Bone Mets Thread
Comments
-
Hi to everyone!
Maine - welcome! As the others said, sorry you're here but glad you found us.
Valerie - so glad you're ok! Your view is stunning. Rest, rest, and more rest is the key to recovery.
Carol - hope your treatment goes well with no SEs.
Lynne - good advice to Aurora. Made me laugh "because they hear so much better".
Deanna - you are like a rock star - 2 miles! Wow! I'm happy to make 200 metres.
Myra - thanks for letting us know Dune is ok. Sorry your SEs were bad this month.
Xavo, Patty, Lynnwood, Annie, Chelle, everyone else... - hope you're doing well.
Wishing everyone a great day!
Terre
0 -
Hi y'all. What follows is a copy/ paste from the reply I sent to Patty. Thanks for checking on me Patty. I apologize for causing concern. I have had a pain problem, so when I would get in bed I tried to sleep ASAP. Then it's a daunting task to catch up.
I have just started Letrozole and Ibrance. Man, it's good we finally resumed therapy. I'm sitting here scared because I don't know when I should call for help with this wheezing that started yesterday. It's creepy, sounds like a little girl talking to me, saying hello. Maybe we waited too long. Definitely the cancer in my lungs spread.
However, I am ok. It's just that this is all new and raw.
0 -
I made the papers, so I guess I've had my 3 seconds of fame. This may be the last time I had chemo. They bring a dog in to lift our spirits.
0 -
Hi all,
Dee - your garden is pure delight to my eyes. Gorgeous!
Maine - glad you jumped in and feeling better so soon, and welcome!
Lynne - Count me in at tea time. Wow that would be great.
Loves - Saying goodbye to Aredia (like Zometa) and starting Xgeva next week. Don't worry too much about the tx. With Aredia, I had achy joints and bones and tired for 48 hours.
Deanna - I'm still walking twice a day. Some days longer walks, some days shorter but at least I get out and do it.
Valerie - soooooo nice to hear from you and glad there is no damage.
Dune - so happy that you checked in. Sorry about that wheezing, you must be so uncomfortable. Don't wait too long before calling your Onc, you shouldn't stay like that. Resuming tx is great and wishing you the best with Ibrance/Femara. A lot of gals on this combo on this thread. Don't try to catch up, just take it from here. Synopsis: we have been and continue to be rooting for you! Sending you big hugs. Cheers as Dee always says.
0 -
Deanna,
I was on Aredia for 16 treatments and never had bad se's. My mo mentioned that some do have flu like se's, but usually only with the first tx. Once, they ran the infusion more quickly than usual and that left some se's, but it was brief and bearable. I know some people are very sensitive to medications, but most are no problem for me (except IV morphine, ugh). I think we forget that many of these bone strengtheners are used more commonly for osteoporosis (though different dosing)
Dune,
Cute doggie! My infusion center had dogs come visit too. I loved it.
Hope everyone is having a good weekend
0 -
You are all so sweet!
Deanna- A two mile walk! Congrats!
Linda- Looks like we may be able to compare notes at the same time regarding the Xgeva and you're talking walks!!
I am pretty much bed ridden right now. My left leg cannot hold weight without bad pain. It's ok as long as I do not put pressure on it. I pray pet scan on Wednesday will tell the story of what is going on there. It came on slowly, but it does not hurt if I am standing just if I try and walk and put pressure. Stairs are out -- I am not even sure where the pain is coming from- I think it radiates down the side of my thigh maybe? I am just not sure. I try and press on my bone and I can't find a spot. No pain med helps it- That is why I think I may have a fracture of some kind. I cannot wait for the Ibrance to come. I am hoping it's here Monday or Tuesday. I did start the Femara already. Wednesday sounds so far away before I have any idea of what is going on.
Terre- Wow you live all the way in New Zealand! I hear how beautiful it is there. One of my BFF spell's her name exactly like you. She is the kindest most beautiful person ever.
Kendra- so glad you made out well from your head injury.. hugs..
0 -
Hello to all,
Valerie, so glad you checked in and you're ok, I was getting worried. Looks like a beautiful view from your bedroom!
