Bone Mets Thread
Comments
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Thank you, Chrissy. You're one of the familiar faces I was very grateful to see here. It's still just a bit surreal, it all happened so fast -- from healthy (or so I thought) to Stage IV in the blink of any eye... (((Hugs)) to you... Deanna
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Deanna it can be a bit confronting to begin with but once you get your head around it, it's not so bad........there is definitely life after stage IV. We have all felt pretty healthy before being dx........just goes to show what a sneak BC really is.
Take it easy and give yourself the time to get used to everything.
Love n hugs. Chrissy
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scared at dr office. Just learned that smal increase in ca27.29 last month was significant after all. If increases again in today's test I will be switched from letrozole to fulvestrant rant. This would be my first "progression" since starting treatment and I so wanted to be one of those people you hear about who went six years on only letrozole........
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Deanna,
It's good to hear from you, although I'm sorry about the bone mets. I had bone mets from the start in 6/09. You've done quite well for many years. I did 4 years of Femara with Zometa for the bones every other month. In Oct last year a new bone met appeared and I was switched to Aromasin & Affinitor. I also had radiation on the new met for the first time.
I'm sure your medical team will get this under control and get you stable again.
Hugs,
Terri
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hi Deanna and Minnie -
Sorry you have joined the club. There seems to be no one protocol for responding to bone mets. There are so many different variable to be taken into account (such as Her2 status; TM numbers, how many bone mets, pre or post-menopausal, etc., etc.). Also some Oncs like to start aggressively, some prefer a gentler approach. There is a lot of art as well as science in all of this, and we all respond so differently to the various treatments. Expect some trial and error...
I hope it all goes well for you - this is a great place to come for support!
Marian
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Deanna,
Sorry you have to join us, but we are a great group, if I do say so myself. More importantly, many of us continue to lead fairly "normal" lives. Some of us work, travel and carry on with life while still treating our bc. There are adjustments, to be sure, but lots of hope as well. I work full time, just got back from a cruise to New Zealand and Australia (I even climbed the Harbour Bridge) and will probably do a California Coastal cruise in April. I am 2 1/2 years NED and still on my very first tx. This won't last forever, but cancer hasn't won yet. Thinking of you.
Caryn
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How was your trip to NZ, Caryn? Our weather was shocking; finally got better for a few days and then we got hit with the remnants of the cyclone. Sunny today and warm, but supposed to turn to custard again tomorrow. Hope you didn't have crap weather the entire cruise!
Vilma - I had just "regular" radiation to my spine and rib (at about waist-level) and I was sick, sick, sick after the first one. Could not stop throwing up. When I had radiation for the Stage 1 BC, I also was nauseated and they said "it's not the radiation." However, I've read posts from a lot of women who had nausea from radiation. Hopefully it goes more smoothly in the future.
Welcome Deanna and Minnie. Sorry to see you here, but glad you found us. I still work every day and just carry on, with things about as normal as they were before the diagnosis.
Firelady - What you're describing was me 10 months ago! Just completely out of control emotionally. It does get better with time.
My husband posted this on my Facebook page and it's how I intend to live! Apologies if the "S" word offends anyone.
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kiwicatmom,
I love what your husband posted. I may have to borrow it. I had a wonderful time in NZ. The weather was lovely in Auckland and I enjoyed the Auckland Museum and the Parnell area. I used public buses and it was easy to get around. Tauranga and Rotorua were a bit cool and overcast but we had an excellent tour guide for our group of 8. Learned a lot about Maori culture and was awed by all the geothermal springs and geysers. I also saw kiwis growing on vines. I thought they grew on trees. Tasted a golden kiwi which was treat as we only have the green ones in the States. It was warmer by the time we got to Akaroa and I seriously considered jumping ship there. New Zealand with a French twist! I was in heaven at the Cadbury factory in Dunedin and just enjoyed wandering around town. Cruising through Fiordland Nation Park was magnificent. The day was sunny and brilliantly clear but a bit windy. Milford Sound was my favorite. Crossing the Tasman Sea was rough but once we were in Australia we had a great time as well. Also considered jumping ship in Hobart. You live in a wonderful part of the world.
Caryn
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So glad your trip was good, Caryn! It is lovely here and something of a more gentle lifestyle than the US. I've not been to Milford Sound yet, but it's on the "to do" list along with Doubtful Sound. And Akaroa is great fun.
Feel free to "steal" the picture - it's not original!
This one is, however...newly emerged monarch in our yard. We have swan plants, which the monarch caterpillars feed on and the butterflies lay their eggs on. We've had about 10 butterflies emerge from our plants right outside the front door. And hopefully this pic will bring a smile to a few faces!
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Had to share this - it's from my home town and it's awesome!
http://www.youtube.com/watch?v=NultMjGn5w0&list=UU...
Flash mob dance to celebrate last BC chemo treatment.
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Thanks everyone! I called my MO's office but couldn't get any earlier appt. so I went to my PCP and that did not help. She scared me even more just by saying "this is bad" after looking at my pet scan results. Geez. If she hadn't given me hug I would have been more upset!
