Bone Mets Thread
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My Smartport was placed after Stage IV, and not for chemo. After so many years of blood draws, the veins in my right arm failed and would not reliably give blood anymore. The port has been such a blessing to me. I've had several surgeries and hospital stays in the past six years, and for those the port was in constant use. It's also accessed for all my PET scans and MRIs, and all my lab work every few weeks. I won't ever have it removed.
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oh my, so the only rehab my mom could get placed that could transport her to daily RT is a dump. I'm thinking we will wait till she is done with RT then transfer to a different facility. I feel so bad for my Mom.
Anyone else here have extensive bone mets to start?
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Love seeing photos of your little piece of heaven in NZ, Terre! Hope you'll keep them coming!
Niki, that's a shame about the disappointing re-hab place. Maybe you or someone can bring in enough flowers or plants or family photos or other things from home to make your Mom's room more cheerful while she has to be there. And to answer your question, I have "diffuse and extensive" bone mets, as do several others here. When I was first dx'd -- exactly 2 years ago -- I was in horrible shape -- barely able to walk, hobbling around on a cane and even a walker for a short time. I felt like my life was over. In fact, there were weeks I never left the house because I was in so much pain. But given the right tx and rest, our bodies have a tremendous capacity to heal and rebuild. So don't let your Mom lose faith that she will regain her mobility and her life! It's just going to take some time.
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dlb823
Thank you for your thoughts. Similarly my mom is in bad shape. Pretty much every bone is affected. Fracture of the right elbow, left humerus. Rod in right femur, plate and pin in right elbow. RT to the lumbar spine. She wasn't walking well before but now hasn't walked in 3 weeks. I'm dreading her future PET
I'm hoping one she can stand and pivot to a wheelchair we can transfer her to and from appts. Then she can go to a better facility.
I appreciate your story and inspiration. I am very glad you are doing well. ❤️
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Deanna, beautiful new picture of you.
Stefanie
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Ellelue, when I went for a second opinion to the stage IV diagnosis one oncologist said "there's no point in burning down the barn once the horses get out." A different doctor said it was "of debatable value". At the time I was speechless about having had the surgery which might very well have been useless.
Since then I have all the blood drawn from the port in order to get some use out of it. Like Caryn said, I try not to dwell on it too much. Every so often it just comes back to mind.
Karen
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Totally off topic, and I posted this on the cats thread, but...nothing sweeter than a man and a kitten in my book. My DH hanging with today's adorable rescue kitten. Was a close call...almost ended up with 9 cats instead of the mere 8 we have now.
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Terre, what can I say but send the kitty to me!
Myra, Are you back from your cruise? How are you feeling?
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Happy Holidays, everyone! Here's a pic of me in Prague. What a beautiful city! We went for a few days between Christmas and New Year's and we will definitely go again!
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Good morning to all,
I'm feeling a little run down from all the holiday celebrations and glad that today I get to rest, and I'm not cooking a darn thing!
Loving all the pics! Terre your new home looks beautiful, I always wished I had a porch either in the back or front of the house but we had to settle for a side patio. The kitten is adorable, the markings are incredible and dh looks so peaceful.
Milaandra, I hear it's beautiful in Prague, the background scenery looks amazing! You look awesome too, what a nice little holiday. My in laws live in England and went to Berlin over the holidays, they shared some amazing pictures, I couldn't believe how much it was decorated for Christmas.
Deanna, what a beautiful new avatar, love it!
Momallthetime, thank you for asking about me, you are so incredibly caring to all of us here. I'm feeling better, ear infection is gone, cold settled down, I'm just very sore right now from all the food prep we did over the holidays. I'm on strike now, going to rest rest rest. Although we do need to undecorate the house now but I'm not rushing. How's Dani feeling? I'll be praying for her during her scan and MRI, I really want some positive news for her.
Hugs to all, Annie
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Milaandra beautiful pic and you look great. Looks like nice weather always wanted to visit Prague when I lived in Europe never made it. How was the food? I've heard good things.
