Bone Mets Thread
Comments
-
leggo, if it makes you feel any better, keep in mind that men often let heated exchanges roll of their backs more than we women who tend to play them over and over in our minds and worry about them and not let them go. Even hearing the additional details you just explained, I think he owes you an apology, and I hope he learned something about being more thoughtful with his comments.
I still think your reaction to what he said was spot on, and I hope it's given him much food for thought.
0 -
Thank you, Deanna. Just had to add, thanks for the chuckle....most guys yes, hubby, not so much. That man can hold a grudge like nobody's business.
0 -
Oh this thread is a busy one
Txmom - Congrats on good news and hoping bone scan is the same! I think it will always light up because of the bone damage, but take this with a grain of salt.
Lindalou - OMG those surgeries. Sending you good vibes.
Mommalthetime - I have my infusion in a room by myself. It's not done at the hospital here, it's in a local clinic.
Leggo - Ouch, you had a couple of rough days. I don't think the doc will hold a grudge (unlike hubby ha ha). I once blasted my Onc on the phone because the femur met was missed by radiologist and ended up in emergency surgery. She apologized profusely and we still have a great relationship. I think they understand that we sometimes "lose it". Feel better soon and sending you big hugs.
I'm coughing my lungs out. It got a bit better, thought I was on the mend but no such luck. Now BF is ill. In a way I'm glad he has it (shame on me!), for a while my mind was going towards lung mets. So probably a nasty virus. No energy at all.
Terri - enjoy your vacation.
Sending hugs all around.
0 -
I'll post here rather than in the chemo thread because over there they're more early stages. I went in to my onco office for blood work and a shot and my hemoglobulin keeps going down ( under 7) and my doctor sent orders for a transfusion tomorrow. I've never had one any advise?
Aurora
0 -
Linda, hope you feel better! I've had two sinus infections in the past two months, being sick on top of this stinks!
Aurora, I don't have any personal experience for you but I know it's common to do a blood transfusion when a hemoglobin drops to 7 or below. You will feel much better after, but they'll continue to monitor your H & H.
0 -
Auroaya, I needed 2 blood transfusions when I had my hip replacement, and I would get one again in a heartbeat if I needed it! I was extremely anemic and didn't realize it (this was shortly after I was re-dx'd), and I honestly felt like a new woman after getting transfused! So nothing to be afraid of, and I think you'll feel much better afterwards!
Linda, so sorry you are still feeling so crappy. That cough sounds miserable! Hope you feel much better very soon! And, yes, glad the BF got it if it eases the what-if thoughts!
0 -
must be that time of year as I am also in bed with a respiratory infection. Now on antibiotics. Hope those with similar feel better soon.
Aurora, I had a transfusion yesterday. Have had several and you should feel much more energy in the next few days. As said above they're common, don't hurt, I've never had side effects.
My only advice (apart from keeping hydrated) is to take something to keep you occupied and some food if you don't like hospital food. They take a longtime!
Don't know if England is same as US/Canada but Blood has to be crossmatched first here. that takes 4 hrs (maybe they took blood from you for this yesterday). Then each bag of blood takes 2-4 hrs to infuse. They will want to take first one slowly to monitor for side effects. They always try to make me stay overnight which I hate. I was discharged at 1.30 am this morning much to their annoyance. Good luc
0 -
Good morning all,
Bosco, sorry for infection. Nice to see on this thread. Hope you feel better soon. I'll get this cough checked if it doesn't get better over the next week.
Aurora - If my memory serves me right, you already had the transfusion and hoping it's giving you some stamina.
Weather is cooler today and no humidity - what a blessing. Went for a nice walk this morning, adding a little bit every day. Deanna - are you keeping up with walking? Didn't feel like going but thought about you and my commitment and it feels good. Thanks for motivating me. I needed that little kick in the butt.
Wishing us all a well controlled pain day.
Anybody heard more from Patty? If not, perhaps I will send her another message.
0 -
Bosco and Linda and et al right now I'm sitting on the chair for the transfusion so far so good and thank you for your words of encouragement
0 -
Hi Everyone, thanks for the encourangement and good thoughts. I really appreciate it.
