Bone Mets Thread
Comments
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Sandilee, your post should be a stickie somewhere! Yes, one can survive with fractures but wouldn't it be better to get treated before that and other nasty things happen?
Janet and Nicky, hope the next treatment kicks more butt!
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Your encouraging words have made my morning! Thank you! Last night was hard, very emotional, guess just one more time of tapping into the reality of what's ahead. BUT - today is the first day of ACTION! Thank you all & say a prayer! :-)
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Nicky,
Yep, I will be over on the "fanny pack" thread too. I am glad for our international community so someone somewhere is awake when I need a virtual hug at weird times. Crossing my fingers this works well for both of us.
Janet
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NickyJ, wow, am I understanding you correctly that the taxol also put your extensive bone mets into NED? Didn't think that was possible once extensive.
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hello ladies!!! I finished my ten rads today! Pain is gone. Ready for hystorectomy next Friday then HT. I know that is really when my questions will start! Lol, I see mt MO Friday to talk about it! Hugs to all!!!
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Had a CT for Rad mapping today. They molded a mask for my head and shoulders. It was hot, wet, slimy.....they bolted it to the table......a little more than I bargained for. All that after falling in the backyard this morning. Scraped on my knees, hands, and forehead. Starting to feel really sore. Wow, what a day!
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Romansma - good thing you didn't break anything when you fell!
What a day...hope you are not sore tomorrow.
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Romansma: I just finished radiation on C4-C6 and had to wear the mask. I know it is frightening at first but I hope you find the treatments not scary after the first one. The time goes so fast as you are on the table for such a short time. I always laid there and counted the beams to pass the time - four each side. I was surprised when they asked if I wanted the mask when we were done. I said no way did I ever want to see that mask again. They said most people want to keep it. The mask will not feel slimy or hot for you and never really bothered me. My only side effect started after 8 treatments with a throat that hurts when I swallow. The doctor said it will be better after a week or two. All and all, it seemed very easy. Best of luck.0
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Thanks for the encouragement. I guess I didn't think about what was going to happen and it caught me by surprise. As I laid on the table with hot, slimy mesh bolting my head and shoulders to the table, I could see a little, blurry stuff. The sounds and lights made me feel like I was the subject of an alien abduction. That was just the first part. Then I went over to the hospital and they used my new mask for the CT mapping. I've always known I have issues with loss of control and when your head and shoulders are tightly bolted to a table, there is a huge loss of control. Hopefully, tomorrow is a better day, although, I'm pretty sure it will be a sore one from that fall!
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SyrMom,
Yep, taxol worked for me. I had 3 spine mets, left shoulder, left hip and the whole of my sternum. After taxol the pet scan showed no activity. That was in February 2012, the pet scan in September was the same. I also had a met in my liver which shows no activity either. My markers are a good indication for me too - I started at 300, and went down to 18 by the end of taxol. They've started going up again, not by much, but 5 points or so at every blood test. They're now at 45, just over the line so my onco has switched me from tamoxifen to faslodex because he says that something is 'waking up' and he wants to catch it before there's a problem. Next blood test in 6 weeks, so we'll see!
Romansma, I remember the mask well! Having the cast made was definitely the worst part, but I did find it difficult lying on the bench bolted down. My back was so sore that I couldn't even lie on my bed with pillows on my back, so the hard surface didn't help! In the end it was worth it though. I got a lot of pain relief for nearly a year out of it. Now have compression so I have an operation in 3 weeks. Hopefully that will help a lot!
Nicky
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hi Nicky,
My mo said Faslodex takes awhile to work and when I start (not sure when they will waiting for a call) that they won't test blood for three months as TM may go up before they go down.
Janet
Ps just read the whole baa string. Petition has been taken offline at move on. Cannot imagine why. Would really like to have this instead of Faslodex but seems unlikely. And reading about the DuPont drug that was destroyed bybristol Myers makes me feel ill....I work at DuPont!!
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SryMom - I totally get where you're coming from. I was Stage 1, no lymph node involvement, and very low oncotype score. I wasn't supposed to recur. The good news for me is that my new kick-butt oncologist took me as a public patient in part because of that. He was involved with the oncotype clinical trial and doesn't understand why I recurred, so he finds me "interesting".
