Bone Mets Thread
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I love your beauty Praline. In fact her name suits her. She looks like a Southern Belle.
Have a great day ladies.
Amy
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Dee sorry your hassling around with your port they asked me yesterday at the hospital if I had one I was like no and no thank you. Though I have heard woman who love the convenience of it. I always wonder about the logistics of it like the shower etc. Not fun.
Milaandra that's bites! Sorry I just had to I know it's an awful situation for you together with your husband being gone. Sounds like you have a good dentist though I'm hoping this can get cleared up so you can put this behind you. Everything is so much more complicated for us folks eh? If I was your neighbor I would be there for you for sure.
Patty and Christine so it's Easter this weekend I wish my children were smaller so I could do the egg thing again. What are your guys plans?
Linda your dog is so cute those ears! She looks very well cared for such a pretty animal.
So I have been accepted into the clinical trial finally wow what a hassle. So now hippy Wendy doesn't think she wants the trial anymore ( my ones going to kill me) after ready the results so far it nots good. One woman died of brain hemorrhage another's lung collages. So the study is fulvestrant or Faslodex what ever side you are of the 49 parallel determines the name I guess together with ribociclib. The ribociclib is the trial drug either I get a placebo or the drug. I have found nothing on line that would make me want to take this. If any of you have any info regarding this I would really appreciate it . Creates liver malfunction , lower red blood counts and white blood counts and platelet counts. Besides a ton of other stuff.
Have a lovely day ladies and take care of yourselves.
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Hi ladies,
I really need to catch up but I've given up for now.
I had a really bad reaction to my Lupron, I was sweating and shivering for a whole day bc it was a 3 month dose instead of a regular dosage bc my onc can't get my estradiol levels down. She said this is the last effort, we may have to add tamoxifen to bring it down (to keep me on Faslodex and Ibrance). I can tell you I won't be doing that dosage again, it was too much for me. I felt like I was going crazy. That day I also went crazy w pain meds and took too much. I have been having a hard time managing my pain meds and taking too much and in a fog until about 2 days ago. I'm feeling much better and trying hard to take the pain meds when I really feel I need them. The subsys is for breakthrouhg pain only and I'm prescribed 5 per day. Since I went crazy, I really only have enough now for 3-4 a day for the rest of the month and I've been ok on 4 since yesterday. I've taken 2 so far today, so I have room for 2 more if needed. I am meeting w pain management on April 4th. Also I have been itching like crazy and my psoriasis is out of control. I have a dermatology appointment April 1. Does anybody have any advice to help? It's really bad. Epsom salts don't help, lotion doesn't help for long.
I know it's usually about me on these threads, but maybe once my life calms down I can offer more support to you guys.
Back to work now...
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Wendy, I can't comment on ribociclib, which I believe is a "sister drug" to palbociclib (Ibrance), but may have things about it that are unique from palbo. The one thing I can tell you, after being on Ibrance (palbo) for awhile (about to start my 7th cycle, I think), I have observed that women either do really well on it, with any SEs they have improving with subsequent cycles... or, they have issues from the get-go that don't resolve and get worse -- low counts that don't come up, high liver counts that remain high, digestive issues that other meds don't help. In those cases, the women usually come off the drug within a month or two or three at the most, after usually going down to a 100 mg. dose and then a 75 mg. dose without improvement in their SEs.
The other thing I can tell you is that many women do very, very well and always have on Faslodex alone. My local onc has women who have been on it 3 or 4 years or more, without ever adding Ibrance, as have some women here on BCO. So it seems to me you are in a very advantageous situation, and if you were to start having nasty SEs (which many of us haven't), you can simply stop the ribociclib and stay on the Faslodex. That's just my take on it... Deanna
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cristina. Relax. We love supporting you. My insurance and mo allows me to fill my pain meds 1 week in advance to make sure if they have to order it, it will be ready. Maybe this will help you not run out of limit yourself so much as not to control the pain. Do you think pain mgmt will increase doseage\ frequency or start you on something new ?
Wendy. Once the stitches dissolve you can shower, bath, swim whatever with no harm to port.
Home health accessed my port for the first time today. I was nervous. She didn't bring anything to numb it said she could next time if it was to painful. It was easy peasey !!!! She did cover it with gauze and said to keep it on 24 hours to keep infection from Port where they accessed it.
Ally. Interesting komen dinner. I wondered what would happen.
Lindae. Praline is so adorable. Love those eyes.
Dee. Leaving the needle in sounds miserable. Live and learn right ? Good thing about bco we can learn from each other's experiences without having to gobtgrubit.
