Bone Mets Thread
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Artist~ Happy Belated Birthday . Many you have many many more many many ..... more. I get exhausted just fighting the side effects and fatigue as you all can identify with. Please know that you are in my prayers as you scan today, just look for me I am the one with the funny hair do, since my hair is growing back crazily. Why is it that we learn life backwards, but must live life forwards?. Sometimes just the word life is so hard to process because we only get one life to live, when something like this happens, we have no choice but to live and learn as we go. And then there is suffering. Emotional, physical, fear of the unknown. Ok just plain fear. Please know your not alone. Good luck at the crappie dentist. "I don't like The dentist mommy"in my sons little voice when he was just a little guy. We will all be thinking of you. Gentle hugs and many prayers for all.
~M~
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I'm having a bone scan next week. My questions are, does bone met pain come and go? Anyone have compression fractures due to a met? Do you always have to wait a week from scan to follow-up, or can they tell you then? If I had a clean CT scan 6 months ago, what are the chances this scan will find something?
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Lic~ yes the bone pain absolutely waxes and wains. Yes it does. Usually you have to wait for results. The technician is not legally allowed to give you any information. If you had a good scan 6 months ago the chances are you'll have another one, if you don't feel anything differently, also try to remember that the letrozole causes bone and joint, and back pain alone, even without cancer pain. So try to remember that could be a big part of what you're feeling. I have foot pain and I am a runner, so I can imagine that is also what could be happening to my foot, when we have bone mets our bones do weaken. Which is why supplementation of calcium and vitamin D are so important. Along with monthly shots of XGeva to help keep bones strong (any Denosumab shot) Iwas scanning last week so I am with all of you in hope and spirit all the scans will be outstanding! God bless you all. On your scans this week. Try to stay positive. I know it's hard, it was hard for me , but these ladies pulled me thrugh. Hugs ~M~
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Artist, that is so right. Trying to juggle all the appointments and even regular medical stuff gets exhausting.
I'm happy you have a counter full of love from friends and family! Enjoy. Hope your weekend is restful and you get good scan results.
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Artist, I am with you in spirit as you get your scans. I hope you don't have to wait too long for the results. Belated happy birthday to you. You and your family are beautiful.
Anita, belated happy birthday to you, too. I hope that your allergy symptoms have subsided.
Kathryn, how exciting that you had your first book published. I ordered two copies for two of my grandchildren. I will read the book before I give them to my grandchildren.
Kaption, I do hope that you begin to regain your strength and energy. You have been through so much during the past several months, and it will take time for you to rebound.
Lita, thank you for posting those pictures of your beautiful flowers. We are way behind you here in terms of spring growth. I am slowing getting out to my gardens. I have been deterred by frequent rain and my recovery from surgery. Things are getting better now, but the temperature is in the 90s today. The 90s!!! We were shivering with cool damp weather for the past several weeks. This is crazy.
I struck up a conversation with someone at my MO's office yesterday. As it turned out, she also has MBC, and is on Ibrance and Faslodex. She feels good, just as I do.
Hugs and prayers to all of you, Lynne
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Happy Belated birthdays, Artist and Anita! Nice to see an avatar for you, Anita! You look great!
Artist, it sounds like a stressful week for you. Sorry. Glad you're seeing an oral surgeon who can hopefully get you past the tooth issue. Prayers & fingers crossed for great scan results tomorrow. By the way, when I've had both CT & Bone scans on the same day -- which, by the way, I've decided is unnecessarily stressing, so may not do it that way again -- but I would get the nuclear injection first and have them put in the IV b'cuz (at least @ UCLA) the nuclear med techs are so much more expert at it than the CT folks, where I always ask for an RN but have still had blown veins. Then I would get the CTs done during that wait time, then back for the bone scan. Maybe you've done it that way in the past, but it does compact the amount of time involved, IF they can schedule you that way, which I realize can be a hassle in itself. Never easy, is it, especially when we have to add travel to the mix.
