Bone Mets Thread
Comments
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I hope everyone is having a good Halloween. I'm just curious about the life span of someone with bone mets. I don't mean to be a downer. My doctor said it was a long term management problem. This gave me some hope. I think my meds are beginning to work. I'm on Ibrance, Letrozole and Zometa. I'm trying to think positive, go walking and eat a good diet. Anyone have some positive experiences to share? Other than some bone pain and muscle pain I feel good. I'm actually healthier now than I've been in twenty years, I lost 40 lbs from biking last year.
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Does anyone know how to get the treatments you have and are having in your signature? Right now only my diagnosis and start of chemotherapy date shows.
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rushjackson, I have the same problem. The Mods were not able to fix it either. I can't enter dates no matter what I do or what they tried to do. I was going to start a new profile but they didn't want me to. Good luck. If something works, let me know.
Amy, Thanks for the tip on liquid Advil. I am heading out to buy some. I had shortness of breath today too from the Xgeva shot, but not enough to call the doc about. I see him Tuesday and wlll mention it then.
Happy Halloween!
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Rushjackson - To answer your question: how long is a piece of string? How many stars in the universe? I'm not being flippant. There are 5, 10, 15, and even some 20 year survivors out there. And there are others who go much to quickly. It depends on so many factors. My MO also says it is close to being a long-term manageable disease. Here's to hoping your drug combo is working to make it that way for you!
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Hi KiwiCatMom,
Thanks for the honest response. Right now it's all hard for me to accept as I was recently diagnosed two weeks ago. I'm trying to accept the situation as best as I can and take care of myself. Tomorrow I go to my local episcopal church and I'm looking forward to the service and coffee hour afterwards.
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good evening all. Just checking in snd seeing what y'all are up to.
Bbl
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Hi Patty! Good to see your smiling post!
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Hey Patty good eveng to u. Hope you are coming along fine.
Linda thx so much for the info on Zometa, i drive myself crazy w worry. They will be giving it more often. Onco said he prefers to talk to us after the weekend, hmm, he thought he is sparing us, but NOT. Anyway he will make a decision onn Tuesday after BT's, it will give him a clearer picture. Dani is hesitant bcs she knows when she feels new stuff, and it's always proved that something new is gong, on,but they really wanted to do another 2 wks of tx b4 the scans, we'll see how bad the Bt are and then...well...She is keeping as busy as ever, we had a conference call with NP and they will make some kind of decision. I am so happy for you that it's getting a bit easier.
Cristina, you seem to be getting more comfortable with what you need, surrounding yourself with ppl that really matter is great. It's your best medicine. you did good, and look at you, you had this deep convo with hubby he is prob scared stiff, there are books on Amazon that could be helpful, they help husbands through having to deal with a wife that actually needs him. And of course, if he could speak to some kind of a professional would be just terrific, in your center there is no such a thing. We are doing this, my daughters they need to speak to someone outside the family.Good luck.
Terre,WHO do they think they are. these so called docs?? What an arrogance. I have been reading so many books on the subject with great writers and NOT is should not be like this. Just now I am reading a book by David Mendel, it's precious. The respect he says doctors should give to patients. How they are there to serve the patient....and so many other books like that.
Wendy, it's so cute he did that. I know it annoyed you, but...better this way maybe :} Lynne, love the sympathy angle. Dani, when I go with her to an appointment, never ever the pity look. And she used once the C card on a traffic stop. That was funny, the officer did not know what to do with himself.
RushJ from what I see with my daughter, everyday is a different form and different place that bothers her, so it seems to be the norm.
Dee that house is just precious, the memories, it's a piece of you. At least you got those pictures, It's like being in a dream.
Carol all I could say that it always shows lytic by my daughter, they say then it does show something active, there is so much that they take in consideration - you should tell them you need for them to explain it to you.
Ok guys, I am sure I did not address everyone, I shall...WARM HUGS
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Thanks for the update, momallthetime. Sending hugs to you and Dani.
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Hi Everyone!
Thanks MomAllthetime for an update, I was wondering the other day how Dani was.