Amy, mila, lindalou and all others I missed. Big hugs
Darn. I am having another horrible back pain day. 2 in a row on spring break boo. Home health said maybe the weather. It's been raining and a cold front as brought our temps way down. I am hoping just overdid it with no nap and alot more moving around since dss have been home. Hate to think I will be this miserable every time it rains . next couple months it rains alot here. Counselor comes by for first real visit today. Last week was history, paperwork stuff. Hoping it helps all of us. I think it will be beneficial to talk to a stranger. Someone who we won't worry about hurting their feelings. Hoping dss open up and talk. Today counselor is just gonna get to know dss better by playing games or basketball or PlayStation games. Really whatever dss want. Keeping fingers crossed they can connect. Cancer sure is messy
Hugs all around
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A quick hello to all and welcome to maryk. Mary so sorry you are dealing with all of this. So glad you have found the site and kind women of bco bone mets thread. The women here have ment so much to me. I am sure they will share there wisdom and support with you.
My recent mri was clear hooray. MO continues to work with me on figuring out new femour pain. Next month will be 6 months on afinitor so maybe pet scan time. Anyone else feel like they are Blue Shield/Blue Cross's most expensive customer.
My son's 15th birthday today. A happy day. Enjoy the spring everyone.
Mary
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mary. So what will y'all do for your DS bday ? Hooray !!!! Clear MRI !!!
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Home from work and watched Mike's plane land safely. Thank goodness the freezing rain didn't cause any problems! Now it's a shuttle bus to Union Station, then the train to within 15 of his parent's house, so it should all be good.
Cjanet, my ezcema has been bad and I have a big itchy red splotch in my good armpit (the one that still sweats) For my face I've simplified my routine, washing off makeup with almond oil and moisturising with raw organic Shea butter whipped with some almond oil. It has helped quite a bit, but hasn't fixed it. I don't know if it's stress or medication toxins or something else entirely. Years ago a dermatologist told me to use unscented dove, and only where I really need it.
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birthday celebratation is having pizza with his best friend. An 8year tradition.
Mary
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thanks a lot Andrea for the information about methodone, my onco prescribed me tramadol which is very hard on me and my liver hurts so i stopped taking it (it did not do a little to control pain either). will taking methodone in low doses be OK with liver mets?
waving hi to another Mary! thanks a lot. these brave women have switched on my fight mode (was a potato when i joined BCO)
Much love and hugs
Happy spring
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LindaE, I don't know how you manage! I used to love living alone, but now I can picture Mike coming home to find me half eaten by the cats! LOL! I have huge respect for your strength and courage
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Hello ladies,
I've been reading, but not writing for a bit. Think of you all throughout the day. I've been exercising and trying to eat right and working through the list of things that I want to accomplish. When I sit still, nothing hurts... which is good for writing :-)
Interesting Komen dinner companion. Holy Cow! Is there a prize for insensitivity? Pfizer is currently recruiting new "ambassadors." This makes it less likely that I would want to be involved.
Welcome Mary K and Andrea...sorry you have to join us, but there is so much help here...it makes things better because someone always has good answers to questions.
Linda - your cocker is beautiful! It must be hard to go through this on your own. I know this group is virtual, but it has honestly been so much support in comparison to friends and neighbors who may or may not be able to deal with the topic. Quebec is a bit of a drive, but you know we would get there for you!
Milaandra - glad your DH is back. Hope you can find someone to help with that tooth sooner rather than later! Do you ever think of returning to North America where you have more of a network? Scotland would be even more awesome with some good friends nearby.
Dee and Patty - ahhh...the port. It's one of those things I dread and it will undoubtedly be part of my future. There are so many things that have to become "normal" with cancer. Hang in there.
Patty - I'm sure you have tried this, but treasure hunts are not much work for me and the kids seem to like them. The prize could be a video game competition or something equally non-energy intensive. I actually hooked up some video games to learn so that when being active isn't possible we will still have some activity to do together that they enjoy. I did hear about a new grown up variation on the Easter Egg hunt today. Put some Easter grass in an IPA six pack and hide their favorite bottles for the grown up kids to find. Someone suggest Ensure for the Seniors in the family, but maybe those small airplane bottles would be better...just thinking out loud.
Cristina - Hang in there! Hoping you get to a stable and less intense period soon! You must be exhausted.
Mary - Great news on the MRI!!!
To everyone I missed...sending hugs.
Of course it is time for a snowstorm...it's an Easter tradition.
Hope it is a wonderful and pain free weekend for those on the message boards! Off to the pharmacy to pick up some anti-anxiety meds to help with sleep. Six months next week and I feel some days like time is speeding up.
