Bone Mets Thread
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And some really good news about BC!
http://www.stuff.co.nz/national/67457475/otago-researchers-identify-drugs-to-beat-hereditary-cancers - includes lobular BC.
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Linda, Hope you have a wonderful, relaxing time in Cuba! Glad you got good news at the onc's office and some drugs to help you with your increased pain. Would not be at all surprised if the warmth alone makes some of that pain vanish. Have a great trip!Patti, So happy to hear you are back home, feeling better, and getting some quality time with your boys!
Dee, Are you finally feeling better? Seems like you have been having a rough time all winter with various bugs. Hope you are over all that and enjoying the spring there.
Dune, Sounds like you breezed right through your rads! That's great that you are feeling good and able to enjoy that 3 year old of yours. Is that a nephew? Wish I had a little one in my life, they are SO much fun. Are you seeing any signs of spring there yet?
Terre, Glad you got your housing issues straightened out. Your energy level just amazes me. I guess we do what we have to, but I can't imagine moving at this point in my life. And you still working mega hours besides, don't know how you do it, but keep on!
Deanna, I wanted to especially thank you for your reminder to be kinder and more thoughtful to our DHs. Mine is a gem and takes the brunt of my mood swings (I swear I am like a 13 year old girl these days) and is unceasingly kind to me. I know I take him for granted sometimes. Thanks to your thoughtfulness, I will remember to work on that. You always have such kind and encouraging words for everyone else, hope you get some encouraging words when you see your UCLA mo.
AnnieO, Hello and hope you are feeling well these days. Sending some spring breezes up your way!
Best wishes for a good weekend for everyone I missed.
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Thank you for the articles on increasing blood counts, especially wbc! It's so important that we be able to continue taking the full dose treatment and not have to take breaks. Looking forward to researching these a bit more and implementing some of them
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Thanks for the kind words, Jobur. I feel like I have no energy compared with my former self. I sleep a lot on weekends, I sleep on the train to and from work, and when I work from home, I'm known to take a nana nap in the afternoon in lieu of lunch hour.
Moving sucks, I'm not happy about it, but it is what it is. The rental we've found is way cool and it's only until December, which gives me huge incentive to get my finances sorted out so we qualify for a decent loan by November. Then hopefully buy a place and not have to move again! We do hire some lovely young men to do the lifting and shifting. However, since we have 4 days off at Easter, I've hired a small truck for Friday and we're going to shift telescopes, boxes, etc, especially breakable stuff. We can back right up to the garage at the new place, so it should be relatively easy. And DH has promised to shift boxes at the house we're in down to the garage, so it will be easy at this end.The hard part is that I have to go to Christchurch for 3 days (Sun - Tues) because I have to give evidence at a hearing on an environmental issue (nothing criminal!). Fly out Sun afternoon, fly home Tues. So I miss have a Sunday of packing. And the balloon festival is Easter weekend, and I am very committed to attending, weather permitting. Lastly, I've swapped a volunteer day, so I work at the kitten place on the Saturday of Easter weekend. Oh well! Should be pretty full on the next few weeks, but once we're moved, it will be back to normal. We're also trying to pack in a more coherent manner this time, so that things we won't need between April and December can just stay packed and stored.
All that said, compared to what most of you all are going through...this is nothing; it's just temporary churn and chaos. I'm feeling pretty good; my knee (arthritis) is sore, but otherwise, really no significant aches and pains as long as I take my Celebrex every day. So I really can't complain. I also started seeing a counselor last week and see her again this week. She's on the same floor as my office, is in her 50s, and I just like her. Not cheap, but just having someone to talk to about the nameless depression helps a lot. I'm feeling better already - she said to do something fun, so I goofed off during the cage cleaning at the kitten place and got video of a kitten being silly as silly can be. I laugh every time I watch it. And I hopefully get to meet Carpe Diem in a couple of weeks! Can't wait!
Hugs to all,
Terre
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Jobur - so nice to hear from you and thank you for your good wishes. It will be a test with warm weather. How are you doing?Linda
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Romansma. Stable is great !!!!!
Linda - reduction in mets. Yea !
Reason to celebrate. Indeed
I am up and about getting ready slowly for the sleepover. Just have to make and decorate cake and wrap presents. Resting the rest if the days so I can hang as late as possible tonight for ds1 sleepover.
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Enjoy the party, this is what the best memories are made of! Time goes so quickly. Myra
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Hi All,
Just a quick note. Nice to see Jobur. Patty, hope you're getting the rest you need, don't do too much. Linda, don't you leave for Cuba in a few days? Have a wonderful time. KCM, Wish I could come & help you pack. Hate that you have to do it. I don't know how you go to the Kitten Inn & don't bring home every one of them. That little tortie in the video looks just like Victoria.
Romanma, low TM's yea! Dune, hope you're feeling ok. Sorry if I've missed anyone, I've read & kept up but I have a hard time remembering what's what.
