Bone Mets Thread
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Hello ladies, I am a newbie and very very scared! I was told today that I have bilateral cancer. Idc and ILc. It has spread to my bones. I feel fine and can't believe that this is happening! You are all so strong, how do you do it? I haven't been started on any kind of treatment yet. Will I ever have another moment that isn't consumed with thoughts of cancer? I love my life and want to live it for many many years! Please help, I'm so confused and frightened
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Chelle, I promise you that it gets easier once your treatment plan is in place! There are so many drugs out there (with more on the way)… there is real hope for many years. This is a wonderful place for support. Sending you love!
Mamma, I haven't had a PET scan since diagnosis. It may be an insurance thing. Think I'll ask my onc. about that.
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Thank you so much for hearing me. sitting in my room I feel so alone.it means so much to me to have some one to talk to that really understands my emotions. I'm not sure how to make my ex show up yet, but am stage 4 with bone mets right out of the gate. Pathology isn't back on the bone cells yet. But the ILc and idc are er pr positive. How much has treatment and the side effects changed your life? I love you for writing me back and giving me a glimmer of hope in my darkest hour
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not my ex. Do
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oh geez diagnosis I mean
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got to love autocorrect!
I don't know much about ilc. All I know is that the first month seems like a whirlwind. Life flipped upside down. When treatment starts, get settled in, kind of. I will be honest...it is no fun. Any of it. Everyone is different. One piece of advice I appreciated in the beginning is--don't compare yourself with anyone else. I will have my three year cancerversary on Monday. I have thought about cancer everyday. In the first year I was so mentally tough. Then I started to grieve the life I had lost. I have had a lot of good days though too. I feel like I'm on a never ending roller coaster. And again, this is just my own experience. You will find your own way. Just stick around here and lean on these ladies when needed. We all "get it." Good luck0 -
Chelle, I was diagnosed in Jan. 2010. I had a horrible, scary start with emergency surgery to my spine. That first year was tough, BUT 2011 began with NED (no evidence of disease!). I was on an anti-hormonal, and would remain in remission for over four years. The side effects got easier as time went on. There are lots of ups and downs for the majority of us. But you will gain strength! And you are never alone here
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Thank you Kjones ( love the name) I am geared for treatment to not be any fun. and will look forward to the good days. I will put on my fighting gloves and make the best of every day. I will also lean heavily on all,of you from time to time. I do have a loving supportive family to help me through it. Hubby and three daughters. 25,20 and 13. Also a five year old grandson. They make life worth fighting for. I have spent many hours in line to ride roller coasters, hold on, here we go
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steel rose, I can't tell you how much it means to me to hear it. The hope I get here is unprecedented. From the bottom of my still healthy heart, I love each and every one of you! You give me strength, hope, and compassion! I might just be able to sleep, knowing you are out there
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Welcome Cuculi and ChelleG. I'm so sorry about both of your dx's, but glad you've found us. Cuculi, I can only imagine how emotional this must be for you and your hubby, having lost 3 parents within 3 years. I'm so sorry. And ChelleG, the dread and fear and confusion you are feeling now is something we all vividly remember. It's really hard to wrap your head around a Stage IV dx at first, but as others have said, it honestly does get easier once you get started on tx.
Patty texted me today. She still feels horrible. She saw her onc on Tuesday and she's hoping the new antibiotic he gave her for a raging UTI will kick in quickly and work better than the one she'd been on, which hadn't helped at all. She's still dealing with extreme exhaustion and nausea/vomiting (if she moves). She said low counts from Ibrance have probably contributed to her body not being able to fight this infection.
Rose, oh I'm so happy to hear you went to UCLA. I can't say enough about how wonderful they are. Did you see Sara Hurvitz or someone else?
Leah, that's really helpful to know about Doxil, but I can only imagine how freaked out you must have been to see a 400 pt. jump in TMs! Yikes!!! I think I would have passed out!
I heard back on my recent ONJ consult today, and they do want me to have another tooth pulled prior to starting Xgeva. (It's one that was fine until I had the one next to it removed, and suddenly it started moving just the tiniest bit, and my dentist here was doing a wait & watch, thinking it would settle down.) I guess I should be grateful that UCLA goes to the extent they do to try to protect us from ONJ, but I'm NOT happy about the recommendation, since if it wasn't for Xgeva, it wouldn't even be an issue. Grrrrrrr......