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Oh DH isn't back, that was his flight TO Canada that landed safely. He's away for a week.
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Wecome Mary!
Did anyone mention Claritin to you before you get the Neulasta? I remember horrible pain from that! I am relatively young too, though not as young as you, I've got a good 10 years on you at 39 y/o but have 2 young kids, ages 4 and 7. I will just get them a few little gifts for Easter. Maybe plastic egg hunt with jelly beans and chocolate inside. We are going to Philadelphia that day so we will likely leave after getting up and just hang out in Philadelphia. Milaandra, I wish you had more support. That makes me sad. Not sure tho what you mean by "ethnic" except does it mean they don't speak English so they really can't help? Wishing you an uneventful week without your hubby.
Gotta let my son watch his Octonauts on the computer so gotta go
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Milaandra- Oops...glad he made it! Hoping things stay stable for you this week!
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Hi all!
I should have been clearer about my port, I love, love, love my port, it has been the saving grace for me, getting all my labs, infusions & contrasts through it. But I let them keep it accessed with the needle & the tube with the clamp & all on it, all taped down, but it was still this huge thing on my chest. It's gone now, it saved me about 30 minutes on getting my infusion today. But I won't do that again unless I need it the next day.
Mary, congrats on the results of your mri! yay!
Cristina, I don't have any advice for you, but glad to see you ((hugs)) Same to you Patty, wish you were feeling better, but glad you not in the hospital.
Wendy, I have no advice for you about the trial, but please let us know how it's going if you decide to do it.
Lynne, How is your DH doing? I think I've missed an update or two.
Milaandra, fingers crossed you'll be ok, I hate staying alone too!
Linda, Praline looks beautiful, I can't wait to see her in person!
Lindalou, good to see you, thanks for checking up on me all the time, I really appreciate it.
I'm editing this post because I've forgotten too many of you on here. I spent half the night last night worrying about who I missed. So just to say sorry if I didn't put your name down, but I love everyone on the thread, you are such a help. cheers, Dee
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Cjanet, no, it's not a language barrier, but a cultural one. It's a group who are very family oriented, very traditional and guided by their religious doctrine. Which I respect, and in fact, the traditional values make nice quiet neighbours once the kids are asleep (except for two festivals a year when the toy horns go all night). We smile and greet each other, but there are no invitations for coffee and a good long chat.
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Good morning all,
Wendy - I can understand your worries about the clinical trial. We will support you, whatever "the hippy" Wendy decides LOL. Tough decisions we have to make.
Patty - I'm sure it will be so much easier to talk with a counsellor. Glad to see home health care is good but darn on your pain.
Cjanet - we are always here for you.
Mary - YAY on MRI! Congrats.
Milaandra - glad DH landed safe and sound. The week will fly by quickly and don't forget, you have all these virtual friends here.
I like living alone and I'm so thankful for BCO! I also have some good friends that live 10 minutes away that I can reach out to anytime. I try not to think too much about how I will manage when the going gets tough. Glad you all liked Praline's pic, but she's been shaking from cold since she got that cut, poor thing.
Happy Easter and a good week-end to all with no or less pain. Sorry, I don't have Dee's memory to name you all.
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Thanks Linda and thank you Deana you are always a real wealth of good information I looked everywhere on line to find something and I could not find much so thanks again. This all gives me some ammunition for my next oncologist appointment. I wish a sun filled warmer weekend for all with of course no or limited pain. Happy Easter
Wendy
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Mary-so happy your MRI was clear! And I hope your DS had a great birthday celebration!!
LInda- Praline is a beauty. I miss having a dog!!!!
The strangest thing happened to me. I went to get something under my desk and heard a popping sound by my right lower ribs. Now my right side really hurts. I hope I just sprained something but Monday AM I'm going for an X-ray. It even hurts when I stand up straight.
Has anyone had a broken bone due to bone mets? How's the healing from this?
Babs
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I knew there was a couple of people I forgot, sorry about that, Babs! I have no advice for you about your side, I hope it's nothing serious. Monday is a long ways off when you're hurting, do you have something to take for the pain? Rest & alternating cool & heat may help.
cheers, Dee
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Babs, that popping noise you described is concerning. Do you know if you have bone mets in the ribs on that side? Can you breath deeply? I know we all hate the thought of going to an ER, but if the pain is severe enough to prevent you from taking deep breaths, it would probably be prudent to at least get an x-ray at an Urgent Care facility.
Linda, I love the photo of Praline! She's so beautiful, and she looks like such a sweet dog.
