Bone Mets Thread
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Is there anyone that was operated on for bone Mets? My met was in my femor do I could no longer walk,so my hip was operated on and a nail was put in and in 12 weeks the bone regenerated with the help of Xgeva. This is how my breast cancer was diagnosed so I have always been stage 4. All of this started in May. I did not have my massectomy until Dec 2016.I am on hormone therapy,no chemo
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Z, you amaze me with your knowledge! I learn so much from everyone who posts. I am particularly interested in the THC CBD oil. I live in Ohio and I know a bill was just passed for medical marihuana but I don't know how to get it if I chose to. I would have to ok it also with the trial. I would like to get better sleep. I have noticed a difference in my ability to get a good nights sleep and today is my 7th day on treatment. Thanks for any help I can get!
Misty
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Madeline, I also had a rod inserted in femur almost 3 years ago.
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Apg, look on the Ohio Sisters thread - I posted some information there
JJ
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Well I get to go to my oncologists appointment alone. My son and his wife can't get off work and my daughter is not coming home. Sometimes I just don't understand why they aren't more concerned. I think this may be part of the reason my cancer came back... depression and loneliness! I must have done something really wrong years ago! Oh well...such is life I guess
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Sorry just venting and feeling sorry for myself
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Madelineg, I was dx'd with diffuse and extensive bone mets in January 2014. Shortly after my dx, I ended up hobbling around on a cane for several weeks due to a severe pain in my right leg that continued to worsen. Long story short, when I ended up in the ER because the pain suddenly became unbearable, it turned out I had fractures in both my femur and my pelvis. I needed a total hip replacement and a rod in my femur. What happened to you and to me and to several others here is not all that uncommon -- especially the femur rod. And like you, I think Xgeva has been a huge help in repairing the damage, to the point that I don't even think about it at this point.
Patty, so sorry to hear you are still struggling. You know my thoughts on where you should be getting input (hint: an NCI-designated cancer center... remember?...) on what's out there in the way of non-IV chemo options, including trials that your local onc has no way of hooking you up with. I get that you've been through a lot -- including those horrific bouts with C-Diff -- and I get that you don't want IV chemo. But I continue to believe there's more information and help out there than you've let yourself explore. Just sayin'... because you know I love you and want the best for you and your family.
MomATT, I love seeing the word "STABLE" in an update on Dani!!! And like Z, I think with Dani's hx, skiing, as much as she wants to -- which I totally get, having lived in Colorado & Utah ski resorts for many years and reluctantly stepping back from skiing myself since my Stage IV dx -- probably isn't a wise choice, unless she can possibly go somewhere that's very sparsely populated and stick to extremely gentle slopes. And so sorry about your ulcer. I hope you're taking good care of yourself.
Babs, so glad to hear that you're stable and handling your current regimen well, but I'm so sorry to learn about your DD's miscarriage. I'm sure that was heartbreaking for everyone.
I've been reading more than posting lately -- just the mood I've been in -- but just wanted to jump in tonight and say I'm still around and still following this thread... loving the photos. Delvzy, great pix of you, and that looks so much like Southern CA. And Chelle, great to hear you're almost in your house, and Jax is adorable!!!
Hugs to each and everyone here. Deanna
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Gracie - you are ALLOWED to vent and feel sorry for yourself here. Just a reminder...
Hugz
JJ
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Thanks jj. I feel really bad doing it because some of the women here have much bigger things to deal with than I do. I am just feeling very alone.
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Gracie - go ahead and vent. this is the place. we all post (or not) from where we are today.
it's a very lonely disease. i am not sure you have anywhere else to go with a lot of the stuff that comes up.
>Z<
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it's amazing that a Victorian beach looks so much like Southern California. We have had to close the beaches a few times this year as there have been sightings of great white sharks. I guess you guys have them? That picture is the barwon river next to Ocean Grove which is about 1 hour south of Melbourne 😀Gracie I find that as you and i had a similar diagnosis first and second time ( I am only 10 weeks dealing with this we are probably going through the same ups and downs. You are not alone but I find a walk or a gentle bike ride or coffee with a friend even going to work part time lift me out of the lows Dib823 do u live near the beach what is the temperature atm?
