Bone Mets Thread
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I love hearing about all of the family celebrations, gatherings and travel. I've been living by the motto "Don't put your happiness on hold." and you all are great examples of that.
Saw my Onc today since I've now finished all of the very active early treatment. I was expecting to start Tamoxifan but it appears I'll be joining the Ibrance, Letrazole, Lupron shot crowd. This is partly based on me reporting some lingering pain in my hip following radiation but the doc said he wants to use a bigger gun. I'm going for a bone scan and a brain MRI (reporting some dizziness and random falls) and trusting that they will look at those and change course if appropriate. I feel like skipping Tamo slips a whole line of treatment but also like the idea of aggressive measures. I just don't know how to feel about all of this. Would appreciate hearing your thoughts
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Deanna, I'm not close at all, several hours, but will check into something like that, thanks for the info, I just never thought of that! I really appreciate that.
Am having a bad night. For those of you who are single and going through this, what do you do when you get one of those nights when you are just really down?
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Carol, I hear your roar all the way in Philadelphia! Keep roaring!
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Thanks for the anniversary wishes. I'm truly blessed to have the DH and DD that I have. My DS even called and my 2 granddaughters sang to us!
Carol I hear your roar and you're scaring the sh- t out of cancer!
Lynn what a wonderful day. It doesn't get much better than that!
Bab
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Babs - 45 years! I'm impressed. You must have had a foot in the cradle when you to married lol!
Lynn - I can hear you...
Jen - No reason why Tamoxifen cannot be used further down the line. It's just another option for later.
Gracie - I hear you. Not always easy dealing with this crap single and alone. I fixed those lonely nights with sleeping pills. Another bandaid but figured better than having those hamsters constantly in my head. Or I listen to some meditation/breathing on the net. You are so new at this and it's very normal to have those downs. They will taper off with time and become less frequent. I feel for you, it's unfair to be alone and dealing with MBC. And having no one physically there with us can screw up our thinking when we go in those dark places. I usually call a friend, go out for lunch or coffee, shopping or whatever to change that negative energy. As widows, I don't know about you but most of my social network slowly went down the drain after DH's passing. We don't fit in the network anymore other than with very few people. Building new friendships takes an effort but is so rewarding. I'm here for you Gracie. Anyway I can help let me know or pm me.
Edited to add: Lynn I will be with you in spirit today as you have your liver MRI.
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Thanks so much Linda. It's just hard. And I know you get that. Heck it's hard even having a spouse. But harder being alone.
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There is a special energy in this group, even though we cross paths everywhere on BCO, I am so attached to everyone here. My gosh, last year at this time I was a lurker knowing that the MO I was seeing was not doing a quality job of getting me diagnosed. My daughters literally dug my head out of the sand and took me to Dana Farber. Looking back only just a year ago- I am so grateful to how much I have learned and feel blessed to help share anything that will help the next person joining how cancer truly makes you a better stronger and caring person.
How lucky am I that I get to meet Lynne and attend with her a MBC shin dig at Dana in September? I really cannot wait to hug her. That is just one example of something good out of something bad.
I decided to stay over to DD's for a few weeks till I get next treatment lined up. With that being said, I am around 6 grandkids ages 3-6- enjoining it but they are a real handful
Hugs and Roars, Carol.0 -
Gracie, trying to sleep can be the worst. Sometimes I dread going to bed. It can be easier for me to just camp out in the family room on the La-Z-Boy with the TV on, and then I'll fall asleep when I fall asleep. Other times, I lay in bed w/ear buds on and listen to Pachelbel's Canon or other meditative music. I also have a CD with just ocean waves. It's an hour long, and at times I've had to play it THREE times before I fell asleep.
The extensive mets of cancer have totally disabled me, ergo I can't work anymore, so if I sleep in or only get 3-4 hrs, it's no biggy.
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Carol, Keep that roar going. I will be thinking about you tomorrow as you receive the results of your MRI and discuss your new treatment options. Stay strong. We are here for you.
Lynne
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Carol, I too live the roar and will be thinking of you tomorrow
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Hello everybody,
Newly diagnosed and just joined this group this evening. I have some questions that I can't seem to find answers to even with hours of internet searching. I'm hoping someone here can offer some information based on experience. Please forgive me if I am posting on the wrong thread as forums are new to me too.
I was diagnosed in May 2016 with Stage IV right out of the box. I have received a crash course in all of this, but there are so many unanswered questions. I have mets to several bones. I have been on Lupron injections and Letrozole since June and just started Xgeva last month. Prior to diagnosis, I was experiencing a twinge of pain in my back/hip. I attributed it to a muscle strain. It was a shock when I went for bone biopsy that they took sample from this area. Other than that area, I've had no pain to speak of.
The first visit back to oncologist after starting Letrozole, tumor had decreased in size, and the pain in my hip was gone. To me, that means the medicine is working. Question 1: how quickly will the bone repair? Is this something that takes days or months?
Question 2: I believe the Xgeva is supposed to help the bones repair. How quickly does that happen? Again, days or months?