Lita, so glad what sound like the most concerning mets are stable! Hopefully, by your next scan those badly behaving boys in your bones will be more under control.
Kaption, it sounds like you are dealing with your current situation as well as can be expected. Don't start getting down on yourself. Just grant yourself all the extra TLC you need, and trust that things will turn around. I often think of Lulubee's encouraging post about all the really bad lows she's come through, and you will too. Know that you are in my thoughts and prayers even on days you're not here.
Kathryn, wow, such exciting things going on in your life! Congrats on the new job and the book! My hubby grew up on a ranch in that area, and we lived in Colorado Springs for several years. It's a wonderful place to be, especially in the summer months. And your book sounds really interesting. Congrats on getting it published! How exciting it must be to see it in print and up on Amazon!
Welcome, Licata! Glad you've found us. Waits for scan results can vary, but they do need time to compare these results to your previous images, to determine any changes. That can often be done quickly, especially if your onc requests it. But the techs doing your scan really don't even know if your current images are an improvement or worsening of your disease because they usually don't have your previous scans there to compare. That's usually done as a next step by a radiologist.
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hi Deanna and all the others who know my situation and give advice so freely..some things never change
Lauren is in MD Anderson and they told her it is inoperable
They said it can be manageable
Her biopsy is on Friday
Thanks for all the help
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Firekracker...mine is inoperable too, but I'm doing relatively ok. Once a treatment plan is in place, and she gets over the "shock" she should be able to manage it. Many women live with Stage 4 for years now.
There's another great thread "Life doesn't end with a Stage 4 diagnosis." Lots of great women, insight and encouragement.
Prayers going out for Lauren. The first few months really suck until one learns to accept it and adjust one's life. I had to quit my job, but lots of women continue to work as well.
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thank u so much Lita
Ur words were like music to my ears
I think I have the picture in my minds eye.....
Her mom is so scared she is not gonna make it
Bless u
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FireKracker there are so many ways to get this under control. The beginning is rarely the end. You are a good friend.
Kaption how about the fact that you went through such trauma. A hit then a hit, come on. You'll get some strength back and then you will feel better. We need you. It's a hiccup. Once the Rads situation settles you will see it will be better.
Lita how is your pain doing?Thanks for the view of these gorgeous flowers.
LindaE one day at a time. You will see.
Artist the rule should be it should never it all at once, but doesn't it always?
Kathryn how proud you must feel. Discussing section is a great idea. Gonna look for your book. My younger daughter is a writer, she is actually working on her first book, revision # god only knows, she works on it after work every chance she gets. What an accomplishment!
MicM why be short with words
this a s....e bigtime!Licata everything is possible. And it depends where you live, some places you could get an answer pretty quick. You could also ask the place to send a copy of the report to PCP if you are friendly with him, you may have it sooner than to MO. I do that. And yes one can have compression from mets. The most important thing is you should get tested asap so you will know what you are dealing with.
Gracie it's very very hard. Do what you feel most comfortable. I ache to be able to be here, it's just physically impossible, but I find gr8 comfort here.
Onco emailed this evening with new tx plan - Enzulatamide and Herceptin. Just a quick line, she will call me tomorrow, i'll sit and wait. It's been a week. But she said she was working on it, I believe it, but a little better communication would not hurt.
She has rads to the brain next week. Three days, not in the schedule she'd like, but they pushing her in. Gotta get some input on her treatment I hope someone had it already.
Waving to all
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Happy belated birthdays Anita and Artist!
Kathryn - I'm so proud of you, congrats!
Kaption - Too much at the same time. You deserve to be kind to yourself. Sending you cyber TLC.
Mommal - wishing Dani the best with rads and new tx. You're on top of things as usual!
Licata - a warm welcome to you and wishing you good results!
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Haha yes photo girl, my allergies were on overdrive too. So I spent a lot of money and time to put a zillion flowers in my new backyard. Made a little meditation spot under this tree. It was all so pretty! Came home today and all the bunnies ATE MY FLOWERS!!! Right down to the green stem! Actually It was kind of funny too....
