Bone Mets Thread
Comments
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Such kind words, M. I read your whole message how my mom would talk to me when I used to worry about my grades in school. Comfort and love in every word. And I can't stop crying now.
I will keep strong for her and my dad, who has not shed a single tear in front of us and is upbeat about the whole ongoing treatment. I'm getting most of my strength from him and how he's dealing with this whole situation.
My mom is a warrior. She has dealt with depression, anxiety and high blood pressure for 30 years now. And now this. God is watching. And like always he has a plan.
Thank you
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Hello Illimae,
Thanks for taking out your time to reply to all my questions. Very happy to know your treatment worked on you. I will pray you stay happy healthy and active
I guess I'll never be out of this shock. There is absolutely NO ONE in the family (or even in the distant family) with the big C. Never in mywild dreams I had thought of this happening!
But I'm happy I found this group.
Thank you again
P
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i had Kyphoplasty on three fractured vertebrae. I also take 30 Mg's of morphine a day. Yes to both! But it took a while for the Kyphoplasty to seem to give me relief but I believe it did. The process was no big deal and minimum pain. I say go for it.
I just got diagnosed with new mets to my ninth left rib and had a single zap yesterday. Now THAT knocked my socks off! But my lovely onc was so reassuring that I just have to trust him and walk on. To the newly metatstatically diagnosed....I have found the trick to be learning to live with uncertainty...Well. it took me a couple of years but I think it's helped me in all areas of my life. A bonus. Love to you all. Thanks for listening
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Here4Support,
Everyone on this thread is SO helpful and compassionate. Every one processes this sh*! in their own way. Because of the sheer sense of shock, the first few months are truly the hardest as you navigate thru a new "routine" in life. If your mum only has bone mets, it will indeed be easier to keep it under control, and she should have many, many years to look forward to.
I'm not going to sugar-coat it for you. It will STILL be damn hard. Bone mets can be very painful! At some point in time, she may have to have radiation. Don't be freaked out by it. It works! I've had my spine radiated twice, and I went from wheelchair, to walker, to just a cane for stability (I don't use the cane that much when I'm home...only when I'm out and about).
I can still travel. I went to Palm Springs in January, going to Carmel/Monterey this month, and flying to Hawaii in October. I'm not letting Mr. Cancer beat me, and I'm sure your mum won't let him beat her either.
Take care, my dear, and you are such a special daughter to be seeking support for your family.
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Lynne, I'm doing a happy dance on my bed right now! Such great news, you deserve a freaking break!
Wendy, that sounds awful getting too high. I've been playing around with a few edibles as well. Would love to find something that helps with sense of well and eventually pain being and doesn't get me high. As Lita pointed out you do have to be very careful..
Lita, good info on this subject. Your awesome! I love Carmel! All the little shops with the thatched roofs....and the ocean of course!
Cure-ious I am insanely jealous of your trip description right now. Paris is my dream destination and perusing art is my favorite thing. Have a wonderful trip. We are trying hard to do this soon but have to get through DD's wedding and DH back surgery so we'll see.....
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Artist- you must go!! Currency exchange is really favorable to the dollar these days, and if you look around there are some amazing airfares! Cheap european airfares to get around, like Ryan Air or EasyJet. Plus with sites like VRBO you can rent a two bedroom apartment for family for prices less than hotels. I am here for a meeting, but afterwards my DH and DD (still in college) will join me in London, with her boyfriend who just graduated collega ( this trip is his graduation present) and we'll stay in apartments in London, Paris, Strasbourg. After cancer, I gave up worrying about cash flow (DH does a good job with that anyway) and what can I say other than, so far, we haven't completely run out of $$$. Like you, I am still working, so yeah, this is what I want to spend it on..
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GrannyD3 - Belated congrats on awesome results! Love it!
Hopeful - A warm welcome to you but sorry you have to join us. This is the best place for support, knowledge, info, etc. Treatments for stage IV have come a long way since 2004, much more options are available out there. I assume that your pathology is hormone responsive if your MO is giving you letrozole. Letrozole alone kept me stable for 3 years after dx. We now have other options to be used in combination with hormone therapy called targeted therapy. Ribociclib is one of them, Ibrance is another. Depending on several individual factors, first line of tx will be hormone therapy + targeted therapy. Your MO is spot on. Yes, sometimes chemo is used as first line tx depending on pathology, tumor load and a whole array of reasons I wish I knew but unfortunately don't have an MD beside my name lol! The first few months after dx can be a roller coaster. We're here to support you, just jump in anytime you feel like it.