LindaE. the radiologist said any activity in the bone will light up. Even good activity. Sooooo, here are my results, the breast tumor went from 2.7 to 2.2 cm, the 2 lymphnodes are stable-no progression-no regression, the 2 spots on my lumbar vertebrae are too small to worry about and my hip is healing, showing new bone growth and that the current chemotherapy is working. Yay! 2 more treatments of THP for me. Scans in 3 months.
My brother is visiting me from Ladysmith BC for a week so I will be taking a little break as I haven't seen him in 3 years. I will be thinking of everyone. I pray for you everyday. Days without pain and new breakthroughs in medications. XO
0 -
Tmom - Awesome news! Enjoy your brother's visit and celebrate your good news! Just love reading this.
0 -
Good morning everyone!
Txmom, We drive through Ladysmith all the time, such a cute town. Enjoy your time with family & celebrate your good results!
Auroaya, hope the transfusion works for you. It's interesting reading about it, thank you, same to you Bosco, fingers crossed that it works in the long term.
Linda, I hope you're starting to feel better. I had missed the point of your BF getting it & you thinking it might be mets! Glad you were able to share....
Kind thoughts to everyone else here. Patty, I hope you are ok & would check in with us.
It's a beautiful sunny day here, I'm going to go out & play in my garden. Cheers, Dee
0 -
I don't know if stellaratovsky has been a member of the Bone Mets Thread but I do know she is a Stage IV member - she was last seen in mid August. Has anyone heard from her recently. She sounded very distressed last time we heard from her. Just checking.
Amy
0 -
Amy, I don't think Stella has posted in Bone Mets since I started following this thread early in 2014. And when I put her name into the Member List feature just now, nothing came up. I see one or more of her last posts mentioned BCO depressing her, so I hope she's doing okay but just pulled back for that reason. Let us know if you learn anything more.
txmom, great news!!! So happy for you, and I know it will make our brother's visit all the more relaxed and enjoyable.
Linda, yes, still plugging away at trying to walk a bit more each day, thanks to the added motivation of knowing you and others here are too. It's been beastly humid (on top of sizzling hot) here this week, and my right (repaired) hip and femur are hurting like they never have, probably due to the humidity, which is usually non-existent here. But I so need the endorphin boost right now, I'm hanging in there!
PS ~ Just wanted to add a thank you to whoever suggested adding acetaminophen to ibuprofen. I had been using Ibuprofen 600, trying to cut back on the narco pain med and also b'cuz the Ibuprofen just seemed to work pretty well on my shoulder pain. Adding acetaminophen really kicked it up a notch, so that I was relatively pain free last night.
0 -
Nothing like a second opinion to hit you in gut of average survival. Please say some of you have been around more the 2-3 years.
Anyway I really liked her if we can get it approved we will do Fulestrant and Palbociclib also will add in Zometa..and we can do it close to home. .
II is just Tough a month ago I was am almost 3 year survivor. ..now I'm going to die of this.
0 -
Amie, I don't know why some oncs use such discouraging language. I'm so sorry that happened to you, but there are many women on BCO who have been stable and living with mbc for many years.
One problem with stats is, with tx advances, there's no way they can be current. 5-year and 10-years survivors today, did not have the advantage of some of the newer meds we have today. Plus if you go to the research forum here, you will see how many new targeted and immunotherapy drugs are on the horizon -- categories that didn't exist 5+ years ago. In fact, that was something my local onc's PA commented on the other day, as she was trying to read up on Ibrance while I was meeting with her -- that for 30+ years there just weren't any new drugs for metastatic patients, and now there are a slew of new ones.
So try not to dwell on negative comments. There are many reasons to be hopeful that you will do well for a lot of years, during which time more and better txs hopefully will become available. (((Hugs))) Deanna
0 -
Keetmom - there are numerous survivors here who are +5 years; there was a 14 year survivor who popped up on one of the threads a couple of weeks ago. Just remember - there are lies, damn lies, and statistics. Also remember that the statistics take every form of Stage IV into account - from relatively non-aggressive to horrifyingly aggressive. And as Deanna said, they are out of date.
Deanna - glad you got some pain relief!
Auroaya - not had a transfusion, but when I've read here about those who have, it's helped a lot. Hoping it brings you great energy!
Dee - have fun in the garden!
Txmom - hooray for good news! Have fun with your bro.
Leggo - you go girl! Hopefully it gave your MO food for thought.
