Hi Everyone, I'm new here and want to introduce myself. My name is Alice and I have just been diagnosed with Metastatic breast cancer of the bone. My oncologist informed me about two weeks ago and I am just now wrapping my head around this. I had a bone biopsy yesterday and now I am dreading the results.
After reading many of of the posts, I have gained strength from reading about your courage, information and knowledge from your journeys with this hideous disease.
As I begin another yet another battle I will be looking forward to sharing it with you.
Thank you.
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Aire
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I wish you the best through out your journey. Because its going to be a rough ride with all kinds of up and downs ,crooks and turns, up side down and the turn around . enough to make your head spin. I known this through out my journey but I'm still here. Keep me up dated on your journey. Take care and remember Only The Strong Will Survive.
Your right it is a bumpy ride, but chemo is difficult. Thank you I just want to say your right we are fighting. "Only the strong survive" even if your not strong keep the faith and keep fighting for life.
Your right is a very very bumpy ride with slopes, hills, curves, road blocks. Its going to be many days when we are weak, but that only temporary it is part of the process of making us strong. We all are dealing with this cancer together the best way we possibly can .Hopefully the days will get better in time. Wishing you all the best through out this journey, Take care keep the Faith and stay Strong.
Welcome Alice, you have come to the right place. I have only joined days ago and I am meeting the most courageous women who have given me hope and encouragement. I also have MBC diagnosed 4 months ago. My fears have been deminished because of the survivors I have met here. The unknown path ahead of you is filled with survivors walking with you. You are not alone, we all walk together. Be strong, reach out for the help you need. You already are a survivor. Good Luck, God Bless
That's right Nancy when you have survivors around you that's were the strength come in. To coach us to never give up and there is hope. But we must do our part which is the tough part to do the research on what treatment is best for each different needs. I don't know where I would be with out my survivor sisters. I;ve lost a few of them but I learned so much them that I never forget them. The ones I still have around together we are still Empowering , Educating , and building courage strength among each other and our sister. stay strong and take care and wish you the best.
Thank you Fearlessone, The path was lonely for me and then I found this site and am so thankful for everyone here. There is strength in numbers and we draw on that strength from each other. There is always a hand to pick us up. Thank you for being there!
The path was lonely for me too there were no support groups in my area in southern Ca. were I live. The only support I had was my family and friends and God. I thank God for that and this support group now. It really help me a lot. As we walk this journey together we will stay strong together. Take care and keep in touch.
Hi Alice. That was my Mom's name. I lost her two years ago, and was just diagnosed with the exact same thing in October. Needless to say, my holidays were anything but merry! Not wanting to be a wet blanket for my family, I went off the grid for Thanksgiving and Christmas. I just couldn't deal. Almost six months later, I'm a lot stronger than I was at first, but you're going to have those days. You just can't give into the fear. There are so many treatments and trials that outweigh the trials and tribulations. But we are all in this together, and we will be here for you.
Also...I'm not sure where you live, but I just registered for the LBBC 11th Annual Metastatic Breast Cancer Conference in Philadelphia the last weekend of April. It is very well attended, and I'm told, not to be missed for those of us, especially the newbies, who need to better understand the disease and the treatments. They are also offering travel grants, particularly for those who live far from the conference, as I do in Portland. But if you cant attend, at a minimum, Google the conference and sign up for the Webinar(s) of the various lectures and breakout sessions.
There is even one session dedicated entirely to we Bone Mets girls.
Hi Jan, Thank you so much for all of your encouragement and positive thoughts that we are all in this together. What I can't believe is that there are so many of us,
I live in CA and Philadelphia is a long way. What is the LBBC ? I will definitely check that out. Thank you for all information Jan, I have learned a great deal from you. God Bless you, I wish you all the best.
