Bone Mets Thread
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terre boo. Not a good wa to spend your holiday. Hope tomorrow and Wed are relaxing.
Welcome Karen
Deanna. Hoping the marginal increase on tm's is nothing to be concerned about. My tm's have never been accurate and mo hasn't even ordered them lately. I know yours have been more reliable. Believing they will e back down next test. Which is when?
I had to reschedule mo appt 3 times due to icy weather. Afraid a fall would be life changing for me. So a couple weeks behind on Falsodex \ exgeva. Haven't really thought about it. My appt is Fri. Mo had radiology office call to set up appt for radiation after my last mo appt but he didn't mention it to me. So I told them I'll call them after I talk to mo. Not really wanting to do radiation. Certainly not wanting to make that daily trip. Been so exhausted can't imagine the daily trip. Boo. Will rely on a good friend to drive me whenever she can. Its a good chance to catch up with bff. I feel so bad that I have to cancel so many plans with her do to vomiting or pain. Thankfully she gets it and just reschedules. I met my bff probably 12 years ago. Dh and I volunteered in the youth group at church. I ad junior high and had one of her dd. Dh vokunterred in highschool age and had her other dd. She was dx with BC during this time and we got to be very close to their dd and then. Then about 6months later I was dx. She was a huge support for me. Later dh and I adopted two children and they were around alot. Their dd were grown and they decided to adopt 2 children same age as ours. Been bffs every since. I think wstching the whole stage IV thing with me scares the hell out of her. But she still is here. Still lisytens to every thing i have to say . she is s licensed counselor and her dh is s psychologist. So free mental health care lol. Love her so much. OK not sure how i got way off subject. Oh. Yeah. My thought for today was thankfulness!
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Hello, thought that I should check in and say GO BRONCOS!!!! We played an amazing game against a great team. I have missed you all.
patty- I think that you must be a wonderful wife and mother! You are always including your sons and Dh in nearly every post. They are obviously the apple of your eye.
Mom- good grief! When are you going to have a little break? You really need one. I worry about you wearing down. You really need to think about yourself once in a while.
Terre- what an adorable creature!! I would love to have one to snuggle with! New Zealand looks so beautiful
Lynn and Rachel- I'm not too sorry to admit that it was awesome watching Brady lose for once! I'm really hoping Peyton can get a ring this time around. I'm sure that he will be retiring after this season.
Hockey, love hockey too! Avalanche of course!!
Although I had a great scan in December, I still feel scared sometimes. Just have a really hard time wrapping my head around stage IV dx. No one around me understands how I feel. It's just overwhelming sometimes. I'm the chicken shit that would still be scared, even if I were considered NED. It is always coming back to haunt me. Ugh! Will I ever be able to shed this heavy cancer weight that I carry around? I have been dx for four and a half months now. Not a long time I know. But it seems like years. This just sucks, and I'm doing really well with it. Guess I need to grow a thicker skin.
Carol,Annie,Myra,Deanna,Lindae,Dee,Lindalou, purple,squirrel, Nikki's, and anyone else that I might have forgotten. Lots of love and warm hugs! ****GO BRONCOS***
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Chelle - concentrate on the Broncos..every time you get a cancer thought, switch it to "Ring for Manning! Ring for Manning!"
The cancer is always there, but mine has become less like the elephant in the room and more like the ghost in the room if that makes any sense. At four and a half months, I hadn't gotten my act/brain together enough to be on these boards, so you're doing great! It does get easier (emotionally) as time goes on. Becomes a smaller part of who you are with time.Sending hugs,
Terre
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Karen, a warm welcome to you. NED/remission/stable is a great place to be!
Regarding Xgeva, first 2 months I had a lot of fatigue, pain and some nausea but no metallic taste. Third tx was a walk in the park but with the last one, slept the most part the day after and had sharp pains here and there for 2-3 days.
Deanna - That's a very minor change in TMs. Your pain increase can certainly be caused by Xgeva. Romeo is not a rescue dog but previous owners could not take care of it anymore. He's 3 yrs old and gets along great with Praline. It was dog therapy over the week-end, haven't laughed this much in a while.
Patty - you are a wise lady! and free psychological care... oh yes!
Chelle - I was a basket case at 4 1/2 months down the road. I still am once in a while LOL, but as Terre says, you're doing fine. Give yourself time, it gets easier. And you're right, people around us don't always get it. That's why we're here for you. Big hugs to you.