Mary, so happy to hear your MRI was clear! YaY!!! And yes, with Ibrance costing $11,600 per month... plus Faslodex and Xgeva each $2,500... the costs are staggering! I once mistakenly called my insurance company's mail order pharmacy number instead of the specialty pharmacy. I realized my error when the woman I was talking to asked me in an incredulous tone if I was aware that the drug I was calling about (Ibrance) would be $35,000 for a three months' supply! It's ridiculous!
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Babs, Sorry you are having rib pain and yes you should go to the ER if pain is bad and to rule out any puncture etc. I have had a fracture in my upper rib 3 from mets and subsequent radiation. I was told by an ortho that there is little they can do but to let it heal ( it takes time) and to take pain meds as well. Depending on the location they sometimes tape but not usually. If you have a recliner or adjustable bed try sleeping in that. I alternated heat and cold for awhile, but wait to see a physician, because sometimes they like only ice at first to reduce any swelling around the tissues. Keep us posted, and hope you get some relief. Do you have mets on that side?
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Dee, Deanna and Linda Yes, I do have bone mets on my rt side ribs. I'm thinking it might just be a bad sprain. I'm able to breathe deeply and the pain is bearable unless I move a certain way. I don't want to go to the ER and wait hours since they probably won't do anything anyway. I'm taking it easy and taking some pain meds until Monday AM. Ugh! It's always something!!!! Thanks for your concern and your input.
Babs
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Babs I had the exact same thing back in January, I figured I broke a rib didn't hurt to breathe but moving and sleeping on my right side was uncomfortable. Also reaching for things that required raising my arms hurt. Then I figured okay this is the beginning of my bone met experience . Told my oncologist about it and she said yes I should get it radiated that it was probably bone met pain. Then while waiting for the radiation appointment it went away. Asked my onc about it and she said oh it was probably muscular in nature. The whole thing took about a month from beginning to end. Just proved to me how little my doctor actually knows...
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Wendy. You made me laugh!!! Thanks!! I'm hoping it's only muscular!
Babs
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Okay, I am five pages behind. There is no way I will catch up. Welcome to all the newbies that have joined us. I know you have found some wonderful supportive women here.
Babs, I hope your rib pains turns out to be muscular. I know that even that is painful, but at least it will improve with time.
Wendy, Have you made a decision about the clinical trial? I know you will make the decision that is best for you and will not second guess yourself since it is not productive to do so. I know it can be frustrating when things move as slowly as they have for you lately.
Linda, I did see the new picture of Praline. I just want to give her a big hug.
Dee, My DH is better, thank you. They replaced his gallbladder drain again a week ago yesterday, then the surgeon decided that it was finally safe to remove the gallbladder. Dh's blood test all looked good, the infection was under control for the moment, and DH was finally healthy enough for surgery. Woohoo! That gallbladder was causing so many issues with blockages in the drain and infections that caused sepsis and nausea/vomiting. It was responsible for many of the 62 hosptital days during the past three months. Since my husband had eaten lunch on Saturday, the surgery couldn't be done until 9:00 p.m. It was nice and quiet in the surgical unit. By 11:45 he was in recovery, and things have been going well since. The gallbladder had several perforations in it, was stuck to the liver, and was nothing but a troublemaker. Thank goodness it is gone. He should have the stent removed from his bile duct in about 6 weeks, then we just have the onc appointments ahead of us to monitor for a recurrence of his kidney cancer. Those we can deal with. We feel blessed that DH made it through all the complications he had. DH and I are making plans for the future. Yay. Life goes on in spite of everything.
I finally got out to rake one of my gardens today. It felt so good. Things are beginning to grow. Spring really is here.
Chelle and Valorie and Carol, how are you? I haven't seen any posts from you lately. Hello to everyone that I didn't address individually. I think of all you all the time.
Happy Easter everyone. We plan to have a quiet dinner tomorrow. My dil has offered to cook, and I accepted the offer. I have never done that before! Two of my ds's and their wives will be here along with two of my grandchildren. It will be so nice to have a normal holiday at home.
Love and best wishes to all of you.
Lynne
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Ltnne so happy DH had his surgery and is doing well
Enjoy your time with the family this Easter. I'm glad your DIL is so helpful!!! Lucky you!
Babs
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Lol. I just found out dil is sick. She hopes she'll be better tomorrow. If not, my dssaid that he will cook. I will let you know what happens. We might be eating pb&j.
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Lynne. Pb& j is great if you're with your family!!! But I hope it doesn't come to that!!!
Bab
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