Terre such a pretty little face and the colouring is fantastic. Cats are so relaxing couldn't live without them.
Chelle how's the getaway going?
Orlandoan I understand what your saying. With me they are trying the new treatment plan ,doing nothing. It started as a 4.5 cm tumor and I still have it with me six months later. Initially there was a lot of talk about surgery. Then the stage IV verdict came down the pipe and no surgery. Flies in the face of everything I knew about cancer.
Annie holidays can be a lot, we love doing it for those we love but it is tiring. Enjoy your rest you deserve it.
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Wendy (and all those who have not had breast surgery),
If it's any comfort, there isn't much evidence to show that removing the primary breast tumor, after the cancer has metastasized, increases survival. Yes, it's true that there is some support for removing it to reduce tumor load, but nothing really compelling. I do, however, think that for some woman there is psychological and emotional value in surgery.
A mx/bmx is major surgery and if you are dealing with pain or se's from your tx, then doctors and patients need to consider the added stress this will cause on the body. My long winded point here is that the benefits of breast surgery forvstage IV patients is very unclear. If you had surgery, don't view it as unecessary. If you haven't had surgery, don't worry.
Caryn
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deanna. - love your new pic. You look amazing. Would never know you are stage IV
Txmom. - thanks for telling me about your healing hip. Certainly what I am hoping for. Thanks for the encouraging story
Feeling so much better today. Slept all night. The night before I didn't sleep s wink due to pain. Ds1 is having a friend spend the night tonight so kad I won't be fighting sleep all day.
Hugs all around
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Oh, Wendy! If you're a carnivore, there is no where better to eat! I don't know how they get the meat so extremely tender and flavourful! It isn't just the slow cooked stuff, like the goulashes, but steaks, too! If you ever go, I can recommend the best restaurant ever
Two downsides to the vacation: our hotel was in an excellent location, but with the windows closed it was a thousand degrees! With the windows open, noisy drunks being merry all night. So I didn't actually sleep for four days LOL! And a woman in a shop thought I was my husband's mother!!!!! So I spent days trying to figure out if I looked 15 years older than my age, or if hubby is just a baby-face. Very depressing!
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Patty, Wendy ~ I was following your lead on coming up with a new avatar for the near year, since both of yours are so pretty. Mine is from the night we went to a concert in LV back in June, Patty, so excitement and makeup did wonders for my dark circles, which are worse now with Ibrance. In other words, catch me without makeup if you want to see my Stage IV personna. Anyhoo...
Milaandra, your pix from Prague is beautiful! But how deflating to have the kind of comment you got! I'm sure your hubby is just exceptionally baby faced, and the shop owner probably has vision issues. Besides, you were probably just extremely tired that day.
And Terre, the pix of your hubby & rescue kitty is adorable!
I was thinking recently that we haven't heard from Leah for awhile. Hope all is well, Leah (if you're reading), and that you've just been busy w/family or posting elsewhere on BCO, although I haven't looked.
Niki, I had an idea about your Mom. As you may know, we have a contact list for this thread, which I need to update anyway. If you would want to PM me your Mom's address (don't post it here for security reasons), I and perhaps others here, could send her a card to encourage her right now, as it sounds like she is overwhelmed with her new dx, which is totally understandable. Anyway, I just thought a few cards from others who have been there/done that and improved a lot might be helpful. Just a thought...
Lindalou, are your DS & GF still visiting?
I hope everyone's new year is off to a good start! Deanna
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Hi all!
Deanna - love the avatar. Just beautiful.
Patty - glad your'e feeling better and resting!
Annie - rest rest rest! No need to take down the decor - just leave it long enough and it will get dust and spiderwebs and be perfect for Halloween!
Milaandra - beautiful picture of you and Prague. I've heard it's a lovely city - so glad you got to visit. And as a complete carnivore (I grew up in South Dakota - beef cattle country), I am sure I'd love the food!
