Bone Mets Thread
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@ Casen19I'm sorry you are having to deal with this also! It has been the hardest thing to face for me. Are you on treatment yet
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Welcome to all of the new members! Sorry you have to be here but I always say that you will learn more here then any doctor can ever tell you. Many of us are doing well, once you get your treatment plan in place it gets a little easier.
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Hi I'm another new one for the thread. I've had bone mets for 6.5 years and still doing well. Once you have a plan for treatment and have the pain under control it does get much easier. Best wishes to all those new to dealing with this
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welcome Beatirx and happy belated birthday from Canada.
Jen gorgeous pic enjoy the sun. Funny I was thinking about this whole cancer thing the other day. I feel so heart broken for those in pain and suffering. I have today for me cancer so far has been a wake up call. I'm so happy and fit (besides cancer) if my doctor wouldn't keep telling me I'm sick I would be on top of the world. I think more positively then I ever have and I enjoy every minute. I think this is how I was meant to be all along. It's your husbands loss Jen you are a beautiful soul. Enjoy the volcanoes
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Jen, wonderful picture! Hawaii is someplace I've always wanted to go. Don't know if I'll ever make it, but it looks beautiful
I've been reading along, to those who are new, you have found the most wonderful women. They will help you through the bad times, and be there for the good times too! It's very difficult just being diagnosed, as everyone of us know. I don't have small children, and can only imagine the worry that must bring with the diagnosis. You will all be in my thoughts and prayers.
To those who are getting good news, YEA!!!! Hoping and praying my scans in January will give me the same. Although I'm having some pain continuing in both hips, which worries me, but will wait and see what the scans say.
To those with progression, you are in my continual prayers! Hoping and praying that we all find some solace soon in good scans and stability!
If I don't get back in before, Merry Christmas, and if you aren't Christian, I hope you also have a wonderful Holiday
Blessings.
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I cried reading reading the post from all the new people. Xmas shouldn't bring this news to families. It reminds me of my diagnosis on December 20th last year which was like being punched in the gut.
FWIW, I did not hide anything from my girls who were 9 and 12 at the time of diagnosis. I've brought them through the whole process from crying melt down on day 1. They've come to understand the situation along with me. No scripted conversation. I just tell them what I feel and know at the moment. They tell me what they feel. Although not what I would choose, the year has been an amazing parenting experience.They are my rock.
That said, it's a year out and I am doing well. Not quite Wendy's level of fantastic, but better than I expected and a good life. I don't expect to die of this disease. My priorities are a whole lot better organized. I am hopeful that I will look back some day and see this as a blessing, but not quite there yet.
Merry Xmas everyone. Take a break from cancer. It will be there for you in the new year.
>Z<
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Thanks Freya for sharing your story. For the newly diagnosed it is inspiring to see this. And I love that there is a wealth of knowledge on this board to help guide or bounce ideas off of.
Misty - during my stage II diagnosis, I had bilateral mastectomy and AC/Tchemo. But since the stage IV diagnosis they immediately put me on tomoxifen plus xgeva,and told me to get my ovaries removed by January. Then we rescan in February. I am also supposed to see the radiation oncologist to spot treat problem areas....Cancer is ER+/PR+ HER2-
PM me if you want to talk!
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hi all!
So far behind again...
Happy belated birthday to Beatrix! Jen the pics look great, I'm jealous, wish I was there.
Linda, fantastic news.
I know I'm missing a bunch here, but I'm just about to get on the ferry so I must run. Welcome to all the new ones here, I wish you didn't have to join us. Everyone else , ((hugs)) cheers de
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Welcome to everyone who has recently joined us. I am sorry you have reason to be here, of course, but you have found a wonderful group of people. As others have already said, the first few weeks and months are the most difficult to deal with. The changes are traumatic, and we seem to focus on the worst possible scenarios during those early days. We have all been there, and we are here with open arms to give you support and answer questions. My life has not changed dramatically since my diagnosis a year and a half ago. I still feel great and continue to do what I want including traveling. I was taken aback a few months ago when I had progression not only in my bones but also into my liver. Things settled down quickly as I changed treatment plans. Things are once again under control now. I plan to be around for a long time.
