Bone Mets Thread
Comments
-
Scans for me next week, too. At least I've graduated to CT's every 12 weeks now rather than every 8 weeks like they were the whole first year of this trial protocol. That was killer. Forget "glowing in the dark." Heck, by now I glow in the shade.
You know what bugs me? My scans are always at the end of my one glorious week off Taxol that I look forward to SO MUCH. So it's always like I finally have a week to feel better and get on a project and have some fun--buuuut scanxiety. Bleh.
I think I'll bake a couple of lemon spice pound cakes and have a tea party. La dee dah dee dahhhhh. Y'all come, too. We can all look at the birdies and make lovely remarks about the weather and if that doesn't suit the purpose we can break out the champagne and tell bawdy jokes.
0 -
It used to bother me a bit when some people make light of bone mets (bone mets are good mets) until I learned more and realized that for some people they can be and for others they aren't so good. If your doctor minimizes your worry, that's a positive sign. It all depends on where they are located and how extensive they are. A met to a rib is one thing, but when your doctor feels the need to tell you the warning signs of imminent spinal cord collapse/compression you don't think bone mets are so good.
My liver mets have been symptom free so far, my brachial plexus and skin mets are manageable so far, but my bone mets strike terror in my heart, especially on days when I wake up with an intense backache that may or may not be just due to growing older, or the time when I had a severe reaction to a med and had no control over my bowels for 8 days straight. My M.O. gets worried if I have a backache that lasts longer than a few days and I need to constantly worry if my spine is about to collapse. My bone mets might not kill me directly, but the thought of being paralyzed and having no control over my bowels until the rest of the cancer kills me, that is even worse to me. I pray that I die before it happens.
0 -
Yes indeed...people need to realize that bone mets are NO FUN!!
I have hip, thigh, spine/back mets, and I walk around like a 90 year old woman, ALWAYS WITH A CANE now. I'm in pain all the time, and I have to use a walker when i venture out. I have to use a special bar just to roll over in bed so I don’t break anything.
Yeah, yeah, yeah, bone mets are the GOOD METS.
EFF ANYBODY WHO THINKS THAT AND HAS THE GALL TO SAY IT!!
ALL cancer mets suck, let's not rank them.
0 -
I concur with what everyone is saying. Each of us has our very own unique experience with MBC. We cannot decide for someone else how they will do or what they will experience. We can only control our own reactions to what happens. Even that is extremely difficult and takes practice and more practice and more practice.
My husband is a music fan and tells me often, Steve Goodman wrote a song that says it is easy to live with someone else's troubles. This is such a true statement and could apply to our current mets discussion. I noted in a different post that there are NO GOOD METS. Further, it is so extremely unfortunate each of us is here dealing with mets. At the same time, it is exceptionally fortunate we have found each other here to share, support, celebrate, comiserate, educate and all the wonderful things we do for each other here. All these wonderful things are independent of the labels and prognoses and predictions the Drs and tests have put on us.
We are here because we want to be here. Perhaps some of us, speaking for myself only, even need to be here for sanity and hope and something/someone to really connect on some level with every day.
Sending cyber-love to all today, V
[Christmas cactus' single flower bloomed this morning...another amazing work of Nature's art...]
0 -
leapfrog, wishing you well for Tuesday x
0 -
Hello ladies! I was diagnosed 6 years ago. Stage 4 from the get go with a solitary liver met which melted away with Taxol, Carbo & Herceptin. 2014 brain met which we removed but have had a bone met on my femur since March 2015 that is not so eager to go.... I had RT, full hysterectomy (although I was only weakly ER+). Femara - which I stopped last Jan as I felt it was pointless. I also get Xgeva.
Last November my thigh (on the side of my met) started hurting me again...we did MRI and discovered the tumor on the femur had invaded the cortext and the soft tissue as well...wait what??? Soft tissue??? My oncologist has never seen this in 30 years of practice. We kind of ignored it as I was getting a rod in to strengthen my femur and avoid a fracture and we were starting Kadcyla as Herceptin alone was no longer an option. So we would watch this anomaly.
