Bone Mets Thread
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Hi all,
So sad to hear about Wilsie2.
I'm pretty much keeping up with the reading, but have backed off on posting so much. I'm doing well, cold is almost gone.
Can't wait for baby bunny pics!
Romansma - great to see you post!
Annie & Linda - sorry you're not feeling great.
Everyone else (I'm lazy..sorry!) - hope you have a pain free lovely week!
Terre
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Linda, I just noticed the thread you started for Wilsie. It is so sad and every time it happens to another one of these beautiful women my heart hurts. Please dear God, we need a cure!
Terre, thanks for popping in, glad your cold is almost gone. I'm feeling particularly lazy these days too, thinking for me it's the high humidity we're experiencing right now. I also wonder if that took part in my pain flare, get tired of trying to figure it out.
Hugs to all, Annie
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Terre, happy to see that cold is going away. Don't worry about posting - just take care of yourself.
Linda
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Hello Ladies...I have been busy...well and busy...just got back from Oregon Rode trip with my son and bf to drive the coast to Gold Beach..where my other BF lives in a RV park and both her hubby and her self work in the area...small town of 2000...tourist town now...had a great time...Been feeling especially well since I have been put on predizone for my Halaven SE I have gained 10 lbs..I am more active...no ER visits in 2 mths..I have my PET scan coming up on Monday...TM were taken last Tuesday...still on Falazadex and bone booster mthly and Halaven 8th day IV and 8 days off..I have never felt better...I don't feel sick at all...I have been able to be my regular self ...It's amazing...but it could be like a when your MANIC from Bi polar...I'm thinking that this won't last...but I'm enjoying it while I can...Not thinking about anything negative...focus...and my weight was the main thing...since I was loosing weight 5 lbs weekly...there for a about a mth...I have been reading everyone's post...and again I'm sorry that I don't attend to respond a daily basis...I am trying to enjoy my summer as long as I am feeling so well...I hope you all understand...
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Hello everyone just popping in to say tomorrow is my first treatment with Abraxane first chemo in in five years.
My m is visiting from Mexico and that's distracting me from dwelling on the cancer having gone active.
I have my anti nausea meds can anybody tell me when should I begin taking them? The bottle only says " as needed" every six hours
After treatment we are going to get a family portrait taken and supper at Disney world for the fireworks.
Last time I had chemo in 2019 it didn't slow me down even though I had the " red devil" so hopefully this time will be easy too.
Please any comments will be welcomed I have no one to talk about this.
Aur
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Freebird such an inspiration to see you out enjoying life so much. I have been down about some increase in pain and your post gives me hope and reminds me to live in the moment.
Aur
I am sorry I have no wisdom for you. Just wishing chemo goes well so you can continue to enjoy your mothers visit.
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I try so hard to keep up with this thread!! I love reading all of your posts.
Freebird I love the pics!! Looks like you are having so much fun. We are doing a staycation over here. This little one keeps me on my toes!! When she gets a bit older and is out of her crib I hope to travel more with her.
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Hello everybody... it's been so long since I have posted here and that I am sure you've all forgotten me I am pretty sure this is the fastest moving thread on BCO.... so many new names..(unfortunately, although you have all found a wonderfully supportive group.... )
Freebird -I'm glad I popped in in time to see your pictures. I was reading the June posts and noticed that you were going to the Oregon Coast and then whala...there you are. Beautiful! So glad you are feeling better! You look amazing!
We've been traveling as well, which is part of why I have been away for so long. Took all four teenagers on a trip to Spain and Italy for ten days... then sent all four teenagers home and enjoyed four days by ourselves. Miles and miles of walking and I am happy to report that I had very little pain, although lots of ibuprofen. (and wine. lots of wine... that helped.)
Terre - Happy Belated Birthday .... love that your onc said you'd make it to 60 and you did... I'd be SO happy to get there...
I am hoping to have another PET scan in August. My last one was in February and all clear, but now the insurance company is saying that they won't cover it (the last one) and that going forward, they will only cover CT scans and MRI's... because PET scans are "investigational". I haven't had a bone scan in almost two years.... how often is everyone else getting them? Interesting to read and try to keep up on all of the treatments you all are getting. I am on Herceptin only - every three weeks (although I had a nice break over the winter because my SE's were getting so bad) and Xgeva once a month. Whatever the scan in August is, my anxiety will start to build and build here very shortly.
I'm going to try to keep up with everybody more!
XO
Andrea
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Carla - Whoo hoo! So glad to see you well and happy!
Rseman - what a fantastic photo! And what a beautiful little girl and lovely smiles!
Auroya - no advice, sorry, but I'm sure someone will pop in.
Thanks Andrea and great to see you again. And glad you're travelling and having fun!
Best get back to work.
Hugs to all,
Terre
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So great to log on and see so much good news and great photos! So glad your trip was everything you'd hoped it would be, Carla. And as Terre said, WooHoo to feeling like yourself again! Let's hope & pray you stay that way for a very long time! You look fabulous in the photos!