Maine, welcome and glad you stopped lurking. It is great to hear you've had such improvement already and walking 3 miles in the woods is awesome!
Deanna, I'm impressed with your 2 mile walk today. I need to push myself a little harder but it's getting cold here already and that makes me want to curl up under a blanket.
Myra, do you have any recent pics of your granddaughter? They grow so fast! I want to be a grandma too but dd's are nowhere near that point in their lives. I can live vicariously through others who are grandmas though
. Dune, you're famous! Glad you checked in, we missed you. Praying that wheezing is nothing serious.
LovesMaltese, so sorry for your pain and praying you get answers and relief real soon.
Hugs to all, Annie
0 -
Valerie! WOW so happy for you that you are over the scans and at least you know there is no fracture. Emotions of course take a big toll on everyone. What a view! Hope to hear the worst is over.
Dune, so sorry things are lousy now, maybe you would feel more at peace once you do know what is causing this havoc with you. You did get your 15mins of fame, the article was about the calming effects of pets? thanks for sharing.
Patty glad that you are around, I could tell from the way you write that you have some strength back. Good for you.
LoveMaltes we'll keep the good vibes for you.
Chelle how old are the kids at home? My daughter has a 8yr and 6yr old.
Auroaya hope they try to keep you with other people that are there for different type of therapies and not only with elderly people. But maybe you could put a smile on their face, that should be a feel good moment. Oh, I went to visit an elderly aunt of mine in a rehab place, and an older gentleman called me into his room, I think I was there for well over an hour listening to his stories he would not let me go away.
Dee love love your pictures, they are a picture of hope!
I still don't understand how they decide if they give Zometa or Xgeva, for Dani they opted for Zometa, I hope it's the right decision. She just took the flu shot, and is having some SE's so that's too bad. But hope it will go away real soon, the doc said it's a must.
Feel good everyone,
0 -
Dune - so sorry you're having a crap time. Sending prayers that the wheezing is hay fever or a cold. Sounds bizarre wishing someone has a cold. But you know what I mean. Let us know what your onc says. Go to emergency if you need to. Here's praying your new combo kicks this crap to the kerb for you. Love the pic of you and the doggie. Sending hugs.
LovesMaltese - so sorry you're having leg pain. Hope they get it sorted on Wednesday, but sorry you have to wait that long.
Momallthetime- hope Dani feels better soon.
0 -
Kendra thank goodness your are alright.
0 -
Kendra, so,glad to,hear that you are ok! I love the view from your bedroom, very quaint. Mom, I have three children,all girls 25,20 and 13. I also have a five year old grandson, you see me pictured with. When I read that Danis children are so young, I had a couple of tears run down my face. I pray for us all and our families every day. The heartache is unbearable at times.Annie, good to hear no bad se this time! Dune, I'm with Terre, praying for a cold! I had a nice day with my adorable Dh and youngest Dd. Just loving my everyday life to the fullest! Happy Sunday's to everyone! Love Chelle
Here's another picture of by beautiful state, snow is starting to pile up on the slopes. This is taken near Steamboat Springs.
0 -
Beautiful picture, Chelle! Steamboat Springs was always a favourite area of mine; we went to Colorado frequently when I was growing up.
0 -
Good Morning All, I've been drinking my coffee and getting caught up. Whew. Welcome to all the newcomers!
Dune, love the photo of you in the paper with the dog. Has your wheezing got any better? Please call your doc if it hasn't. Hope you are better today.
Dee and Chelle, the photos are so beautiful. Love seeing pictures from all of you.
Annie, still doing ok?
Valerie and Aurora, so good to hear you are both doing better and on to recovery.
Maine, Your kyphoplasty must have been the key to your pain relief. Continue to do well.
Patty, I'm so happy to see you post again. There was a collective sigh of relief when we all knew you were doing better.
My dh and I took my son back to the airport yesterday, and I cried hugging him good-bye. So hard to do. We had a good time with him and his girlfriend and I had some much needed alone time with him as well. We've been on the go for 3 days and I'm pretty exhausted and in fair amount of pain so guess I will lay low and recoup today. I start Xgeva tomorrow since I can no longer take Zometa. Sounds like a number of us are starting Xgeva or switching to it. My best to all I missed, Just know that I think of all of you. You are my lifeline ladies!
