Bone Mets Thread
Comments
-
Hi silviah,
I can describe my tamoxifen experience. I had almost no side effects. Some foot and leg cramping at night. I had "warm flashes" but they were essentially the same as what I'd had before. I was on tamoxifen for 6 years, but that was before my mbc dx. It was after bc #1.
Yes, you will worry about every pain and sensation. That's where staying active and busy helps so much. I give my "symptoms" the- does it continue and/or does it get worse test. In these early days, there's nothing wrong with touching base with the nurse if you are worried.
I have had quite a bit of bone pain. Have mets all over my lumbar and thoracic area, and many on both pelvic bones and femur. I've had radiation several times. But, the good news is I've seldom had to take pain med on a regular basis. You have to communicate your bone pain to your doctor and determine if you need more help. I don't really know much about tamoxifen as a healer, my was a prevention treatment. Maybe others can help.
Overall advise-stay active and communicate your worries in these early days. Do things that make you feel like a normal person again. And use us to vent, too! ((Hugs))
0 -
Hi Silviah it's not unusual to have no se as some people don't ever experience them. You may find the longer you are on it you may get some hot flashes bt for now revel in the fact there are none.
The wondering about every little ache and pain being cancer is perfectly normal at this stage........you will learn to relax as time goes by but you will always be vigilant and take note of anything new.
The pain from bone mets depends on you, the extent and placement of the mets. Some people who have mets even though fairly extensive have never had pain and others have a lot of pain even from a small met. Again, if you are not having pain, that is a really good thing. If you had pain, it may diminish some as your treatment goes on and eventually disappear but again it may not. The best way to tell if the meds are doing their thing is to have scans and or markers done but always remember that too much exposure to radiation is not good for us either.
BC is such a diverse disease and we as people are so diverse that everyone is different with how they react to treatment and how well a treatment does for them. As stage IV it's never going to disappear so learning to accept it is what it is is really the key to being able to carry on in an almost normal manner living life to the full and loving it.
For now I know getting through a day is difficult and your mind will be going in circles with questions, worries and fears. Keep coming here and letting it out.
Love n hugs. Chrissy
0 -
Hi, Carol! Thank you so much for your kudos on my scan results. I'm so glad you have a wonderful oncologist, because it really makes a difference, doesn't it,and Dana Farber is world-class.
Hugs,
Valerie
0 -
Hi all. First a big congrats to everyone's good scan reports and NED-versaries.
I wanted to stop by here to post an update on my brother. After 6 months of Doxil he did a PET scan and unfortunately it worked for a short time and now there is more activity in the bones. Today he starts Carboplatin and he'll be on that for 3 months every 3 weeks until the next scan. It's hard to find information on carboplatin alone because so many people have it as part of combination therapy. There was a clinical trial open for metastatic breast cancer in BRCA carriers. I can't remember the drug name, but he is not eligible because of his neuropathy. But anyway, we have high hopes for carbo and we're praying it'll be an effective treatment for him.
Lots of hugs to all of you!
0 -
LovingisLiving, I am sorry that your brother is having more activity in his bones. We have all hoped and prayed that the Doxil treatment would continue to keep his mets stable or even result in improvement. Unfortunately, as we all know, this disease is unpredictable. I will continue to pray for your brother's improvement. I hope that Carboplatin is the answer. I have no experience with that treatment, but I am sure others can jump in with information. How is your brother feeling, both physically and emotionally? Is he experiencing pain, and if so, is it under control? How are you doing? I can only imagine how difficult this is for you. Do you have someone to lean on? If you need to vent or "talk" about how you are doing, we are here for you. Thank you for updating us. Please continue to let us know how you are both doing.
Lynne
0 -
Lynne, How did PET go? When will you have results?
Hi Terre....good to see you again! I've been cat deprived you know.
Patty, the snake gives me the willies. How are you doing?
Valerie, Congrats on your scans.
0 -
Hi Linda, The PET scan was uneventful but right on schedule. I have to admit that I am one of those people who is always early for appointments, and it makes me happy when things happen on time. I have an appointment to go over results with MO next Tuesday. I am in no hurry to see results beforehand. I am more nervous than I expected to be, and I don't want to leave this river of denial.
