Bone Mets Thread
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Thanks, Kaption- so Abraxane currently by itself? There are some clinical trials combining Abraxane with Immunotherapy (together or one following the other) that I thought were maybe going to be reporting at the San Antonio Breast Cancer meeting?, that's the biggest mtg for MBC clinical trials and meets in December.. So if you hang in there with this treatment, then we revisit options in the fall when the abstracts start coming out. It seems like you have done very well thus far, just need to get back now to longer term stable and see what's ahead!!
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Leapfrog - I can totally relate! I am newly diagnosed with mets to my left sacrum and coccyx. I'm trying my best to be positive and hopeful because I truly believe in the power of positivity. I went away last week with my sisters and our children and they took more pictures over the course of the week than they have my whole life. I try to keep in mind that this is a journey for them too, and just as scary. I had to be very honest with my husband at one point and say, "That is not what I need right now." It's so nice to get encouragement from you ladies. Suck to be here but glad I'm not alone and can talk to people who really understand!
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Momall - you're so sweet to think about me all the time! Still on Taxol until biopsy results come back in about 2 weeks.
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I tried posting earlier today but couldn't. Something odd with my keyboard. Your sunflowers Linda are just the thing to brighten the day. I spent a few days last week with bad pain in my good hip. I thought the worst but it's better today. Must be arthritis. I left this board back in 2009-10 because I discovered that my posts were appearing on another site. I reported it to the moderators. Im retired so now I don't worry about it.
I found a lot of support here years ago. I try to be more honest with my family now about how I feel. I take a book and hit the couch when I need to. I recently read In Between Days by Teva Harrison. A memoir about living with cancer. It is half graphic novel. Very interesting and informative
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My name is Carol. I started Ibrance and letrozole and xgeva shots the beginning of July....am now on my second round in August. Only side effect noticed is numbness in toes. Back/hip pain has gone away. Feel better than I have in six months. From those who have been on similar combination for awhile, is it likely the effects will be the same for the next few months? I'm hoping so....live in Iowa and want to go to Florida for a month this winter.
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saying hi. Sending hugs who need them
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Hugs back to you!
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Hi Cure-ious and Kaption, thanks so much. Your responses make total sense to me. I'm just going to go with how I feel instinctively and grab whatever joy each moment holds.
Kaption I'm beginning to see that it's early days for me, although it feels like a long time. I've only been on treatment for about six months and the pain is not yet under control so your post has put that into perspective for me. I feel encouraged by your message, as you're three years ahead of me and, although we're all different, it does help to know how it's been for you. Sorry to know that you haven't been so good lately and good luck with your future scans. I know just how lucky I am to have a loving family. It's just my husband, son and me but we're a great team!
Cure-ious You've cleared up my confusion by pointing out the difference in having metastatic disease nowadays compared with the past. That also explains the attitude of some people towards me and that's fine. I can separate their thoughts from mine now. Unfortunately we've had to tell people because I've totally disappeared from our social scene due to my current limitations. I don't have a normal life at the moment and haven't been able to for the past year due to the tumours and stress fractures in my spine and ribs but fortunately social media comes to the rescue with that and I'm still able to be in touch with friends that way, in between their visits.
Thanks ladies, nice to meet you both xx
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Hi PattyPeppermint and hugs back. I'm new but beginning to find my way around here a bit. So many caring ladies xx
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Hi Metster-Mom, thanks for your message. I know what you mean and you just have to tell people what's right for you as they're doing their best in an unknown situation. For me, I must admit I'm soaking up the love and attention from my husband as it feels very sweet. I'm guessing I'm older than most of you, having been married for forty years so it's a little bit of a honeymoon feeling getting all this love! Stay positive, keep your mind in the right place. It definitely does make a difference to the way you feel if your thinking is optimistic and positive. Thanks for your reply and I do understand!!
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Hi Kaption,
I just looked it up, San Antonio Breast Cancer Symposium is Dec. 5-9 this year- the abstracts are available a month beforehand, except to those that will be accompanied by press releases (!), which may come later on, closer to the meeting or on the day of the presentation. I've been disappointed that there wasn't much new the past two years, but maybe this just means this is the year for something to start shaking on the MBC front!