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Chelle,
I am going to echo what many others have said. The beginning is difficult as the realization of the seriousness of stage IV bc sinks in. Since we all have different treatments, different volumes of disease and other variables we learn to live in different ways. MBC impacts our lives differently, from severe impact to minimal. Minimals are the minority, but they're out there. Emotionally, you just decide, at some point, that whether you have 10 days left or 10 years, you can be miserable or find whatever happiness you can. I am NOT happy to have MBC but I am happy and live everyday as best as I can. I've taken Effexor since the beginning. It can be very helpful). This is not the way any of us imagined living our lives, but we just keep living until we can't.
Caryn- 4+ years NED0 -
mamma ray. I think where you get your treatment seems to control how often PET scans are done. I was dx stage IV 11/2014 and I have had 3 PET scans. one. 11/2014 for dx, one 3/2015 to check that rads to spine worked and one 7/2015 due to increase in pain. MO said if Pet scan showed progression he would change tx. I am so greatful that my last 2 pet scans have shown good response to treatment. Not NED yet but MO says stable. Also my tumor markers do not prrovide any information, so this may contribute to more frequent pet scans.
Dunes I wish you the best of luck with rads. My rads to pelvis helped so much with pain. They warned me about urinary tract SE which I had. but medicated by RO and very manageable.
Cuculi. So sorry you have to be here, but there are such supportive and wise women here. You already. have been given good information. Do work with your doctor to get a good plan for your pain. (medication. or radiation tx, and lots of alternatives - I like naps) Coping with this is much. easier when pain is managed.
ChelleG So sorry for your new dx. It is scary at the beginning. It must be challenging to have mets from the beginning. But I know from reading bco there are many who have mets from the beginning. Once you have a specific tx plan you will. be actively engaging in hope. If your doctor can refer you to a cancer navigator, this can. be a great way to get all the information you didnt. know how to ask for.
Have a. good weekend everyone
Mary
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I am definitely a very happy 46 year old woman. Through life I have been thrown some very hard punches. My best friend and sister died at the age of thirty two. She had been diagnosed with multiple sclerosis at the age of 19. She was so strong through the he whole thing. We laughed everyday, enjoyed everyday. Even as she sat in bed for the last 8 years of her life, there was always a smile. In honor of her strength and happy spirit. I must never give up and give in. After my last post, my husband and I sat and laughed until we cried at some crazy pictures our thirteen year old Katey took of herself. Everyday is a blessing. I choose to continue to love life, even with this stupid disease! It may eventually take me. But I will have the last laugh
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Chelle,
A sense of humor is a powerful weapon. Use it frequently. My attitude may not change the course of my disease but it makes the road a lot smoother. MBC may rob me of my body, and my life eventually, but I refuse to let it rob me of who I am.0 -
Welcome Chelle. I'd just echo what the others have said; it does get better with time and easier to deal with emotionally. That said, we all have up and down days. And everyone is different.
Thanks for the update on Patty. Sending good thoughts her way.
Dune - good luck with the rads.
We got our valuation report today, last hoop to jump through. We sign papers next week and move into our new (to us) house in November. Quite exciting!
Hugs to all,
Terre
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Chelle, so sorry that you have to be here! I stood in your shoes just this April and felt exactly like you do now! The shock of this all was so overwhelming and for the first time in my life I needed some Xanax to get through. My advice to you is to go back and read,read,read this thread. I have learned more here then any doctor could ever tell me. My onc is very optimistic that while she can't cure me, she can knock this Cancer back and keep me going for a long time. There are many treatments available with more new ones to come. Mama Ray, I have only had one pet scan when I was diagnosed with mets, my follow up scan was a ct of chest,and,pelvis. My onc is doing them every 4 months, she is always concerned about the radiation, but said if my TMs increase she wouldn't hesitate to do sooner
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Welcome Chelle. I can only reiterate what all the other women here have said. Very knowledgeable and supportive in every way. Take your time, breathe and hater yourself. I was where u are 1 1/2 yrs ago after 16 yrs of NED. Talk about a shock! Resisted Cymbalta for a year, but finally gave in. Helps me considerably with anxiety. I was on no meds prior to this dx. Now so many meds and supplements it seems like I am thinking about mbc all day.