Did anyone get pics of trick or treaters? We don't get any here at all, completely different from our last place where I would buy enough for 500 & we would run out by 7:30pm. I kind of miss seeing them all, especially the really little ones.
Hope everyone is doing ok. Don't forget to change your clocks back. Cheers, Dee
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I'll share a trick or treat little one, although not at my door. This is Harper and her dad, Ryan. Harper's mom used to work for me and she's very special to me. Harper is a strawberry. At Harper's request, Ryan is a cow - with a tail even.
The cow part cracks me up - Ryan has mellowed with being a daddy - this is not a look he would have done pre-Harper. 
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Hope everyone had a great Halloween. We had the parade and class parties at school Friday (pumpkin bowling!) and last night trick or treated for 2 1/2 hours. I haven't walked that long in months. I am feeling it now and happily still in bed, but what a lot of fun.
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Bluefrog, I want to try pumpkin bowling! Your children are adorable.
Terre, Pretty sweet picture of your friend's daughter and husband. I miss my son being that age and trick-or treating.
Moma, yes, thanks for the update. Hope Dani is doing ok today.
Hi Patty! Always good to see you post.
Myra, you are on my mind today. My mom's b-day would be today and I miss her. Were you named after someone in your family? My mom was named Myra after a special aunt.
Hoping everyone can take a walk outside today and enjoy a bit of fall. Best to all....
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Good morning all,
Hey Patty - good to hear from you! How are you doing?
Mommal - You and Dany will be in my thoughts this week. Praying for good news.
Lindalou - seems the Xgeva did a number on you? I read that shortness of breath is part of the SEs.
Love the pics! No young kids around here. Absolutely nothing to see last night.
Totally forgot about the time change! Took my pain meds an hour early ha ha. Time to change the clocks.
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Good Morning All, I have been reading diligently, but I have not had anything to add to all of your great responses.
Lindalou, Happy Birthday to your mom. There are not many Myra's around. In So. Fla. there are many Hispanic women named Mayra sounding the same, but with the extra a. Yes, I was named after an Uncle Meyer, that I never met. In the Jewish religion, your are named after someone who is dead to keep their spirit alive.
Dee, the house picture is beautiful. You certainly have an amazing green thumb.
Blue frog and Terre, love those Halloween pictures! We live in a condo now, so we don't get trick or treaters here. When we lived in a house, I used to buy full sized candy bars to give out like when I was a kid. Needless to say, I got every kid to my front door. I loved it!
Linda, so funny you forgot the time change. Here we get reminded everywhere. It gets obnoxious. It's almost as bad as a Hurricane is coming. LOL
Well, Happy November to all. I can't believe how quickly this year has flown.
Stay in the moment, as we all know, life is sooooo short. Myra.
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Good morning all!
Thanks everyone for the pics of the TT's! Love the pumpkin bowling to TP pins. Couldn't have done that here last night. Luckily the showers held off til after the fireworks but then it just poured. But now it's beautiful & sunny.
Terre, this pic is of our neighbour, he's down in California right now. He would never have dressed up to take his grandsons TT'ing but he's such a good grandpa. We laughed so hard when we saw this photo!
You are so right Myra. Life is short, I'm going to live it while I can.
Take care everyone, cheers, Dee
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good morning all.
I love all the pics. Will post some of my gang later when I fire up the laptop.
I didn't get to go trick or treating with my dss last night. Luckily dh always pulls thru . my bscknpain was horrible. So i had to double up on the breakthru pain med . which knocks me out. Stting up causes extreme pain can't even imagine walking door to door. Dss didn't get upset cause I didn't go. They knew if I went it would probably be a short night. Happy they were not upset but sad it is our new normal.
Hope to see some more pics of y'all kids and grandkids. Hoping everyone had a great day
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Patty - hope you get to enjoy some treats!
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Tumor Marker Question
I was dx at the end of May with Mets. My Pet/CT three weeks ago showed that things looked stable. No progression. I don't know if the onc could see if anything was shrinking. However, my tumor makers haven't really moved. I'm on faslodex and zometa - though I haven't had zometa in 6 weeks since they did surgery and put the rod in my femur. Why aren't my tumor markers going down??