Today is a day of work for me; I've ignored the work I was supposed to do over the holidays and kept busy with the yard, unpacking, and kitten rescue. So..I'm running out of time.
Wishing everyone a wonderful day!
Terre
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Terre, I think you may have the secret. I feel worse when I have nothing to do! Admittedly, I may just be making up an extreme lack of sleep, but I have felt quite crappy since we got home.
I had no choice about getting a quadrectomy. My lump wasn't very big, particularly considering the size of my breast, but it had actually ulcerated! Very scary. But if it hadn't, I think I would have wanted to keep it so I could monitor the size, you know? I find the whole bone thing very difficult because I don't know if it's improving.
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milaandra. - maybe the lady in the shop was trying to hit on your dh ????
Deanna. My dark circle around eyes have gotten worse on Ibrance too. Haven't heard anyone complain of it so I thought could just be exhausted from so many hospital stays. :-(
Niki - I too would be willing to send a card of encouragement to your mom , if you think it would help.
Just got back from picking up ds1's overnight guest. I stopped b and picked up a monster energy drink ( i rarely drink them ) to take around 7-8 pm so I can hopefully hang til at least 10 pm . when we invited the boy dh was going to be home but the boy was grounded and couldn't come. Dh went hunting and will be gone til tomorrow evening. Of course, they called back and agreed to let him spend the night. Grrr. It's all on me now. Dh said he would come on home but i said stay. So I decided to make it easy on me. Order pizza with a desert pizza for supper. Dss cleaned house. Now just got to entertain ds2 so he don't drive bro and friend crazy. Of course ds1 doesn't want lil bro in their business. Ds1 and friend trying to start a band. So I guess I will hear drums and electric guitar and mic all night. Oh well. Love to see dss smile. Ds1 rarely does anymore. Between worrying about me and just being 13 , he is so moody. Ugh to think ds2 is right behind him on the puberty scale. Scary. But happy to be alive and be a part of it.
Hugs to all
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Happy New Year to all! This thread is getting very busy. I'm sorry we have so many members but glad you have found this wonderful safe place to find understanding, wit, wisdom, advice, and friends all facing MBC head on and the unknown future it brings.
I am having a very difficult time remembering all I've read. So I thought, I have little to NO estrogen (which is good since I'm ER+), I'm naturally blonde (:-), I'm OLD (almost 64), I now have chemo brain, I'm on overload all the time, so I can have memory issues!
Bosco - first, I imagined you being very graceful (:-) Plts 10? pleeze be very careful not to fall or cut yourself. I get platelet transfusions when I reach 10 cause I'm such a klutz and I also have pancytopenia. Your photos of the islands are amazing, wish I was there. Your DH must be a hoot! Here today ........................
Kiwi - oh my goodness! those fruit bearing trees are lovely. I can just taste the luscious juice. what a wonderful place to call home. Hope you and your DH enjoy your Christmas gift to each other. You know you are truly in love and comfy in your marriage when a lawn mower is the perfect gift. I got a new thermostat for the heat pump and just love it. It's a smart thermostat! Best gift in years.
Patty - I am so glad to hear some good news for you! You have been to hades and back more than once this year. Praying that hip heals with your meds and you don't need the ortho services. BTW, your boys are adorable.
Mom - well. the swollen meninges (dura mater) surveillance plan looks like I get to have my head examined with my quarterly scans so my bone scan, & CT will include head, and now possibly MRI. I'm going to be a glowing skeleton for Halloween this year. If I get any neuro symptoms like, dizziness (husband asked ONC to please define dizziness - problems with balance not goofiness, right?) visual disturbances, if my headaches change, issues with senses of taste, smell, difficulty with speech, more difficulty finding my words, more difficulty with memory, then I go right into the MRI tube even if not time for quarterly scans.
As you can tell, today is a good day. Coping with s/e of Xeloda and resting well. I added my 2016 avatar. MBCN scan - treat - repeat #stageIVneedsmore T shirt!
