Bone Mets Thread
Comments
-
Mazal Tov on the new granddaughter Charlotte!
Grandchildren are THE BEST.
Leah
0 -
Mazel tov, Charlotte. I second Leah on how wonderful grandchildren are. I am expecting my second grandchild in late April.
Hope everyone else is finding some peace and comfort
0 -
Charlotte, congrats on becoming a grandma. My only grandchild-a girl-was born last year and she has added much joy to my life. Have fun with her. Heart problems too? Same here but a little different. My aortic valve needs to be replaced with a bovine valve soon. Not looking forward to the surgery and recovery. Anyone else had a aortic valve replacement?
Cristina, I hope your scan results are good and you get relief from the pain.
Aurora, good luck with your surgery and recovery.
Hugs to everyone!
0 -
Aurora - Congratulations on your well thought out decision! You certainly will be in our thoughts and prayers until then and especially on the 16th when you have your surgery.
0 -
Aurora, I think we all have fears about surgery. I know I did, especially the 7.5 hour one I had for my mx + Diep recon. But it's a risk worth taking. The one thing I would want to be sure is that you're as comfortable as you possible with your surgeon's experience and success record for this type of surgery. I'm sure you've checked those out, but that's the greatest concern I would have. If you have the best, then it's in God's hands. Beyond that, I echo what Linda just said -- many prayers on your behalf until this is behind you and you're on the road to recovery! (((Hugs))) Deanna
0 -
Aurora, You know your life best. Best wishes to you on your surgery.
Charlotte. I like others hope you can post grandbaby pictures. She is the same size as my lovely daughter who was born 19 years ago. So sorry for your heart troubles. I am glad they figured it out so quickly.
Deanna When I recently complained of hip pain and worry despite many good scans. You wisely said my MO might want to repeat the MRI since it has. been more than 6 months. Well you were right he has ordered an mri and I am anxious to get some answers.
Also celebrating my bathroom remold finished today with a long hot bath
0 -
Chatlotte, congrats on your new grandchild!! Welcome to the club, it is a much better one than mbc club...LOL
Linda and Annie, congrats on your great news.
Aurora best of luck with your surgery
Looks like Hurricane Joaquin will stay away from the East Coast. HOORAY
BEST TO ALL, Myra
0 -
steel rose thank u for your reply. So I now have another qx for everyone. I have been living w/bone mets for 3 yrs, grateful it hasn't gone anywhere else. Had Zometta infusions initially, hated how long it took, I actually had to change MO because I refused to apologize to nurse who told dr I wouldn't talk to her, she thought I was being rude. When dr called me to tell me I could not come back unless I apologized to his very deaf nurse. I laid into him about 2 sides to every story, how his nurse is so deaf she can't hear me anyway & yes I was pissed that my 15 min infusion took over 2 hrs cause they were understaffed. Sorry for my rant. Btw Zometta was easy to take, only SE I got was loose stools on day of treatment. So I gladly changed MO got her to change Zometta to Xgeva injection, along w/faslodex I got out in 30 min tops. Now w/ progression of bone mets I was told I need to decide what I want to try next. I have gone off Palbociclib to do some radiation to both hips My RO is offering a treatment of radioactive IV med called Quadromet. Has anyone tried this, know anything about it. Supposedly it has been around for yrs, kills cancer cells in bones. One time injection, may see drop in WBC, which was what got me w/Palbociclib. If anyone has had this treatment & would like to share experience I would be grateful. Thanks, Sue
0 -
Aurora, I think you've made a good decision and I know you can do this. Prayers for a successful surgery and an easy recovery.
Sue2009, I have no experience with Quadromet but I hope someone who does can come along and help you. You've done well and I'm sorry you've had a progression of your bone mets. Praying for you to be stable again.
Hugs to all, Annie
0 -
Ladies where to begin? To be honest my stomach was turning to have to talk about all that has been going on. I keep a kind of diary with all the appointments and different txs bcs if not i would loose my mind (it's lost already), so i gotta catchup there also.
As I read your posts I am such awe of the camaraderie. Guys maybe a little long, but i wanna get to as many of you as possible.
First update -So on to new Onco, new aggressive tx started, many different chemos being used silmutaneously that's how this is done. Scary but we had to move and fast. Platelets are dangerously low, any ideas what we could possibly do?? Major nose bleeds etc..trying very hard to see how next wk blood draw goes in hope of reversing it. WBC tanked. Neutrophils tanked. ASt/ALT going up. And TMs rising quick. What is going on??? Excessive mets all over, just ridiculous. But, we have great faith and hope that it will turn around. Gotta wait on some better results then they want to move on to Rads. We are holding our breath.
