Bone Mets Thread
Comments
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I've never posted on this particular thread before but had to add my two cents for Hindsfeet. Some of you have heard this before, but when I was diagnosed Stage IV almost two years ago I had "diffuse" bone mets almost everywhere in my spine, ribs, pelvis, etc. I DID have compressions in the L5 and L something else area...it was a miracle that I was even walking around. When I was finally diagnosed and hospitalized, I spent almost a month in the hospital having radiation through my sternum to my back (not easy on the esophagus - I lost about 20 pounds because I couldn't eat anything without a terrible burning sensation). After I was released and started chemo, I had to wear a "turtle shell" brace for 2-3 months to keep me from moving much. ANYWAY - the good news is that my bone mets almost completely "dissolved" and I have been stable since then. It makes me so MAD that that doctor gave you a time frame. I had the same experience with my neurosurgeon (who initially followed my compressions, etc.). I told him I planned to run again someday, and he told me that I was lucky if I'd be "alive at Christmas, let alone walking". !!!!!?????? Needless to say, I don't see him anymore and someday I plan to run some sort of race - even if it's a 5K, and send him a picture. I asked the oncologist I am seeing now what was the longest she'd ever successfully treated anyone with Herceptin, which is one of the things I get every three weeks, and she said 15 years.....since Herceptin was originally a clinical trial drug. SO - don't listen to anyone and have HOPE!!!!!!
I also wanted to add something about pain management that I haven't seen here..... for a while I was on methodone, which for me was a miracle pain drug. I realize it's what heroine addicts sometimes use ( knowing nothing about heroine addicts, I knew nothing about methodone) but it literally took away ALL of my pain without ANY side effects. I loved it. And - although you have to gradually ease off of it ( I made the mistake of trying to go cold turkey once.... bad idea) it can be manageable.
This thread is going to be one of my new favorites..... thank you all for sharing such great information and for the love and support!
xoxo
Andrea
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Hi Andrea and welcome. Thank you so much for your added input of helpful information for Hindsfeet as well as the hopeful report for her as well.
Love n hugs. Chrissy
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Sky, My hearty sympathies to you as you try to get a plan for this progression. I will be eager to hear what you figure out, and am cheering you on all the time. Hang in there with this particular swoop...
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I had hyperthermia and low rads to my ribs today. Immediately felt better. Now they got to do the tailbone. Appreciate your stories. Happy to hear the bone will be strong again.
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Hi Chrissy and Mame,
Thanks for your responses. Chrissy, I know Zometa is a bone strengthener, and I do already take calcium, vitamin D and magnesium. That's why I don't feel bad about giving it up. ;-) But, for me the side effects are severe enough to stop it regardless.
Doc said I can consider radiation to the back if pain worsens. I'm undecided about that for now.
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Chrissy, re the roller coaster ride. I LOVE roller coasters, so I'm waiting for the thrill!!!
I will be following this thread, just probably won't be posting much. This diagnosis is new to me, and I'm told not bad and some of you are going through so much and in so much pain, I don't have anything to offer other than support. I'm sure I'll be back to cry on someone's shoulder at some point in time. As I have a gut feeling it's not as minimal as they are telling me. One time in my life I hope I am wrong!
Happy Weekend All
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Skylotus give the radiation more thought. I wasn't sure about doing the rads when I had pain, but did go through it. .Relief was not immediate but eventually made a big difference. Rads are much better than zoning out on pain meds.
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Lori whether you have one met or a hundred there is always something to share......... You will learn a whole lot that may stand you in good stead further down the line so to speak so read often and post when you feel like it we love seeing everyone. Hoping your feelings are wrong for a change. (((((hugs))))))
Oh, on the subject of roller coasters? I used to love them but I'm afraid I like something a little more sedate now.........cancer does that to you.......lol.
Skylotus I'm with NYC on the rads for pain relief so give it a good measure of thought.........I can vouch for how effective they are.
Love n hugs. Chrissy
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I also had rads on my spine and hip mets. My cousin, who is also a physician, said to me to "do it sooner rather than later. Why get worse before you do it. You'll have better results if you do it sooner". That turned out to be good advice.
