Bone Mets Thread
Comments
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Kiwicat - the kittens and cats are so cute! I suggested a rescue cat to DH today, but probably not happening as we are going to try and stuff all our traveling into the next six months...
Momallthetime - I take the letrosole and Ibrance with dinner at 6pm. That way I can sleep through most of the SEs. For me these are mostly the hot/cold issues. Even at the end of the cycle it hasn't felt terrible. I'm able to keep going throughout most days as long as I stay ahead of the bone nets pain and get a decent night's sleep. Compared to some of the SEs with other cancer treatments I feel these are pretty manageable.
Others are finding the noon dose works better for them. Dani can change it up after the first round if she would prefer a different time. Just my experience for what it's worth.
Have a good week ladies! Maybe there will be a time out on BC drama for all of us this week :-)
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Thanks so much lwrite - bcs i know they were saying something about having vivid dreams, and i know she does not sleep well, i am trying to avoid more problems. I was wondering if she already went through the hot flashes faze to due forced menopause would she still have the hot and cold now? Oh, we really looking forward for good results.
Terre we have cats coming to our porch all the time, i think it's w families, it's so wonderful what you do. Thx for the support.
I am still looking for advice, by tomorrow morning she is waiting for me to let her know what I found out, I told her I was looking into it. We'll see tom morning what the PA will advice. I find they don't know as much as those actually going through it.
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momall... Please post on the Ibrance thread. You'll get TONS of advice over there.
I take mine after dinner. She'll probably have to try it a few different times of day to see what works best. I started in the morning, moved to lunch and finally settled on after dinner.
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Oh my gosh, Stafojoy sweetie, I was just typing in that thread. Yes, you are all terrific amazing people!! Thanks so so much for the info, AND the tidbit about that thread. the night business I am just a little scared bcs some ppl commented that they did not sleep well bcs of it, but so every week has to be the same for 3 wks, or it could be changed before the course of the 3wks?
I still did not find women that were HER2+ also and taking that. From the readings I have been trying to ascertain this is a real gamble because they have no studies. Agh.
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Oh mom, I'm so sorry you are in this situation with your daughter. I moved the time slowly. I started at breakfast, for about a week. My breakfast tends to be late anyway. When I didn't like that after a week I moved it just a few hours to lunch. Did that for a week.. Didn't like that so after another week I pushed it a few more hours to at dinner, which later became after dinner around 8 pm. I know they say take it the same time every day, but I think that is for consistency and so you don't forget and get all willy nilly about it. The first few months on Ibrance I did have trouble sleeping, but the last few months I have been sleeping really well.
Hope that helps just a little.
Stefanie
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Wow Hindsfeet! How terrifying that must have been, and I'm so, so glad you've had relief and no side effects.
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hindsfeet,
Thank you for updating us. I hope you continue to do well and are pain free. Belated happy New Year and glad to see you post here
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Hindsfeet, thank you for updating us. I'm glad they successfully treated the brain tumors and that you're able to be more steady on your feet. Did you find the gamma knife hard? Will they radiate the skull mets? Praying for everything to calm down for you and for better days ahead. (((Hugs)))
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lindae. (((Hugs )))
Annie is that a new avatar pic? My memory is horrible. You look awesome
Hindsfeet. - glad radiation helped. Good to see you
Terre. - sweet kitten rescue pics.
Momall - I take Ibrance at night just because it's convenient for me. Have tried many different times but didn't really see any difference. You should check out the Ibrance thread.
Off to another hard morning. Sore throat, ear ache. Nausea and big D , exhaustion . boo. Very cold here . yesterday I don't think it got above freezing. Today we are supposed to be above freezing but with the wind, I expect it to still be cold for me.
Hugs to all
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Big hugs to you too Patty! Hope all these symptoms disappear soon!
I've been mostly lurking these days, I realize I have to take a little break from the boards. I stay up to date on this thread because you are all so dear to me and I love you all. I hope to be able to give my 2 cents soon and in the meantime you are all in my thoughts and prayers.