Big hugs and lots of sunshine. rnsparki aka Beth
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My DH and I leave for a few days to visit his father in Kansas so in advance of our departure he requested I take our Christmas tree down. I hate to do it before the official end of Christmas but I think it was a good idea. The top third of the tree was so brittle, essentially there were no needles left by the time I got the tinsel and lights off. Anyway, this is my least favorite day of the year. Just wanted to say hello.
Amy
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A healthy, healing and happy 2016 to all. Hope the blue skies will cheer people. This is me by the pool on New Years Day
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Fab holiday photos, Bosco and Milandra. I am curious about travel insurance... could I ask who you got cover with and what details did you have to give/disclose to them? If you don't want to post here could you pm me pse? Last autumn I phoned all the travel insurance companies I could find in Ireland and the UK and no-one would give me cover for a trip to France. My youngest son is going to Brussels next month for a five month traineeship and I would love to be able to visit him.
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Beautiful pics! I can't possibly keep up with this thread but occasionally I skim through it.
Kiwi, Your kitten is so cute! DH looks cute too, I can't leave him out.
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aoibheann,
I know you addressed others, but I have traveled both internationally and domestically since my dx and have always been able to obtain travel insurance that covered pre-existing medical conditions. I have used both Travelguard and CSA insurance. You might also want to check out insuremytrip.com I don't know if country of residence makes a difference,
Caryn
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Bosco - you and Hawaii look amazing!
rnsparki - I am blonde, old, estrogen deprived, and have read that Femara can mimic chemo brain. So I totally hear you! Loved your post - you and your DH seem to have a good sense of humour too. "get my head examined" - classic. Made me laugh out loud. Not at your condition, of course! And dizzy blonde....yup. I had an inner ear thing going on and said I was dizzy and my DH said, well, you're blonde so of course you are.
Nice to see good and happy news!
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Hi ladies,
Happy New Year! I have not cooked in days and have been lazing around the house. Just relaxing on the internet now, catching up with posts here.
I love the new avatars, Deanna and Patty! You are both so beautiful!
Random question for everyone to answer: what city in Europe would you visit with a 4 and 7 year old? I am thinking I want to take an impulsive random trip last week of March. I am thinking Europe. 2 cities I was considering: Barcelona and Prague! Then I see Milaandra's photo and it makes me really want to go to Prague! Anyone's advice appreciated! I've only ever been to Rome and Lisbon, so I'm open to any other cities. Not London though. For some reason I have absolutely no interest in that city!!
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My heart belongs to Paris so that would be my first choice. Second would be Lisbon, but since you've already been there maybe Rome or Florence. Whatever you decide, have fun.
Amy
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This may be a useful site. I get annual insurance through my firm. It's unclear whether they will cover me for cancer related issues. This time round we travelled Delta and they offered insurance for cancelled flights. I talked it over with my onc and came to the view that it should all be ok and worry about the insurance later - a bit reckless perhaps !
Would have been fine if I hadn't slipped in bath but as that could have happened to anyone should be covered.
An EHIC card would also help with medical costs whilst in Belgium if you can get those in Ireland
Hope you get to Belgium to see your son - life is for living!
http://www.nhs.uk/NHSEngland/Healthcareabroad/countryguide/Pages/healthcareinBelgium.aspx
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Hello All!
I'm feeling a bit better after my horrendous infusion on NYE. DH says no more quick infusions for me & I agree, terrible stomach cramps & bone pain.
I will go back & read, but I wanted to post this youtube video of Humpback whales which was taken yesterday, just down the road from us. Just incredible. BBL, cheers, Dee
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Bosco, what a great picture, wish I was there!
Dee, what amazing footage of the whales, wow I would love to see them. Thanks for sharing that! Are you getting Aredia (pamidronate) for your infusion? Mine is infused over 2 and a half hours, and last month I had no se's at all. That being said for some reason the 2 before that hit me really hard, almost like the very first time I had it. My onc can't figure out what happened. Glad you're feeling better!
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