LindaE & Bosco - hope your flu/cold thing is better. I still think we should be exempt from that kind of stuff because Stage IV is enough to deal with without having the flu on top of it.
Lynnewood - your MO is a jerk. Just sayin.
I have to get it in gear and get to work, so sorry for not addressing everyone. Sending hugs to all.
Terre
0 -
The first thing my onc told me when I was first diagnosed was to stay away from the statistics... she gave me lots of hope that I can easily gain 5-10 years with the new meds they have available. And she even implied the potential for 10+ years if meds continue to improve. I've met many women who are 5+ year survivors and are still going strong. Try to stay positive and hopeful... statistics are only numbers and that doesn't necessarily apply to you because every case is different.
0 -
thanks for the welcome,
Haven't cried today at all! Well it's only two can still happen I guess. I have been pretty down about all this and I don't want to be . I feel like I'm wasting what time I have besides it upsets everyone else. Have any of you ladies discovered Kris Carr. Definitely worth a google her Crazy Sexy Cancer movement is awesome. She is an angel and has helped me a great deal. I always figure information is what we need to share here and anything that helps this night,are has to be good right
0 -
thanks for the welcome,
Haven't cried today at all! Well it's only two can still happen I guess. I have been pretty down about all this and I don't want to be . I feel like I'm wasting what time I have besides it upsets everyone else. Have any of you ladies discovered Kris Carr. Definitely worth a google her Crazy Sexy Cancer movement is awesome. She is an angel and has helped me a great deal. I always figure information is what we need to share here and anything that helps this night,are has to be good right
0 -
keepmom: reading your post sounds just like me two months ago. You have to change that everyday they are discover new things. I have to believe this or I would go nuts. I have three kids and I want to see something of their lives. Check out Kris Carr she gave me hope she has a documentary called Crazy Sexy Cancer. You will get through this your life may be different but you will have a life.
0 -
Amie, I'm 6 years out. Hang on to that. I was told that every person is different. I used to hate to hear that over and over but it is true. I agree with Chattykat....stay away from statistics and the internet right now.
Wendy3, I read Kris Carr's books too. They really are upbeat aren't they and have tons of quick helpers. Cry if you need to but also good that you got a few hours of non-crying.
Dee, hope your day in the garden was nice.
LindaE and Bosco, Hope your virus is better.
Terre, any sheep pictures for us?
Txmom, enjoy your visit with your brother. What could be better?
Auroaya, you should be feeling better quickly from your infusion.
Hi to everyone I've missed....this thread is fast paced!
....l.....I'm armed with Zofran and Oxy and Celebrex and heading to a concert with some of the old Platters and Drifters. Should be fun.
0 -
Amie - stats are outdated. I thought I'd be gone by now and still here, well alive and kicking. It will be 2 years for me in Nov. and feeling much better than prior to dx. I asked my Onc for a prognosis, she said she never answers that question. She has patients doing very well for years and one of 8 years on hormone therapy only so far. New meds are available and new ones in clinical studies. We are not stats. Glad you have a tx plan in place! It will get better.
Wendy - will check that out.
0 -
Keetmom, I'm 5 1/2 years with mets.
Aurora, while I was having my chemo today the lady sitting next to me was getting a transfusion. She was comfortable and calm, and her color improved markedly after she got it. She said she felt less tired, too.
Momallthetime, at my infusion center we don't have private rooms. We sit in comfortable recliners and those who come with us use regular chairs. However, for people who need them, there are a couple of rooms with beds that have standard hospital curtains around them. Veins or ports are accessed privately, and any injections are also given privately.
I got my Doxil tx today, and a scare along with it. I got my TMs from my last test and they jumped over 400 pts! That test was after 1 Doxil (today was #3). I was extremely upset, and fortunately my DH saw the onc in the hall and told him. He sat and talked to me about it for a long time. He told me Doxil is a drug that takes a long time until you see a reaction and 1 tx was meaningless. The only reason he tests for them every time is to see an accurate trend. In other words, if he hadn't tested after the first tx but only after the third and saw at that point that TMs were up about 200 pts we would think the Doxil wasn't working when what it would actually mean they had gone up 400 pts and were then trending down. Logical but scary. I was also going to test out the Claritin-plus-slower-infusion for the Zometa but doc cancelled the Zometa since my creatinine was a bit high. So much for scientific research. I didn't check what the numbers were but I suspect borderline since the nurse was surprised at the cancellation. I think he was being cautious since I've had high creatinine in the past.
