Bone Mets Thread
Comments
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Ronnie, I was on Anastrozole (generic Arimidex) for seven months. About five months in my knee pain just got worse and worse until I just didn't want to walk at all. I didn't think to try Claritin at the time, but complained to my onc, so she switched me to Letrozole. I'm five months now on it, but doing much better than before. I'm also having acupuncture which I wasn't when on Anastrozole, so maybe that's more the difference this tiime. Good luck.
Thanks Deanna for the updates on Carol. I have been thinking of her and wondered if she had just taken a break. Glad to hear she's doing better. So glad you're out of the hospital, Patty, and feeling stronger, too!
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Last nights pre-wedding party
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babs~ such happiness. God bless you and your family. So beautiful. Thank you for helping me smile today.
~M~
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so beautiful, bags. Makes us all smile to share your joy!
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Thank you for your reply I sincerely appreciate it.. I have added Tumeric 500MG to my nightly med regiment in hopes it will help with the joint pain.. I will let you know if I feel any difference. I am wishing you better luck with the Letrozole.
God Bless,
Ronnie
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Babs, I love the pictures. Thank you for posting on this special day.
Lynne
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Ronnie - give that a shot. 500mg may not be enough. First you need a bioavailable form of curcumin, one of the liposomally encapsulated formulations. Longvida is one good one that I use. Second, you may need more ... my CO has me on 2000mg of curcumin. If it doesn't help, you can try increasing both the bioavailability and amount. I am doing pretty well on 2000mg of Longvida curcumin.
>Z<
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Hi Z,
Can you please let me know what brand you use of Longvida curcumin.
Thanks,
Ronnie
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Longvida is a proprietary preparation method. It is sold under multiple brands. I just bought this stuff. I'll take one in the morning and one in the evening. But any curcumin prepared using the longvida method is the same.
The key characteristic is liposomal encapsulation to increase bioavailability. Longvida may not be the only way to get that, but I haven't bothered doing the research to figure out if there are other viable options.
Curcumin prepared with pepper (bioprene) also increases bioavailability. I don't believe it is quite as good, but much cheaper. Definitely worth trying if what I am suggesting busts your budget. We can only do what fits in our our budget, and that's fine.
>Z<
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Babs, what great pictures! You all look so happy, it made me smile. I absolutely love your outfit!!!!!
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Beautiful photos, beautiful family, Babs! So much happiness radiating from everyone, and you look amazing!
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babs...absolutely gorgeous photos!
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Thanks for sharing Babs. You all look so happy!! Handsome couple.
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babe, Really good photos! everyone looks gorgeous! What a good time!
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I went for my final Doxorubicin infusion last week but I was so worn down and my bones in so much pain my MO decided to give me a pass and send me right to the RO. He set me up for 15 sessions of radiation to various spots on my spine. I've had 2 already and it's too early to feel much if any relief.
I will have my final chemo infusion after radiation towards the end of April, then we will see how it goes. I can feel the difference with no chemo. It's been almost five weeks since my last treatment. I'm coughing but have no chemo s/e's. I'm looking forward to seeing how things go after radiation. It will be such a treat to be relatively pain free and thinking normal.
Best wishes to everyone. 🐱
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Babs, beautiful pictures!
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Noni~ I so know how you feel. With that chemo, you just seem to be in a fog. I pray that you will feel more like yourself soon. For me it took months. So please be good to yourself and rest when you need it. I have been done heavy chemo since October and I never want to have it again. No matter what , I've already told DH,DD,Ds'S that I am never going to loose my hair again. I can't go through that again. I feel all of the things you ladies feel everyday. I am keeping you all Close in prayer. Last week was great, then Saturday my hip/ back area has pain, now I realize I haven't excersised nearly that much in over a year and two months, so hubby says it's muscle. But it scares me to think that it feels just like all the other bone places I'm already in pain from on and off. Not to mention that one of the biggest side affects of anastrazole is back pain , it's enough to drive you mad. This disease is cruel and I hate it. Every single second since, has ruined my life, my plans, and who I am. How does one ever get that back.? I guess I can just pray for another half decent week. Scans in the first week of may. So it's drink that crap that tastes like hand lotion, and scan, then worry, then worry another week for the results.
One big awful loop, that I can't get out of. I'm just sick of hospitals and doctors and medicines and side effects and pain. And always feeling like I have the worst flu in every cell of my being. Everyday, Wow!I guess it's safe to say I'm not having a good day. 😞 The pressure of everything with my mom being so sick also in the hospital and I can't be there in another state . I think I'm starting to lose my mind. Hugs to everyone who deals with this beast everyday. You're all my champions. God bless. ~M~
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Micmel, I am sorry you are going through so much right now. I know that it is hard for you to be away from your mom when she is so sick, but right now you have to concentrate on your own health and treatment. It would not help your mom if you visited her and became sick or hospitalized while you were there. Have you tried a different brand of anastrozole? Other people have posted fewer side effects when they changed brands. The active ingredient remains the same, but different manufacturers add different fillers, and some people suffer SEs from some fillers. I was on Teva's version for over a year and had a pretty good experience, but everyone is different.
Noni, It must feel good to have a break from chemo. I hope you find relief from pain with the radiation treatment.
Babs, I can't wait to hear about the wedding. You must be exhausted. Please take time to relax for a while.
Hugs and prayers from, Lynne
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Micmel,
All I offer is understanding, prayers, and gentle hugs.