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Hi ladies,
Sorry I haven't posted but I never heard from my oncologist. She never called me on Friday like her nurse said she would. I already left a message this morning on their voicemail. It's been a rough weekend and today is rough again. The pain is bad. I can't seem to get it under control and if I do, then I am extremely sleepy. I'm at work now but being very nonproductive. Perhaps I misunderstood the nurse that I would hear from the onc on Friday. This emotional and physical crap is draining me. I'm strongly considering going on disability. Working is getting harder and harder. All I want to do is lay in bed really. Let's see if anyone calls me today. I had also requested at both scans that a copy be sent to me. I hope I do not get something in the mail before onc has a chance to call. It's upsetting me that I've had to wait when she said that she would likely have the results on Friday. I don't want to dwell on it but you guys know how it is.
Thanks for all the photos of the animals! I went to the animal shelter this weekend to see if they have any fosters available but they don't at this time. They said it picks up in the spring and they will call me. Something to look forward to.
Lynne-so sorry your husband is back in the hospital, that really sucks.
Patty-ugh, sorry you too are having a rough day.
I've decided I'm going to try to make green smoothies. I had my coworker bring in a little for me today bc she makes it every morning. I had it so at least I had my veggies today. So sleepy...
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Hello to all,
Patty, yes that is my new avatar of me and my eldest daughter. We took it at her 24th birthday celebration. I'm sorry to hear that you are not feeling well, ear aches are horrible, I had a nasty one last month that had me in tears. Sending you feel good hugs and hoping the nausea and big D settled down quickly.
Linda, you will always be in our thoughts, whether you are posting or not. We totally understand how you feel, and we're here for you!
Cristina, I know the wait is agonizing, so sorry you haven't heard anything yet but my prayers are that no news is good news.
Just a couple of hours ago my youngest dd's friend came over and we were all going to head out for brunch. She passed me a gift bag which had a beautiful quilt that her mom made for me. I was overcome with emotion and broke down crying. Her and my dd just hugged me tight. I've never met her mom and was overwhelmed by the kindness of strangers. I feel so blessed.
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Cristina--waiting sucks! Sorry.
Great idea for green smoothies. Anyone have any good recipes? I'm trying to start the year out healthier and cut out added sugar. I have a wicked sweet tooth. I like beer too. I finally have gotten myself down to a lower alcohol craft beer now and then (one in 2 weeks maybe).
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Annieoakley--I'm sitting here with mine wrapped around me. I got mine from a teacher colleague whose church group made it. So wonderful. Mine has knots in it that were tied while they prayed. When I was in the hospital a couple of my nurses knew what those quilts are and added a couple of knots.
The chicken on there is because for 25 years I carried a dead chicken keychain at school (Middle school--ya just have to go with the goofy) and when I left (retired due to BC) all the teachers wore dead chicken tshirts for me. Totally baffled the kids-haha.
Good vibes. Quilt power!!!!!
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Ellelou, good vibes and quilt power indeed! Your quilt is beautiful and so special because it was made with you in mind, I love the chicken! I was so floored by the act of kindness I couldn't stop crying. Without her mom even knowing, every colour in that quilt exists in my decor. I can't wait to use it, my cat has got her eyes on it though!
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I like the colors in your quilt. My mom was a quilter who sewed everything my hand. I mean everything. She stitched all the shapes together by hand, etc. Blew my mind. I have some large truly beautiful ones made by her and cute baby ones she made for my girls. She would embroider in an inscription to the person she was giving the quilt to -like a short poem (original). She used earthy colors the most.
I can cross stitch, needlepoint and sewing machine sew but that's it!
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Ellelou, your mom's quilts sound amazing and to embroider a personal inscription is such a heartwarming gesture. My quilt is gorgeous but I think seeing the prayer and my name on it is what got me, I still have a lump in my throat. You're a lot craftier than I am, I can cook though so I guess I've got some talent. Here's to many years of enjoying our quilts!!!
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Annieoakley--Here here! Yes, here's to many years!
The fact that your friend's mom made that quilt for you personally makes it so special. It gets you I know.
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I'm glad I'm not alone w the sugar issue! I just ate a bunch of lifesavers at work.