But if the current treatment fails before then, we can go digging into the clinical trials listings or whatever other help you want, so just keep in touch with how Abraxane is working!!
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hi! I didn't have chemo for the years until another relapse. I did well with Letrozole and faslodex and some radiation but had three great years with no chemo. The hormonals stopped working so now Xeloda but maybe targeted therapy again down there line. I hope you tolerate your treatment well! Good luck!
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Cure-ious Terribly sorry to read about your kidney stone. And so glad to know you are better. Not sure what we would do with you here. How are you feeling. Your tone is a bit more philosophical than usual ...
Hi Patty. Love it when I see your posts.
Exhausted today but very active weekend.
>Z<
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So many additions to the thread 😢 Welcome ladies together we are stronger that's a fact. I can't tell you many times the ladies on this thread have raised me back up. Have changed my days from a crying mess to a happy journey. Hope springs from this thread when hope is what you need🤗. So welcome Leapfrog ladyolivia,Valerie5746 , Metster-mom and any I may have missed apologies.
Had my chemo day today on three more left last month is September. Taxol has been interesting but now I need a break. Blood values have remained high thank goodness for the hippy stuff I do on the side and think that's the only reason I've maintained a modicum of health. That and exercise I have to keep moving. Visited a dear lady from my dragon boat team today in the hospital. She had had a double mastectomy ten years ago , she figured she was done with this disease. Then last week her hip broke and she went to hospital emergency surgery. Now they have found a large tumour On her spine which turns out not to be the original tumour. So lung cancer not breast cancer another tumour there. I walked into her room and we both broke out in tears. Having to go through so much only to have it come back. I sat there trying to cheer her up and tell her why she should be hopeful. That she will over come this , that others have. She was laughing when I left and I cried all the way home. I kept thinking I can't end up in a hospital because I'm too long I won't fit in the bed.
Wendy
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Welcome, everyone. It's a party we don't want to attend, but there surely are some wonderful guests here!
Z, so glad that you had a good weekend. I hope that the worm thing is resolved.
Wendy, you make me laugh with your "I'm too long for a hospital bed"! My son (6'3" is about to marry a precious girl in November who is 5'11". They may spawn a basketball team! I'm so excited! He kept asking me (engaged only this summer) if they needed to "hurry things along" on my behalf. And I kept saying, "I don't think so, but I have NO idea". I'm thrilled that this will happen sooner rather than later, though....maybe I'll get to see a baby in the future! Two sons, 35 and 36 and no daughters-in-law until now. Can't wait for November!
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Welcome to all of the newcomers! I always say that you will learn more here then any doctor could ever tell you! The support and advice is invaluable.
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Thank you, Cure-ious! You are so helpful. I'll keep my eyes open
Welcome to the new folks and those returning after a break. We definitely need each other. As much as my family and friends support me-you all are only ones that really understand what's happening.
Hugs and prayers to all.
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Welcome to all the newbies. As you can already see, there are many helpful, supportive people here for you.
Wendy, I am sorry that your friend's recent diagnosis. Life isn't fair. I have no doubt that you lifted her spirits by visiting her. It probably left her feeling stronger knowing that you are there for her. I did laugh when I read your comment about the hospital bed. I am 5'3", so I have no problem there, but I noticed that my DH, who is 5'10"(so only average height) barely fit in the hospital bed. I laughed and told the nurse that our 6' 3 1/2" son's legs would dangle over the end of the bed! She told me that the hospital has bed extensions that they can use, so you would be all set. With that said, I don't want you to be admitted to the hospital so stay healthy!! Do you know what your treatment plan will be once you finish taxol next month? Will you be moving on to something else or going back on taxol after a break?
Joyner, Have you picked out a dress for the wedding? Will the wedding take place nearby or will you have to travel? I hope you post pictures.