Terre, so happy about your house situation. It will make you feel so settled having some really good permanency in your life.
My onc gives PET scans every 3 months. Last one was good. Showed stable and improvement. Next one should be in October.
Well, have a good day all. Hope those with pain are better, those with NED stay there and those just starting peace. Myra.
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That should be center yourself. Myra.
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Chelle, it's weird to say but you'll kind of settle into this. It's truly a heck of a thing to say, but that's how it's been for me. In the beginning the doctors took over treatment and I sort of went along for the ride. Later I had more time to think about it. For me that was harder. From the beginning I had the support of bco, and it has been my lifeline. I feel like I've made friends here, and we are traveling this road together. I hope that you will feel the kind of comfort this has been for me.
Terre! Great news on the house! Oh, I can't wait to see the pictures. I especially love before and afters, but I'll take what I can get. So, I guess your weather is getting nicer now that Spring is in the air. I think it's around 80F today, and I'm going for a stroll. Autumn is moving in, which is nice, but I can't help it. I don't like Winter. I need to stay in the present and be grateful for its gift.
Mary, I love naps too. I really like naps! LOL
Myra, what a great,totally awesome sign off on your last post. Gotta get ready for strolling. Have a good day.
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Welcome to Cuculi and Chelle. There are amazing strong informative women here. You are not alone.
Dune- Best wishes as you start your rads and that you get pain relief soon.
50sgirl- The concert last night was fabulous! I actually forgot about cancer for a few hours and enjoyed the music. Members of the Platters, Temptations, and Drifters performed. 'On the Boardwalk' was a favorite.
Myra- any new pictures of your grandbaby?
Hope - please check in with us if you can.
Linda
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momma ray, sorry to hear things aren't working to there best. I did pet every third month to, until ins denied it. Now mri and bone scan.
Hope everyone can have a good day
Hugs to all
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Good morning all,
Cuculi and Chelle - a warm welcome to you both but sorry for the reasons that bring you here. So much good advice has been given by wonderful ladies here. We are here for you. This site has been a lifeline to me since dx Stage 4 out of the gate in Nov 2013. Keep us posted!
Leah - Oh that must have been a shock to you but good to know that's how Doxil works and other tx as well I would think.
I had only 1 PET when I went for a second opinion. I have CT and bone scans every 3-4 months.
Deanna - thanks for the update on Patty. She's certainly going through the wringer these days. Praying she bounces back slowly but surely.
Dune - glad you're getting those rads and wishing you instant relief ! I can relate to the pubic bone pain - not fun. I sound like a broken record I know, but the first rads to pubic bone was 5 tx and months later 1 tx. Can't even begin to tell you how good it felt.
Terre - that's absolutely awesome! congrats! Hope the move goes smoothly.
I'm so proud of myself with my walking. Less stiffness and overall good feeling.
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Morning ladies,
I've had a rough few days. Just struggling w pain, nausea and with a husband who sees himself as supportive but really is more emotional baggage than anything else. I truly wish he would give me support without any conditions but I'm lining up other support just so I no longer need to rely on him. It sucks but I need to keep myself safe and maybe it will help him if I have more help. Some people just don't deal well w this diagnosis, how I wish it wasn't my husband. But it is what is is, and at least I have you guys!
Welcome to all the new ladies!
I think I forgot to take my pain med this morning but honestly can't remember and don't want to overdo it right now.
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Cristina, you are very strong and wise to recognize whatever is going on with your hubby and to seek the support you need elsewhere. I don't know if this book would be any help to him, but it was recommended to us when it first came out, around the time of my first dx, and I've heard many good things about it since then. It's written in guy/sports terminology. I'm just not sure how pertinent it is to our situations (vs. an early stage dx), but you may want to check it out if you're in a bookstore and if you think your hubby might read it. http://www.breastcancerhusband.com/
It's never easy, but like the dx itself, I think it's probably harder for younger men to step up and/or roll with this dx than it may be for more seasoned men. No matter what their age, they need and are fortunate if they have a support system, whether that's family or close friends or a support group.
Terre, that's wonderful news on your house!!! I'm thrilled for you! We need photos!