Freya, 6 1/2 years with bone mets? Wow, that should have been in big bold text when you told us. That is great, and it is just the type of news we like to hear about. Woohoo! When I am down or worried, I will think of you and will be encouraged. I hope you continue to feel well for many more years.
Happy birthday to all of you who are celebrating this month. Did you ever feel that your birthday was overshadowed by the holidays?. My youngest granddaughter will turn 1 on Christmas Eve. One of my sons' birthday is December 27. I recently asked my son if he felt cheated having a birthday so close to Christmas, and he told me that he did not. In fact, he thought that people felt bad for him and overcompensated. Ha!
Hugs to all, Lynne
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Rachel, Thank you for posting the picture. You did it again, I am smiling. Your daughter's first semi-formal? How exciting. Did she enjoy every minute? Your family looks wonderful in the picture. How do you do it? I think that my family pictures always had at least one person with eyes closed or looking away from the camera or with a weird expression on his face. Your family always has beautiful smiles and looks fantastic. Keep those pictures coming.
Hugs, Lynne
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Lynne,
My grandson's birthday was yesterday. My DH's istoday. My grandson particularly embraces it. He just turned 16. He thinks all the celebrations are for him!
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Hi Everyone,
I'm still new at this so I don't have much advice. Just wanted to thank everyone for all of your posts. Hoping everyone has a good Holiday and thank you again for all of the support you share. It gives us all hope and helps with the fears and ups and downs!
Hugs to all,
Anita
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I have read so much informational tips on this page. I wanted to see if anyone does a special diet or supplements? I have been trying to cut out meat and sugar. Didn't know if it really helps but it is all I feel I can do to help!
I love reading all the supportive posts! I've been so scared since being diagnosed. I have been feeling a bit paranoid anytime I feel a pain or soreness now. I have not really had any symptoms. Mine was found on a scan that I was having done for peace of mind. I am now noticing soreness in my back. I have 5 places on my spine. I just feel soreness in my muscles not really pain in my spine. Is this normal?
Thanks,
Misty
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Lynne, I have been on 75 mg vibrance for 4 cycles and my scans were improved on liver and showed a spot on my spine that was necrotic which she says the medicine apparently took care of. So sorry for all the newbies here, especially young Moms. but as everyone else says, it does get easier when you read others experiences and realize how many people go a long time. Apg, Ironically ever since she told me about a spine met I feel like my back is sore too! I think it just made me focus on how it was feeling and suddenly the soreness from probably me sitting too long at a desk seemed like a "NEW" symptom.
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Hi Misty welcome here with us in the group nobody wants to belong too. Yes continue the diet change I think it helps a lot. I cut out dairy (because of all the hormones ) red meat I actually rarely eat meat now, and of course sugar. Doesn't mean I don't cheat once in awhile but over all it's done for me. Supplementing is huge you want your immune system to be working at peak level. Also Excerise as much as you can very important too. Knock on wood so far I'm pretty good. The changes are all hard but I feel good knowing I can contribute to my health. Good luck
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Lynne, YES, when I was little I really felt gypped by having a b'day so close to Christmas. I'd usually get ONE gift, and the classic line, "This is your birthday AND Christmas present..." I always wished I was born at least a month or two earlier, but then I would have been a preemie, and no one wants that!
Nowadays, I really don't care - too old to care, I guess. My husband doesn't usually give me b'day gifts, altho b4 Mr. Cancer, he'd always take me to a nice place to eat. Can't eat sushi anymore while I'm on chemo, so no hamachi/hotategai extravaganza for me this year
(. The Xeloda makes me nauseous at times and I get diarrhea, too, so I really have to watch what I eat, even on OFF weeks when the toxin levels from the chemo have built up. This is a busy week for most of us, so everyone have a MERRY Christmas and a HAPPY Hanukkah!
Lita
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@wendy3 I have also cut out dairy too. I've been doing yoga with my friend who recently became an instructor. It helps a lot mentally and physically. I need to do more though. I hate that it is cold out and I can't get outside.