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Rachel my TM are barely elevated and I can't walk the pain is so bad. Maybe they are not a good indicator for you i think my 27-29 was like 43. My alk phos is up though to 179 so maybe that would be a better indicator on how the bones are doing.
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Thanks LovesMaltese. My alk phos has been coming down, but no one seems to care. Tumor markers just staying the same. I don't know, it scares me. Today is just a bad day. Can't stop weeping. I flipping hate this and I just want to live.
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I'm sorry Rachel I know how you feel. think positive thoughts. It's so hard when you are in pain.
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Rachel,
So sorry that you're down. Do you know if tumor markers are accurate for you? There are many for whom they are not and there are mo's, including mine, who don't even bother to do them. Take care
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Hi exbrnxgrl,
I think mine must be accurate, because it was the tumor markers and alk phos. that alerted onc there was a problem in May. Ugh..feeling so sad.
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Rachel, you've been through so much, and your body is still healing from your surgery. As long as your scans were good, I don't think you should worry if your TMs haven't gone down, as long as they're not rising. And I think your alk phos coming down is a very good sign. How's the femur doing?
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My Granddaughter Ruby.
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Ellen, Ruby is soooo cute. I love the costume. She is obviously very bright since she is pointing to something that looks like her costume.
Rachel, I agree with Deanna. Don't worry about your TMs. It sometimes takes a while for them to come down after treatment starts, even ifthey are accurate indicators for you. Everyone reacts differently to treatments. If your alk pros levels are down, that is good. Give your body some time to heal from all the trauma you have been through. Being stable, no progression - that is WONDERFUL news. I would be celebrating. You need to take it easy and continue to recover from your surgery. You will continue to gain strength. I am sending you a virtual (((hug))). I hope you feel less sad soon.
Lynne
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Rach- If the alk phos is coming down that is a good sign. I am not happy with my MO and when I went to Dana Farber for my second opinion it was like taking a walk in heaven compared to what I have to deal with at home with MO here. I can't even get her to call me back. I was so upset this week that I almost went to the ER. As a matter of fact, I am able to write to the second opinion Oncologist and she answers my emails and is very positive and encouraging and said she would call me anytime. It is nice knowing someone cares. Maybe you can shop around for a different MO that is more sensitive to you.
After my Pet/CT scan results came back on Thursday I was really upset. My MO had me on a wild goose chase from July-October. The minute she saw a lytic lesion from an X-ray in July, she should have had a biopsy done right then and there. Instead it took until Oct 1, to get it. Totally wrong. I am changing insurances that will allow me to go to Dana Farber Jan 2016, and I know I will feel better doing that. For some reason, they don't like the Pet Scan as a way of tracking me, but will prefer bone and CT scan to follow me. Which bone scan confuses me because it doesn't show lytic and that is what I have. Maybe the Pet just lights up too much and really doesn't tell the real picture on what is healing and what is not healing. I am so new to this so I may be wrong ...
I assume I won't be scanned again till that time anyway, finding out this week if rads can help me. I am getting by today on advil and tylenol and can at least walk to the bathroom without shaking from pain.
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Hi,
Could someone help me? I had 16 rads for a small bone met I have in my pelvis area. I finished in mid September. I have some pain when I get up from sitting down or I start walking. I do not have constant pain. I also have had three injections of Falsodex. I am so tired and m tumor markers are 57as of two weeks ago. Does this mean I am having progression? I probably have asked this already. I cant find my posts. I am a full time teacher and am directing the fall musical. I have three trips planned-starting in March, but am afraid I won't get to go. I went 17 years until recur.
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Lisa, I went 18 years... Didn't come back in my breast either but in my bones. My TM don't tell too much... and my bone biopsy came back saying it was er/pr neg which they said is prob a false neg and they are treating me for the BC I had 18 years ago. Which was ILC. What treatment plan are you on? I would be interested in comparing us because we were so far out to come back.0
