Bone Mets Thread
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Photogirl, I know exactly how you feel. Last summer I found out that my mets had spread to my liver. I, too, felt devastated as well shocked, discouraged, defeated, and frightened. I felt like I had crossed over some invisible threshold from what I considered to be the safety zone of "bone only mets" to the scary world of liver mets. My MO brought me back to reality. He explained that liver mets can be treated, and that people can continue to live for along time. I had scans in December, and my liver mets were shrinking and werebarely visible. My bone mets were stable. So how do I feel, you might be wondering. I feel great and suffer no pain or other effects of liver mets. I have adjusted to the reality of liver mets, and I am continuing to live my life. There are others on this thread who have been through the same experience. There is also a thread about liver mets. I think it is called How are people with liver mets doing. (Something like that) There are many people on that thread who continue to do very well with treatment. Dana Farber is a great place to go. Let us know if you have any questions, feel like you need support from us, want to vent, or just want to discuss your concerns. We are here for you. Don't lose hope
Sending you hugs, Lynne
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Babs, absolutely beautiful and joyful.
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Bags, Everything is beautiful - the venue, the decorations, the dresses, the people, and especially all the smiles. Those smiles speak volumes about the joy that must be in the hearts of everyone there. Congratulations.
Lynne
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Babs, god bless that beautiful family. I can feel the happiness through the pictures. How wonderful. I pray I too someday will see my DD and DS finally find that obvious and complete love. I am thrilled for your daughter and she is magnificent. What a magical day. Thank you for sharing!! I could look at that happiness all day!!! 😁🍾🍾. A toast to the new married couple. May you find joy and happiness in everyday. May it be filled with endless days of sunshine and building a beautiful long lasting life together!!
~M~
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Babs - Thank you so much for sharing this day full of joy! We LIVE with cancer, indeed.
Photogirl - I got bone mets, I got liver mets. I plan on doing fine. Not to undermine the shock and grief that comes with each new thing we deal with. But we rock on here, like Babs, and many do very well.
>Z<
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Thanks to everyone for showing me that its not over. I needed it. I was just diagnosed with bone mets.
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Melmcbee...I believe you posted a while back about your biopsy change from ER pos to negative. I also had that happen so am now supposedly Triple Negative. Recently went to Mayo for a second opinion...MD is a "TN" specialist...she told me she has serious doubts about the biopsy results as I was originally strongly ER pos and now 0%!....also feels my response to Xeloda more indicative of Er pos. Staying with the same tx plan for now but would definitely have a future biopsy at Mayo
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Phototgirl, I am 20 months out with liver mets, they have shrunk and am holding stable, feel pretty fine except a few SE's from meds. I have bad days occasionally, I mean where I cry for hours, but mostly things are pretty Ok. It's normal to feel scared, pissed, confused whatever. But don't let it get a grip on you and ruin your life. Do what makes you happy, keep moving, see loved ones. Just live your life. Today you are OK and probably many tomorrows.
babs, Wow! She is stunning and Deanna is right, she does resemble Amal Clooney in that stunning dress and long dark hair. What a beautiful day!
micmil, I know what you mean about losing who you are, because suddenly it seems like EVERYTHING is about this freakin cancer. I am still the same girl who loves to make art, ride my bike and laugh my head off but people don't act the same around me anymore, I know they talk about me while I am not there, I have lost friends and family who "don't know what to say" or don't want a black shadow marring their lives (LAME excuse). It was literally making me a basket case. I finally had to admit that much of the stuff I resented I was probably creating in my own head, the other stuff I HAD to learn to brush off. Otherwise, I would lose my mind too. No one that is not in our situation can possibly know what the stress and isolation is like. Yet we keep pressing forward with determination and hope and try to find joy and meaning when we can. In some ways it has been very liberating to stop sweating the small stuff...
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Babs that's a dream! Was it in a tent? Love what you are wearing, so elegant. Thanks for the beautiful pictures. Then that chupah! Oh my gosh, just gorgeous!!WOW who would have thunk it huh, so they have that bro sis thing going on, good for you. Wish you many more such joyful moments.
Dianarose it's so great you were able to enjoy the family. That's how children are, they say you just give them a simple answer, they understand more than we think. Fingers crossed this thing is working!