Has anyone heard from Myra?
Wishing you all a great week and sending hugs all around.
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Good morning everyone.
Karen, welcome to the bone mets thread. Congratulations for your NED/remission status. I hope to join you in that status some day. As others have said, there are many wise, supportive women on this thread.
Chelle and Terre, by the time the Super Bowl comes, I will be finished mourning the Pats' loss, and I will cheer on the Broncos. Of course I cannot become a full-fledged, long-term Broncos fan or my family would disown me, but I can be a supporter for the Super Bowl. ( One of my sons is a Pats season ticket holder.) Yesterday's game was a great one to watch. Sob, sob.
Deanna, I suspect that your very slight rise in TMs is of no significance. Hopefully, next time they are checked they wil be down. It is easy to worry about little things when we are stage IV, but you seem to be doing well, so try to think positively.
I have been experiencing some pain in one of my legs as well as my back around to my rib. At first I thought it was from overdoing it after doing so little for a month, but now I am beginning to wonder. I do have mets in the femur and tibia (in both legs) as well in my back and ribs. I hope it is just muscle strain or healing or just my wild imagination or just aging. It is the first time I have had any pain for many months. I am giving it the three week test (is that your suggestion, Deanna?), before I do any serious worrying about it. I will have blood tests at the end of next week when I go for my Zometa infusion, and I will check those results to see if anything looks amiss. In the meantime, Tylenol takes the edge off so I can sleep at night.
I am still wondering about Myra and Valerie (Kendrasue).
Lynn
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purplegirl. - hope you are still hanging with us. This tgread can be hard to keep up because so many close relationships but don't try to keep up. Just jump in when you relate to. something.
First day dss back to school and I've got errands to do. Boo. Was hoping to just relax. I know ALL day ?? But yeah I need a long day break. Oh well. Will try to hurry back home and back in my jammies. Curl up in wastm blanket on couch for nap.
Hugs to all.
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Deanna- I don't get the metallic taste in my mouth from Xgeva but after a day or two after getting the shot my ribs and back hurt enough to make me a worried mess. Guess what? It went away in about 10 days!! So I think it was something to do with the Xgeva helping out in a painful way!
I hope everyone has a nice week. I am going to work on keeping busy, I find that too much down time really can depress me.
Carol
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Chelle- Concentrate on the great scan and how GREAT you are doing with just tamoxifan - If you didn't worry about it you would not be normal. Keep busy is the key! (Carol needs to practice what she preaches) Hugs.
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good morning, thank you all for your support. You are all absolutely right. I need to either keep busy or concentrate on the good stuff. There are so many blessings in my life. You ladies are some of them, that's for sure! I am a project person, love decorating. I found a bunch of very old picture frames, different shapes and sizes. I'm going to prime and paint each one the same color ( off white) and hang them on the wall going up the stairs. Then inside, where a picture used to be, I will hang random things. Like a wreath or an old key ect. Should keep me busy for a while. When I have created my masterpiece, I will take pics. I'm running out of empty walls! Thank god spring will be here soon. I have some major plans in the garden! I'm a bit of a spaz! Love to all of you! Thank you Lynn for supporting our team for the Super Bowl! All,of us really do appreciate it! Love Chelle.
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Hello ladies,
Welcome Karen! This group is amazing...you'll receive lots of good information here
Haven't heard from Milaandra for a while either...Hope you and Myra and Kendra are doing okay!! We would like to offer encouragement and support regardless of which way the wind is blowing!
Because I joined a while after after Holley Kitchen did, and I know she meant so much to those on this board, I went back to see her video yesterday and remembered seeing it before my dx. Her short time with us after her dx was a shock...
The reason I bring it up is that she was helping MBC gain momentum as far as recognition and research. Does anyone know if someone has picked up the flag in her absence? Any recommendations on whether continuing to push is worthwhile or how we might do that? I know you all through this site, but my guess is that your pre-MBC stories would reveal some amazing stories of women around the world who have contributed a great deal to our communities in addition to showing exceptional skills as parents, wives, siblings and friends :-)
I wonder if "someone" would be interested in some of these stories...
What ideas have you all had?
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Chelle, have you been on the thread Terre started, Tips For Fighting The Dark Clouds? It's got some really good suggestions. Here's a link: https://community.breastcancer.org/forum/8/topics/...