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Thanks Z. I'm feeling very forgotten and neglected by my family. You know I spent years nursing my mom through her ovarian cancer. Made sure she made it to all her appointments, cooked for her, cleaned house for her, then Tom got sick in the midst of it and I was taking care of the two of them at the same time. Tom had a second heart attack the day before my mom passed. I had to leave my moms bedside, literally to go be with Tom as he was having surgery, and then had to leave Tom after he got out of recovery to go back to be with mom and she passed that very day. Then I nursed Tom until his death ten months later. A week after his funeral I was at the specialists with my brother being told he had stage four head and neck cancer and would lose part of his jaw and possibly his voice bo. Stayed at the hospital with him literally in his room because he was scared to be by himself after surgery for about four weeks. Then spent 2 1/2 years driving him two hours one way to his doctor and oncologist in Oklahoma City and a therapy for speech and a learn how to eat again. The reason I tell you all this, is to try to put in perspective , why I'm feeling so neglected, Buy my own children! I am literally scared to death about my appointment tomorrow and when I talk to my son about going with me he said he couldn't get off work and his wife couldn't get off work couldn't take time off either. And I mentioned to my daughter how worried I was about going up there all alone, and she would come home but she has other things to do ! She's not working, but other things come before me! I really don't want to go through this walk all alone! That's what I was venting about! I don't understand why I spent the last five or six years of my life taking care of everybody else and now what I'm sick and need somebody,there's nobody here
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Hi everyone,
Happy for every lady that got good results, stable is awesome.
Patty don't give up just yet, praying for you.
I was put on faslodex and ibrance again due to progression in my lungs, Xeloda failed me. I don't know if this new regimen is working as I can't run nor play tennis anymore. I get very tired and out of breath. My next treatment might be IV chemo and I'm not looking forward for that. MO talked about navelbine.
Z thank you for all the information you share with us.
Take care!
Ziz
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Gracie, I haven't posted much to this thread but I follow it and happen to be here, online soon after your message so I wanted to respond. Of course, I don't have any great words of wisdom that could make your family step up and behave the way you hope they would. But from my outsider perspective, it seems that perhaps they are accustomed to you being the one to step up and take care of people. It would be nice to think that they would have learned by your example but it seems that they are too wrapped up in themselves to put your needs ahead of their own. Maybe you have a friend who would go with you to scary appointments? Or, perhaps you could ask your medical center to help connect you with a social worker. A SW could help you find resources to provide you with community support. Maybe even a therapist could be helpful in offering you advice about how you might make your children understand how much their behavior hurts and upsets you. I don't know, but I rage at the injustice of your situation. You need your mental health, not stress and disappointment, in order to fight this disease! Of course you should vent here, but it also sounds like you need some in-person support so I hope you will reach out to non-family. I'm sure there are people in your life and community other than your children that, if they knew you needed them, would be there for you. We are here for you. Hang in there!0
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Oh, Gracie. I'm sending you thought hugs and would give you sunshine in your soul if I could. I'm so very sorry. I can't come with you and be there for you (unless you live awfully close by), but you are in my prayers. I am praying for strength and courage for you personally, and for a recognition on the part of your family that you need them by your side at this time. I also pray that you may find a friend, maybe outside your family, who you can lean on when you need to lean. It's sometimes hard to admit being afraid, and then to have those fears ignored hurts. I am sorry. Gentle hugs and the blessing of my Heavenly Father on your precious head.
Hi. I've avoided this thread because I'm only tenuously connected at the moment. A lesion somewhere on the back right ribs (I can feel the pain at night), and something unpleasant that showed in the MRI on my spine last Monday. My MO seemed unable to explain it well, so will ask the RO when I see him on Wednesday. He will be busy because his current worry is the three tumors in my brain that are starting to do unpleasant things to me. I've only known about them since the 4th! They put me on Xeloda immediately upon diagnosis, but now I'm off until after the Cyberknife radiation to my brain that should take place next week. So, all the tumors in my lungs, lymph nodes and other odd places get to go ignored for the moment. What a world!
I read through the last few pages of this thread. You all are amazing and inspiring. I want you to know that I think of you all when I'm awake in the night. I started going to be at 9:30 every night because I wasn't sleeping well and have to rise at 5:30 every morning to get the kids off to school on time. Anyway, I am often awake between 2:30 and 3:30 in the morning, tossing and trying to get comfortable again. That's where the ribs come in. I started praying for people that I have read about in these threads, so now I pray for you by name and what I can remember of your circumstances. You are precious to your families, but you are also precious to my God. He cares about you and I talk with him about you. I don't know what he does for you, but I know he gets me through my days and he is there for you, too. I am a "doing" person, and this is all I can "do" for you beautiful people.