Now I am hanging everything in baskets.Kaption thank you for the good thoughts! I hope you are feeling a lot better today. Unfortunately I hate to say it, but I got the big P word today. Although some lesions in my liver shrunk I got a whole new passle of little buggers in there and a new small one on my lung. That's the worst of it and I'm on to Afinitor and Aromasin. She thinks that is a good combo because I have the mTOR mutation. My DH and I were crushed, cried it out and now I hope to spring back and jet off to Vegas, give the finger to cancer!
Deanna, Luckily they mapped out the whole ordeal very neatly so I just had a brief time to go get some lunch in between the CT and the bone scan, then straight to the dentist. I just wanted it all to be over. Unfortunately my dentist deferred me to a specialist so Monday is root canal day. I sure know how to party!
micmil, I am ready to do a crazy hairdo on purpose. I've had basically the same look all my adult life. It may be time to shake things up.
Thanks so much for all the well wishes and birthday greetings. I had to say when I went for my consult today all the words I get from you ladies hang in my head and help me keep it together in her office. So thank you a million times over!
Thanks Lynne for the wishes, I wish i would meet someone else with MBC too. It's very hard to make new friends for me as I just don't know the best way to approach it. Don't tell, develop a close friendship and drop a bomb? Or tell right away and watch them run for the hills...
Welcome Licata! Frankly I think waiting a week for results is rather cruel.
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(((Artist))). Obviously not the news we wanted to hear from you, but I have to say I love your resilience. Extra prayers tonight that A + A will work very quickly for you, and for a very long time.
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DD had a few things at her school's Spring Show. Wish I could have stayed longer, but it's been a long week for me with scans, Dr appts, the news of some progression, and starting cycle 15 of chemo. Plus, didn't want to tax my back too much...still having some pain and numbness.
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Artist, sorry to hear about your progression, but as MICMEL said, and I'm paraphrasing, we will have results like this from time to time. We all know it's not the end...yet. But it still feels like getting kicked in the teeth once again.
Good for you heading off to Vegas. Give cancer the finger for all of us. As others have said, we still have arrows in the quiver to shoot at this monster.
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artist lots of hugs and best wishes. As I posted in the other thread Dani had the lung node thing it's just insane, they throw darts and hope it hits something. Now you start a good known treatment , best wishes.
Bunnies Re adorable maybe to watch but the way they wrecked havoc wow
Lita so glad you had a great time thx for sharing. What does MO say about you still having the pain.
Still not sold on the plan, I need to feel more comfortable with it
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Artist, have a ball in Vegas! That's giving cancer the finger!! Good luck on your next treatment! Hugs
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Anita & Artist. Happy bday🎂🎂
Lita. You look sooooo happy in that pucture
Artist so sorry to hear if your progression. It's always a gut punch but glad you're going to Vegas as an FU to bc. We all need to try to live our lives to the fullest as best as we can. I know you have wedding planning to do. Trust me that will energize you greatly!!!! Enjoy every minute of that!
Welcome Licata!
Saw Sunset Blvd last night with Glenn Close. Before the show she announced that she was having throats issues and apologized for not performing well. She sounded so raspy! Well I must say her voice was amazing. Everyone was on their feet at the end of the show shouting Bravo. She was a great example of how we persevere. Amazing!!!! So happy I got to see her perform!!!!
MO visit and chemo today. Hoping to get some answers.
Bab
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good luck babs
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Artist~ Poop! On cancer. You go to vegas with your DH and have a blast. They can still keep shrinking those tumors and no one knows how you will respond to the new treatment, i am still thinking new prescription of meds, new results. Yeah that's the ticket!!! Gentle hugs! and when I say crazy hair. I mean crazy hair. Like Macey Grey and even at one point Glenn Close crazy, when she was in fatal attraction lol yipes. I usually wet It a lot and then it looks like I am ready to do my scene of Grease! It grows little by little and I'll take it. Sending prayers your way and also to your caretaker your sweet DH, who clearly loves his beautiful artist!