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Granny D and Lynne. Great news. Thanks for sharing with us. We all need to hear about the successes
Went for my pet scan yesterday and while I have scannxiety I also have some great news to share. My dd who just got married 4/2 is expecting a baby boy the end of December. I'm over the moon with happiness!!!!!
Bab
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congrat Babs.0 -
Congrats Babs! Grandkids are such a blessing.
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View from our room at The Inn at Spanish Bay, Carmel, CA
So far my back is cooperating, but hip mets are a little touchy.
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Celebrating our 27th Anniversary. Lots of crows/black birds and seagulls. We can SMELL the ocean.
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Thank you so much Granny D for clarifying. I am so happy to hear that you had 3 good years on letrozale. I wish you great success on taxol. I had that chemo treatment in 2004 with AC and I was well until now.
Hopefl
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melmcbee - I would line up a second opinion. The abscess isn't typical of these drugs, so I would not assume that there is a tight relationship, but it is harder to kick infections once you get them, in my experience. I do think there is an argument to be made for less aggressive treatment, particularly given that you have bone mets that are, as a rule, slow moving. Gives you some time to see if one treatment or the other will take care of things, IMO. Xgeva alone is good stuff. Xgeva with faslodex maybe? Save the ibrance for later? We may have a better CDK 4/6 inhibitor coming ... I am liking what I hear about abemaciclib, but it is unlikely insurance will cover a second CDK 4/6 inhibitor if you have already been on ibrance and it failed you.
I don't see a whole lot of people on ibrance/fulvestrant PLUS xgeva, even with bone mets and we don't know much about those interactions and the total burden.
I do have a lot of question about your treatment protocol ... enough so that I would get to a second opinion doctor even with everything you have on your plate. Rule 1 in fighting cancer, you need to stay basically well if at all possible.
>Z<
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Happy Anniversary Lita, enjoy your vacation
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That's fantastic babs! A new baby....I'm envious! Happy Anniversary Lita! Nothing like a room on the ocean. Hope you get a chance to take a nice peaceful stroll. Cure-ious, yes I MUST take my trip. I have some retirement I can cash out and other resources without leaving DH too high and dry. Thanks for the good tips!
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Hooray, Lynne! Wonderful news hun.
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Micmel , Thank You , I think I am feeling just a little pit less in panic , I'm still scared but less shocked . the radio doctor talked to me for a while when he saw me crying , I think sometimes a doctor with few words can convince you and offer some reassurance . some doctors just dont seem to understand this .
Melmcbee ,doctor haven't decided the treatment plan yet , but I've started Radio , but its decided " no surgery or chemo " I mean why wont they remove it or give me chemo ? I asked if its all palliative and they are not trying to stop the disease they said no , but this is the right plan .
Thank you , Illimae and lynnwood . yes . new doctor wouldn't give a timeline too .
and Illimae about your lesions . if they are seclerotic in the bone , I think they'd have some difficulty distinguishing between a healed lesion and one that is not except by size i guess .
dlb823 , I think the last oncologist thought its in my liver too , as i have a hemangioma there , it appeared on the scan , but i had it for a few years now , he just thought as long as you having mets else where then this one is mets too , however he wasn't optimistic it seems .
Iintolight , Thanks a lot , YES it seems like a great site .Bigbhome , yes , we are in this together , sometimes i feel bad and depressed but other i feel quite optimistic .
Ladies , Thank you for your beautiful comments
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Here4support , I understand , same happened here and u seem like my daughter , I've been also diagnosed recently with bone only mets , all was okay until the diagnosis , my daughter is about to graduate from college and her wedding is soon this year , we were happy then our life has come to a standstill as well . but it's okay dear , it's God's will , I think there are things in life that we should deal with , I know your mom is a fighter just like all the ladies here . *Hugs*
I didnt get a plan , too . I started Radiotherapy , but I dont think they are going to give me any chemo and they refused the surgery option .