It stands for Living Beyond Breast Cancer. If you register before Wednesday you can apply for a $400 travel grant, and once approved, they waive the registration fee as well. The room rate has been reduced...you can also find an Air B&B if you prefer, that's close by. Coming from Washington state, it is a very long way for me too, and I almost decided not to spend the money, but the agenda, workshops and classes just completely spoke to me, and there is nothing more important than doing all we can to save our lives, surrounded by women doing the same, and oncologists at the top of their game, educating us on doing just that. Let's do this! 😇
I hope that Share will be taping some of this conference as there are many of us who will not be able to attend but would love to learn as much as we can about our BC mets. For me, I'd especially like to learn the latest on bone mets! Kats3
Absolutely. In fact, you can go on the conference website and register to attend the sessions at no cost. I actually did that before deciding to attend.
I'm a little curious as to how your Oncologist diagnosed you with bone mets 2 weeks ago before you had a bone biopsy for which you're now waiting for the results?
In my case, I was NOT told I had bone mets until AFTER the bone biopsy was done, and this took 5 days of lab analysis to really confirm that this is what it was. A different cancer was also considered, namely Multiple Mylenoma, and this had to be ruled out before telling me positively that I had bone mets. Did your doctor tell you this news prematurely on what he "suspected"?
I was more upset about hearing that Multiple Melanoma was on the table and not bone mets! That possibility REALLY scared me more!!
On a positive note, my Oncologist told me that bone mets only patients do, overall, well in their treatment plans. So I'm trying to stay positive that this will be the case for me, and you as well!!
I hope I can explain this so it makes sense. In November I was suffering from what I thought was a rotator cuff injury. I went to a local orthopedic doctor. After several months, he ordered a MRI.
In the meantime, I went to my oncologist (65 miles away) for my yearly checks, PET scan, Mamogram, Bone Scan. The PET scan showed the spot where there was a patalogical fracture,not a rotator cuff injury at all. In other words, there is a tumor in the humerus just below the joint that was growing and broke the bone. Now I am seeing an Orthopedic Oncologist. I had a bone biopsy last Wednesday, March 28. Needless to say, the waiting is grueling.
I saw the Orthopedic Oncologist who had me start Zometa, March 16. I have another infusion next week. I had a pretty strong reaction to the first infusion the following evening. I am hoping that this one coming up will be easier. It only lasted one night so if I do have another reaction I hope it doesn't last longer.
My biggest concern at the moment is the surgery I will have on my humerus to repair the bone so I can have some sort of decent movement in my arm. I am pretty limited with any kind of activity with that arm.
I must say being on this sight has given so much encouragement. After the session with my oncologist, I was feeling pretty down. But learning from all of you who have walked before me I will stay positive. Thank you for your caring support.
Thank you. Now I understand what the bone met thing is all about. Yes, it's a scary thing to deal with, but I'm glad that the Orthopedic doctor got to the bottom of things and is putting you on a bone strengthener. It sounds like the Pet scan is showing only this one area that's affected. Am I right? If that's the case, once the tumor is dealt with in your humerus, you'll probably continue getting the Zometa infusions or maybe Xgeva if that it gives you less side effects. You'll likely be put on a drug that treats bone mets too, and there are many.
I hope you're taking Calcium with Vitamin D. That's important for your bones.
Anyway, I wishing you well as you go through what needs to be done to get your arm working again. I'll be keeping you in my prayers.
I too have bone mets and it can be very anxiety-provoking. You're not alone with dealing with these feelings. There are many of us out there!
Bottom line: Stay brave! Stay positive! Say prayers every day that things will go well.. And they will!! Please keep us posted on your progress. We care. Kats3
Welcome to our group. I'm so sorry about your diagnosis, but I think that will find a lot of support and strength here. I have had Stage IV Metastatic Breast Cancer since April 1, 2014. I have been very fortunate so far that it has only spread to other lymph nodes throughout my body. I am currently taking low dosed of chemo pills Xeloda and Tykerb. This has kept me from having any side effects but is also working to keep my cancer stable. Before this, I was on IV chemo Kadcyla for 22 months. The only side effect that I really had with it was about 3 days after treatment I would get a really bad headache. I wish you all the best. We are here to help you. The best thing to do is keep a positive attitude. You can't control it and I truly believe that stress makes it worse. It's okay to have pity parties for a day or two. I think we all do and we are entitled to that. But then we have to get back into our fight mode and do everything we can to beat this! Praying for you my Pink Sister 🙏💕
Thank you so much for your encouragement and positive thoughts. I am so sorry that your Breast Cancer has spread to your lymph nodes. It sounds like your cancer is being kept stable with the oral chemo. That is wonderful.