I'm due to see my oncologist on Friday at which time she will order a PET scan. In the past few days, I am feeling that twinge in my hip again. I don't feel any further shrinkage of the breast tumor and I'm wondering if the Letrozole has stopped working? Would I feel it that fast? I've read about "the longer you can stay on your first medication, the better it is." I've only been taking this for three months. That's not very long - or is it? I was expecting to be on this for a few years?
Thanks so much!
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Hi Al- welcome to our group and at the same time I'm so sorry you have to be here.
My experience is after I get the xgeva shot especially when the mets are new or just starting to heal it really bothers that area a few days after the shot. I also would recommend that you try and work on your signature line so there is more information that can help us with commenting. Usually after 3 months of treatment you will have a bone and ct scan to see how treatment is going. I always encourage everyone to get a second opinion from a NCI affiliated center that is close to you. In my situation it changed my protocol and gave me better opinions. You can be on AI for years without progression. My bone scan will tell abnormal uptake and CT scan is used as a guide to see if those areas are healing depending on the kind of tumor that the bone has. Example lytic lesions when healing give a scerletic appearance etc. TM's are reliable for some too as a guide and many they are not.
3 months is not a very long time to be on treatment but certainly sounds like you are getting a response. Try and corrulate the pain with your shot and sees if it makes sense. Advil should help.
Hugs Carol0 -
Great information Carol and I needed to hear it too. Alcatel, I just started femera a week ago and am hoping and praying it works for a long time. Actually got a little sleep last night. My visit with the dentist went well. I have three teeth that we're just going to go ahead and pull. he completely understood what osteonecrosis was, and said at this point he didn't think it was worth trying to save those teeth although I didn't other time he would've said try to save them . So I have three teeth get getting pulled this morning he got right on it got me back in this morning to have those three teeth pulled and then I have a root canal on another tooth next week , and then I have two other teeth that need work but he said it's not going to involve the bone at all it's just fillings so he said we could do those at a later date but he wanted to get these done so I could get on that shot . He was so nice and was willing to do whatever it takes to help me try to get all this done financially ! Thanks to everybody that was keeping me in your thoughts and your prayers about this, Ireally was kind of freaking out about it but I'm feeling much better about it today
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Lita57, I used to be able to fall asleep on the couch , But now if I lay down on the couch I just toss and turn ! I have to have a the room completely dark with no light at all and a fan going for white noise to be able to sleep anymore . I don't know if that's just age that's making it more difficult or I'm sure that the anxiety from all of this isn't helping any!
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Carol
Thinking of you!
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Gracie- Good luck on all your dental work. I think it's very common to have sleep issues. I do find if I can walk or exercise earlier in the day I sleep better. I do take one anxiety drug before bed and it gives me a great nights sleep. Except of course when we are bothered by something that had our delicate minds in dark places. I know I do better for myself at 64 years old by keeping busy. It's amazing what alone time can do to aches and pain. If I think about things hard enough I can rate a simple fart a level seven pain. Look at my signature line. I truly believe that !
Hugs Carol0 -
Alcarrol - Welcome to this thread although sorry for the reasons that bring you here. It's impossible to put a time frame on how the mets will react to tx, both systemic and Xgeva or the like. I recently was told there was some healing after 2 years and 9 months on Letrozole. Wasn't expecting that! Sometimes pain on existing mets just occurs for no specific reason, healing can also cause pain. As Carol said, try to see if the pain coincides after Xgeva or after a specific activity/movement. Any new pain that lasts more than 2 to 3 weeks should be checked out. Hormonal therapy, although very powerful meds, take longer than chemo to do its job. You seem to have an excellent response. Good luck with your upcoming PET scan and keep us posted.
Someone asked about marrow mets without bone mets, sorry I can't remember your name and can't flip back to other pages. I'm sorry I don't have an answer for you. Hopefully someone will chime in soon.
Gracie - good to hear you have all that dental work sorted out. Good luck!
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Carol good luck on your new treatment plan. You will have all your ducks in a row very soon.😊 You are all so lucky with all the grandchildren.
Altar roll welcome welcome when I was diagnosed last year I was totally lost these woman pulled me out of the muck. Now I'm feeling better than last year , fitter stronger and smarter because of this thread. You are at the right place. Hugs from Canada🤗
Wendy
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wendy and Lindae. Waving hi
Alcarroll. Welcome. Looks like they answered your questions already, I just wanted to welcome you in our group
Carol. Thinking of you hoping for good results today. Enjoy those grandkids but remember to get some rest too
I am having another good day. My constant severe back pain is becoming less and less and my rib pain is completely gone. Feeling hopeful that X is doing its job
Hugs to all
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Hoping for only good news today, Carol! I'm happy to see you here posting this a.m.