I didn't mean to and before I realized it I was eating them. It's going to be a lot harder than I thought. I will get some ingredients tonight on the way home from work for smoothies.0 -
Just an update..my brother got his PET scan results today...there are new bone lesions in his spine. So Gemzar didn't hold him off. She wants to switch him to Doxil. I'm so disappointed.
Prayers to all. God bless.
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Christina just keep in mind every bite of sugar you give yourself fuels the cancer on. We can trick it a little by substituting more complex sugars like coconut sugar or maple sugar anything is better than the white stuff. I like beer too once in a while I will treat myself to one. No sugar though we can do this ladies. Hate cancer so much I picture it starving that's my visual.
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Though I'm not encouraging mass sugar consumption, I hope that a bit here and there fuels no great guilt. I probably consume a tad more than I should, and it makes me happy. The happiness has helped me keep a positive attitude and decreased stress. Notgoing to change habits that have given me 4 years of NED and a normal life 😊 Moderation !
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I agree with exbrnxgirl, moderation is key. I aim to minimize added sugar but selectively enjoy some sweets that bring me pleasure and don't beat myself up about trying to eat "perfectly". For me, if I try to eliminate something completely, it will end up backfiring and I end up eating more of it in the long-run.
My sense is that if the relationship between sugar and cancer were that simple, 98% of Americans would have cancer.0 -
I am not saying we need to stop living. We do need to admit there are a lot of empty sugar calories that we don't need for example pop or sweet tea. There is a reason that cancer is on the rise on par with obesity. It's up to each person of course that's obvious but the information is out there to do with as we choose
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Lovingisliving, so sorry to hear about your brother's pet scan results. May I ask how long he was on the Gemzar before they re-scanned? Prayers that Doxil is the treatment that is effective for him. I can imagine how disappointed you must be but have faith that things will turn around for the better.
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Lovingisliving, I am sorry that your brother has experienced progression. I have read about others who have had success with Doxil. I hope that it helps your brother beat that cancer to a pulp. I will keep you and your brother in my prayers. He is lucky to have you there to support him. I know that type of support makes a difference.
Lynne
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Lovingisliving, I too am very sorry to read about your brother and his progression. My dad had male bc in the '90's, so I have a soft spot for the men who face this disease. You are a wonderful sister to come here and share his story. I also have been on Doxil, and found it tolerable as far as chemos go. I had more skin problems (rashes, hand/foot syndrome) than nausea/vomiting. It was also effective on my spine mets. I wish the same for your brother.
Sending best wishes to everyone here. As far as sugar goes, I won't give up my cookies!
Rose.
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Lovingis - bugger! So sorry they are switching his treatment. Sending good thoughts his way.
Patty - sorry you're unwell.
Cjanet - the waiting is the worst!
I am being exceedlingly lax today...I worked 14 hours yesterday and I'm exhausted. Just waiting for an email to come in, then I'm going to the hotel, ordering room service, and watching tv until I go to bed about 8.
Love the quilts! I had a prayer quilt made for me too -hot pink and purple!
Sending hugs and love to all,
Terre
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Terre, I remember the picture you posted of your quilt, it was beautiful! I thought I wish someone could make me a quilt and my wish came true, I was floored. You work so hard, I can only imagine how tired you are. Enjoy room service and rest well tonight!
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I take Amazing Grass Green Superfoods acai berry flavour. It's a shot of intense nutrition and it works better for me because it's so easy. You just put a scoop in a glass of water. I find it mixes better if you leave it until it naturally sinks to the bottom of the glass, then stir it. You can even get it in individual sachets if you are travelling.
I find it difficult to develop and maintain healthy habits while dealing with depleted energy levels. (My energy levels were never thst great and my husband works shiftwork, so I have no routine and my sleep levels are affected)
I'm calling this week a transition week to incorporate my supplements again while replacing my food choices with better ones. It might stretch to two weeks...baby steps! :-)
This week I want to do my FOCC every day, although not necessarily for breakfast, take a salad to work (I find that tough), and add back in my supplements, building up so I don't shock my system. Hopefully I can make those a habit, and then keep adjusting.
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