Bone Mets Thread
Comments
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Stacey, so sorry that your mom is going through this. I can only imagine how helpless you feel but, your mom is an adult and you need to respect how she chooses to handle her situation. You can only offer love and support . Of course, you can gently offer your opinion and volunteer your assistance. Gate crash her appointment ? Don't even think of it! It would probably make her more resistant to listening to you and would seriously violate patient privacy laws. I know I would be furious if my daughters did that. You clearly love your mom but this is her journey. Offer her the support that she wants not what you want for her. Have you checked out our caregiver/family forum? I think connecting with others in your situation would be helpful for you. Take care.
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Hi Stacey, sorry to hear that your mom is having such a hard time. Please be assured that if she just has the one met to her sternum there is every possibility that she will be around for a long time not just the two years that were told to her. My doc gave me the same prognosis, here it is four years later, I'm still going strong and my mets are stable.
Here's hoping your mom recovers well from the chemo.
Love n hugs. Chrissy0 -
Its a shame that the dr told her 2 years because that's probably what has her so down. With only that one met it seems unlikely that she only has 2 years. Maybe you could print off some of the positive stories. There are some threads here with many of them. Many people who had multiple mets are here a lot longer than that! Maybe if you give them to her to read she will get into a better frame of mind. Stories of the people who have lived long are the number one most helpful thing for many of us! I hope she is feeling better soon. I think chemo can make a person depressed as well. Its also unfortunate that she won't get a 2nd opinion. Some doctors will even try to cure a person with only one met.
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What I'd like to say to your mom and you is that there is a LOT of living to do in two years! My doctor gave me no kind of time limit. The initial shock and subsequent chemo, surgery, radiation, took time to adjust to. Give your mom time to absorb all that is happening to her. Please don't be militant and march in and try to take over. You, as well meaning as you are, really have no idea what she might be experiencing. Just be there for her. Hopefully, in time, over the next few months, she will start to pull out of the nosedive she feels she's in.
I'm two years out from a stage iv diagnosis. Sure, at times it's been a roller coaster of emotion. For now, I'm stable. Treatments were rough, but I got through it. I've gone on to travel, have enjoyable holidays, got rid of unnecessary crap in my life (toxic people, unfulfilling obligations, things). I hope I have more years to go. I learned to live in 'today' and yet still I plan for a bit in the future.
Best wishes to you and your mom.
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welcome and good luck to your mom!!
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Thanks everyone and I am sorry if my poor choice of words upset some of you. I would discuss with my parents joining them at the next appt. I feel that they go there and are so overwhelmed by what goes on that they then leave and haven't asked any of the necessary questions.
My main hope in her getting a 2nd opinion is that she will hear some positive news. I was wanting her to try and see someone that deals more specifically with this type of cancer. Not just someone like she is currently seeing that deals with just anyone that comes in and therefore would see many varied cases each day.
Have any of you lovely ladies that have responded required more chemo quite soon after the first dose ? I think this has together within the fact she sees herself as just a ticking time bomb just done nothing for mind. She has hardly had a good nights sleep in the whole first course of chemo.0 -
Stacey,
A second opinion is always good. Medicine is as much an art of interpretation as it is a science. Without knowing the particulars of you mom's bc, ER/PR, HER2 status, it's a little difficult to speculate on treatments. For example, I am ER/PR+ and HER2- with one bone met. I have never had chemo and have been NED for 18 months on Arimidex, an aromatase inhibitor, and Aredia, a bisphosphonate. Also, many of us are on anti anxiety and anti depressant meds. All of these things are worth exploring, but ultimately your mom needs to come to a place where she is open to a broader exploration of the possibilities.
Caryn0 -
Stacey,
I'm sorry that your Mom is one of our BC sisters. Especially when you hear stage IV. I know this is very hard for you. Before I my cancer was found I had already lost my sister to BC and my mother was dx'ed as stage I. We have the BRCA gene on my mother's side of the family.
Although it may not seem like you are doing much, being there for your mom and dad is huge. From my personal experience as both a daughter and a BC mother of a daughter, support and acceptance is very important. When my mom was dx'ed she came to me first (my Dad was not an option -- turns out he was in the beginning stages of dementia) but what my mom had to say wasn't easy for me to hear. She was still feeling the pain of losing a daughter 5 years previous. She had been told that as a minimum she needed surgery and radiation, possibly chemo if lymph nodes were involved. But she told me that she was absolutely not doing chemo and her real decision was if she was going to do any treatment at all. She was asking me to support her decision even if it meant not doing any treatment.