The worst part of rads for me was just going there every day. Since I wasn't in much pain, I could hold still better and it was easier on me than waiting for more pain and more immobility. A little burning on the bum which was handled with cream. A little diarrhea which was handled with anti-diarrheal.
My bone mets are completely gone now, thanks to Xgeva, Abraxane and rads. If I have more bone mets, I'd definitely do rads.
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I have read every page of this thread over the past few weeks &
finally decided I should join in & say hello. So "hello" all!!I had weaned myself off BCO for quite a while, I wanted to get past the whole breast cancer thing & get back to living my life, then I was diagnosed with
bone mets in May, had my first infusion of Pamidronate yesterday.Today
I woke up feeling like a truck had run me over, every single bone in my
body ached. Normal? On the sheet they gave me for side effects it
doesn't mention this. I took 2 tylenol & hope they help. Dee aka
GG270 -
Hi Dee and welcome. Yes, you Pamidronate infusion can make you feel like you have been run over by a truck but it shouldn't last longer than a day or two. Next time you go in for your infusion ask them to slow the flow down to half and you will find that this will help loads with the SE.
Hope to see you around more.
Love n hugs. Chrissy
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Thanks for the welcome & advice, Chrissy. I am happy to see you are almost 10 years with mets, not happy that you have mets....you know what I mean, it gives me a lot of hope.
I am hoping that the SE's won't be as bad next time. They have booked me late in the afternoon & yesterday it took 2 hours to administer, not sure I want it to 4 hours as I have to catch a ferry home. That would put me getting home at around 10pm or so.... I will try another one at regular & if that doesn't work then I will just suck it up & stay late.
I seem to have developed a massive headache in the last hour, hoping that will go away soon... still not as bad as chemo!
GG0 -
Dee, if you are getting all these SE I would suggest you talk to your onc before your next infusion and see what he has to say about it. For now just monitor what is happening and if it gets worse please go to your ER or phone your doc. I know we have to suck up a lot of things but until the docs tell us there is nothing they can do about some SE I recon we should just tell them everything that happens.
I'm actually ten years with BC and five with mets.........not quite the ten you had me at but still a goodly number.....lol. I am doing well and just had my second total knee replacement so the docs obviously don't think I'm going to kick off too soon or I would have been told to suck it up.........lol.
Hoping your SE settle down over night.
Love n hugs. Chrissy
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Hi all,
Skylotus - I don't know what happened to my previous post, but I am sorry you're going through this and that your scan was less than fabulous. I'd agree with the others on the rads. I had spine and hip rads and the cancer is necrotic and dead, which is always good news! And it did help the pain a lot.
Goldie - I know how you feel; I kind of feel like an imposter sometimes because I haven't gone through all that much. But I still get good advice and support here and hope you'll chime in!
Dee - welcome to the club we don't want to belong to. Pamidronate made me sick as a dog the first time; just miserable for several days. Like a horrific flu. The next one wasn't as bad, and it got better with time. Somewhere, I read that taking a claritin (or similar) and hydrating like mad before the infusion helps. So I started doing that and whether it was me just getting adjusted to it or the hydration/claritin, it did get better. Did they tell you to get your teeth checked? This is IMPERATIVE. If you haven't, get to your dentist now and make sure you don't need any major dental work. If the dentist recommends dental work, tell your oncologist immediately. While jaw problems are rare, they can occur if you have major dental work while having Pamidronate infusions. I can testify to that from personal experience.
It's not something I was told when I started, and ended up with a bit of a mess.Take care and hugs to all,
Terre0 -
GG27 as for the Pamidronate...I get my infusion through a ''baby bottle'' they call it at the cancer chemo unit, where they start my IV... tape it up & I can go home. The IV has a short tubing attached to what looks like a baby bottle (which inside you can see the fluid in a compressed bubble decreasing gradually by suction I guess). Then I discontinue it once it is all done. It does take between 2-3 hrs... but at least I am home...(I live about 1 hr away from the cancer unit). In hospital they can run it in 1 hr...with IV fluids. But maybe slower is best!
I also had 5 treatments (in May 2014) with rads which helped a lot with the pain ...the pain was worse immediately after rads for about a week...but much improvement since.
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Chrissy got those new knees so she can "keep on kickin"! That woman never stops, but if you know her, you already know that!