Love, Raewyn
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Gracie, you've been through so much with your husband, mother and brother, you must be emotionally exhausted. I know sometimes our adult kids can disappoint with what seem like selfish priorities, but when that happens, I always think back to how I was at their age. Maybe you were different, but I certainly regret not spending more time with my parents due to distance. I've also learned over the years that it's best not have pre-conceived expectations about how others should respond in any situation, but I also think it's important to be open and honest about your needs. I get that your son and wife can't take time off work, but your daughter's response is disappointing. You said she's not working. Any chance she's depressed between not working and your health issues? I'm just trying to see it from everyone's situation. Clearly, we don't know you, your kids or your relationships with them, but in general I think our kids tend to see us as unrealistically strong (especially when you've been the superwoman you described to us with your family members!), and maybe a heart-to-heart with each of your kids, letting them know how much their support means to you, and also finding out what's realistic and doable for them (maybe calling you before and after tomorrow's appt, for example) and what isn't (like using precious time off, if it's exceedingly limited, or if their jobs are too demanding). Is there anyone else who could go with you to your appt tomorrow? I would gladly go if I lived nearby!
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Patty, not sure if you follow Kelli Parker on FB but maybe check out her FB page and ask her to poll some metasisters for advice/help. I just hate hearing that you are in so much pain and struggling. Please know I'm thinking of you and your family. XO
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Thanks, Deanna
Yes, I have a friend who is taking me. I've had talks with my kids. They both know the ramifications of what's going on with me. And I've told them I really need them. In fact, I told my daughter last week that I was going alone, and she said maybe she and Dylan could come home, and then out of the blue last night, sorry, she has something to do. I love my children very much, but am just in agony trying to figure out what I have done, or could have done, or didn't do for them to be so non chalant about my feelings. As an aside, I also didnt' get anything for Christmas from my daughter, not even a card. And I know they spent a fortune on their kids. When I asked her about maybe somethimg was supposed to come in the mail I missed, trying to be diplomatic about it, she said "Oh, I was planning on doing something for you but I just never got it done." Oh, ok, well, I guess I'm going to be ok about that regardless. I still haven't gotten anything, or that card, and she hasn't said another word. She acts like nothing is wrong.I'm befuddled. I thought I was a really good mom. I spent that quality time, and made sure I told them how much I loved them. Neither has ever been in jail, done drugs, any of that, they turned out to be pretty good parents, both are married with four children each, who are good kids and happy kids. I have no idea what's going on.
What I do know is that I am alone. And I don't know that this fight is worth fighting for more of the same.
Hugs!
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- Gracie, I share your frustration, and I hate to be blunt, but here's my 2 cents. DON'T LEAVE YOUR SON AND DAUGHTER A DIME! Get a decent trust/estate attorney and leave your grandchildren your money in a trust that they won't get until they're old enough. You are supposed to honor your parents...your son and daughter are not honoring you properly.
- Your grandchildren are innocent in this, so they should inherit whatever you have left after copayments and deductibles and all the other crap we have to pay for with this disease clean you out. Your children KNOW what you've been thru with other family members, and it's time for them to step up and help you, but if they don't want to, that's their choice. Now you get to make a choice.
- Don't depend on them any more. They will only disappoint you. To empower yourself, you will need to find your own circle of care outside your family as others have suggested.
- Yes this is pretty crappy and depressing, but you have to put YOURSELF first now going forward, for your own peace of mind. Waiting for them to turn a corner just might not happen.
Since you're still waiting for that card from your daughter, you already know the score.My love and support are with you. We don't get to choose our families but we CAN choose our friends and support network.
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@ LMWL: Shane Dormady @ El Camino is pretty aggressive. Tho I don't know if that translates into out of the box. You might want to consult with Erika at Bay Area Cancer Connection to see if they have any recommendations.
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Gracie, my thoughts and prayers are with you. It is so difficult when our children disappoint us with their uncaring actions, but in some cases, the reason is they are unable to deal with your illness. Sometimes it is easier to stick our heads in the sand rather than face the difficult situations. Not the right thing to do, but, oh so human! Stay strong, take care of yourself, set up a support system that does not rely on your children. Blessings to you!
Diane
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Gracie, all of this must feel excruciating. Often we are so tangled up in our family situations, we are unable to figure out the dynamics. You must believe that you did everything you could for your kids to the best of your ability. You must be feeling so abandoned by them. If you have spoken with them honestly, using lots of "I" statements, i.e. "I am feeling abandoned by you", "I am lonely and afraid", etc, and they haven't responded, I don't know what else you can do. Does your MO's office have a social worker? You can certainly vent to him/her; the burden is less when shared. Some people just don't know how to step up. I don't get it, but it's true. You are foremost in my thoughts this evening. Love and hugs, MJ
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Gracie,
My daughter is just 10 years old so obviously I do not have the same problem as yours but I am no stranger to feeling abandoned in other ways. My real worry is to slowly make my daughter understand the seriousness of the situation we are in and making sure the impact on her life is not too great.