I'd like to respond to everyone but reality says no. You guys have set the bar really high! Oh, well, I never was one to hang out in bars.....
Leah
0 -
Hi there!
I have been following this thread for a while.
I am 38 years old. I was diagnosed with BC may 2013. Chemo and radiation went extremely well. I was able to work an continue doing my chores. Until April 2015. I was diagnosed with bone mets. I feel I have been living a lie: so positive thinking everything would be fine.
Hoe do you cope with everyday life? I have a 5 year old son I watch everyday and can't imagine him losing his mom. In particular because my husband's mother and father passed away 2012 and 2013. And my dad 2014. It is just way too much.
Any suggestions for te pain. It is not that intense but constant. I've just had enough of all this.
It helps listening good stories.
Hope you all get well and if you are waiting for results they are good news..
Cyber hugs
0 -
I think your onc is the best to ask about pain meds. How comfortable do you need to be vs. how alert you need to be. There are some non-narcotic pain relievers, patches, that can be helpful in well-defined spots. I just think there is no sense trying to guess at this stuff. It doesn't have to be the end of the world, but it is serious.
0 -
Also, I just got caught up so I can't really leave any more comments. There's a lot of pain in my thighs (where the laptop is) and back. I got marked for radiation today and so, when they are ready they will start irradiating my pubic bone that has been making life tough on me lately. I got my birds back from the vet, and I need to take a wee......again. Love you all.
0 -
Aurora-I hope you are feeling better and strong after your transfusion.
Txmom- congratulations on the good news. I am doing the happy dance for you. Enjoy your time with your brother.
Deanna and Linda - It was really hot here for a few days - in the 90's, so my walking suffered. I only did a mile and a half today before the rains came down. I have to get back on track tomorrow. No more excuses for me!
Keetmom-Welcome. I'm sorry your are having a rough time right night. The first few weeks are the worst, but as others have said, ignore the stats. Numbers are just numbers, and we are people, not statistics. My MO expects me to be around for the long haul, and so do I.
Linda and Bosco. I hope you are feeling better soon.
Dune - I hope you find pain relief.
Wendy- Crying is okay. We all do it sometimes, but I hope you find more reasons to laugh than to cry in the future.
Lindalou- I am jealous. I think the concert will be great. I can't wait to hear all about it.
Leah- Hopefully your TM's will start going down soon. Your MO's explanation makes sense to me.
Cuculi-I agree with others hear who suggested you talk to your MO about pain meds. There are plenty of meds out there, so there is no reason to suffer.
I went to the dentist today so I will be prepared for my first Zometa treatment. My dentist said my teeth and gums are ready. The hygienist told me that the dentist's mother also has stage iv bc, and the dentist is well informed about Zometa and all the other lovely medications. It just makes me so upset that there are so many of us with mbc. We need a cure. I do not want our children or our grandchildren to suffer with this horrible disease!
I am sorry that I have missed people. This thread has been very active lately. I wish everyone a good and pain-free night.
Lynne
0 -
welcome Wendy and Cuculi. Sorry for the reason you're here but glad you found us. Cuculi - I totally get it - the "living a lie" thing. Felt the same way. I was Stage I, early detection, less than 7% chance of recurrence, did everything "right" and am Stage IV. Hang in there, it does get better with time, especially once you have a plan and pain relief. Don't short yourself on the pain relief; it colours your world and not in a good way.
Leah - hanging out in bars. Love it.
Dune - can I just say how much I adore you? Hope you get pain relief soon.
Lindalou - hope to shoot some lambs this weekend (with the camera).
They're out and about and adorable.Hi to everyone else!
Sending hugs,
Terre
0 -
Had to jump in here! I've been a bone metster since 2010, so it's about time… jeez.
Leah, my onc. warned me about that TM jump on Doxil! Glad your doctor was able explain it, and calm you. Completely normal my onc. told me.
And Deanna, I owe you a thank you for your UCLA recommendations. I got a second opinion there in June after my progression, and was so glad I did! I like being able to cross-check treatment plans, etc. with a breast cancer specialist. They were extremely professional.
Best to everyone!
Rose.
0