Linda
0 -
Good morning ladies. I had a great night and woke up feeling good. Yea ! I had thought it was all downhill lately but am so glad things are looking up. Ds1 had a friend spend the night last night and I stayed up later then them. Wow!
Lundalou - rest up ! So glad you got that special time alone with your son.
Chelle -& 50s girl - keep on living life to the fullest. Love the pics. Thanks for sharing.
Annie - how cold as it got there? I think our coolest has been 39 so far
Love all the ladies out walking or exercising. Keep it up - lindaE, deanna, Maine
Terre - hugs
Lovesmaltes - never heard of peppermint oil. What exactly do you use it for?
Dune - so you are famous and beautiful ? Thanks for updating us. I miss you. Is the wheezing thing def cancer in the lounge or could be seasonal cold or sinus junk? I hope it's the latter. I do hear ya on the sleep thing. If you are going to be in major pain might as well take your pain med and sleep thru it. My problem has been way way too much sleep. I don't want to sleep thru the rest of my life. I want some quality of life ! Hoping your new tx combo is just whats needed . love ya
Dee - that sounds like my kind of day. Would love to spend the days sorting books I love to read. Mostly I borrow them from the library but I often get them returned late ( luckily they don't charge late fees ). A good book, a good chair outside with the sun warming my face and body - ahhh delightful.
No way to reach everyone , it seems we've grown. Sweet ! My fingers and brain give up before I reach everyone. Sorry. Hoping for a pain free day for all
Hugs all around
0 -
Good morning everyone!
I just created a new thread but think this probably would have been the best place to ask my question.
The pain flare or tumor flare that doctor's warn about after rads, would this only be felt in the area being radiated? I know tumor flare from a new chemo or hormonal could affect the entire body, but would that be the same for rads? I'm asking because my mother is experiencing all kinds of new pains that just started halfway through her 10 rads to the sacrum and L1. She now has pain in the hips, the arms, and the ribs and these pains are new and quite intense.
Wishing you all a happy and pain-free Sunday.
0 -
Beautiful picture Chelle a picture really is worth a thousand words. Winter is coming and the only one who is excited about that here is my dog.
0 -
Happy Sunday all,
Goldengirls, that's a tricky question. I had pain flare when I had rads to pubic bone. Real bad. Pain radiated through leg (although I have a met on femur), lower abdomen and the back of my pelvis. It was more the surrounding areas. That was the only time I had a pain flare with rads.
Lindalou - sounds like you had a great time!
Beautiful pics all around.
0 -
Good morning ladies! Beautiful Picture of Colorado Chelle, one of my favorites states. We were there during elk mating season and they took over the whole town of Estes. It was so fun. No one bothered them and they just roamed all around they were so fun to watch.
Well, here is a new picture of Mallory, all dressed up and ready for her first official outing I miss her so much my heart hurts and I guarantee it has nothing to do with mets
Love, Myra.
0 -
Myra...Mallory is so sweet and adorable, and that smile.......She has changed already!
0 -
Thank you for the beautiful photo, Chelle. I lived in Steamboat for 5 years back in the 1970s, in between living in Aspen & Vail (I was in the ski/resort business), and it still has a very special place in my heart, although it's grown and changed so much since I lived there. I'm guessing the photo was taken on the Yampa River near Oak Creek, but not sure. Anyway, I've just saved it to my Pinterest travel board.
Mallory is an absolute doll, Myra! When will you get to see her again?
Dune, I'm also praying your breathing symptoms have absolutely nothing to do with lung mets!
Linda, glad you had such a wonderful time with your son!
It's a cool 61 here this morning (amazing!), so I'm off to try to walk again.
0 -
wow that Mallory is beautiful and looks so content, of course you miss her!
I love all the. pictures including GG's wonderful garden, Kendrasue' s offer of tea and Chelle's beautiful Colorado.
Patty wonderful to have you back and healing in mind and body. I continue to send. healing thoughts your way.