Although I had learned from my sister that treatment is a very personal decision, my initial thought is that if I accepted my mom's idea to not do treatment then I would be Ok'ing her to just give up and die. I couldn't give her an answer that day. But after two days of thinking about it I really did realize that it was my mom's choice and the most loving thing I could do was support her. I called and told her as much and it meant a lot to her that I would support her no matter what she decided. I can't tell you how nervous I was the day of her appt to find out what she decided and told her doctor. Turned out that she decided to go with surgery and radiation. My relief was immense.
Now it's my turn in the barrel. I have a husband who is very supportive and I can talk to him about anything so the treatment decisions are made by us. My daughter (and my mom) now have the job of being supportive. My DD loves to do research and she occasionally sends me information that she comes across. But she understands that I am the one who needs to find an oncologist that I feel that I (and my DH) can work with. She'll ask questions and because I know she is not judging me, I am very open with her. The same with my son. Although he has a tendency to believe there is a "right" answer and when he gets into that mode I close down and change the conversation.
I'm sorry this is so long but my family has been touched many times by cancer. What we have learned is that we need to support each other, even if the decision that has been made by the cancer patient is to not be aggressive. That was my sister's decision after she went from stage III to IV. But that is not my path. We are all different and we just ask that those who love us, support us, don't judge us.
Please accept and respect your mom. Then listen. Then tell her how much you love her. Maybe, at that point, you can talk to her about options. You may feel helpless but you are not. It's just that you have a tough role. But I wish I was still just on the support side and not on the patient side - that role is even tougher.0 -
Stacey you sound like a very caring daughter, like mine. My daughter moved back to the east coast to help me out. Best thing you can do is just listen and don't push. Do regular things with her. take her out for lunch, assist with the house work and grocery shopping. Treat her the same as you always have. When she needs help with something she will ask for it. It is very difficult for someone who is used to being in charge to let others do stuff. DO NOT insist on going to the Dr appointment untill she asks you to. Your mom is still getting used to the idea of being a cancer patient.Took me around a year to calm down. I wish you the best of luck.
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Is anyone attending this Living Beyond Breast Cancer conference next month? I'll be there!
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thanks for posting it here, me!!!!
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If I was going to be in the country I would try to come, but I will be in Japan visiting my DD#1 and her family. So count me out for this year. Maybe next year.
Stacy, Like all the others have said you have a tough role of being supportive of your Mom and her decisions. If you really think she is not asking questions suggest that she write down anything she is concerned about or your Dad is concerned about since he does go with her. Then she will have them with her to be sure she gets the answers to those questions. If she does not have any then don't push, she will come up with some on her own when she is ready to hear the answers. I took a notebook with me to every appointment and wrote down everything the doctor said then went over it later with my husband who went with me to every visit just to be sure I had understood what the doctor had told me. That was my way to deal with being a Stage IV cancer patient. That was in July 2010, my husband still goes to every visit and every treatment. I have been stable since Dec 2012 and things are looking good for me for now. I know that can change at any time, but I am living every day the best I can and planning for a few more tomorrows. You and your mom will be in my prayers. Just love her and remember she is still your Mom and deserves your love and respect for her choices. Take care of yourself so you can be there for her. AJ
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How is everyone doing?
Unfortunately my TMs are back up again. Went up to 160 which was like a 30 point jump. Previously the movements had been about 15-18 points (up or down) per month. I also believe I have a new lesion on my left iliac. So onc wants to do a PET/CT. Had CT last month and it didn't show anything new. Just need to get pre-authorization done so I can get it scheduled. The sooner, the better.0 -
Christy, hoping for good news. Isn't it sad that we even know what an iliac is? It's a new bone that I learnt about a few weeks ago...