Touch wood, I seem to have finally gotten rid of that horrid flu. We are on our way from Vancouver to Kelowna today to look at a vintage car. Bit of a flyer trip, but DH has always wanted a Volvo P1800ES (google it if you're curious) and they are hard to find, hence the trip.
Cheers, Dee
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Wow, Kiwi, I'm wiped out reading about all you do. You must be an energizer bunny!
Making the cake, eh, Patty? You overachiever! My sons 11th bday is next week and he is having a sleepover with 6 friends. I finally got the invitations out. I am buying the cake, presents ordered from Amazon, and pizza delivery. That's all I got! Hoping form ore energy by then so I can hang out a little, but he's at an age where he doesn't need mom hovering, it's all good!
Enjoy your boy, Patty!
Thanks for the well wishes, Dee. Wish TMs were low. They just didn't go up this past month, so I'm calling that a victory. Hoping for them to come down a little soon. Time will tell.
TGIF!
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I'm impressed Patty - making the cake?!?! I'd be with Romansma even without any health issues. Of course, my DH says the thing I make best for dinner is reservations.
That said, our oven has never worked properly in the house we're in now. However, the house we're moving into has a brand new Bosch oven AND a natural gas cooktop! All new!!! I haven't had decent kitchen appliances since I left the US. So I am planning on maybe trying some baking after we move. Romansma - stable TMs is a victory! And happy birthday to your son.
Dee - keeping fingers crossed that the nasty flu is truly gone and that the trip is a success!
Goofed off way too much yesterday so I need to finish a report today (it's Saturday here). Then tomorrow we pack...ick.
Linda - I think you're leaving like within the next day or so? Bon Voyage and safe travels!
Hugs to all,
Terre
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Yes KWC - we have a flight at 7:00 am on Sunday, but leaving tomorrow afternoon and sleeping at the airport's hotel. Bon voyage to you to even if it's not so much fun and may I add, bon courage with your packing.
I'm not travelling with my computer but will check in at their internet café once in a while to see how you are all doing.
Hugs to all - Linda
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be safe. Have fun
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Romansma, Enjoy the day with the birthday son and friends. Kids that age are awesome funny and make their own crazy time. Happy birthday to bday boy and big hugs to an awesome mom. Peggy
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hi everyone! I have not posted in a long time, but read the boards a lot. Just have a question.
I have a met on my sacrum 2.5 cm that was radiated last October. It has really started hurting lately. Waking up at night hurting. Nothing on MRI. Do you think this is pain associated with bone healing? Do bones hurt when they heal?Have any of you had this happen? Thanks.
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Hi Lynn,
Welcome back! I don't know if your pain is associated with bone healing, but I can guarantee that bones healing do hurt! I just had a bone scan, CT scan, and x-rays of my femur which has a titanium pin. I had a horrible burning sensation all the way down the bone so I was really concerned. But...the femur is growing back. My spine met has been sore too, but I have some bone growth there as well. The orthopedic surgeon said that I basically have "growing pains", which is the pain you get when your bones are growing. Sending good thoughts your way that this is the case for you!
Terre
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Linda, have a great time in Cuba!
Patty, Hope DS party went well. Try not to feel guilty about it being so late. The first time I was dx, my ds birthday party was 3 months late and it was one of the sickest days I had, so I ended up missing it anyway (it was at a bounce place and my mom had to bring me home.)
Dune - I think you mentioned 15 minutes of walking. I think every little bit helps. I have not been walking for so long, but finally started again last weekend. Did 25 min Sat and 45 min Sunday. I did 25 min again today and will go again tomorrow. I am hoping it helps with my fatigue. I slept 12 hours again the last two days.
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Terre,
Thank you for the welcome!
Glad to hear yours were just growing pains and I hope they'll go away soon. When was the radiation on your spine? I also have one there that still hurts occasionally after 1.5 years. On the T 9
Sending good thoughts your way, too!
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I had radiation two years ago and my spine and my rib still ache sometimes. As does my hip and leg. But just aches, not horrible pain. The growing pains (assuming the doc was right) have largely subsided, but sometimes the femur feels like it's burning at night-time. Again, nothing awful, just noticeable and much better than it was!
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Meegan I had planned to walk today, but I didn't do it. I've been so bored I haven't left my bed. I think I finally got disgusted enough with myself that I will do that walk tomorrow. Hopefully I will get to Trader Joe's one day this next week. I'm trying to plan various things to do. The problem will be doing them alone. Clearly, though, no one is extending an invitation.
Jobur I did google that car. There were a lot of pictures, and they all looked different. They had some nice lines. Good luck with that.
Annie, I believe you asked about my jaw. They don't know what is causing it. The next step would be a neurologist, but I'm not going to do that. I'm glad there's no damage, no necrosis, and I can live with the numbness and pain. I practically used to it now.
Best of luck on your move Terre. I hope it is as pain-free as possible.
Have a great trip Linda. I can't wait to see pictures and read about your adventures.