Rseman, love your photo, too! Your little one is adorable, and a stayvacation makes sense when you live in a beach town!
Andi, I can't imagine taking 4 teenagers to Europe, but good for you! I'll bet you all had a ball! I'm sure I'm not the only one who would love to see a photo if you get a chance.
Aurorya, good luck tomorrow! I'll be thinking of you. Sorry I can't remember if you need to take anti nausea meds preemptively either. Hopefully, if you take them around the time of your infusion you'll be well covered, and I'm sure the chemo nurses will get you started on them if you do need to take them then.
Terre, glad you're back and you're feeling better.
I'm also anxious to see the baby bunnies!
Hi to everyone else, new, old, returning, lurkers -- everyone!
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carla. - looking good. Great to hear from you
Terre - thanks for popping in. Glad to know you are still with us 😀
Hope - good to see you also. Looks like the lbrance is working for you? Hope your family is doing well
Thanks to Whoever let us know chris posted somewhere how she is doing. I've been watching the thread she started re surgery again (I think) but no update there. Was beginning to worry.
I finally got a minute free from company to catch up on y'all. Sorry no notes tonight therefore can't remember any other personal response. We are having a great visit. My sister came in and took control of the household chores and I, for once , just let her. I am not even feeling guilty about it like I normally do. It makes her feel good to do it and it makes my back feel better Not to do it. I am really enjoying all the snuggles_ kisses and hugs from my almost 4 year old great niece. That is s great age. Well I better get to sleep. They were up at like 4am (5am their time ) today. Normal time for them to get up at home for work. Probably why I got 2 naps today. Lol going to post some pics of our visit after they leave and I get s free moment
Hugs all around my dear friends
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Auroya, re anti nausea - my Onc's view is it is harder to stop nausea & vomiting once it starts, than it is to prevent entirely. So take every 6 hours even if you don't think you need it. I took mine for 3 days with each infusion. Check with your nurse but I'm sure starting as you're prepping for the infusion is fine. Good luck!
Such a beautiful & happy photo Rseman!
have a great day everyone
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Good morning all,
Carla - you look fabulous! Enjoy your trip, enjoy your summer! It sure is nice to hear you're feeling good.
Aurora - I have zero experience with chemo but good luck with Abraxane. Glad your Mom is spending time with you.
Rsman - You also look fabulous! And adorable baby. And stayvacation sounds great to me. Living in a beach town - I envy you.
Andrea - Welcome back. Travelling and wine sounds awesome. Bone scans - frequency varies but on average every 4 months. Same with CT scans. I have no Pet scans. Good luck with your scan in August - you still have time for scanxiety to creep in. Try not to dwell on it to soon (easier said than done...)
Patty - Enjoy every minute of time off from chores!
Dune - Hoping and praying your tx went well. How are you?
3-16, Deanna, Karz, Terre and all, have a nice day.
Linda
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and I get scanned between 3 and 5 months. That's about how long each chemo works, that's why we do it that way. Me too, ins won't cover pet any more. What did you say the reason was??
Great vacation pics. I do the same thing when feeling good on a chemo....no stopping me. Most of them I have been good on. A couple kept me down, but for the most part I have been pretty well. Hope that makes you not worry so much about all the treatments out there. They all have there unique side effects, but some are very manageable.
Have a great day everyone
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Wow, went to bed early last night and woke up this morning to a busy thread.
Carla, I am so so happy you checked in and to hear you're feeling so well and having so much fun! You look awesome and glad you were able to put some weight back on. Check in with us soon and tell us more, seeing your post made my day!
Auroaya, best of luck with your chemo, will be sitting there holding your hand in spirit! A friend who had chemo said she took the anti- nausea meds beforehand, very important to do so, she never got sick.
Rseman, what a beautiful picture, your daughter is adorable. We have a beach here called Long Beach as well. How nice it is to live in a beach town!
Andrea, so nice to hear from you! Wow sounds like you've been busy having fun. Being italian I would love to visit Italy, never been. It's great to hear you were able to do all that walking without too much pain. I have a scan in August as well and yep I'm already anxious.
Terre, nice to hear from you! You're back to work so I'm sure you're feeling better.
Patty, sounds like you're having a great time with your sis, I love it when my sister visits and takes over too, she gets things done way quicker than I would.
Hello 3-16-2011, Deanna, Karz72, Linda and Susan and everyone else here. What a busy thread this has been.
Hugs to all, Annie
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On the frequency of scans question... I think it depends a lot on where your TMs are and if you're on a new med. My UCLA onc said she likes to scan at least once a year, but that assumes you've been stable and not having any new pain or other issues. If my TMs are up again this month, I'll need a CT even though my last one was just in March. The one thing I really do wonder about is oncs who automatically scan us every 3 or 4 mos. Not sure I'm onboard with that due to what seems to me like unnecessary radiation -- unless TMs are climbing or it's truly necessary to ascertain if a new med is working.