Terre, I am sorry that I didn't say hello to you. We have missed you, but it sounds like you have been very busy living your life, and that is great.
Lynne
0 -
Hi ladies! I'm new here. Just got the news today that I have bone mets. Five spots. One on my femur, one on my hip, two on my spine and one on my chest wall. Will have a biopsy done in two weeks to find out if it's still ER/PR+, and what treatment will look like. I was 9 1/2 years out. Was shooting for that 10 year mark, but just didn't make it. I'm very very nervous about this this time. I lost my husband three and a half years ago and he was my rock through my first cancer. My son lives in my town and his wife and four small kids. Other than that I'm guessing friends will be helping to be my rock
it's been a bad day, but I knew it was coming. I've had a feeling for a few months that something was happening in my life, but without any indication at all, I had no idea it was the cancer. Hoping we caught it very early, although five spots makes me wonder. Could use any advice or encouragement you can give me, becuase in my small town I don't know a single person who has gone through this with bone mets. I live alone, and worry about that too....0 -
Gracie,
I'm very glad found us, but sorry you have to be here. This is a wonderful group with a wide variety of experiences to share. It's a place to learn and to vent!
I have only bone mets too. I have many more than you and have had radiation for pain several times. I'll tell you what my RO says- bone mets only is a good thing! I hope your upcoming biopsy gives you and your MO a clear picture of treatment. There are many options now. Keep us informed and ask lots of questions!
(Hugs))
0 -
Gracie-YES! Lean on those friends and family. They want to know how to help!
0 -
hi everyone. Zarovka started a new thread in the stage 4 forums titled how many are we 2016. She started the thread last month. Z is attempting to count the number of metsters posting or lurking on our forums. We are both thinking that folks possibly have missed her thread because they are viewing threads only marked as their favorites. If you don't mind bumping over to that thread if you have not already it would be much appreciated.
Thanks so much
Mary Anne
0 -
Gracie, I'm so sorry about your dx, but just remember -- it's not an immediate or even a near future death sentence, as I think every single one of us here felt at first. Believe it or not, life does go on with a Stage IV dx. With luck that the tx they put you on works great for you, you can do very well for a very long time -- hopefully many years. I'm also sorry to learn that you've lost your husband. I know it must be hard not having him there for you now.
Glad your PET is behind you, Lynne. Fingers & toes crossed that you'll get happy news on Tuesday.
Loving, oh that's so disappointing that Doxil didn't work for your brother. Hopefully, Carboplatin will work great!
Silvia, what you described about every little ache and pain is absolutely normal. We've all been there and continue to go through it, especially when we fear progression or get blindsided with bad news, as you just were. The mind is such a powerful thing. I sometimes think it creates some of those aches and pains because it's amazing how fast they can disappear when we get good news.
Don't know when you'll check in again, Terre, but I miss you. I'm glad you're busy and doing well!
0 -
Hi all,
I haven't been posting much lately but keeping up with the thread.
Congrats to all with good results and wishing good news to those awaiting news.
Gracie - a warm welcome to you but sorry you find yourself here. You will feel much more in control when you have a treatment in place. Lots of knowledge, info and support on this thread. I too lost my husband 7 1/2 years ago and live alone. I'm lucky to have very good friends who live nearby. Good luck with biopsy. Jump in anytime!
Chrissy - so nice to see you on this thread again. You were the very first one to greet me here! I missed you.
Lindalou - this is for you and Terre and everybody!
0 -
Gracie, Welcome to the Bone Mets thread. I am sorry you have reason to join us. The people here are always willing to listen to, support, advise and share experiences with each other. When I was diagnosed last year, I thought that I wouldn't live to see Christmas. I was frightened and clueless. I knew nothing about stage IV bc or bone mets. I now realize that people can live a very long time with bone mets. These boards are brimming with education about treatments, side effects, resources, and coping mechanisms. All you have to do is ask. I am sorry that you lost your husband. It sounds like he was a special, loving man. I know that no one can take his place, but hopefully others will step up and be there for you. I know this is a scary time for you. Once you have a treatment plan in place, you should begin to feel better about things. Many of us have extensive bone mets, so don't be discouraged by the fact that you have them in multiple places. Ask any questions you have. Someone here will respond. Keep us informed about how things are going.