Thank you again. I completely agree with you that stress does make it worse. I do a lot of yoga breathing and talking to myself.
Hi, Alice! Those bone biopsy results will give you and your onc alot of information about the specifics of the bone mets that can direct you towards the most effective treatment! Before I go any further, let me tell you that I was diagnosed with mbc 13 years ago, with bone mets from the get go! Some of us with mbc do really well for long periods of time. It depends on those rotten little cancer cells and how well they respond to treatment, but if you are going to have metastatic breast cancer, the bones are the best place to have the mets. Since drugs like Zometa and Xgeva came along, they have been like miracle drugs in preventing (more) fractures and keeping us going. I was allergic to Zometa but was on iit for several years, getting a hydrocortisone and benedryl prep and extra infusion time. And half the usual dose. The allergic reaction I had was a hive like rash that came on pretty quickly. Talk with your onc about the specifics of the reaction you had and ask if a longer infusion time might help. Ask about taking benedryl before, too. One tablet might help alot. Extra fluids can help minimize reactions, too. Xgeva is easier for some of us. It's an injection, so quicker and easier to receive, too! About five years ago, I fell on the ice in January and shattered my ankle, 3 bones broke. That was unrelated to cancer and bone meds--I fell with my ankle twisted under me and came down on it with my whole weight. I had to have a surgical repair and that was not as difficult as I had expected! I was off my feet for about ten weeks and that made me lose alot of muscle in that leg. I now have arthritis in the joints but cortisone injections help alot and I am mobile. I think you have an advantage over me in the healing department with your arm because you will have an easier time of it not putting weight and strain on the bone while it heals. But fractures are no fun, that is for sure! I've learned alot about bc and mbc in the last 13 years--that's been one of the ways I cope! For alot of us, the first months, year sometimes are the hardest
-I didn't finish my note above--my cat walked across the keyboard and posted it for me! Not the first time that has happened! First months often hardest emotionally. Having a good response to treatment helps alot! And//
- we are living longer and longer with more treatment options coming along.
I hope you do well. There is much to be hopeful about! Sending love and cyberhugs your way!
Thank you so much for your kitty's reply and your encouragement. I Know the first months are the hardest. I feel as if it has become a reality, as I go for my second Zometa treatment tomorrow.
Thank you again and cyber hugs are always welcome,
Your 13 years is so encouraging I could just cry. My MBC is also in my bones and my breast cancer markers have come down from 63 to 28 over the past 10 months since my diagnosis. I'm so thankful to God for doing well but occasionally give in to "what if". Thanks for your note. My Letrozole and XGEVA have been doing great work as well as a herbal drop I take under my tongue twice daily. So thankful and continued prayers for all of us!
It is a pleasure to meet you. I'm sorry you had to join the metastatic group. I was diagnosed with stage 4 breast cancer a year ago and it has metastasized to my bones and very small nodules in my lungs. Wishing you all the best period I'm kinda nervous right now cuz I just had a bone scan and I can't scan two days ago that I don't know the results of. I am hoping for no progression.
Thank you so much Partia. Hoping that your scans will show no active progression anywhere. We can pray for that.
I go tomorrow for the results of my bone biopsy that I had on March 28, I had my second Zometa infusion yesterday. So far so good.
I have decided that no matter what the outcome, I have to forge on and do the next indicated step. With my Oncologist's help and the encouragement from all of you I can forge on.