MamaRay, so sorry about the disappointing scan results. My ins. co. only allows CT & bone scans, so I can't comment on the PET experience. But what are strontium injections? I don't think I'm familiar with those.
Happy Friday to everyone, and special thoughts going out to those having tests or infusions today. Wishing a beautiful fall weekend to everyone. Deanna
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Just to say welcome all new ladies!
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Let me add my Welcome Wagon warmth to all the new ladies. Just sorry we have to meet this way. Wouldn't it be great if we could all meet at a bar (thanks for the visual Leah) where we could eat, drink and forget all about BC for the rest of our lives? Of course the bar would have to be on a beach where we can dip our toes in the warmth of healing waters. Okay - back to work...fantasy over. But welcome all.
Amy
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To the newbies sorry that you're here but you have come to a great group of ladies. To Cristina. some husbands are supportive, some live in denial, I've been with my husband for over 44 years. Sometimes really stupid stuff comes out of his mouth. When we went for the chemo talk before my first infusion he actually said to me "it's not all about you" boy was I pissed WTF I was very upset about starting chemo and he says it's not all about me. I generally do not allow him to come to appointments with me anymore and I try to ignore the stupid stuff But every once in a while I take out my virtual baseball bat out and bob him once or twice on the head. makes me feel better.
Had my infusion today and did a lot of thinking and remembering of Sept 2001 Remembering a day with beautiful weather. A normal day like so many others Took mom in law to the dentist in Fort Lee NJ The dentist has a great view of the city l Heard the news of what happened and could see the towers, watched them fall.from the dentist's terrace. I was wondering how the dentist could still work on patients while it was going on. Took Nana home to her place. Couldn't get too close to her place The roads along the river were closed to traffic. I could see some traffic on the GW bridge it was all emergency vehicles. all of the local fire tucks, ambulances etc were going into the city. It was a sad strange parade across the bridge. Got Nana settled in and went to get my son from school. DD had left for her freshman year at college a few days earlier.For the next few days the city was closed. No one went in or out. Felt like I was sitting Shiva, guess I was. So many people never came home form work that day. When I did go into the city there were flyers on the street lamps, posted around Penn Station and Port Authority Bus Terminal Got used to the new normal after that and in 2012 had to adjust again to another new normal.
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thank you all for your words of wisdom! I am waiting on a treatment plan. My onc mentioned tamoxifen. Has this been a successful treatment for anyone
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HI all,
NY - it's not all about you. I laughed out loud (sorry-don't mean to be insensitive) because that's so something my husband would say. He was told he might have congestive heart failure (it wasn't the case - it was lymphadema as I had diagnosed, but the docs took a while to figure it out) and I mentioned someone who has heart problems, COPD, and stage IV pancreatic cancer. My DH said, "well, tell her welcome to my world." Such drama. He is 100% in denial about my cancer. So I get zero support from him too with regard to cancer. Hope your infusion went well today.
I'm also thinking about 9/11 - the day the world changed forever.
Mommaray - sorry about your scan results. Fingers crossed for something that works for you!
Chelle - tamoxifin is often the drug of choice, so sound reasonable.
Christina - sorry you're in pain and your DH is being a pain. You're smart to look elsewhere for support. There's also a thread here for husbands/partners of stage IV that might be worth looking at.
Myra - love the closing of your post.
To all - thanks for the kind wishes. I think we may be crazy buying a house, but I also think it will get me all the more reason to live and stay healthy. And having organic fruits, veggies, and walnuts won't hurt. If you're curious about it, you can see pictures at:
http://www.realestate.co.nz/2484385
It's very colourful. The orange bedroom and purple and green and purple bathroom are of special note.
It's not the most flash and fantastic house, but the land is magical. And there's baby lambs next door! Hugs to everyone - hope everyone has a good day with happiness and pain relief.
Terre
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Sorry to jump in ladies. My mom just got results of the MRI she had because of the pain in her buttock/groin/thigh. Thankfully, she's still stable. Woot woot! Unfortunately, there appears to be a fracture in the upper right sacrum which will be confirmed by a CT in 3 weeks from now. She forgot to ask what would be done about the fracture once the CT results are in. Have any of you experienced a fracture in the sacrum? Would treatment be radiation or surgery?
She's in a lot of pain and looking forward to having something done about it.
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