Lynne
0 -
Kaption, I wish I knew what to tell them about how to help. What I really need is someone here so I can sleep....I've always had trouble sleeping and now with this, I'm actually afraid tonight to go to sleep...silly I know, but it is what it is! I wonder seriously if I will ever sleep easy again. With my first cancer, my onc would not do radiation because I have Lupus and he said Lupus patients do not heal well (skin wise). So that is frightening in and of itself, because I know they use radiation to knock it silly.
dlb823, I know it feels like something is going to happen tonight, my neck is going to break if I move wrong or something like that...again...silly I know, the things that come to mind. I hope I get years, but my onc said five plus...and he's shooting for the plus. I want alot more than that.
LindaE54, I dont' know how you do it without your husband, but I think I'm going to find out! I miss him more tonight than I have any day of the last three and a half!
50sgirl. Extensive. That's the word my onc first used. My heart stopped for a minute I think. All I could think was that I'm not ready for this, I'm not at all prepared. Tonight the fear is almost overwhelming. I remember being scared the first time I had cancer, but this is all-encompassing. I think the word scared doesn't even come close. I'm a crybaby too, unfortunately, and that doesn't help. I'm going to need to lean on all of you a little bit until I get my bearings, and I hope that's ok.
Thank you all for your kindness and caring. Now can one of you just come stay with me so I can sleep without being afraid? (kidding)...(well, sorta).
0 -
Gracie, lean on all your want that's what we're there for. And tonight you'll be tin my prayers for a peaceful sleep. Five plus? Why not ten plus? Your doctor doesn't know when and we don't have an expiration date on our foreheads last time I looked. There are people here with 7, 10, 14 years with mets so try not to worry and focus on being an outlier (that's what I do btw) sending you (((hugs))) and prayers for a soothing sleep.
Aurora
0 -
Gracie, welcome here! There is usually always someone here to "talk" to when you can't sleep. Yes the words are very scary...especially widespread and extensive. I heard those words myself and am now NED. Believe it or not, it does get easier. My onc is very optimistic about all of the new treatments that are coming. She also said she has patients that are 10plus years out.
0 -
Gracie, my heart aches for you. See if you have a friend who will spend a night or two to get you going. Don't be afraid to ask your doctor for something to help you sleep, or investigate some of the supplements or teas to help. You certainly need your rest. There are gentle things to help with anxiety. Talk to your doctor. He/she has heard this before. Does your onc office offer counseling?
The lumpus does complicate things. I would suggest keeping in touch with that Doctor.
Come here often. Call on your best listener friend, reach out for help.
Read back on the folks on here who have been living with this dx for years. Search for ways to give yourself hope. In my early "shock" days I kept focusing on "what is the next thing I need to do?" Trying to feel in control and making progress.
Hugs and prayers for you.
0 -
Gracie I had the same experience when I was first diagnosed. I couldn't sleep at all was getting to the point where I thought I would go crazy worrying about my head falling off(I tend to embellish). So I have kind of a reputation now of being the medical marajuana poster child. I don't know what state your in but if you can get yourself some Pheonix tears capsules this will solve your sleeping issue in a natural way. Believe you me I have been sleeping like a ten year old since I started. Look for an Indica strain that has high CBD as they are known to slow the progression of cancer. I know it's all still up in the air until the rgovernment gets off their respective bums and does some serious clinical trial I can only tell you how it's helped me. Wishing you the best😊.
Wendy
0 -
Auroya, thank you, I did finally fall asleep sometime after 1 and slept until the alarm went off this morning. Not alot of sleep, but at least some
My onc didnt' say anything about 10 years out, but I would take 14 or 15 or 20 more Lynwood, so great to hear that news of 10 or 20 years out. That's what I want
Yes, very frightening. Am unsure at this point what I do with all of my future plans. I had plans to get my house fixed up to sell and move onto my sons acreage into a smaller new home...now I'm thinking ok is that even feasible, or responsible at this point? Puts a kink into everything.Kaption, thanks so much, I did get a little sleep. I have avoided reading too much because it always makes me get worried!