Turns out that convo with ex Onco went extremely uneventful. Actually, it was horrible, this Onco supposedly treated my daughter all these years, and when she heard of one more MRI with more progression, all of a sudden appointment was hard to come by, YEP believe it, and then she told me on the phone that when we do come, we will need to discuss new options. When I called to cancel appointment, and told her that we are actually going more aggressive bcs I see the handwriting on the wall, she said,yes it's reasonable in a flat voice, and didn't volunteer much at all, and told ME to send my daughter her love. Dani is shook up to say the least, after all this time, that is all she had to offer? She said she was not even trying to fight for her. I have been seeing this coming for awhile, she just washed her hands off her bcs she was running out of options. I was just told bt a friend doc that doctors don't much like failure. So they push the ones they think are not winning bets away. So cowardly, This could have been so different, if she would have any balls at all!!. I can't even... I could have told her many many things but to be honest i was thinking who knows when and if i might need her someday, and also it would be tooooo many things to say.
Btw, BIGGIE onco in major NYC cancer center, also BIG time coward, all he kept saying is that we should stick to the other one's opinion, BUT i know that they had a kinda argument about different opinions. Shame shame. Disgusting. I was not asking for bashing the other Onco just an opinion ON A LIFE!!!. These ppl with their egos, but Karma guys, oh Karma, even if ppl don't get diseases they will get old, and kinda needy and someday it will come asking for payback
myabe like many docs that write books after they will say, oh NOW I KNOW what is like to be a patient. The hell with them.Rachel1 my daughter sounds exactly like you, she wants to know but doesn't, neurosurgeon literally went after her in a different room just to ck her, bcs she was running away. then he came back and spoke with me, It's good for you to have the support you have.
Deana, cheering for your TMs!! btw regarding Radiologists reports, I know that they use type of pre Form Form...very disappointing, rarely will they actually write details. This business of just saying larger or more aggressive without any details. Deanna any ideas for your low Netrophils?
Wleeky1952 it's weird to see how few ladies here are HER2+ my daughter is, bcs of a biopsy done at her request (insistence), it showed that it changed from HER2- , what changed for you to get a biopsy?
Valerie you got company!
Annie so happy for you. Love your prayers.
LindaE what a great moment for you on stable TMs!
Cristina, good wishes on the MRI, it's really tough, and I think even worse with little ones around you. I can vouch for it, I see what my girl has to go thru.
Dee yep, it is good to be out there, but your remark was funny.
Terre thanks sweetie for your support.
Gaia 0132 - your feelings only proof that you are Human!! are you on Zometa and Xgeva? My daughter is on both is that a lot??
Dunnesleeper you are going thru such a hard time, everyone cares so much about you, take it easy.
Freebird53 I was paralyzed when i read what you wrote, we could all understand you. Its' insane, I hope we could change the course with Dani too.it's really scary.
I would like to address all of you, i did read your threads last week also, but to put things down and write that is another story.
So sorry I am skipping someone, and I do wish you a peaceful weekend.
0 -
Momallthetime - Sending hugs to you and Dani. Thanks for the update.
0 -
momallthetime, good to see you posting and to get caught up on Dani's situation. I can't tell you how sorry I am for the stress you've been going through, but I think Dani's onc showed you her true colors with being so willing to write Dani off her appointment schedule. Hopefully, her new onc will be 1000x better!
As far as the low counts, how low are they? Neulasta is used to increase WBCs if they are low enough to be life threatening due to the risk of infection. Without knowing what chemos her new onc has her on, it seems like any aggressive combo could put her in that situation -- with counts low enough to require Neulasta. Other than that, I know Pearlady has shared a regimen on the Ibrance thread that she uses to keep her counts higher than many of us on Ibrance have been able to do.
The only other question I have is, was Dani's bc ever tested for chemo sensitivity? As you probably know, there are tests out there (albeit expensive and possibly not always helpful) that supposedly or with luck can lend insight into the best options based on one's tumor profile. We may have talked about this earlier, but every time you post that Dani's imaging shows more progression, I can't help but wonder if that sort of test has been done or would be helpful in her situation. (((Hugs))) & prayers that Dani's newest onc and regimen will be the answer to prayer! Deanna
0 -
Hi everyone. It seems like mostly good news is being reported, and I congratulate everyone who is stable or healing or having lowering tumor markers. Cristine, I'm with you as regards pain. I get so tired of it. I should be grateful that my MO has had me on pain relievers since the beginning. Still, it's not good enough. Oh well. Best foot forward. 3/16 I'm sure you enjoyed your bath in your fresh new bathroom. Now it is a place where you can truly relax and unwind.
Hey Dee. Take it easy with all the running around you'll be doing. Those daily radiation treatments are a drag. Hopefully it will help, though.
Terre, congratulations on getting your article published. Such a talented lady! I used to write so much. I can hardly string together a sentence anymore, but I try once in a while to write something. It's like I haven't an idea in my head. I'm the scarecrow. I need to travel to OZ to see the Wizard about getting some brains.
Annie I'm glad the Celebrex is working for you.
I hope we all receive statuses of stable or of improvement.