Carol (ladyolivia), I am not on the same medications as you, but I will address you concerns anyway. I am on Ibrance, Faslodex and Zometa and have been on this combo for the past year. I had been on Arimidex for the year before that until it failed. Everyone has different experiences with the medications, but I think you should be okay for your planned trip to Florida. Some people on your combo have fatigue or joint aches, but most find it to be a relatively easy treatment plan.My DH and I are going to Hawaii for two weeks in November, and we are planning to spend the month of March in Florida. At first I was a bit nervous about being away for an entire month, but now I am looking forward to it. We love the ocean, and the water down there is so much warmer than our New England beaches.
Cure-ious, i am glad that the pain from the kidney stone has been resolved. Hopefully, the stone passed and you never have another one.
Lindalou, Those sunflowers are beautiful. I closed my eyes and tried to imagine those fields full of sunflowers. It must have been breathtaking for you to be there.
LindaE, I hope you are feeling okay and that the Taxol isn't too difficult to tolerate. I await the news of your next steps in treatment.
Oops, this is a very long post. Leave it to me. I always go on and on. In the interest of space, I will just say hi to everyone else.
Hugs and prayers to all, Lynne
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Hello to all the newcomers and all my old friends. There is so much love and support here, it really does help!
Hugs and prayers everyone
Claudia
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Lynne Hawaii oh my gosh, that's just gr8!!
Wendy oh that hippie stuff!!! Thanks for the tea idea you posted, it sounds complicated to do, but she may just try it. Well, hopefully they will throw you out of the Hospital saying Lady we can't have you! LOL it really sucks about your friend, is she getting rads?
Curi-ous oh my, you are a good solid friend,Kaption to have immunotherapy as an option is gr8. I so want that to be the next step for Dani. A stone is sooo painful, Curi-ious, you made me chuckle with your thoughts, thank goodness you did not have to quit? How did it resolved, you were able to pass it?
LindaE you kidding me?, always thinking of you. It's good that you are still on something till you get the results. Hang in there.
Hey Patty, i think you are our mascot!! Always love to see ya!
Joyner oh how lovely!! Such exciting time this waiting period.
Maire thanks for the recommendation. Put it on hold already. I seem to only be able to read these memoirs, or medical books, I have like at least 30 right now, cannot concentrate on a/t else. I find solace in these books.
Metster Mom how nice that you have these relationships, it's a blessing. I must tell you, it's always a game like, when Dani meets for a barb-q with sibs, I can't help and think, when are we meeting like this again? I always took a lot of pictures, they always give me a hard time, but let me tell you, when it's shared, they all love it. Dani has been much more affable for picture taking, it makes me nervous, but it's priceless.
Leapfrog you sure are one lucky girl, honeymoon it is, why not? You got a lot of living to do.
Z waving at ya.
Babs when are you starting the trial?
(Lynne did I outdo your post?)
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Reading a lot but not posting much lately. Welcome to our new friends. These are the most wonderful bunch of people. So glad you've found this little group where you can say, ask, share, rejoice and bitch about anything.
I'm doing well. The high from my vacation last month is starting to balance out--or my off week from Ibrance is starting to be a little more tired than it used to be-- and I'm getting back to my old tired self. Boo.
Can we talk beds and mattresses and pillows for a second? I have a 10 year old tempurpedic that I used to love, but my hips were starting to feel very sore so I added a U shaped giant body pillow to give me more support. That was wonderful for a time. I'm starting to think about getting a new bed. Any suggestions? I've been wondering whether I will at some point enjoy the ones where you can left the head or feet - you know, for later down the road. Thoughts?
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Jengotthis - it is so funny you having this issue. I have been too. We actually have 2 temperpedic mattresses, 1, 2 years newer than the other and a different model. I had to start sleeping on that one a year ago for my back and hips. Now I am having pain on that mattress. I am wondering about a new mattress and the one that raises and lowers head and feet. Also want cooling gel due to hot flashes and night 😓 sweats. Can't decide which one would work best.our mattresses are 12 and 10 years old. I think lifetime warranty is a crock! What do you think? Have you been looking? We are going to start getting serious about it soon. Back is getting to be a big problem.