Welcome, Alcarroll. You've already gotten some very good answers to your questions. I agree that response time can be very individual. I didn't have scans until 6 mos. after I started my first line treatment (which was Anastrozole, an aromatase inhibitor similar to Letrozole), and healing was noticeable on that scan, although it took a discerning eye to differentiate it from progression because the two can look similar on imaging. And I totally agree with Carol on Xgeva causing some bone discomfort within the few days after you get it. So to answer your question about how soon it works -- obviously, some of us feel it working the week we get it, but in terms of significant results, I would think that would take a least a few months, and response is always going to be very individual depending on the types of lesions and extent of damage. And while it's impossible to predict, I think you can reasonably hope to be on Letrozole for many months. There are women here on BCO who have been stable or better on it for several years. That hip pain you've noticed is most likely a SE from the Letrozole.
Lynn, loved hearing that you had all of your boys, DILs and grandkids together last weekend! Sounds like a beautiful day and much deserved!
Great news about your much improved pain, Patty! Fingers crossed and prayers being said that things continue this way for you!
MBC is never easy no matter what our family situations, but my heart goes out to you, Gracie, and anyone wishing they had more support. I just want to offer the thought that mbc shouldn't be a deterrent to any of us for improving or changing situations that don't make us happy. Of course, it makes it more complicated, but I hope it doesn't close anyone off to the possibility of new relationships. I've known several women who have found romance and even marriage after an mbc dx.
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Waving back sweet Patty. Again you put a smile on my face. Madame X sounds like she knows what she's doing!
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Hi All- I had a great meeting with MO this afternoon. MRI confirmed liver mets and my next line of treatment is faslodex.
Kapiton- no Ibrance with it, just faslodex.
I asked MO about my chances of it working. He used fishing as an analogy. You can catch a big fish at 5am with a worm, the next time you go to the same spot with same worm and catch nothing, so you try a different spot with a new bait. Then you wait. I was surprised that adding back in Ibrance with faslodex wouldn't be an option. He said he didn't think Ibrance was my friend so he didn't want me to hang out with it. Not enough research supports that keeping this in the mix would help me. As far as clinical trials, he felt this was the obvious go to.
I had my loading dose today. Felt absolutely nothing in regards to pain.
Roar and then Hugs,
Carol
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carol. Sounds like a good plan. Falsodex was easy on me...hoping the same for you. Love to hear your roar. Run scared cancer. Hugs
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Hi Carol, I am sorry that your liver mets were confirmed, but I am happy that your meeting with the MO went well. I hope that Faslodex treats you well, that you have no SEs, and that you are able to stay on it for many years. Sending hugs your way.
Lynn
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Oh, wow, Carol! I just looked up your "new" (today's) onc, and once again, I am so impressed. Another MD, PhD, and there's even a little video of him speaking on his bio page. You know I'm a UCLA devotee, but I would be at DF in heartbeat if I ever needed another opinion! I know seeing multiple docs due to yours being on maternity leave has been stressful, but I'm amazed at the collection of brilliant docs available in her absence -- each giving you great information on your situation!
I also had my Faslodex shots today, so we are on the same schedule this month. And so glad yours were painless, as they should be. Did you catch a peek at the needles? They look far worse than they are, but they're good for gleaning sympathy, if you ever need it.
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Carol,
Love how your plan sounds. I got sort of the same explanation about Fasoldex only when I left Ibrance & Letrozol. I had stayed on 125 for a year, but felt wiped out the last 2 months. I like the sound of your attitude with the new plan. I have not had any injection pain issues. I do follow the suggestions at the top of the Faslodex discussion board.
I also just got back from my appointment getting results from yesterday's PET scan. (Reminder-I've been on Faslodex 3 months with rapidly rising TM and increased thoracic pain). Scan results were overall pretty good. Most spots are stable. Three have increased- sternum (very slight), right femur (no pain) and T3. Thinking T3 is the culprit. I'll call RO tomorrow and set up a meeting to talk to him. MO said RO might want an MRI to get a better look. We'll see. But, overall-pretty stable. I'll continue on Faslodex. I haven't seen today's TM, but we are ignoring it for now anyway. So, gentle happy dance and a roar with Carol.
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Thanks so much Ladies for the warm welcome and all the information...feeling better today about the returning hip pain. It does not coincide with a recent Xgeva shot, but feel relieved to know that the Letrozole can work for many months...let's try for years! I have monthly appointment with oncologist on Friday, injection of Lupron and Xgeva right after and then, hopefully PET scan early next week. We are taking my seven year old to Disneyworld on September 14. Sure would like some good news to carry with me on the trip!
As advised, I will work on my signature line (think that's what you called it) and thanks for the tip.
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Deanna,
Yes I saw the needles!! I thought we were going to decorate a cake!!
Roars and Hugs,
Carol
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Carol,
Today was my fifth treatment but the first time I actually looked at the needles. Yikes! They are shocking. I took a step back and looked away.
I always try to keep a conversation going to distract myself.
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Carol-hoping the Faslodex is easy on you but pure terror on your cancer!
Patty-it sounds like X is working for you-it's been my best friend now for 9 months!
Alcarroll-welcome and sorry that you found yourself here. The women on this thread are truly amazing-such wonderful support and knowledge!!!!
Babs
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