Fast forward to this week - no response with Kadcyla - in horrendous pain so we did a scan and the soft tissue mass is now 7.8cm!!! (3"). That explains the pain shooting up & down my leg. I am on Norco 24/7 and constipated like crazy. We will biopsy on May 9 and send the tissue to Foundation One for genetic mutations especially a specific Her2 mutation. In the meantime, my leg hurts so much!!! I am in tears right now. My kids are 10 & 7 and I want to keep fighting.
Has ANYONE had this happen? I am looking for a needle in the hay but I will put it out there...
0 -
Nina -
So sorry to hear what you are going thru. I am a newbie and am not familiar with soft tissue mets. I have heard of some.
Others here are extremely knowledgeable and will chime in for you.
Please try to focus on what is in front of you and not ALL OF IT! You can get thru 5 minutes and then another 5 minutes and then another...
We r here to help support you as you and your tx team figure this out.
Warmly, V
0 -
Thank you V. I needed to hear that! All the best to you -
0 -
Ninathinking of you and no I have never heard of soft tissue mets, Hugs to you and I hope u get some answers soon xx
0 -
Nina- Thinking of you and hoping you can get some answers and painrelief!
Lulu- sending you good scan mojo to go with the pound cake
Lita- Amen! No mets are good mets.
Hoping folks are able to enjoy some sunshine and make good memories this weekend!
0 -
Nina, They found bone marrow abnormalities and activity/penetration deep in my hip and femur over a year ago. My mo said it can indeed happen, particularly if you've had bone mets in that area for a while.
It hurts like hell. Bone integrity still mostly there according to last PET, but they want me to wear a hip brace for added protection now, and have switched me back to using a walker instead of just a cane at home.
Totally sucks, more loss of freedom and mobility along with my usual problems, but what am I gonna do? It's part of the natural progression of the disease, along with my bowel incontinence and brain mets dizziness.
It's hard to stay peppy and positive, but i have to or I'll just roll over and die.
L
0 -
Lita57, so sorry to hear you are going through so much. I see that you had radiation to bone once, so I don't know if they can give you some more radiation treatments for pain. I agree, bone mets definitely affect the quality of life. Are you on any treatment now? Have you tried faslodex, femara or any other aromatase inhibitors? Are you a candidate for oral targeted therapy?
With so many newer treatments coming in, I do hope some thing works for you.
Take care.
S3K5.
0 -
Thank you.
Yes it is such am anomaly...
I will keep you app posted on the outcome. It just goes to show you: Be an advocate for yourselves! They "poopooed" this mass back in November...I insisted on follow-up scans and look where we are now
Best to all you strong women! And yes, we have to fight! Been fighting for over 6 years now akd in between issues, I sometimes forget I even have Breast Cancer
0 -
S3K5, my spine has been radiated three separate sessions of ten zaps per session.
My MO says AIs won't work for me...my tumor load is WAY TOO HIGH. I have organ mets, muscle mets, bone mets everywhere , and 20+ brain mets which are all active. Systemic chemo is the way to go for now until we can get things under control....if that ever can happen, sigh.
L
0 -
Dear MBC Sisters,
Thank you all for your replies about bone-only mets and what it means. I agree that it’s not exactly ‘good news’ to be bone-only, but maybe now I can understand my onc’s optimism when she meets with me.
I am also very happy to hear the good scan news from all of you who are getting positive outcomes. Makes my day. Leapfrog, will be hoping for great news from your Tuesday scans. Elle, awesome news.
Lauri
0 -
Dear dear Lita, my goodness. That all sounds like just way too much. Thank you so much for being here with us. I think of you very often.
0 -
Finally meeting with my MO today to get my treatment plan in place since they finally got my biopsy back, or at least some of it. I have this week of radiation and then we can get started on whatever were going to get started on. I am so ready to get my life back, or at least something better than this. I have been in pain for months now and I'm so tired of it. Radiation has helped some but has also come with its own bag of issues.
My MO better have some answers and some kind of hope for me, my quality of life quite frankly sucks right now.
0 -
Lulubee,
I like the way you think. I’ll come to your tea party, especially if you make those yummy-sounding cakes!
0 -
BigPeaches,
Sending positive thoughts and prayers your way that you get answers and start a good treatment plan soon. I hate to hear of anyone in pain, so hoping today is a turning point to better days for you
0 -
My hip/thigh brace arrived a week early
).It's just one of those cheapy ones that I ordered on line while I wait for the palliative care dr to set up my referral to an orthopedist. We all know how they can drag their feet, and I absolutely needed SOME support on the right side.