Also, don't minimize what PTSD can do to us. A book I found really helpful -- although it was before my re-dx, when I felt like I was kind of in limbo after surgeries, chemo & rads -- was BACK TO LIFE, Getting Past Your Past with Resilience, Strength, and Optimism, by Alicia Salzer, M.D. I just looked it up and see that Elizabeth Edwards was quoted in it, which may or may not be helpful in our situations. But it truly did help me back then, and might be worth looking into because it focuses on resilience. Here's more info: http://aliciasalzer.com/back-to-life-book.html
I actually think your picture frame project is a good sign! I remember at one point wondering when I would ever care again about "normal" things, like decorating or entertaining or shopping. So the fact that you're taking on a decorating project and looking forward to garden projects sounds like a very good sign to me!
Patty, I can't imagine a more understanding friend than a counselor who has also been through some your greatest challenges! That's amazing! About having to skip a couple of weeks w/Faslodex & Ibrance...when that happens, I try to tell myself and believe that it's all working out for the best. Hopefully, your body will respond great after its little break. And as far RT... I don't remember exactly why it's been recommended for you this time, but if something is telling you you don't want to do it or not to do it, maybe you need to listen to that little voice? Maybe you don't need it???
Lynn, I got that three week rule from a psychologist @ UCLA, and it's always worked for me. Even my worst non-mbc issues always seem to go away before the 3 weeks is up, even if it takes 20 days, which it once did. Hoping it works for you this time!
I am feeling so much better today. Rib and back pain seems to be easing. Still have that metallic taste, but not as bad.
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Iwrite - that's a great idea. I keep thinking that the New Zealand Stage IV people need to do a video that basically shows our faces, and has us saying our names and "I Matter" or "My life matters". Trying to get Pharma to fund meds - it's insane here. Faslodex isn't funded. That's not a new drug, for heaven's sake! But it's not funded. Lots of the "standard" treatments overseas aren't funded here so you're looking at thousands of dollars a month or trying to find an overseas trial. There's a NZ organisation that's pushing for Stage IV funding, awareness, and medications (and research). It's just getting started, http://karenlouisa.org.nz/about-us/
But yes...we do need someone to pick up what Holley started and keep the ball rolling.
Deanna - glad you feel better. That sounds like a great book - will check it out. Several of the people on the Stage IV New Zealand facebook page are saying that they have lost their spark and sparkle and can't laugh anymore. So I will suggest the book for them as well.
Purple and other newbies - what Patty said! Just hop in and don't feel like we're excluding you. Can't speak for everyone, but my brain only holds so much info, so I miss people all the time.
Lynn - sorry you're sore; hoping it gets better soon. I'm having a bad spine day for some reason, so I mark it on the calendar and do the three week rule.
Chelle - picture frames sounds amazing!
Sounds like a busy day, Patty! Jammies after errands sound like bliss.
Sending hugs to all!
Terre
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Kathryn,
It would be wonderful to continue Holley's push to educate the world about MBC. She gave too much of herself to just let it go. I don't know how to begin such a project. I do remember a suggestion made by someone soon after I joined bco. It was probably someone on this thread, but I do not recall who. They suggested putting up a billboard with pictures of 40,000 people with appropriate catchy phase informing everyone that more than 40,000 people will die of MBC this year and that we need to find a cure. We would have to include appropriate info on donating to causes that are researching a cure. Maybe there could be picture of an empty stadium saying that the people who died from MBC last year would fill every seat in the stadium and that the same number of people will die this year and every year unless something is done to find a cure. Maybe those things could be done on social media. Your idea of highlighting individuals is a great one because it puts a face to the disease. Every person with MBC has a story. We all had lives before MBC and continue to have them now. Some of us had ordinary lives and some have extraordinary ones, but each is important to our loved ones and the world. We should include people of all ages and from all areas of the world to show the true scope of mbc. Maybe post to YouTube? Maybe everyone here could send link to 10 or 20 people and tell them to pass it on. Maybe we send Link or stories to Robin Roberts or Ellen Degeneres or other talk show people. Maybe even presidential candidates. I had many invitations to meet with Hillary and Bernie during campaign here in NH. I was unable to attend due to DH hospitalization, but would have brought up mbc if given the opportunity.
iPad slow..took long type to type this...hope others already sent better ideas.