I posted today on the latest, but I neglected to mention that the bone biopsy revealed that this new cancer is a metastasis of the lung and not the breast as originality thought. The radiology is really dragging me down. I'm a lot older this time around. But it should be over the end of this week or maybe by the middle of the following week. Thanks Kats3
Sister/Alice /Warrior: Stay strong . I pray for your restoration and healing, and the healing of a nation of women and yes some men battling back this disease Amen.Here is a story that I hope will brighten your day, and all who read this. Soon after my hair grew back after chemo I started coloring it and relaxing it,yes abusing it and it fell out. I put on a wig to go out to a play and then a restaurant with a group of other ladies. While at the restaurant we were all laughing and making jokes I laughed so hard as I threw my head back and my wig started to slide off my head, I barely caught it before it hit the ground, and threw it back on my head ASAP. We all laughed even more that day. God bless you warrior(s) and your loved ones. Happy Palm Sunday,Good Friday and Happy Easter Resurrection Day.
Hi RLN Overcomer, That is so funny! As someone else mentioned we do have to keep a senso of humor. Laughter is the best medicine for just about everything including C. Thank you for the smile. Aire
Hi everyone, I'm back after my ten radiation treatments to my upper left arm and the fourth rib. I have been fortunate that I did not have any radiation burn, just a bit of discomfort and soreness at the sights.
I went for a brain MRI today as well as my Zomita infusion. It is a full day for scans and infusions.
The bone biopsy I had a month or so ago revealed that the cancer in the bone is actually a metastasis of the lung cancer that was diagnosed along with the breast cancer. I am hoping that further probing of the biopsy will give some clues as to what the next step will be.
I see that many of you are on chemo. What are the chemo names? Are they given by infusion or are some of them taken orally. I have noticed that some are tolerated and some not tolerated well at all from reading the posts. I have a feeling that chemo will be the next step for me.
Unfortunately I can not see my oncologist for another three weeks since she will be away.
I thank all of you for your input and sharing your journeys.
How are you doing? What type of treatment are you getting for your bone mets? I hope things are progressing well for you.
From what I've read on your posts, the bone mets came from your lung. But didn't your lung mets originally start with your breast cancer? In other words, was your breast cancer the primary site where everything began?
I'm glad that you began treatment with radiation to your arm and rib. How is your arm feeling now? Are you still on Zometa?
And how are YOU doing with all that's been happening?
I'm keeping you in my prayers and wish you nothing but successful progress in your treatments!
It is so nice to hear from you. Yes I finished my radiation treatments. They have relieved the pain as much as eighty five percent. To answer your questions, I was diagnosed with breast cancer in January 2001. Before the lumpectomy I had the work up as all surgery requires, including a chest X-ray. All went well with the breast surgery. The surgeon referred me to an oncologist. She informed me that the chest X-ray revealed a tumor between the two lobes of my right lung, top and middle. I had a lobeectomy to remove those two lobes. A surgery I wouldn't wish on the devil. My recovery took four months, while also doing radiology and chemo, before I had any semblance of life I had before the surgery. As they say, time heals all wounds, and it did, so much so I was able to return pretty much to a normal life. I can't run, or do things that take a lot of cardio, but I am functioning.
No the bone mets did not start with the breast cancer.
All went well for thirteen years, annual breast exams, mammograms, chest Xrays and blood work. The last lobe of the right lung that was spared had shown a spot during the annual check X-ray in 2014. Now what? I didn't think I could go through another surgery as the last one on this lobe. After all, I am a lot older. With the oncologist and radiologist we worked out a plan to do a radiation therapy called "cyber knife." Have you head of it? It targets the tumor specifically. There were eight treatments. As far as anyone could evaluate, the tumor was gone. Then in January 2017, I had a sore shoulder. It hurt before then, but I thought it was whatever. That called for an orthopedic oncologist at another hospital that requested a biopsy. That is were it was revealed that the metastasis from the lung was revealed. The rest you know.
At this point the oncologist is requesting that the biopsy from the last lung lobe be re-evaluated to see what kind of cancer we are dealing with for a better way to treat this beast. In the meantime, I hope to have as nice a summer as I can. I should have some information around the end of July, when I go for the Zometa infusion. (Which is not causing me any hardship at all.) I must say that this disease has taught me patience. I hope this makes sense. As my oncologist says, "Nothing is straight forward with you and this disease." I still don't know what I am supposed to be thinking about that statement.