Hugs and prayers
Claudia
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Jen and Claudia, I purchased an adjustable bed last year and I highly recommend it. I have a Serta and it is firm ( I need firm) and has helped not only with my spine, and hips, but back spasms as well. I have had some significant hip pain lately and it has really helped me to get in bed, adjust the head portion and be able to still watch TV or read or be on my computer with ease. I couldn't use the Tempurpedic because it made it too difficult for me to get and out of bed, and hurt too much. I've had spinal fusion surgery so that made a difference in what I chose.
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Thanks for your info Lindalou! Unfortunately firm makes everything worse for me. But I am glad to hear you like the adjustable bed so much.
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Hi All. I haven't posted on this site for awhile since my bone mets (currently) are resolved. But I try to stay current and celebrate and pray with you all.
Carol, I have been on Ibrance/Letrozole and Zometa for 15 cycles now. My ses are minimal. I struggle most from fatigue and thinning hair with the other ses minor and mostly annoying. I have flown across country on my own, taken a cruise, and traveled a 3-day car ride to Colorado and back since my diagnosis and have done well with it all. I plan on flying to New York and Missouri in October to see my sons and grandsons. So plan your trips. Talk to your onc about wearing support hose and taking along a mask if someone near you is coughing, but enjoy life. Several on the Ibrance thread have traveled overseas to Italy and other places and have done well. The limits are minimal if you plan your schedule to fit your meds, labs and scans. Also plan to rest and space out anything that might take extra effort. Although it is an extra effort, it is worth the joy to keep traveling and spending time with your loved ones.
Chris
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Hi everyone. Bigbhome I recently got a cooling gel pad. I ended up putting a cotton mattress cover over that one. It's a lot better than the memory foam I had before. I always had a firm mattress but now need the extra softness. I have a room AC in our bedroom and run it at 68 degrees. I did this when I was on Aromasin. My dh is very tolerant and uses the comforter up to his neck.
I talked to two dear friends today. They both called this morning . I try to explain what's going on but I know they don't get it about mets. They planned a trip for Sept 2018 and called to make sure I knew I was invited. I felt suddenly very upset but I don't know why exactly. I'm not usually jealous. I guess it just hit me that everyone's life is going on. I'm over it now but sometimes I don't know how to handle these feelings. I guess this is something to try to explain to the therapist I see.
But IntoLight I am going to plan some travel to California to visit my son this fall and maybe someplace in the spring. You had some good advice. It's a vacation not a sporting event
Hi Patty Pepper I can't help but smile when I read your kind posts and see your name.
Maire
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Hawksfansarah, I have tried pot for pain and nausea/vomiting control. I have lung mets so smoking it isn't an option. I have had luck with edibles. (Brownies, candies, cookies, power bars, etc). It settles my stomach cramps, and nausea. Unfortunately, my bone mets pain doesn't fully go away with edibles. How stoned you feel depending on how strong the edible is. It has to do with the concentration of pot to butter. I don't necessarily like to feel stoned, but it is very relaxing. My kids think its funny to mess with Mom will she's stoned. Glad I'm good for a laugh for them. I have also tried cannabis oil mixed with olive oil. Tastes bad but it relaxes your stomach too. Good luck. It's worth trying.
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Hi All,
Returning after a break from the boards. Very happy to find the same supportive sisterhood. Going on 4 years with Stage IV, and active treatment. Need the ongoing encouragement this site provides. Hope you are all doing well.
Shelley
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hi akshelly. nice to meet you.
>Z<
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Hi all
Been crazy busy but wanted to just pop in to say hello to all my BC sisters. Patty-waving back at you!
Welcome to all the newbies- I'm sorry you find yourself here but it's a place filled with the BEST people ever! So much knowledge and such incredible support!
I started the study at MSKCC last Thursday- you can read my posts on the thread GDC0077 Study-Thus far I feel pretty good. I do get a bit queasy after taking the pills and I'm no longer constipated which is a good thing. Will write when I have more time. Tomorrow AM I am getting cortisone shots for my torn meniscus so I can walk around Israel when I vacation there next week.
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