Lynne
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Iwrite, I was relieved to see that Myra has posted elsewhere on BCO within the past few days. I think it was the Xeloda thread. Not sure about Kendra Sue. I hope she'll check in.
As far as taking up Holley's work, there are several individuals and organizations who continue to spread her mbc message. Although it will be next to impossible to replace Holley's rare spirit and ability to connect with people, friends on her public FB page have just reopened orders for the #Lifer t-shirts. https://www.facebook.com/HolleyKitchenCancerLifer/...
There's also this organization http://www.metavivor.org/ that strongly advocates for more mets research. They also have a FB page: https://www.facebook.com/metavivor/?fref=ts
But, yes, we absolutely need to keep the pressure on anyway we can to get more funds going to mbc research, and the article or book you've alluded to sounds like a wonderful addition to that effort.
Speaking of sharing our stories, I saw a post this morning on the Ibrance FB page mentioning The Snow Companies (in this case looking for Ibrance "Ambassadors"), and when I looked them up, it looks like they specialize in that sort of thing -- medical storytelling. https://snow-companies.com/en/home/ Thought that link might interest you, lwrite.
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Purple, welcome! I always tell newbies that you will learn more here then any doctor could ever tell you
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Dlb, how do I find the Ibrance group on facebook? Was unable to find it
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Lynwood, here's a link: https://www.facebook.com/groups/744174808937047/
It's under CDK 4/6 Inhibitor (not Ibrance). It's a closed group. I'm not an administrator, or I would add you, but just ask to join.
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Thanks so much! I asked to join and it says pending. Hopefully can get in, the more information and tips the better!
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Deanna and Lynnwood- I have asked to join too and it's been pending for a long time. I just sent the moderators a message.
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Thanks Lovesmaltese! Hope they let us in! I'm very computer challenged so not sure how to send them a message.
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I remember it took a few days. The page admin may not check in every day. I'm sure when she sees your message, she'll immediately approve you and Lynnwood both.
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This is my lilac tree in spring 2015.I have been experiencing new pain in my left S.I. joint and sciatic nerve with the added joy
of incontinence for the last few weeks. Went to chiropractor twice, but it didn't help. Saw P.A. at onc's office today and they have ordered an MRI, which I'll have on Thursday. P.A. feels it is consistent with degenerative disk disease, since my bone scan in November didn't show anything suspect. Plus, I had a L5/S1 diskectomy in 1992. If that is what the MRI shows I'll have to find a neurosurgeon for a consult., but if it turns out to be related to my mbc, then radiation would be discussed. Just watched Holley Kitchens video for the first time. She did a very good job and I was amazed to see that over 51 million people have also viewed it as well. With all the attention that bc gets I think I just assumed that it included mbc too. Quite an eye opener. So sad that Holley only got 2 years after her re-dx.
It got up to 57 degrees here today with actual sunshine for most of the day. I was so grateful to see the sun. But it'll be back to the gray rainy weather tomorrow. I'm looking forward to when the first flowers start to bloom. Especially my lilac tree.
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Chelle how could you not?? Sometimes...honestly, I just kept thinking I am sure the person in the next curtain in the ER has as many things going on. Auntie, does have pleural efusion, but they are treating her well, hope it will get better really fast. Listen, you have a heart full of warmth, thinking of your family. It's extremely overwhelming. My daughter literally tries to keep busy from the moment she wakes till the moment she goes to sleep. She is always aware of those that needs something, it makes her feel good to help another person in need, and then she could forget her "things". For me the worst is smack in the middle of the night. I keep pills right by the bed, as soon as I see it's not gonna be a tough night, i pop them in.(almost every night). I did come through an interesting post.
Sorry I don't know how to make it small. Hugs
Jazzy this incontinence thing could very well be related to discs problem, I did something to my back yrs back, and the first thing the neurosurgeon said was: call as soon as you loose sensation of having to go to the bathroom or something like that, it's good you have MRI right away, hope you get results asap.
Deanna glad you are feeling better, don't like to see you down.
LindaE how are you doing on the emotional side? It's so great you have these lovely and warm friends, priceless.
Terre boy you are one for the books. it makes us smile! Good for you.
Patty how are you now? You really do your best, you try so hard, amazing.