Wendy, I live in Kansas and all of that is illegal here, so no possiblity. I am going to ask the doctor if he can give me something to help me sleep. Thanks for your well wishes, I can use all of the positivity I can get at this time
Big hugs You ladies are awesome and I do appreciate your time and your kindness. Big big hugs to every one of you
0 -
Gracie, this little mantra that a bc-survivor friend shared with me shortly after I was dx'd has gotten me through many nights. And 5+ years is great because to my way of thinking, who knows what will happen in the next year or two or surely five? There are so many new things in the works, especially in the area of immunology. I truly believe in major breakthroughs on the horizon.
0 -
Deanna,
That is beautiful!
Gracie- what part of Kansas? I'm in Johnson County. You can PM me if you want.
0 -
Gracie, You are in my thoughts this evening, and I hope you get a better night's sleep tonight. I think that everyone on this thread has felt the way you do now. We have all learned to cope with this ugly disease, and most of us are leading normal lives and continue to grow and flourish. For example, Dee likes to spend time gardening and traveling. Some day I am going to force her to come here to pull my weeds because she really likes to pull them. Can you imagine that? Chelle sold her home and is having her dream house built in a lovely setting. She has been busy finalizing plans. Caryn has a passion for teaching and continues to return to her classroom to greet eager new faces each year. She recently witnessed the birth of her second grandchild. She also created a must-read thread on these boards. It is called it is called "Life Does Not End With Stage IV Diagnosis (Really!)". Amy recently took a long train trip and posted news and wonderful photos of her journey for us to enjoy. She took along her her disinfectant wipes, btw. Wendy, as you now know is our resident medical marijuana expert, joined a rowing team and recently won a ragatta. Gramen flew to Puerto Rico to visit her family whom she had not seen for a long time. Terre took the plunge and bought a house. When she isn't busy in her job as a civil engineer, she is redecorating her house, working in her extensive gardens, and volunteering in a kitten rescue organization. She started another great thread called "Tips for Fighting Dark Clouds". Deb has returned to her nursing career and shared pictures of the welcome back decorations that her coworkers prepared for her. Linda E had some personal challengers during the past year, but she has come through them better and stronger. Lindalou has returned to her pasttime of kayaking. Her joy was seen in the picture she posted. Deanna has traveled and continues to amaze me with her knowledge of metastatic breast cancer. She shares her wisdom and support with all of us here as well as on the Ibrance threads. Carol travels hours to reach the cancer center she goes to. She is always willing to help everyone here. She has a big heart and recently volunteered to meet one of us in Boston and take them to Dana Farber for a second opinion. She enjoys time with her daughters and grandchildren. She started a thread about the book Radical Remission. I could go on and on since there are so many other wonderful people here and I don't mean to slight anyone, but this post has become way too long, and I can't include all the others this time. These are just some examples of how people with bone mets continue to live life. The diagnosis doesn't have to control your life. We make plans for our futures because we want to live full lives for a long time.
Have a good night. We are all thinking about you.
(((Hugs))) from,
Lynne
0 -
Lynn - what a beautiful post!
0 -
Yes, Lynne. Nice reminder for us all.
0 -
Lynne, your post was beautifully written, thank you!
0 -
Lynne, I teared up reading that. So lovely
0 -
Lynne...will echo the others...thanks for the post...I needed that today !
0 -
Lynne, what a lovely post! I am amazed and impressed that you could pull all that information together, and taken as a whole it's a pretty encouraging picture, isn't it?!
0 -
Lynne,
How lovely and generous of you to remember so many of us and the details of our lives. I know I sometimes feel uncomfortable here, because I am doing well with my life (not the cancer part, of course), but I think I finally feel safe enoughto post here.
I can't keep up with this fast moving thread, but I think of you all often and wish you well. Whether we are struggling or doing well, we are all dealing with stage IV.
Caryn
0