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I have been reading posts from this site for weeks now and I am so thankful for it already! I have learned so much more from you all then from anyone else! I come to this discussion board with concerns/questions about my mother. She was diagnosed wtih stage IV a few weeks ago. (Her first battle was 12 years ago.) Her oncologist told her breast cancer had come back to her bones. After researching a reading from this discussion board I've learned the term "mets." However when I asked my mother about her mets and where they were, her response was, "what are mets? my doctor said it is throughout all of my bones." My questions are, should she get a second opinion? should I start going to the doctor with her, especially since she had no idea what mets even are? and should I be concerned over the fact she has not been told anything? My main reasons for asking are because I'm concerned for my Mom and her not being told everything, and with my husband's mother being diagnosed with liver cancer 10 days before my mother we are trying to gather as much information about both as possible so we can come up with a supportive plan. Thank you all so much for your input! You all are amazing women!
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Mets are short for metastasis, meaning the spread of cancer to organs/bones outside of the primary site. We have a thread for family and caregivers of those who have stage IV breast cancer. This would be a great place for you to get support and ask lots of questions. http://community.breastcancer.org/forum/144
Wishing the best for your mom and family.0 -
Thank you! I will check that out!
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Christy...hoping the jump in TMs is just an aberration but and the scan turns out to show nothing new. Sending hugs.
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Bump
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Ktdealy I would definitely get a second opinion. I think that sometime doctors that are treating these amazing women forget to treat each of you like a person....it's not a manufacturing line. I have been encouraging my mum to get a second opinion, preferably from someone that deals specifically with the metastatic breast cancer she is suffering from.
She had only seen an oncologist at a hospital who just deals with everyone that comes in with cancer. So as you could imagine they would see a wide range of patients each day.
I have a question that some of you may be able to answer. My mum had just finished her chemo and had a few weeks until she starts her radiation. She had severe fatigue during chemo and that has subsided but now is just aching from head to toe, particularly her back. Is this common has anyone else experienced this ?? And if so howling did it last for ??0 -
Stacey, what type of chemo did your mum have? I had taxotere, and my pain has lasted for over 2 years, along with the fatigue. For some women, this eases up over 6-18 months, for others it lasts 5 or more years.
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Hi Stacys.
The onc or local doc might have something for the aching. My experience was a slow recovery from the side effects, nourishing food I felt like eating, exercise a little at a time & having the support of a physical therapist if possible. Also she should sleep as much as she wants to as long as she can at least walk some when she's able. Oddly, this period can also be boring once we start to feel a little better, maybe a drive in the country would do her some good.
Hugs to both of you
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Hi all - I've been off the boards a while. A combo of crazy work hours, and also profound sadness whenever I log on and see that another fellow mets girl has passed away. I'm on Xeloda, Tamoxifen and Xgeva. I had my 4th shot of Xgeva, and about 3 days later my jaw started hurting really badly. It freaked me out. It still hurts. I think I'm going to talk to onc about possibly stopping Xgeva. In addition to the pain, every time I took a step, I felt like I could feel my teeth 'rattle' in my gums. My whole mouth was so sensitive. I just can't have my teeth falling out of my head or something on top of everything else. And I do need to get some dental work done - I just hope a dentist will touch me now after having had 4 Xgeva shots.
Just wanted to say hi.
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Liz, good to see you back.
I started Afinitor/Aromasin last week. So far the only SE is loss of appetite - not overwhelming but there. We'll see how it goes.
Leah
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I had my teeth cleaned today. I got a recommendation from an orthodontist and he was very knowledgable about the disease.
I just got my scan report back. I knew I had progression because my right butt cheek is killing me just like my left one used too. Of course I'm on morphine now, so I can't imagine it would hurt without it. My scan report said there was "increased activity on my right side, but still stable." I just don't get it. I'm happy that I'm scheduled to see the pain pump person next week and I can get the dosage increased.0 -
LizLemon,
I've been on Xgeva for about a year. After my shot last August my teeth and jaw hurt constantly for a few days. I was apprehensive about my next shot, thinking it would happen again, but everything my teeth and jaw haven't been bother at all by the last 8 shots.
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Thanks so much!
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So I had my second infusion of Zomera Thurs. Yes, it's true you can feel flu-ey afterwards.
And it's miserable.
Leah
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Had Zometa on Thursday after not having since August, so far so good, feeling fine..
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I get Zometa monthly. The first infusion brought nasty flu-like symptoms. Now it's extreme fatigue to the point where the next day I will be a couch potato. I think of it as a monthly time-out!
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