I know what you are saying fire lady! It's been another roller coaster ride! And its only been couple of days for me! I have been sick to my stomach and of course now I'm scared for every pain that I feel. Adnd right now everything hurts.
Deanna, hugs to you...
Chrissy, I laready had total hysterectomy last year due to excessive bleeding possibly from tamoxifen that's why I was surprised my MO put me back on it. He said due to my age (premeno) and the fact I have osteoporosis. Tamoxifen is supposed to be good for the bones (?).
So glad I found you guys! You have no idea how much hope you are giving me!
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Minnie, Tamoxifen is better for the bones and considering that you already have osteoporosis a better drug all round. The AI's work a little differently as they literally shut down the bodies production of Estrogen (and it's not just ovaries that do that) rather than block the cancer using it but they are very hard on your bones. Because of this you will more than likely be put on a Bisphosphinate (there are many different ones) to help strengthen your bones and treat the osteoporosis.
All of these drugs comes with SE's but with care we can usually manage them well. Minnie, take a deep breath and try to relax a little which will help you get your head around all of this scary shite..........I knew a wonderful lady who lived 19 years with bone mets so there is still a lot of living to be done for you.
Love n hugs. Chrissy
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hi Chrissy, I was already on fosamax since first DX. So Im familiar with the side effects. I had parathyroid tumor (benign) that caused the osteoporosis which was found around the same time as the breast tumor. I had to stop taking it middle of last year for dental surgery (chemo/rad tooth issue I was told). I haven't taken it since, I am supposed to go back to my endocrinologist for another dexa scan Next week. I thought also that maybe the pains I had were also from osteo getting worst w/o fosamax.
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Hi Minnie,
It is indeed a roller coaster ride. If the doctor suggests Bisphosphinate treatments, go get your teeth checked before hand. Get them cleaned, get any dental work done in advance to avoid future problems.
Hugs and good thoughts to all
Terre
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good morning all! I haven't been around much recently, I spent the last 2 weeks going to at least 2 medical appointments a day - it's a full time job!
Hello to Deanna and Minnie - sorry you both have to be here, but if you have to travel this road, this is a great place to be. The knowledge and support here is amazing. Good luck to you both.
After all my appointments, I now know when my operation is for my back. T2 and maybe C1 if it's possible will be cemented. They're doing this under general anesthetic. Has anyone else had this done? What can I expect? I'm not worried about the operation, the opposite in fact. I can't wait to get it sorted! If C1 isn't suitable for cement, it'll be the more traditional pins, so it would be great if that's. Not necessary!
I also got news in my knee. Yesterday I was told that because the fracture in my tibia was spontaneous and not as a result of a trauma, it could take up to 18 months to heal. This threw me completely. The only exercise I'd been allowed do was walking, and now they're saying I can't even do that. I have to keep the weight off my lag as much as possible and use a stick. Can't use crutches because of my back and refuse to use a chair.
After that, with my PT we worked out that I could use an exercise bike a little, with no tension, so at least I can do something, and when my dh heard this he went out immediately and bought me one!!! That cheered me up after a tough day 😃
Now, I just have to get through next Tuesday. I'll see my onco again, and if my markers are up by even 1 more point treatment changes. It's an awful lot going on at the same time!!
Nicky
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Wow Nicky! You're going through the mill. I'm glad you're getting your back sorted. I'll be interested to see how you go as I may face similar surgery at some point. And very sorry about your tibia. That's great about the bike though. My back was fine (i.e., pain free) until they told me no weight bearing on my leg and put me on crutches. Have had chronic back pain ever since, so staying away from them is a good idea! I understand the full time job aspect; it feels that way sometimes. As my grandmother said, "getting older isn't for sissies." I'd suggest getting a very flash pretty stick! Other than that, I have no advice, only words to let you know that I'm sending good thoughts your way.
Terre
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thanks Terre, I'll let you know how I get on. It's funny, I had been lent a very ordinary stick; as soon as I heard how long it could take I went out and bought a very cool black one!! I have my eye on some very snazzy blue or pink glittery ones too though😜
Nicky
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Hi Nicky,
Why limit yourself to one?
I'd definitely get multiple colours! If my crutches hadn't been on loan from the hospital, I definitely would have pimped them up! If we lived closer, I'd buy you a hot pink glitter one for sure!I started wearing glasses when I was 6. When I was 13, I wanted some outrageous ones. My mom objected, but her friend (who also had worn glasses since an early age) said, "if she's stuck with wearing something she hates, at least let her make it fun". I reckon the same attitude should apply toward appliances, such as crutches and walking sticks.
Best of luck to you - sending you good thoughts!
Terre
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Terre,
Give me a month or so. I'm sure I'll have one to go with every outfit!! I agree with your moms friend; it's great that your mom listened!