Kiwi, I like the idea of being an imposter. I wonder if it will fool that bastard disease, and it will leave me alone??? LOL, a girl can dream eh?
Well, I'm suppose to get my 2nd dose of Faslodex this week. The cancer center I go to is 8 hour round trip drive, they are trying to get the drug sent up to where I live, so I can have my doctor here administer it. Then I only have 2.5 hour round trip drive. So far no luck, so I have 2 appointments this week, hoping I can cancel the one further away. No unusual side effects yet, I feel like a perfectly normal person. I often pretend they are making a mistake and that I don't have cancer at all! I felt that way when I was first diagnosed as well! I only wish it were true!
Chrissy, I think it's age that makes you hesitate getting on that roller coaster! I only like the up and down ones, want nothing to do with those that go upside down or in the dark.
Huggles from me..........Lori
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Thanks Chrissy & Lou... I am feeling much better today, though I still have some back pain but I was able to sleep last night & the headache has gone. My body seems to always have a very low tolerance for drugs as I seem to get all kinds of SE's that no one else gets. And I do have an appt with my onco (female
before my next infusion & I will ask if I can either have it slower or take it home with me or if she has any suggestions. I am hoping that it was just the first one that was so bad.Kiwicatmom, I was given a sheet warning me about dental issues & have had the all clear from my dentist so hopefully that won't be an issue. They gave me all kinds of very fancy xrays just to check everything.
I hate that I've had to join this club that none of us wants to be a part of, but am happy that it gives me somewhere to ask questions & get some support, so I thank all of you for being here & helping me out. I went to a BC support meeting & it seemed like they didn't really like stage 4 women there. Perhaps they figure they can just put their head in the sand, as it will never happen to them. Dee
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Hi Dee - so glad they told you about the tooth thing. I wasn't told, and it may not have helped even if I had been as it wasn't until they extracted my bad tooth that they realised that it was cracked (didn't show up on the x-ray). Not a fun experience. As long as I didn't do anything stupid like eat, drink, talk, or breathe, it didn't hurt.
I've read quite a bit lately about being the "invisible sisters" because everyone wants to believe that once they make it past a certain point, they're cured and it won't come back. We represent what they fear most and it's hard to look your fear in the face sometimes (literally and figuratively).
Lori - glad it's going well for you! I know what you mean about feeling like it's all been a big mistake and I can't possibly have cancer.
Hugs to all,
Terre
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Invisible Sister....never heard it mentioned like that before. Well, I can honestly say, I was NOT one of those. Altho in year 6 I was finally feeling the most "normal" that I had felt in the last 6 years. My MO had told me back in December that I made it past 5 years and if I just wanted to get checked yearly, he was ok with that. I on the other was NOT. I was not going to be comfortable until I hit 10 years and insisted on staying with 6 month check ups. Good thing I did! I'm still in shock, just can't wrap my head around it! I feel as normal as any 56 yo woman! And the other thing....I can't bring myself to change my diagnosis here. I may have to just erase it all together!
Can we say DENILE?
Just noticed, we are a well diverse group of ladies! Wishing you all a wonderful week!
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Lori it's hard to get your head around particularly when you feel so 'normal'. I think it takes seeing the results of your first scan after treatment and you see either regression or progression.........that's when the truth really hits home. Having said that, live it up while the feeling is good and long may it last!
Love n hugs. Chrissy
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Just want to add my welcome to Lori and anyone else who may have joined this thread in recent days. And Skylotus, I hope your new regimen will send those TMs plummeting!
I also wanted to comment on supplements for strong bones. I'm quite the health nut, and wanted to share a couple of things I've learned from experience. (1) Choose a calcium supplement that's calcium citrate. It's better absorbed than calcium carbonate, etc. And (2) consider one of the newer supplement formulas that has boron, zinc and other minerals known to support bone health. My ND had me on something called Osteo-Mins A.M. (a supplement that has those bone building minerals) with my calcium/magnesium/D3 for awhile, and more recently I've been using an advanced blend by Solaray that has them all in one. Anyway, prior to adding those minerals (and prior to my bone mets dx) I was well into the osteopenic (bordering on osteoporosis) range, and 18 mos. after adding them, I was back up in the "normal" range, and my ortho surgeon (when I had the femur & pelvic fractures) said my bones showed no signs of osteoporisis.