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Hello to the group. I was diagnosed with extensive bone mets in Jan 2016. A little over 17 years after my initial diag of stage 2 lobular. I had had no problems in all those years. I also have abd mets and have been posting on that board off and on. My question to the bone mets group is: I have extensive mets to my skull including the bone at the base. My oncologist says that the cancer does not go from bone to brain, it has to go thru the blood or lymph system. However, when I had an MRI of my brain in mentioning the skull mets, the radiologist made a point of saying that there was no extension of the cancer into the epidural tissue. This makes me think that it must sometimes do that. Any experience/advise? My brain mri was negative for brain mets and my onc is going to do one ever 6 months to keep an eye on it. I am on ibrance/letrazole. It has shrunk the mets in my abd. I have osteoblastic mets in my bones, so onc says it it difficult to tell what is tumor and what is healing. Lots of little spots all over--no large areas of destruction. My bone scan was negative. Mets showed up on CT. Pet scan showed one area in rt sacrum that showed high intake. The rest of the mets was low. I don't really have any pain from the bone mets. Would appreciate any input. Thanks Janet
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Last night was the best I have felt in almost a year. Went to our sons for supper and then I actually felt good enough to play with the 4 grandkids. I even had enough strength to pick up the two year old, little Charlie. He was so cute he put his Mickey Mouse had on my head. The three year old finally asked me why I didn't have hair. Just told him it was because of a special medicine I had to take. He was satisfied with that. I pray I feel good because the Ibrance is working.
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Micmel you never get back that's my take on all of this . But that doesn't mean everything will suck forever things change we adapt and look for new joys. Then we live our lives stepping from one great thing to another. The people we love the friends we cherish and the activities we adapt to enjoying . There is a lot of good still there don't loose hope😊
Babs love the joy , love that you are right there in the mix of things looking so beautiful. I'm very happy for you😉
So my wonderful letrozole just handed me the last two side effects in the pamphlet...back pain and constipation yeah and here I thought I wouldn't get them all. So now I'm hoping it tips in the other direction and some of the SE will wain.
Had my next CT scan last Thursday get the results on Thursday this week and I have to say I don't want to go anymore. Sitting in the little cubicle waiting for the axe to fall. I feel I give the whole process way to much power. This is one of the very worse things about this disease this anxiety... is it in my brain? Lungs? Increased in liver? Arghhhhhh or maybe it's all gone? Back and forth I go for three more days🤡🤡
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Firstmate,
I have a little experience with the skull met issue. I've had bone only mets until just recently. My understanding was that skull mets are "just" another bone met.
I did just recently get dx with leptomeningeal mets (LM) but it has nothing to do with any prior skull mets.
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Dianarose, I am so happy to hear that you are feeling better. I hope that continues for a very long time and that Ibrance is kicking those nasty cancer cells into submission.
Wendy, I am going to think positively for you and believe that you will hear good news on Thursday. I know how you feel. I dread getting scans because I never know what the results will show. I am happier living in my little bubble of denial. As I sat in my MO's office waiting for my last report, my blood pressure was much higher than usual. I barely slept the previous night because imagery of bad news kept cycling through my mind. As it turns out, all that worrying was for nothing since the news was good. As we both know, regardless of what happens, there are people here who will help us through the difficult times as well as celebrating the good ones. I will be anxiously awaiting your news on Thursday, and I will be ready to do the happy dance for you.
Hugs, Lynne
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Wendy~ I am right there with you. I honestly am. I feel the exact same way and powerless to stop it. You're in my prayers. I am also still digging into this ibrance thing. I know the director of the clinical trials at Pfizer, I worked with him. He's a great person. Whatever he can release to me he will. He's looking into that area but Vancouver is has many studies going now. I'll keep trying Ty you all for the kind words of support You too 50s. Keeping you all in prayer. Ty for listening to my rants of cancer anger. I call it. Let's all write a book!! Ugh!!!! Sending you hugs Wendy. Sending strength and good results!!
~M~
Yay!!!! Diana yay you have been through the ringer. Clapping hands!!! Enjoy every second with Mickey Mouse!!! Yay !!
Kaption. Ty so much it means a lot. Hugs!! Back
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Wendy - My scans are scheduled for the end of the month. I already feel the anxiety building. My medical phobia doesn't help at all ... last time I passed out (BAM!, on the floor) when they inserted the IV tube for this extremely simple procedure. So, no advice, just empathy.
All I can say is that we both have a lot to live for. I have noticed that when the chips fall you do what you need to do, however distasteful, to stay well for your family. Lifting you in prayer. Whatever the scans say, you have options.
DianaRose - You got a well deserved break. Praying that it continues ... for years.
>Z<
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The wedding was truly amazing. It was a night filled with great joy and love. Even my DS and his was there and happy for his sister( they just reconciled last week). He's in the last picture with some cousins.
I have to tell you that it is so important for me to share this all of you/my bc sisters. You are ALWAYS there for me!!!!!
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Babs, your daughter reminds me of Amal Clooney, who I happen to think is also absolutely gorgeous. Such a fairytale wedding -- your daughter's dress, the cake, the setting (that fireplace!), but most importantly the smiles and happiness in every photo. I can't imagine a happier or more beautiful wedding.
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oh my gosh Babs!!! The happiness is just palpable!!!! Thank you so much for sharing!!! And congratulations
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Sorry I haven't been on in a while. It's taking time to catch up. 8 months ago I was diagnosed with bone mets. My Mo wanted me to have another pet scan which insurance refused to pay for. So today my husband paid for it out of pocket. This afternoon the radiologist called and said that I now have liver mets. My MO is out on sick leave so I am hoping to get to Dana Farber. Is there any hope out there for liver mets. Today I'm just devastated by this news. Just don't know what to say or do!!😢
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