Wendy you know what, we'll tag along, you won't sit by your all lonesome girl. No such a thing. It's truly incredible to have to go through so much anxiety all of the time. It's practically Tuesday, so you almost there. Wishing for good stuff your way.
Micmei you know everything you wrote and Wendy It was as if I was hearing Dani speaking. She is truly incredible, she goes about her day doing e/t that is expected. BUT the reality is that this thing is always on our heads, and e/t she does is around this thingy. She says she cannot make any long future plans because she is always on some kind of treatment, and many times she's been called to come in for scans like right away. Her hubby would love for them to get away just for a little but…so all that frustration and the not knowing is so relatable. Micmei you've helped so many here. And you are going through so much. So sorry about Mom. Is there anyway you could do some kind of skype or something with phones at least? Is she gonna be allright? Do you have people to help her? Hope you come out of this soon and you could feel stronger again. It's just great that you could try to help Wendy.
Photogirl jump in the liver thread you'll get advice and support that you need. It's definitely doable. When we heard of the liver mets it took me a long time, Dani was like what else is new? It does take a toll on you. But there are so many things you could do, get some details and hop on there ok. Your Hubby did the right thing, it's crazy that it has to come to that.
LindaE how are you coming along?
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Babs, thank you letting us share in your joy. Your daughter looks so happy. A dream come true for every parent.
I join the scanxiety crowd. Had CT scans today and bone scan is scheduled for Thursday. I can kiss any productivity it relaxation goodbye for this week. Praying that Ibrance six cycles keeps me stable.
Welcome new friends. There's so much life lived along this group. We're herefor you
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Thanks Stilts. I also dont believe that mine changed. I see my mo today. Wishing everyone a good day.
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stunning tulips Lita 🌷 we can't grow them here the kangaroos eat them
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Momall, I think that LindaE might still be in Cuba. I think that she left on March 20 or thereabouts. I am not sure when she is due to return. I am hoping that she is having an incredible, relaxing time in the warm sunshine, feeling good, and not thinking about MBC
Lynne
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Praying for everyone having scans or getting results this week! Mine aren't until the first week in June but I worry that it's such a long time! Seems we can't win with this!!!
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Jen, I am pulling for you and hope your scan results are good ones.
Delvzy, Gee, I thought it was bad that the deer ate my tulips, but kangaroos trump deer any day. I have a running battle with deer every year. I have tried tried all sorts of methods including deer-resistant plants, but they seem to enjoy the challenge. I swear that there are very chubby deer roaming the woods around my house every summer because they love my plants and flowers.
Lynne
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Lynne..planning to try pieces of Irish Spring soap around my Hosta and Daylillies this year...I read somewhere the deer don't like the smell...worth a try...will let u know if it works
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Hi all,
Momall - thanks for checking up on me. Came back from Cuba yesterday, sis and I had a great time with lovely weather. Very happy I went on this trip but this will be the last one. Too much pain and lack of energy to travel now.
I went through the last 10 pages or so, so much going in two weeks. Welcome to the newbies. Dee, happy to read your results! Thinking of all of you going through scans and wishing all good results.
Deanna - Thanks for the update on Carol. I hope she continues to get better every day.
Babs - lovely pics! Thanks for sharing your joy with us. Your daughter is a carbon copy of you!
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Babs thank you so much for sharing all of these important moments in life we worry we will never see ourselves...sure is nice to share others joys. They all look so happy and your daughter is gorgeous. Your little baby girl is married now
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LindaE, Welcome home. I am glad that you and your sister had the opportunity to visit Cuba again. I have heard that the beaches are beautiful. I have always loved the ocean and the beach. I do wish that you had been able to leave the pain at home. Rest up and be good to yourself. Travel can take a lot out of us. Are you able to tolerate Faslodex without major SEs?
Hugs from, Lynne
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OK girls on the deer problem, this is rather gross but this is what we did every year with our garden, if you surrounded by human urine the dears will stay away! It's got an acidy smell of course, they do not like it at all. Iused to make Tom do the dirty deed Lol!!!!
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Babs- beautiful wedding
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Oh my, Gracie, I cannot stop laughing. Maybe that explains why I didn't have a problem with deer in my garden when my sons were little. I have no doubt that there were times when neither they nor their friends would stop playing long enough to come in to use the bathroom! Lol.