Hindsfeet, I am sending you positive vibes for your UCLA appt today! (((Hugs))) to all, Deanna
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My DH and I are going on a trip to Istanbul this week that we planned 15 months ago. Of course when I was dx'd with Stage 4 right out of the gate 7 months ago, I had no idea if I would be able to go. Fortunately, Arimidex and radiation to T-6 has stopped the cancer from progressing. Actually a little regression was spotted. So I give thanks and am going to enjoy my time and all the sights that I will see. While I hope to dance with NED someday, I know many of us have a hard time finding him. And since I have never known anything but stage 4, in that sense maybe it is easier for me to accept the diagnosis. Meanwhile, I try to keep up my immune system and live with joy for each and every day that comes to me. Finally, this web site is a true gift. Since I personally don't know anyone else living with Stage 4 diagnosis, I look to the web site for facts, inspiration and camaraderie. thanks . Carolyn
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Beautiful pic Carolyn. Enjoy your trip
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Love your look of confidence, car2tenn, this is a beautiful photo of you.
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Skylotus,my reading of the package inserts says that the bone strengtheners only give a 30% reduction in skeletal related events. So although many of us take them, the benefit is not exactly what you would call huge.
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Wow Carolyn! Great photo! Please post some pics from you trip to Istanbul.......I have always wanted to go there, maybe someday on my next trip I will be able to work it in somehow. Anyway, have a great time, enjoy every sight, sound and smell as you will be able to live on the memory for many, many years to come!
Thanks Deanna, I usually take those as well but just forgot.......what I call a brain fart moment. It's great info and woohoo on getting you back to normal. I'm due for another DEXA so it will be interesting to see what my bones are doing. On the last one I was osteopenic with two vertibrae with osteoporosis.
Skylotus I don't know if they mention that if you are on them long term you can get very brittle bones that are subject to breaking? It seems to be a big juggling act when it comes to bone health.......you are sort of dammed if you do and dammed if you don't sort of thing. I just thank goodness that I am allergic to them so I have to look after my bones the natural way. Im not say it's better or worse just a different approach and proves the point that we all need to do our research into all of the drugs that are being offered to us.
Love n hugs. Chrissy
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Wow Carolyn - what a great photo and what a fantastic trip! I have friends who have travelled the world and say that if they could only go back to one place, it would be Istanbul. We want pictures!!!
Thanks for the bone health tip, Deanna. I asked my MO about calcium supplements and he doesn't like them due to potential for heart issues, and thinks I should get what i need from food. However, I don't like milk - except for ice cream or in my coffee.
My GP has requested a bone density scan, but the waiting list is really long, even if I pay for it myself, so I have no clue about bone density. But I kind of intuitively feel like I should be taking a supplement of some sort.Chrissy - well said. I went from shock to depression to a form of denial until I saw how thin my vertebrae is and how much of my femur was gone. Then it hit home. Now I'm back into a vauge denial in a way, in that I feel pretty good and just basically ignore it. However, my boss asked me during my evaluation today what I wanted in five years and I said "to be alive and still in good shape." So I'm not 100% out of touch with reality.
Lori - enjoy feeling great as long as you can!
Hugs,
Terre
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Terre that was a fabulous answer!......lol.......I'm just wondering what your Boss said.......lol.
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He said, "well yeah, that's what we're all hoping for, but I'm sure you will be. So..ignoring the health thing, because you should just plan on being here for your retirement party...what does your group look like when you retire? How big is it? What are the people doing? What are we well known for?" He went on to say that I need to write it down and plan it, focus on it, and he knows I'm so goal oriented, that I'll make it happen - including the health part.
He's an amazing boss. He just turned 40 and he owns the company. He has incredible vision and has created a wonderful working environment. So I'm really lucky. He knew I had Stage IV cancer when he hired me and had no qualms about it. He lets me work from home, gives me huge flexibility, and trusts me completely. Pretty cool stuff. 0 -
Wow Terre he sure does sound like a real cool boss! You go girl and set those goals! there is nothing wrong with looking further down the road and not letting anything stand in your way!! Bad health or not. I wish there were more bosses like that around as being flexible makes life with stage IV at least a little less stressful.
Love n hugs. Chrissy
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