Nicky
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Gotta question...Just recently diag with bone mets & in discussing my concerns that further testing (labs & scans) were not done more frequently during the last two years of follow-up, I have been told by 3 doctors now that my "mortality time rate" would not have changed had my bone mets been found earlier. I'm confused & intend to ask my new Onc about it this week, but just wonder if anyone can explain that further. Basically, they say that finding the cancer in the bones in a smaller amounts earlier would not change where I am now & even though it sounds crazy, it's been scientifically proven. How can that be if I would have been on treatment before it became so advanced? If treatment would not have changed anything, what's the purpose of treatment?
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Just wondering .... I have extensive bone mets (as well as liver mets); the spinal mets concern me the most, for obvious reasons. I'm wondering if anyone here has had a positive response to taxol for their bone mets? My first scan showed a positive response in liver, but the CT scan doesn't accurately report on the spinal mets. My next CT scan is in Feb., but MRI not until some time later in Spring.
So far, the only time I had a positive bone met response was when I was on femara, so more concern. Don't think you can take an aromasin inhibitor while on taxol; believe the incr. for blood clots too high, risky.
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Hi Firelady,
I think that the treatment is to keep it from getting out of the bone and into a place where your body cannot tolerate it. I too have "bone only" mets and that is what they told me. You will not die from cancer in your bones. Only when it gets somewhere else. Since it is still contained in your bones - probably that is what they mean. Feels discouraging though. I am facing possible move from first line treatment to second line treatment (less pleasant) and asking the same questions - if it is still only in my bones - do I have to be that aggressive - is it even going to help anyway?
Janet
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Numbers came back this morning. Its official - I am failing on Femara. Time for another scan and Faslodex. Not feeling too chipper about this.
Janet
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yes, I too have heard that finding mets early does not increase overall survival time. It does seem very counterintuitive. My bone met was found by accident, no pain or symptoms. I had rads to the area and it has been necrotic ever since. Logical thinking says this should increase longevity but that is apparently jot the case. Still, I am an individual and I hope my bc behaves outside the norm.
Caryn
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20130502 your story sounds like mine. First report of progression since diagnosed two years ago. I also will be on Faslodex, but will continue aromacin. Seems odd that I don't feel bad. Hope you do well with the change, I did not have any side effects.
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Thanks for your thoughts! I didn't think about keeping it confined to the bones & not allowing it to spread. I was coming at it from the standpoint of keeping it in remission for a longer period of time & keeping me alive! :-) I also appreciate the encouragement about the success of spinal rads. I start my first rad treatment for pain mgmt tomorrow & I've been curious about how it helped others. Won't find out treatment for the actual cancer recurrence until Thursday, but hope that gets on board & this train starts moving in a fast forward direction!!!
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Firelady, I completely understand where you're coming from. I felt the same way, and I'm not sure that I buy the "it wouldn't increase survival time" line, truly. Why wouldn't knowing that our treatment was failing help us, as then we could get onto one that works? I didn't find my bone mets until I had a fractured spine, and wound up numb from the chest down. Fortunately, the radiation took the cancer off of my spinal cord (I'm a big fan of radiation, actually) and I was able to recover my mobility. But, I was extremely lucky. It could easily have gone the other way. So no, I don't buy the line that it doesn't matter. It would have been nice to skip that whole "broken back" episode.
However, now that we're here, it's really best to look forward and not backward. I stayed with my oncologist, even though I think he should have scanned me sooner. He was doing the standard of care; I was stage one, no lymph involvement and low oncotype score. I wasn't supposed recur. Cancer is funny that way, though, as we know it doesn't do what we expect much of the time. I stayed with my onc because I think he's very knowledgeable about treatments and he cares about my quality of life. When he did hear about my recurrence (found out through the orthopedist I saw due to my back) he called me immediately and had me into radiation to be mapped that same evening. I feel he has been very careful with my follow-up after my Stage IV, and I doubt I could do better. If I were ever in need of a second opinion, I know he'd support my doing so.
I really wish you all the best. If they put you on Faslodex, come on over to the Faslodex thread, as we have a lot of bone metsters over there. It's a pretty easy treatment for most of us, and when it works, it seems to work for a good amount of time. ( 2 1/2 years for me.) But whatever treatment you get, know that you can have a good quality of life with bone mets, and live for years. When I first was diagnosed, I mentioned something about my life span being 2 or so years, and my onc said, "What makes you think you only have 2 or so years? I have patients that have been living with what you have for over 15 years!"
That certainly helps to hear that kind of thing. Let us all be those patients!
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sandilee, wow, what a cool statement from your onc, giving us all hope.
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firelady,
At dx I had extensive bone mets and 1 liver met. Taxol brought me to NED. I did stop chemo in December 2012 to have rads to my spine, and the finished out the chemo. The main issue I've had since then is continuing pain in my cervical spine due to damage caused by the cancer. I'll have surgery in a few weeks.
In the meantime, Janet, my numbers are goin up too, I'm failing tamoxifen. Starting faslodex today, so I'll maybe see you over on the faslodex thread!
Nicky
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Vitamin D3- is different than regular Vit D. I have been on D3 for 6 years with no calcium issues.
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