Artistathea, I am glad I'm not the only one that has felt that way!
Misty
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The exercise has helped me feel good...with fewer side effects and tiredness from the drugs. I cut out refined flours/breads, sugar and dairy, stopped drinking completely and cut way back on meat, but kept the fish. Reduced fried foods to reduce inflammation, too. I met with an oncology nutritionist and she had no concerns about soy in foods (I'm ER+), but I don't eat much of that either. Honestly it feels so much better to eat healthy that it hasn't been a huge burden. It's more of a challenge when cooking for a family!!
I also take a number of supplements, which she felt were ok. B12 due to low blood counts on Ibrance, Turmeric, glucosamine for joint pain relief and a few others. I drink a small glass of lemon juice and warm water every morning to help my liver and I do use frankincense oil/almond oil on places where there are hot spots or pain.
Another thing is that when I exercise everything hurts...I think of it as good pain and have decided it means I'm getting stronger :-)
Doing these things has given me a sense of being somewhat in control. If that is all it does,it's been worth it to me. My dosage was dropped to 75 mg of Ibrance and I'm on cycle 13 this month.
Hope everyone is enjoying some (however small) holiday cheer this week!!
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well said Iwrite I feel the same I'm doing something to help my body fight. Gives me a sense of purpose and power and strength.
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I agree with you guys 100%. I've completely changed my diet to mainly vegetarian with some fish. I've cut out dairy and sugar (apart from occasional treat). Cut way back on alcohol (but haven't stopped red wine!). I found the Life Over Cancer book very helpful as a guide. I take Vit D and eat a huge amount of veggies. Ironically, I feel the best I've felt in years!
I also believe that exercise is critical to overall wellbeing. If you're not used to it, the important thing is to start slowly and build up. But even more importantly is to do it every day. Once it is a non-negotiable part of your routine it becomes so much easier to maintain.
Like you guys, it makes me feel good that I'm doing everything I can to help my body confront this disease. That alone means it's a worthwhile approach!
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Yes, ladies...we have to do EVERYTHING we can to fight this metastatic beast.
Because of my pill-form chemo, I can't eat any raw vegetables (you just don't know what bacteria, fungus, etc. are on them even if you wash them) so I eat them steamed or roasted to retain as many nutrients as possible. I try to stay away from processed sugars and mostly eat fish (but no raw sushi - BOO!) and poultry because one must maintain one's muscle mass. It's ok to eat a little bit of free range, hormone/antibiotic-free red meat to help build one's red blood cells back up because chemo depletes those cells.
Once I go on aromatase inhibitors, I'll be modifying my diet again. Because I have compression fractures in my ribs and spine, I have to be careful not to overdo any exercise, but I do walk a lot.
With the holidays here, I'm trying to keep up with my healthy habits, BUT I've made homemade cookies for gifts and I am going to have a glass of wine or two at Christmas and New Years. After I was Dx'd in April, I didn't touch wine (I'm not a beer or spirits drinker anyway) because my liver is being challenged enuf with the chemo and other drugs. MO said I could have a glass of wine once in a while on my OFF cycle weeks...just don't overdo it, that's all.
It's all about quality of life. If eating a piece of cheesecake once a month does it for you, go ahead...just don't eat the whole damn cake! Same with everything else. If having a glass of wine with a dear friend helps once in a while, do it...just don't drink the entire bottle ;o).
Everyone enjoy the holidays!
Lita
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well said Lita!!
And I'm with you on the cookies...I made shortbread and gingerbread with my kids. They were supposed to be for gifts but we ate them all! Wouldn't have it any other way...;)
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Good for you, MSL!
DH wouldn't mind me making cookies all the time now, ha ha. He says, "If you use real butter and unprocessed sweeteners at least we'll know what's in them...no hydrogenated fats or high fructose corn syrup."
We always make our favorite M&M cookies and to keep it healthy, we do oatmeal raisin walnut and oatmeal dark chocolate chip. I also make sugar cookies for my brothers, but I don't like them as much. They're fun to decorate and look at but I prefer a cookie with a little more complex flavors. I do love shortbread tho...all that BUTTER - what could be better?!