0 -
Dune! So good to see you here, hope you're doing ok & can get some pain relief. Momallthetime, I am in awe of your spirit & hope that the new onc helps your daughter. Terre, I did check out your other post earlier. That tiny kitten is adorable & I hope those kids get some kind of commendation.
I had a good day in the garden, DH helped me dig out & move a huge raised bed. Back at it again tomorrow while the weather is good. Take care everyone, cheers, Dee
0 -
just a quick hello to all. I have been blown away at the love and compassion I have recieved from my bco sisters. Thank you so much for all the snail mail cards, pm's, text and even some sweet presents. Problem is most are signed by real names and I don't know exactly who they are since we use aliasa. So I can't thank everyone personally but please know it sure has put a smile on my face nearly everyday
I am back in the hospital since wed I think. Before that I was only home like 2 weeks since the previous hospitalization. Treating me for sepsis and uti. The sepsis meds keep me sleeping much of the time and makes my vision blurry and my fingers don't want to cooperate. Thus why I haven't been here. I certainly have missed y'all.
Not even trying to play catch up on so many pages but hope to start here and catch up on everybody. Seems like a lot if people are having a hard time physically and mentally. Hugs all around.
0 -
Patty, So glad to see you post, I am so sorry you are back in hospital again. I hope they can get this infection under control, you need to be home with your kids!! I feel bad that I didn't get to send you a card like I wanted to, but please know that I have been thinking about you often. Hugs, Dee
0 -
momall
I have very low platelets each month - have been in hospital 3 times in Sept for transfusions and immunoglobulin. It's called something like immune induced Thrombocytopenia. Last week the haematologist put me on a new daily drug called Revolade. Will see how it goes but could be worth asking your new onc about.
0 -
Patty! So good to hear from you but sorry you are back in the hospital with sepsis and uti. Hoping the docs get that under control quickly and that you can head home for good this time. Thinking of you often and wishing you a speedy recovery.
Bosco, Sounds like you have had your share of hospital time as well. I have not had Revolade but perhaps someone here can address that. Best to you as you also recover.
0 -
good morning friends. Hoping pain free days filled with laughter for all
0 -
Good morning Patty! I cannot begin to tell you how happy I am to see you here! But big boo on infection and hospital. Sending you big hugs and healing vibes.
Mommal - You and Dani have all my admiration. Can't believe the ex Onc's attitude. I don't have answers to your questions but I hope and pray things turn around quickly. In the midst of all that is going on, you still take the time to acknowledge some of us - WOW! But, don't worry about that, it's impossible to keep track of everything on this thread. As long as we can give you support, I think that's the most important thing right now.
Saying hi to all and wishing a beautiful day!
0 -
Hello to all,
Patty, loved seeing your post on this thread, we've missed you so much. So sorry about all you're dealing with but I'm sending you my love and healing hugs. Prayers for you to be out of the hospital real soon.
Momallthetime, wow you amaze me! Like Linda said you take the time to try and acknowledge all of us and that means so much. You have so much going on and I wish we could help you and Dani in some way. What the ex onc did is inexcusable and I feel outraged! Wishing you all the best with her new treatment plan, praying hard for all of her counts to rebound and for there to be brighter days ahead!
Hugs to all my beautiful friends here, Annie
0 -
(((Patty))). Just sending you a big healing hug!!! You are in my thoughts & prayers every day! Let us know when you're home again, and for now enjoy the TLC you evidently need where you are! Deanna
0 -
I just clicked on the Metastatic Trial search banner on the top of the page. If you live in Canada, don't bother, it won't take your postal code. There are several new trials going on here, but we are on our own to find them. Perhaps we can list them somewhere on this thread as there are quite a few of us who don't live in the US.
0 -
patty!!!!!! So so happy to see you post! Missed you so much! Hate that you are back in hospital. I hope the meds get rid of the infection asap. Much love to you and prayers always
0 -
Yes!!! TMs 297. That's only down 10 pts., but the first time in many months they've done a turnaround! Thank you Faslodex + Ibrance!
0 -
Thanks for all the good wishes. Little Leah is now here, She arrived a few days earlier than the due date 7lbs 1 oz 20 inches long. Her mom my DD also had a full head of dark hair which turned blonde later Since everyone else had hair I decided to have hair also.
0 -
Awwww!!!! So beautiful!!! And, yes, that's quite the head of hair! Congratulations again to all, and thanks for making me smile!
0 -
Charlotte,
Your granddaughter is absolutely beautiful. Congratulations. You have brought sunshine into my cloudy day.
Lynne
0 -
Deanna, I'll continue to pray Faslodex and Ibrance are just what's needed to get you stable and feeling great again.
I love new life coming into the world, congratulations Charlotte.
Patty, welcome back. I hope you start feeling better but more importantly, hope you understand how many friends you have rooting for you.
Have a great weekend all -
Amy
0 -
Congratulations NYCchutzpah! Little Leah is beautiful. Thank you for sharing this cherished time with us.
0