Best of luck with your appointment
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Gracie, I just wanted to add one more comment to the mix: Think of how many parents in this country have to deal with very sick children (leukemia, sarcoma, etc.) and they don't just walk away and abandon them because they don't know how to deal with it (or they don't want to deal with it). Yes I'm sure some do walk away, but the majority do not.
It might be a good idea to call a family meeting and try to get everyone on the same page. The elephant in the room is that we're all stage 4 and there is no cure for us...yet. We eventually have to start planning for our "end of days," and who is going to be there for us. Towards the end of hospice, someone is going to have to be with us 24/7, and hospice workers don't stay at your house 24 hrs a day.
These are hard truths, and I hope I haven't brought everyone down, but this is our reality, sadly.
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Gracie -
I was just thinking today about how something that I bitched and moaned about constantly only 3 weeks ago is completely gone. It reminded me how important it is to give voice to the things that bother us. The solution comes as long as you talk about it, discuss it, think about it, try different ideas. You have gotten great answers here. I have nothing to add. But I think it is very important that you work through this situation/feeling until you get peace. You can get there.
>Z<
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Gracie- just wanted to chime in with my own experience.
After being diagnosed stage IV, that first month of absorbing other people's reactions was the hardest thing for me. I was angry, hurt and afraid and no one was reacting how I expected. A counselor helped me tremendously with advice not to take it "personally". It wasn't easy (we're talking about my closest relationships) but she was right. The more people love us, the harder it is for them to process the news, and their own defensive mechanisms are in play (denial! avoidance!). It felt extremely hurtful, but everyone processes in their own way at their own speed.
I wouldn't want to presume I know your family relationships, but want to just point out that it takes time for the people around you to catch up to the situation. Especially if your children have always seen you as the strong caregiver. Looking back, I got good advice to give them some space and the time to process. Those relationships are much stronger now than I ever imagined possible.0 -
MommaRay,
My met is in my left hip and they decided to radiate it since it was my only one. Prior to dx and to this day, what helps the most with my pain in my hip is swimming and walking, and avoiding sitting. The pressure that is created by sitting at my desk causes me endless pain.
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I had 10 treatments. I should have added above that I was also at risk for pathological fracture, so treating it is allowing it to heal. It's weird. My pain was gone by the 4th treatment (this was in May), but it's back now (I blame my deskjob...standing desk is on the way!
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I had radiation to 3 separate areas, all for breaks. One 10-session tx was for ribs and T-spine, and the other two 10-sessions were for a hairline fracture to the right hip, and the other was for a bone chip avulsion, also right hip. They made the pain much, much less, and I also take OxyContin with ibuprofen for bone pain, and until recently, had Zometa or Xgeva monthly. I've had no other fractures in the past 15 months and the cancer is spending its time spreading to my lungs, liver and lymph glands in my chest.
With regard to family, I purposely keep mine at arms length as they would try to run the show, if you will. I'm talking siblings and cousins as I don't have children and my parents are gone. They all live between hundreds to thousands of miles away so they can't drop in. Fortunately I have a very large community of friends and 2 of them attached themselves to me when I was diagnosed 4.5 years ago. One, my BFF, (woman) goes to nearly every medical appointment with me, and the other, a man, has helped me to get and keep my affairs in order and is my #1 POA for Health care and the executor of my will. My BFF is also my POA #2 and I have two other female friends who are also POA for healthcare. Since I am about to wrap up my life my #1 and #2 go to all of my appointments with me to to make sure we have everything in order for the end of my life. These four people call themselves my death squad. They're very funny ....for those of you who haven't read much of my stuff I have a kind of a Darkside of the moon humor. I am well supported by my church community, and work colleagues, and there are loads of people I could call at the drop of a hat.
And then there's all of you, without whom I would likely not be doing as well as I am emotionally. As much as I adore my Death Squad, they have no idea what this is like for me. None of us have ever done this. And my prayer is they never have to do it again.
So Gracie, and everyone else, vent away....we do get it!
Love,
Patti
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Gracie and Lita I wanted to offer another prospective on the whole family issue. Not saying this is the case with you Gracie and I'm sorry you are feeling alone. I have not spoken with my parents for over twenty years. I'm happier for it I can tell you . For all I know my father has passed away and I would not be sad of that fact it were so. Holding back money will make no difference and would you want to have them their if that was the only motivation. Your best bet is to talk with them and try and clear the air. There are always two sides, in the meantime make some friends join some social groups or hire some help.😊
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