Goldengirls, I imagine rads has all sorts of ways to cause pain in the process of healing. I hope your mom's doctors have some plan to keep her comfortable.
Aurora, I am thinking of you in the rehab facility hang in there. I have a good friend who is a rec therapist and she tries to keep peoples life as close to home as p ossible. So keep any routines you can: morning coffee, evening news, favorite tv programs or radio news. I am wishing you can be home soon.
I start a new treatment soon due to progression but MO is thrilled with imact from radiation( so am I), and was impressed by. "low tumor volume". He is giving me a choice between Abraxane, Faslodex and afinitor and extemestene. I am leaning toward adding afinitor to the extemestene. I already take. This just seems like the most logical progression. I really think I could tolerate Abraxane but dont want to lose my hair because then the whole world knows I am sick. Is that vanity or logic. My MO cautioned me not to over think it because if all goes as planned I will eventually try everything.
Everyone enjoy Sunday! I love lazy mornings with my. husband and son. and next weekend my daughter visits YAY.
0 -
Myra, Thank you for posting the new picture of Mallory. She is so beautiful. I hope you see her again soon.
Chelle, I have never been to Colorado (unless you count a layover at the Denver airport). The picture you posted makes me realize that I am missing out on a beautiful area. There are many places right here in the US that are worth visiting. I really need to start planning some trips.
Dune, I will pray that you find relief from your breathing problems. I hope you contact your onc if the symptoms continue.
Patty, it was good to hear that you have more energy and had a restful night. Now the trick will be to keep yourself from overdoing things. It is tempting, I am sure, but let your body recover from all you have been through before you get crazy.
Deanna, I will take 61 degrees!!!! It has been the the 20's and 30's in the mornings here lately. I know, that's what I get for living in NH. Brrrrrr.
Maine, I hope you are still feeling great today. Wishing lots of pain free days for you.
Aurora, How is the rehab going? I am sure you want the process to be a quick one, but the time you spend in rehab now will be well worth it in the long run. You remain in my thoughts and prayers. Keep us posted on your progress, frustrations, and everything else. Feel free to rant, scream, complain, or anything else on this thread. We are here for you.
Valerie, are you still feeling okay?
Have a good day, everyone. I plan to spend the afternoon with my DH watching the nation's most disliked football team (the Patriots, my favorites, of course) play the Jets.
Lynne
0 -
Chelle, I got married in Steamboat Springs many moons ago. It's gorgeous. Thanks for sharing the photo.
Myra, what a beautiful little girl. She has changed already. Keep the photos coming because she'll be a completely different little person in just a few months.
Dune, I'm sorry about your breathing problems. That has to be the worse! I hope you feel better soon.
Patty, I can tell you're feeling a bit better; your posts are more upbeat. I hope you continue to improve.
Lynne, enjoy a low-key day watching football. I gave it up years ago, especially since the Vikings are such an undisciplined team, on and off the field.
Aurora, I hope you can recover and get home soon. Chin up.
Amy
0 -
50s - so you are a football fan ? Good to know more about our beside te cancer crud.
Myra - oh my. Mallory is adorable.
3-16. - I also hate the "whole world knows I am sick " hairdo , so to speak. Then I remember I dont really give a second thought to what people think. My baldness was like 12 years ago. They sure have a lot more options for heads now.
0 -
Good morning all!
Love that someone else is posting pics! I love seeing snippets of everyone's life, whether where they live, traveled or grandbabies!
Golden, I had post rads pain that radiated (pun intended) up through my hips and along my back when I had my sacrum done. I don't think it's unusual because these areas are all connected. My RO suggested a Tylenol/Ibuprofen combo which helped me immensely.
Gotta run, DH is calling for me to help me. BBL, cheers, Dee
0 -
Hi all,
Just popping in to say - OMG...Mallory is beautiful. Myra, hope you get to see her again soon! She's so pretty she almost doesn't look real.
One month from today, we move into our new (to us) house. Can't wait. Just knowing we won't have to move again - this will be the last one. I have a young man who owns a moving and mini-storage business move us every time. He's really funny, has great prices, and is just a doll. I called him and said, "you want to move us again?" He said, "well, I reckon I do." I told him we won't be moving again; I said, "I plan to leave the place in a pine box and will just need the undertaker. Unless you want to do that move too?" And he said, "well I reckon I do." Cracked me up - nice to have that sorted! (I'm kidding.)