Ladies , anyone knows why I am not to have Chemo ?
what are treatment options ? they said its going to be hormonal and targeted therapy but mentioned nothing about chemo !0 -
Happy Anniversary Lita !! Enjoy your time
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Cograta Babs! Fingers crossed for your scan results
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Happy Anniversary Lita! Enjoy your trip
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Thank you all for the support. So great to hear the positives! I am leaning toward Xgeva but may start with the clodrondrate (is it worth it) as I don't have time to get the injection. I have a contract until sept 11 and really want to do this job! I know its crazy but I need this and it makes me happy. In september I will concentrate more on this damn thing and do what I can until. I need to keep my energy up and feel physically, emotionally well, can't afford side effects right now. Any alternative medicine?
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Thanks Babs. I value you opinion so much.
Happy anniversary Lita. Enjoy and prayers you feel better.
Starstuff I was worried about why they didnt start me on chemo when I got my stage 4 diagnosis but I learned from reading here that they hold off on that until it spreads or no other options. They can control the cancer and probably get you to ned with these other meds. There are plenty of med options before you have to get port chemo. They try to cause the least damage. Good luck.
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Hi Bone Mets gang, I am just checking in, as I have bone mets that are not causing pain, so I tend to focus elsewhere on BCO. I have pain when I lean on a bone hat has mets, but no spontaneous aching. Congrats to you, Lita, for 27 years. Its miraculous that anyone can live 24/7 with us for a zillion years and stay reasonably content. I am so grateful for my husband's support and love. Enjoy your trip!
I,too, appreciate all that people share here. I am learning so much, and I love the tone of support that you share.
I am going to have a third Doxil infusion at month's end. I had a major drop in energy from days 11 to 15 this time, so I am hoping that doesn't get any worse next month. I have some biopsy results that are still not in, re: a small mass in my neck that seemed suspicious to the docs. I am so sick of waiting, that I am just plunging into denial, and staying active, now that I don't have to nap all the time. Seize the day!
Warm hugs, Mame
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Z: I am on palbociclib, fulvestrant, and Xgeva. My mo has changed the Xgeva to every three months with the addition of palbociclib and fulvestrant. I have lung, bone, and liver mets.
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Babs, wonderful news. A new grandchild, what a blessing! Praying for great scan results!
Lita, Happy Anniversary! Enjoy your trip
Thank you, Ladies, you are each amazing. I don't post very often, but I follow you each and every day. You all inspire me! I rejoice with you, I cry with you and I pray with you. I am sure there are many like me that check in every day but don't post often. Your support for each other is amazing!
Diane
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Thank you Melmcbee .
Well , I am to meet my oncologist soon to discuss the hormonal and targeted therapy .
what do you think i should know before such an appointment ? i want to know the types of drugs and which to choose , i want to be able to discuss him and suggest drugs or ask about them .
I left Iraq and I am taking my treatment in Lebanon , for several reasons I cant trust doctors fully anymore** , I want to be informed and to be sure that I am taking the best treatment is there . I don't want to take an outdated treatment that's why I am asking , I want to know how you were treated and compare and get to know if mine is efficient .
** for this trust thing , I dont know if its in my mind or it's true , I wish its not . but sometimes I think " why would my stage I BC spread ? maybe I didn't get the right treatment ?! "
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starstuff,
I can only respond to part of your comments. Before my mbc dx I had Stage 0 bc twice. 7 years apart. My MO was very aggressive with both cancers. We are not sure which one spread. There is evidence that mbc cells are circulating way before they are found. Even with "pre-cancer" which stage 0 is considered.
Just try to get as much info as you can about your particular cancer ( hormone status. HER2 status) etc.
best wishes!
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Congrats Babs!!! Such a happy thing to hear. I am thrilled for you. Lita~ there you go again rocking that hat, looks like a lovely place to be, cheers to you holding your drink. I hope you enjoy every single second. You're amazing.
Here4support~ your mother is very lucky to have a sweet loving daughter. Just take a deep breath and help her realize she has her support system in place and she is safely with you all. She's not going anywhere anytime soon. It's just going to be what they call a battle. Lita is one of those ladies I was talking about when i meant good information and experience, my mets in my back hurt also, I take 5mg Percocet a few times and a day to help take the edge off and it works great, she is right though, they do hurt. But then again life hurts. Remember, you , that precious baby and her DH (your dad) Is her world, and as long as you support her and she knows you're there every day, she will take the time she needs to adjust to the shock. We are all here for you. Big hugs ~M~
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