I will be sending out our contact list tomorrow. If you haven't sent me your info' yet and want to be included, please PM it to me. Of course you can be added later, but that just makes an extra step for me to add and redistribute the list, so I probably won't bring it up again for several months or until a situation merits it.
Hugs and wishes for a pain-free day to all! Deanna
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Annie - were you born in Italy? My parents immigrated to Canada in 1956 (mother Hungarian and father Belgian). I'm the baby of the family and was born in Montreal.
Deanna - thanks again for the contact list.
Saw my blood results this morning. They have never been so good. TMs lowest ever, calcium level at high end of normal but better than it's been in a long time, and kidney function is back to normal this month. I'll take it.
Linda
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Linda😀😀😀Myra
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Great news, Linda! Very happy for you!
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Thank you ladies!
Linda
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At the infusion center getting my first round of Abraxane to kick cancer's a$&. Afterward going to the studio for a family portrait at 6 pm and at 8:30 dinner at a restaurant overlooking Disney world and watch the fire
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Thanks, Deanna. I have sent you my contact info.
I hope everyone is doing well today.
Sharon
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Linda, yay for the good news! Happy dance for you! No I wasn't born in Italy and my parents immigrated to Canada too, I believe in 1950 as well, my dad would have been just 24 years old!
Auroaya, let us know how the infusion goes and have an awesome time tonight!
Deanna, I sent you my contact info, I hope you got it.
Hugs, Annie
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Yes, I did, Annie. Thank you. So far I have 9 -- Patty, Linda, Dee, Terre, Amy, Debbie (Lynwood 1960), Sharon, you and me. I apologize if I didn't acknowledge some of these when I got them.
Sending you strong positive vibes, auroaya! Hope Abraxane kicks cancer's b*tt for you!!!
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I think I missed previous posts about the contact information... that's what I get for staying away so long, but I just sent it to you!
Andrea
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Okay... vacation pictures...
Here's a picture from Rome.... me in the middle with my older son on my right and younger son on my left. Husband to the right... my stepson on the far right and my step daughter on the far left. Whew. Also a picture of me on bike ride through Tuscany. I highly recommend Italy to everyone! Amazing people and culture and such a laid back way of life... I suggested to my husband that if we moved there, possibly I'd be so stress free that my cancer would disappear forever!
XOXO
Andrea
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What wonderful photos, Andrea! Your teenagers all look like great kids! And I totally get what you said about living in Italy. I've had similar thoughts about places I've lived in and/or loved in the past! Thanks for sharing the photos!
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Beautiful pictures, Andrea, and everyone else who posted their photos.
I don't comment on this thread often though I read it regularly. I can't comment on what people have said but there is one thing I want to say. Myra, you said "I failed Femara". No. You didn't. Femara failed YOU. An important distinction. It's not your fault.
My recent PET showed progression. I was not only upset about the progression but confused since my TMs had gone down markedly on Navelbine, and the pain that I was having in my hips (not too bad; was controlled by ibuprofen) was gone. I went in to see my onc on Sunday to go over the results. A blood test done AFTER the PET (with results that just came in) showed my markers starting to go up again. I asked the onc if the tumors in the hips were still there since I knew there was progression in the bones. He told me the tumors were still there but the bones were more sclerotic - in other words, harder. The Zometa is working.
Starting Doxil in the morning. For some reason I'm more nervous about this tx change than about other changes in the past.
Leah
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Just popping in to see how you're all doing. Great to see pix & hear sisters are feeling well & traveling (my fun trips are all the way from western Wa to eastern Wa, to our home in wheat country & I'm starting to get real tired of it!). I am, however, partial to the darling little sweet pea :-)
Leah...hoping the Doxil works its magic. So the pet showed activity before the TM's did...interesting. My ins won't pay for pets only CTs.
Deanna...awesome that you're collecting info on bone mets sisters. I was so saddened, as all were, about not realizing Wilsie & Justjudie were doing so poorly. I haven't been on very much lately, but think, pray, hope all is going well. On a different note...I had diep...worst decision, in hindsight. My previously awesome abs now are a constant pain....sometimes I think liver mets are easy compared to stomach issues w/hernia & diastasis. Don't know if breasts are worth it....but like one sis said....hindsight 20/20...so true.
Take care....my aunt w/bone mets just started faslodex shots after progression on only an AI...I told her there are many on it & doing well. Ps...whoever turned 60....I hit 61 on 7/2...my 3rd bonus bday :-). May we all live we....for a long time!!!!
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Awesome news Linda!
Auroya that sounds like a brilliant way to celebrate the beginning of chemo. & just think you are that much closer to the end.
Lovely pics Andrea - I also love Italy & have another visit on my bucket list - this time with little one. She's done volcanos at school & I've promised her Pompeii :-)
Deanna, hope TMs stay stable or drop & Leah, good luck with the new tx.
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