He told me the same as your onc told you - he has 10 and 15 year survivors and said there's no reason to think I won't be the same. Holding steady on Femera for now.
I had five rounds of radiation on my spine and the cancer is necrotic. Had one on my femur and it's necrotic. Still have a bit of back pain, but nothing horrible. The first radiation treatment was a bear; I threw up for about 3 hours afterwards. Then it was fine, just tired. And it helped the pain. So I'm a fan!
Hugs to all,
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Well Nicky & Terre all reasons to be more positive. I'm beginning to think the only way I'll know if my bone mets become "inactive" is by a pet scan. I was getting regular pet scans, but since the liver mets my onc has been ordering CT scans. I know there's a CT/Pet, not sure why he's not ordering that. At this point he's more concerned with the liver, for obvious reasons, so will wait and see what happens there before I start making demands! I wonder what happens if my 90%+ cancer filled verteb turns necrotic?? Hope the bone fills in, yikes. Of course, I'm getting ahead of myself. I have visions of that verteb .....
Nicky ... wishing faslodex kicks the "wake up" back to sleep for you!! Can you have more taxol, if needed?
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Well, Bone Mets Sisters, we have a plan!!! Started yesterday, will happen again tomorrow & starts again on Monday!!! Thank you, Lord, family, friends, etc., and thank you SISTERS for helping me through to this point!
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Yay Firelady! Doesn't it feel good when you have the road map? Makes you feel like you know where you are going. Good luck! Hoping everything goes well for you.
SryMom, Nicky and Terre keeping my fingers crossed that all goes well with you.
Love n hugs. Chrissy
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Hooray Firelady! Thanks for the response and good wishes Chrissy and SyrMom. I'm still feeling really good; tired but otherwise good. Everyone says I look good, so that's a bonus. I'm an environmental engineer doing monitoring at a construction site and the guys have nick named me "Mother Teresa" because I come to rescue them when they find weird stuff (like the septic tank they found yesterday). Haven't seen them since before Christmas and they all came up and said how happy they are to see that I'm looking healthy and happy. So, fingers crossed for continued good health.
SryMom - I have only bone mets at this point, so I know I'm quite lucky. See the orthopedic surgeon in mid Feb and the oncologist in late Feb or March. And we'll see what they say.
Continued good luck to all of you!
Hugs,
Terre
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firelady, so glad you have a plan!!! It's so much easier to deal with when you know what's going to be done 😊
Chrissy, thanks for the good wishes. I'm 2 days after my first faslodex shots, and so far not too bad. Only se's for the moment are pain at the injection sites and even stronger hot flashes than before. I feel like my body thermostat has gone a bit haywire too; I'm way too hot all the time, with a lovely red face 😕, but if that's all I have to deal with....
Today is my birthday, the 2nd since dx, so I'm hoping for a really good day!!
Nicky
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Happy Birthday Nicky!!!!!! So glad that you aren't feeling too bad after your faslodex jab and that you aren't feeling too many SE's. If nothing else, that is reason enough to celebrate but add in a birthday...........well that just means you need to celebrate like there's no tomorrow.......lol. Hope you are getting spoilt on your celebration day.
Love n hugs. Chrissy
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Happy Birthday, Nicky!!! Hope all your wishes come true!
Firelady, hope the map leads to the buried treasure!
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Happy birthday, Nicky!! Enjoy the day. I was on Faslodex too and found it to be easily tolerated; however, it did fire up the nightsweats and for the first time, hot flashes!
Firelady, so glad to hear you have a plan in place! Time to move forward! A good feeling.
Kiwicatmom (Mother Teresa), nice feeling, isn't it?! Good for you.
chrissyb, thanks.
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Happy Birthday, Nicky!!! Enjoy your special day!
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Happy birthday Nicky !
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happy birthday Nicky! Hope you have a good one.
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Happy Birthday Nicky!!!
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happy birthday! May there be many more..
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Happy Birthday, Nicky! I hope your day is full of special things!
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Have a very Happy Birthday Nicky!
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happy bd nikki
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hope you nada great bday Nicki. With the time change you are prob enjoying your special dinner for a special day. Here's to many many more!!
Janet
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Happy Birthday, Nicky! Hope you're having a lovely day
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