The brace is very light weight, and it fits under my clothes, but it's not a real tight, secure fit, which is okay for now. As I said, I just need something for the interim. At least I don't have to use my aluminum walker in the house - I can just use my cane again.
L
0 -
Lita57 how does the brace work? I need to use crutches and would love to know if it would work for me? Where on line can you buy? Thanks in adva
0 -
big peaches I hope u get some plan happening g very soon. I am also in limbo with low hemoglobin sleeping constantly freezing cold and exhausted and breathless . Just hope to get some answers diin
0 -
Leapfrog, I'll be thinking and praying about you tomorrow to have good results. This will be our life from now on and the only thing we have is Hope. My tests are in 2 weeks, but I'm trying to avoid thinking. If nothing is changed we'll start selling the house and than buying a condo next to my doughter. Moving is never easy, but I'll get more energy from the good news. If there is a change, we'll stay in our house. So, big decisions are coming. I am sending you hugs, prayers best wishes. Elen
0 -
Leapfrog and all who are scanning, testing and starting new treatments/plans this week...best of luck to you!!! Thinking of you and hoping for good results for all!
0 -
Minnie, just google hip braces.
I'm not an orthopedist, so I can't really advise you. I'm not 100% thrilled w/ this light weight brace; it's just until I can get something better from the dr. I want something that is firmer and provides a little more support. They have several types you can order on line, depending on your needs, and prices range from under 30.00 to 250-300.00.
I hate shopping on line. I like to try stuff on b4 i buy it.
Good luck!
0 -
thanks Lita57 x
0 -
Thank you for the warm welcome to this thread 😊
Laurie, yes I will definitely be checking all MBC related issues here, - I feel a need to be well informed when discussing treatment options etc. with MO. Minnie, also having HER2 positive I hope to benefit from the targeted therapy, - time will show. Lulubee, wishing you all the best with your scans and thanks for the advice about taking care of my happiness ❤️ - I have spent a lot of time the recent weeks thinking about what really makes me happy and eliminating as much as possible things that don’t. Delvzy, I can relate to being the peron that people with early BC don’t want to know about. A few weeks ago I sat opposite to a woman receiving her first Chemotherapy, she asked for advice on side effects, hair loss etc., I was relieved she didn’t ask me about my status, I am not sure I would have answered her completely honest, - she was understandably already very overwhelmed by the situation. Leapfrog, also wishing you all the best with your scan. I am practicing living in the moment, your right, worrying about the future takes me to bad places...
This thread is a great place - thank you for sharing and caring.
I will be taking my third round of chemo capsules today (weekly administration), - I have had some GI side effects within 12 h of intake, otherwise I am doing physically fine.
Take care 😊
Meja.0 -
Well, I was hoping to avoid chemo but that's not going to happen
I had 3 nodes show up on my PET so I'm getting 4 rounds of Taxotere (ick), Herceptin and Projeta. After the 4 round of taxotere he said something about moving to a pill form? They are scheduling getting my port in soon, after the EEG to check heart function.At least I have a plan in place, even if it sucks. Like my daughter said, "whatever works mom".
0 -
So much going on. My recent Pet& mri showed some improvement in my left femur met and no new areas. I’ve been down with bronchitis,flu etc for a lot of weeks. Back on zpac and steroids. Really tired but tolerating treatment ok. Sending good thoughts to all you wonderful ladies. Lita , I see that your port went well. Time for me to do it soon. The old veins are pretty shot in my good arm. Last week it took 3 attempts for Herceptin. I think nurse got nervous no matter how I tried to reassure her. She’s new at infusion room. .Eeg done Friday.no news is good news. Sending hugs to all. Stable for now and enjoying it. Maire
0 -
Maire, sorry about bronchitis and flu, but congrats on your stable status. Like the saying goes, "God only gives with one hand". Continue to heal.
BigPeaches, good to hear your doctor is taking this bull by the horns. I understand taxotere is quite doable and, more importantly, effective. Good luck, honey.
Delvzy, I hope you get answers and on a path to improvement soon.
0