Charlene
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Just checking in to say hi to everyone! Somehow this thread dropped off my favorites & I don't know how the heck I didn't notice (chemo brain!) Then it dawned on me, where's all my favorites! Dah!
So glad to hear of many positive updates, forgive me for not commenting on each individually; however, these boards help to get us through all the ups and downs of tx, pain, s/e, etc., thank goodness!!
Take care ...
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Hi SryMom - how's your back doing? Any relief?
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good morning all
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Hey Patty! How are you doing?
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Hi, Patty! How're you feeling? And, "Hi," SyrMom. I can totally relate to dropping this thread from your favorites. Been there; done that!
Dune, not sure what you meant about no one extending an invitation, but if you want or need help doing errands, please speak up and let those close to you know your needs! Sometimes I think people are far more willing to help than we give them credit for -- they just need to know what you need.
My CT (the first since July) is on Friday, and I'm already feeling IV anxiety. Since UCLA is 3 hrs. away, I'm following GG's lead this time and DH and I are planning to stay over and meet up with some friends on Saturday. I'd hoped that would ease my tension some, but so far that isn't happening. I have some "new" rib pain going on that I've been thinking could be from a truncal LE flare, but I guess I don't really think it is. So, we'll see...
Have a great week, everyone! It will be quieter here than it has been this past week with a major tennis tournament going on in our neighborhood and an incredible number of personal jets taking off at all hours of the day and night from the little airport nearby. I would have loved to hang out there and see all who was coming and going. The Coachella music festival is coming up next. Deanna
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Deanna - good luck with the scan and scanxiety. Hope you get some fun into the mix.
Patty - hope you're doing better!
Thanks for the good wishes, Dune. I think Deanna's right - sometimes you just have to ask people. They do want to help, but don't know what to do and are afraid of doing the wrong thing. I know I probably make it hard on others because I want it both ways - don't treat me like I'm elderly and infirm, but do acknowledge that i have pain and limitations I didn't have before. Oh well.
Hope everyone has a great day!
Terre
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Hi everyone ... have a R/O consultation tomorrow, first thing. Pain better, not gone, but surprisingly NSAIDS worked the best (along with titrating dose of decadron). Have to keep watch on platelets. Also, small dose of valium at night b4 bed helps to keep muscles relaxed as I have only been able to sleep in one position, on my back, for years. If the pain can stay at a functional, manageable level, I would like to see what, if any, effect the Halaven might have on the new mets. Don't remember if I mentioned new uptake on Bone Scan, more mets, in rib areas since Aug. No surprise, as I had failed 2 chemos since then & feel lucky I'm even alive after such a run of failures and liver met progression.
The "general body spasms/tetany like" are almost more bothersome now - can't even stretch without setting it off - it has to be the chemo - just have to find something to help. I see comments all over regarding muscle pain/chemo. Have to be careful with anything I do, real careful, think, think!!
Take care everyone. Good luck with all the scans ... I've been scanned head to toe in the last 2 weeks - ugh! Next week is chemo break week - yea! Not too fast though, that's when the back first went into major spasm, on a week off, so careful movements ....
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Hi everyone!!
We're back from our little excursion to look at a car. The weather was certainly a challenge with incredibly dense fog on our way to the Okanagan & torrential rain on the way back. In between the weather was lovely & spring like. We didn't buy the car.
Needs too much work for the $$$.Had my blood work in anticipation on my infusion on Friday. Honestly, I wish folks would do their jobs. When I got there today, they didn't want to do the blood draw because I didn't have a requisition. I've been doing this since June & I've never had a req, it's a standing order. I didn't just travel for 2 hours, sitting in a ferry line up for this BS. I finally convinced them to do it because I can't get my infusion on Friday if I don't & my back is killing me. I will call my onco's office tomorrow, but boy my stress level is high tonight!
Deanna, I hope you enjoy your little get away. You can never really forget why you're there, but a bit of fun & visiting with friends makes "the medicine go down"
SyrMom, sorry to hear that your pain isn't subsiding. It's hard to remember that you can't do what you used to do. Take it easy!
I'm off to have a glass of vino.... take my mind off today! Take care everybody! Cheers, Dee
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Actually, my friends are all quite a distance from me. I really had to come up with some ideas for things to go do. I did ask one lady I used to work with if she wanted to go out to eat today, so we went to Panera's. I'm planning to go to the cherry blossom festival in DC on Apr 11. I found someone to escort me to Cirque de Soleil. I'm not going to sit around the house, going out only when I have doctor's appointments. I have always held back. Let's see what happens if I let her rip.
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Whoa! I just got up and ate some graham crackers. I'm jumping right back on here before the drugs regain complete control. I just sit and fall asleep while I'm typing. It becomes complete gibberish. Anyway, I hope you are all doing well, and I will talk to you when I am somewhat more alert. LOL
Charlene
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Let her rip, indeed, Charlene! Good on you!
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