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Yes! I love butter! I'm having a hard time giving that up I can tell you (translation I haven't given it up yet)
And champagne!!! I love champagne. But I'm saving it for special occasions now (sigh). I miss it. I miss it!!!!!
Anyway, there's much to be sad about, but much more to be grateful for. Like cookies with your family at Christmas. Cuddles with your kids. And you guys.
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I love champagne, too!!! One of my favorites is Domain Chandon Blanc de Noir. It's dry, but not too dry, and has the palest pink shade. It's just lovely. I've had some nice Spanish Cavas also.
I'm going to have a glass of champagne with DH and DD (she's over 21) to celebrate Christmas. I figure, "Who knows where I'll be next year at this time?" (I'll just make sure I don't swill down the whole darn bottle, he he...)
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Well at least have 2 glasses if not the whole bottle!
One trick I was taught is to put lots of ice in your glass - the champagne lasts longer, stays nice and cold, and means you're getting some water as well....that's what I tell myself anyway!!
Enjoy xxxx
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Now I am craving cookies, warm, homemade cookies!
I have certainly cut back on sweets since my diagnosis, but I see no reason to give them up completely. I am not going to allow MBC to take away everything I enjoy. Everything in moderation, right? I never did drink alcohol, so that was not a problem. I cut way back on red meat and only have grass fed beef when I have it. I have always eaten lots of fruits and vegetables, but now I buy mostly organic. I have decreased intake of carbs but not eliminated them.
Artist and Kathryn, Thank you for making me realize that dropping down to 75 mg of Ibrance is not a bad thing. As it turns out, today my neutrophils are high enough to start my fourth cycle of Ibrance, so I can stay at the 100 mg dose for at least one more cycle. I suspect that I will someday have to go down to 75, and that is fine, but I felt that doing that after only 3 cycles would be discouraging. It was hard to think that I would continue on Ibrance very long if I was on the lowest dose after only 3 cycles. If it happens next month, so be it. For some reason I would find the decrease easier to accept after 4 cycles. I don't really like taking these long breaks between cycles.
Lita, One gift covered both Christmas and your birthday??? You poor thing. YOU WERE GYPPED! I hope you find some way to have a spectacular birthday as well as a wonderful Christmas this year even if you celebrate them both on the same day. I am sending festive thoughts your way, separate thoughts for each occasion. Picture colorful confetti, birthday hats, a cake covered with roses made of delicious buttercream frosting, and a boisterous rendition of "Happy birthday to you" as well as festive evergreen garlands decorated with bright red and silver ornaments, a beautiful nativity set, a big bowl of eggnog, and a choir singing your favorite Christmas Carol.
Have a good night everyone.
Lynne
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Lita...two celebrations are definitely in order. Sometimes it's good to buy your own lovely gifts, too.
Wait a minute...I'm supposed to give up butter??? No way! If it isn't white it doesn't really count as dairy imho:)
I'm going to try sparkling grape juice mimosas on Christmas. I'll report back, but guessing they will be sweet. Ah...champagne...and tequila. Oh well...I did enjoy them for many years
Cleared to exercise again...yay! Still no swimming, but maybe after the holidays.
Scans next week - including brain MRI...I may be drinking the real thing when those are over. 😜🍾
You all make living with this sooo much better! Thank you<
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Haha Lynne, You are so cute. Love the birthday tribute! Today I did some Bailey's in my coffee when a friend came to visit. YUM! I can't even do dairy any more except greek yogurt with some fruit. Milk upsets my stomach now for some reason. Sweets during the Holidays is hard to resist but just a little goes a long way for me. Red meat does not do my stomach much good either. After the Holidays and after we move I hope to get back on a healthy cooking spree. MSL, that is how I used to drink light beer, on ice! Great thirst quencher, less calories and longer to get a buzz! Good luck on the scans Kathryn! Always a stressful time.....
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I did cheat today, we had our office Christmas party! I hadn't had anything sweet in over a month. It actually hurt my stomach. I will be good most days but I just feel you have to enjoy it on special occasions 😁
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