple vertebrae, and so on. Oh well, I feel pretty darn good these days in spite of all that. I did not have any mets in my shoulders, but I did have pain there (along with everywhere else) when I was diagnosed. I assume it was just referred pain rather than mets. Do you think that the pain you are experiencing in your scapulas could be from using the cane and walker or from using your arms and shoulders to lift and support yourself while you are recovering from surgery? I know how you feel though. Every time I have a new ache or pain I immediately fear new mets.
Amy, your RO sounds like a very special person. It is unusual to have an RO take the extra steps that yours has done.
Lynne
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thanks Lynne but I don't think it's from the walker. It's so weird that it is exactly on each scapula area but if I press there I can't feel it. It's when I move a certain wAy . It could be referred pain maybe from the T5 area. I get so tired of trying to spot exactly where it is and looking at my report and measuring to the areas. I can lay right on my back and feel nothing but then move a certain way and feel it. I hate noticing every single thing all the time.0 -
Hi Carol, I am currently on Taxotere, Herceptin and Perjeta every 3 weeks. Zometa every 6 weeks and Zoladex once every 3 months. That's the only treatment I've been on. Well, I was on Tamoxifen for 1 month before I was rediagnosed positive. My MO also thought I was positive even though my initial test came back negative. I am going to have 9 treatments of THP and then be moved back on to Tamoxifen, Herceptin and Perjeta. I had extreme pain when first diagnosed, like crying. It's all gone now. No pain meds. My Dr. does not do tumor markers. She said they are unreliable and the scans tell her everything she needs to know. I've had a good response so far as my bone mets have healed, my breast tumor has shrunk 50% and my lymph node has shrunk 46%.
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Hi All,
I was wondering what type of blood work/tumor markers are your doctors using? My oncologist was using the CA-15 which only showed a slight elevation that was still within range when they diagnosed me with mets to bones. I'm excited and nervous for my second opinion tomorrow...wish me luck!
Best wishes for everyone, always.
Karen
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