I thank you for your prayers and well wishes. I ask for endurance every day from my God. I wish all the best to you as well. Keep up the fight, as I do think the scientific community is working very hard.
I will post after the 29th of July when I know something.
Best of everything to all of you fighting so hard.
It sounds like you have or had TWO different cancers. I think the Orthopedic Oncologist wants to make sure that your lung cancer is really that and not a metastisis of your breast cancer.
Did they ever do a CT scan, bone scan, or MRI on you at any point during all what you went through? I think that would've shed some light on what was going on with you. A regular x-ray is not enough to see the whole picture.
Anyway, I agree with you. Enjoy the summer!
I hope you're getting the Zometa infusions each month. They really helped me and my Oncologist couldn't get me on them fast enough! I had Zometa infusions each month for 2 years and am now getting them every 3 months. I think it will go to every 6 months somewhere down the line.
Do you have the bone mets just in that one shoulder area? I hope they looked at your whole skeleton. I have mets to spine, ribs, pelvis, and maybe going to hips and femur. This was shown on a bone scan AND MRI.
I'm glad you had the cyber knife procedure. It sounds like it worked well. Yes, I've heard of this technique before. Hopefully you're all clear in that area now.
As far as your doctor's comment: Yes, he's right. Nothing is straight forward with cancer. It can pop up at any time when you least expect it. You need a vigilant Oncologist, though, to make sure that it's caught right away and dealt with if it's spotted somewhere else. That's why we need to be followed very carefully with scans done off and on.
You're one brave lady! You've been through a lot and say its taught you patience. Wow. Congratulations on making it through your surgeries and now further treatments! I feel that your positive attitude will be a BIG plus in your dealing with whatever you must do to get yourself well.
Think "healthy, as in "I'm healthy." Keep that thought with you everyday. And yes, pray. Prayers are powerful. If you can, see if you can put your first name on a prayer list at church or other institution. I am on MANY prayer lists. I also attend healing services in a town nearby. They have one each month where your forehead and palms are anointed with holy oil and a priest prays over you. It really helps with the emotional and spiritual part of this journey that we're on. I find this comforting, putting my trust in a higher power, God.
Wishing you a relaxing summer. I'll be waiting to hear from you at the end of July.
In 2009 at just 33 years old. Endless visits to oncologists and having to face my mortality at a young age. I decided to face my illness head on, with a positive spirit, and with support from my family and my husband. To protect myself from infertility, I opted for radiation treatment instead of chemotherapy. I had been tested many times in my 33 years. But when i was told her cancer was unbeatable, and it was time to set my affairs in order, the warrior inside me rose up to meet the impossible with a spirit of hopeful defiance. Finally i got rid of this and very happy.
If you have Bone mets without organ involvement, you are best case scenario and many in this group have lived with it for 20plus years. I am in your boat re-diagnosed 4/2016. Living every day to the fullest as best I can and plan on being part of the 20 year group!! Attitude is everything Friend 💕. I have a fantastic support system of family and friends and I talk to God every single day and know that whatever is in store for me will be what it is 🙏
Welcome and Positive Thoughts Always at scan time. Embrace this new normal of yours and Fight Like a Girl 💖
Hi Aire, I just found out today I have metastic breast cancer to the bone. I was taking Arimidex but I guess it did not work. Next is a biopsy and I heard from several people it is very painful. Was your biopsy very painful too?
Hi, I’m so sorry to hear about your recent dx. I had a biopsy on my shoulder where the humerus and shoulder connect. I don’t remember it being that painful. I was not put out. Wishing you the best on this journey. Please keep in touch so we hear how you are doing. Hugs, Aire
Hello aireHow are you doing . I have just been diagnosed with breast cancer bone mets. HAd chemo and now started on tamoxifen . Please let me know how you are . Worried sick about this mess iam in
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