Wendy where are you? Kendra what's up? Only one post so far on my new thread, for triple+ w mets. Let's see what others are doing in the same situation. I do know that there are so many intricacies that I am not aware of, but i read stuff that ladies post and it's mind boggling. I am always scared I am missing something.
Everyone, GN
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deanna. Glad you are feeling better !!
I did alot of walking today running my errands and my back is hurting like crazy. It feels so good mentally to get out and about and esp to be doing something that will help take some of the load off dh. It physically, it wears me out and outs me down and out 1-2 days. Not a good trade off.
Glad to hear myras is posting somewhere. If you are lurking Myra. We miss ya
Hugs all around
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Good morning all,
Mommal, how sweet of you to ask about me with every thing going on around you! Love the pic! I went through a rough patch emotionally but feeling much better. My furry ball has a lot to do with it but there's nothing like the wonderful support I'm getting here. Sorry you're not getting more input on your thread, will bump it.
Patty - take care of that back today!
Good day and hugs to all.
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Hi ladies, hope all of you are doing great! I'm facing a huge dilemma and I have no idea what to do. I was hoping you can give me your two cents and help me take a decision. I was diagnosed with bone mets in Sept 2014. I had radiotherapy on 4 spots and I was on Xeloda and Navabilne for 9 cycles. I completed the chemotherapy in June 2014. Since Sept 2014 I was trying to find a suitable Palbociclib trial so I can avoid having to go through chemo again but no such trial was available in Canada. The decease has been stable since Sept 2014 and bone spots show improvement. One has completely closed and doesn't appear on scans.
June of 2014 my oncologist told me that my hospital may be having a trial with palbociclib. I started Zoladex and for a few months I was not taking anything else waiting for the trail to start. Sept 2014 I was told that the trial was not going to happen so I started Letrozol. Tumour markers fell down the moment I had my ovaries suppressed with Zoladex and they've been within the norm since then. I'm doing good on Letrozol except for the hot flashes.
Two weeks ago I get a call from my oncologist saying that the Palbociclib trial is on and asking me if I still want to participate. Having read and heard so much about this 'magic' pill I said yes. I was going to be accepted in the trial even thought I took Letrozol for a few months prior and already had chemotherapy but I had to be in true menopause. So, my options were to either have the ovaries removed or to have radiotherapy castration. I've been on the waiting list for hysterectomy for 7 months in Canada and I wasn't guaranteed to have the surgery done in the next two month. I really didn't want to have my pelvic area radiated 5 times to achieve the castration. So, I opted to have the hysterectomy done outside the country.
Yesterday I was at the hospital to sign the trial participation consent. All this time I thought that palbociclib didn't have any side effects and was only killing the cancer cells. Everything that was written about this medication was talking about being the best on the market without having the chemotherapy side effects. Well, when I read the consent I realized that what I had read about this medication was only one side of the coin. There are plenty of side effects which I could easily relate to. I think I've experienced all of the described side effects when I was on Xeloda. I no longer know if I want to feel weak, have stuffy noise, have diarrhea every morning, have hair loss, not being able to exercise and the list goes on…. I signed the content form and I'm supposed to have the first scan next week and start the medication next week. The more I read about the side effects of palbociclib the less I want to participate in this trial. I no longer know if I really need to be on palbo. How is palbo going to help me? I've been pushing for so long to get this medication, I did the impossible to leave the country have the hysterectomy and come back 2 days later just so I can be in this trial.
Has someone with stable bone mets decease taken palbo in this group, is it really worth it? I hope I can get some answers straight from the source.
Thanks
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Modavie, I just finished my 10 th cycle of this drug and all is well! I had some initial fatigue that has improved as time goes on. I work full time as a nurse. No real issues. I think my hair is slightly thinner but it is not noticeable to anyone else, even my hairdresser says she doesn't notice. No nausea, diarrhea, etc. Check out the thread here, many are doing well. Hope this helps in some small way.
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good morning ladies
Hope we are all off to a great pain free, side effect free day.
Hugs
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modavie, welcome! There are some excellent charts and links on the thread Lynwood mentioned, including at least one to the original trial results, which might be helpful for you to look through. I've only been on Palbo (Ibrance) since August 2015, and was not stable prior to starting it, so not in your situation, but I've found it to be a very tolerable drug. Here's a link to that other thread: https://community.breastcancer.org/forum/8/topics/...
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I sent a pm to Valerie (Kendrasue). I will let you know if I hear from her.
Lynne
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