Patty - so great to see you back.
Dune - hope you're feeling better today.
3-16 - wishing the best for your new treatment. Remember, there's always Serge's House of Showgirl Wigs in Vegas. Good excuse for a Vegas trip if you are going to lose your hair. I always figured if I lost my hair I'd go there and get really slutty bought hair (that's what my friend calls it - bought hair and I think it's a good term).
Well, off to have coffee with a friend, then home to pull weeds and do some packing.
Hugs to all,
Terre
0 -
LovesMaltese, I hate to say it, but the pain you're describing really does sound like you have a fracture. At least, what you're describing sounds very reminiscent of what I went through that turned out to be a fractured femur. Best to stay off it as much as you possibly until they can sort it out, and I hope you get scan results quickly.
Dune, how exciting that you're on the front page of the section of a newspaper! You are famous! Our local hospital does a similar thing with dogs visiting the RT waiting room, and I always looked forward to seeing them.
3-16, about your drug choices... When Anastrazole failed me, I was initially upset that my UCLA onc didn't move me to Femara+Ibrance, rather than Faslodex+Ibrance, because I'd assumed I would move through the 3 A/I's in sequential order. When I asked her about it, she explained that when a drug fails you, it's best (at least in her opinion) to go to one that works by an entirely different mechanism. She assured me I could always go back to Femara and Aromasin in the future, that I wasn't skipping over them, as I feared by going to Faslodex. I'm not sure if this relates to your situation, but it's something you might want to discuss with your onc, especially if Aromasin has failed you. I'm reluctant to rave about Faslodex+Ibrance just yet, but I am very happy I listened to her because I think it was the right thing for me.
0 -
Patty, Yes, I like most sports. I grew up being a fan of the Red Sox, Bruins, and Patriots. My Dad played several sports in high school and then became a runner as an adult. (He finished the Boston Marathan 5 times, long before it became fashionable.) Anyway, my parents had 2daughters and no sons. We were raised in the same town that my parents grew up in. My father wanted to take us to the high school baseball, basketball, and football games. My older sister wanted no part of it and didn't join us, but I loved it. I still have many fond memories of spending that time with my dad as he explained the game rules to me. That information came in handy since my DH and I have 6 sons who played various combinations of baseball, hockey, basketball, and soccer. We now have 8 grandchildren, and the children old enough to play are involved in sports. DH and I attend many of their games. We have added tennis and lacrosse to the mix.
Well, that is WAY more info than you wanted. Gotta gowatch the 2nd half of the Pats game.
Lynne
0 -
Hello to all old and new! Since I was off the boards for several months just busy with living (praise God) I've missed so much and it's hard to catch up but I wish you all well. I do love this place and the support you all offer here. I can't imagine going through this without all of you, especially since I have chosen at this point in my diagnosis to keep it private except for my immediate family and closest of friends. I've adopted the "need to know" basis for the time being and I'm comfortable with that. Has anyone else gone this route?
Myra, your granddaughter is precious! Sometimes I feel that my experience mirrors yours when I read your posts lately. Especially the stable scans but increased TM and your feeling that the more you move the better you feel and more energy you have.
Patty I'm glad you are feeling a bit better and wish you continued improvement by leaps and bounds.
Dune, glad to see you and wish you much success with the new treatment.
Just wanted to let you also know that my experience with Xegava has been a piece of cake. I have been getting monthly shots for a year now and the worst thing about them for me is that they burn going in. So, hopefully you will have minimal SEs. I see that some of you get them in your abdomen. Does it help?
I hope you all are having a wonderful pain free day. I keep you all in my prayers and hope to check in more often to get up to speed with everyone.
0 -
jj, I get xgeva in my stomach and feel virtually no pain. A nurse convinced me to try it there and though I was doubtful, she was so right. Sometimes i don't even feel the initial prick of the needle. Give it a try, I think you'll agree.
Amy
0