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Lynn - I guess I'm among the lucky ones that has no soreness or pain in the butt after the shots. I sometimes feel dizzy and have some shortness of breath as well as fatigue but nothing major. I suspect these will taper down with time.
I need some volunteers for the deer LOL!
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Posted a lengthy update in "Unfortunately things are going downhill" thread.
Had SO MUCH that I wanted to do today...errands, attend my live support group, etc., but haven't slept well since Saturday.
Had to RAMP UP on the pain meds, which I don't like to do, but I HAVE TO DO IT, despite the opioid fog. I refuse to drive when I'm on the stuff tho, so hopefully I'll be able to sleep a little more tonight and get stuff done tomorrow.
On the other thread, I voiced my concerns about the cancer spreading, as the last scan clearly indicated...so duh, Lita, NO WONDER YOU'RE IN PAIN!
I may have to start asking for fentanyl patches and more palliative measures with all the bone and organ shiz I'm dealing with. Just have to make the call and stop pretending that things aren't slowly deteriorating. I can handle 8 to 9 Pain during the day cuz I can distract myself with a little tv and reading and the La-z-boy massager, and of course you guys are the best 😉, but sleep time pain in bed is the worst. You have to get some sleep to be able to continue fighting and stay out of the throes of despair and anxiety. It becomes an incessant downward spiral if you can't.
May have to call mo and remind her about the rads referral. Called the ro's office this afternoon and they still don't have the Dr's orders yet. They say it could take a few more days...😣 BOO! To some degree I blame myself. I probably should have pushed for more rads a month sooner. From one metavivor to the NEWBIES out there: DON'T PUT SCHEDULING RADS OFF, even tho you can only radiate an area once (or you'll end up with bone and tissue necrosis). Waiting just gives the little tumor bastards more time to grow and spread, infiltrating more muscle tissue and compressing vital nerves with increasing pain.
Don't be shy about speaking up for BETTER pain management. Dr's don't live inside your body. They don't know what you're dealing with and what the limits of your individual pain tolerance are.
And some days you just have to stay home - the errands and chores can wait. Your daily comfort and QOL matter the most. You will learn what works for you (just as I still am) as the weeks and months go by.
Gentle hugs going out to the rest of you who are experiencing mets pain, ascites, and headaches. We're stronger than we think, and as long as we reach out to each other, we'll be able to hang on.
Still fighting, Lita
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hi all!
Babs, thank you for posting such lovely photos of your daughters wedding. Wow, you must be such a proud mom! Now you can be exhausted & take some time for yourself.
I laughed when I read about the deer problems, we have so many deer here because they have absolutely no predators & half of the neighbours are feeding them. We call them forest rats. We put in a deer fence around the property instead of making poor Pencil Boy pee around the fenceline of our half acre lot!
I ended up with bronchitis but seem to be slightly better today so have decided not to get the antibiotic script filled for now.
take care all, cheers, dee
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Lita, am so sorry to read of your pain level and lack of good rest. Hoping and will be praying you get some decent rest tonight. Pain at night always seems worse to me. Gentle hugs!!
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Lita,
I am sorry you are going through all the pain. I pray you get some sleep tonight.
Big hug,
Ronnie
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Thank you all for the information you gave me yesterday. I guess I'm not alone I just feel so devastated! I think the Ibrance must have failed me after eight months. I'm not sure how they keep the bone and liver mets under control at the same time. You are all so wonderful and I can't tell you how much I appreciate all of your kind words, laughter and great information. I'll keep you posted after I go to Dana Farber next week. Hoping they have some good ideas.
Anita
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Anita,
Hang in there and keep checking in, these ladies are a wealth of information.
Big hug,
Ronnie
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Lita~ Sending you warm hugs and a fentanyl patch of your choosing. I know how painful it must be when you want them. Not only do I have cancer, but I have throacic outlet syndrome with extensive nerve damage in my dominant right arm, I have lymphedema in my left and I only breathe on one lung. (Surgery complication). I understand what that level of pain feels like everyday. It's enough to drive you mad. Have they given you sleeping pills ?get whatever it takes to rest and re charge those batteries. You're all in my prayers. You strong ladies. ~M~
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