Lita~ look at you looking all dazzled up and at the end of the red carpet. Looks like your ready for your close up beauty! You travel more than anyone I know. You're amazing. Always up to something with your DH and Sofia!! Just reading all you do wears me out!
Mom~ sending out prayers for you and Dani as always. ~M ~
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Thanks Mic, I can't find people here that took the this combo, then the question is why.
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Artist - hate to hear the P word! What I do like is that you got results promptly and moving on to another tx fast. I have to admit I had quite a chuckle this morning visualizing those bunnies! My sweet little dog in my avatar did the same thing on my tomato plants last year. GRR Enjoy Vegas!
Lita - your pics are always so uplifting and you look darn good!
Good luck today Babs.
Feeling better since yesterday, much less fatigue. Guess I have to figure out the Taxol routine.
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Mom, I think the reason you haven't had anyone speak of it here in this thread, is because usually it is a medicine that is for prostate cancer, and sometimes doctors choose to use it in other instances. This Seems To be the case with Dani, Enzalutamide is an androgen receptor inhibitor. It works by blocking the action of testosterone. Most likely they are trying to find a drug that has not been introduced to her system and the cancer has not learned to imitate yet. It seems to be a strong medicine but mild in the form of major side effects or possible major events. Seizures were listed, but as a rare side effect, other side effects are: Cold-like symptoms (eg, cough, runny or stuffy nose, sneezing, sore throat); diarrhea; dizziness; headache; hot flashes; mild back, bone, joint, or muscle pain; tiredness; trouble sleeping; weakness. Overall it seems to be the same theme with these medicines and the possibility of the side effects do not seem to vary too much. Look for rashes, severe confusion and numbness in any limbs or mouth. Severe back or leg groin area pain.or any change inthe ability to recognize feeling things or any sense of loss of touch.
Herceptin Is very common and is usually for her 2+Cancer,I didn't notice the type of her cancer, but know that they give it as an IV chemo and is generally associated with all of the regular chemo side effects, the same aches and pains and joint pain and fatigue can be a big one because both of those medicines cause severe fatigue. But over all it's nothing that we all haven't felt before. Even though it is intended for prostate cancer. It has been shown to be effective in Her 2 positive and progesterone based tumors. They are constantly cross trying medicines and they have had good results. Switching the prescribed medicine, might just be what she needs to attack those suckers with a new plan of attack!!! Hugs to you both. Hang in there together! So strong. ~M~
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Micmel from what I hear i hope it's not too mild for her. She has been on Herceptin since last July, she stopped for this last trial, so I am not even sure what, and if it ever did anything, because she had constant progression.so why would it be beneficial now. She has ER+PR1%and Her2+ and AR70%.
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What a busy past few hours for this board.
Artist, I'm so sorry. But I love that you and DH can cry it out then take off for some fun! Grab life!!!
Sorry to all who have set backs. We are certainly a group that can adapt to news. I guess that's part of our super powers. We do have super powers, for sure!
Lovely picture Lita!
Well, I've had 2 days in a row where I did not spend most of it flat on my back on the sofa! Let's go for 3, I even did a bit of housework. Slowly, with breaks- but I did it!!!
I've had thoughts about adding a bit of crazy color. My granddaughter is a very talented colorist- but I'm not sure.
Thanks to all who helped pick me up. Feels like I'm moving back into life. ((Hugs))
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mom~ the new tx with the drug for prostate cancer has me thinking that there has to be statistically good results for them to try this for her after everything she's been through. I have also heard it's not too bad in the form of side effects. The reason they stopped for the trial is because it was most likely a possible drug interaction, and a patient usually cannot take anything else's that isn't regulated within the trial because they want concrete findings. I knew she had to be her 2positive to Be on herceptin, but there are links to testosterone being linked closely in cell chemistry make up, that makes those drugs work for these cases in women. I am really praying that this is her ticket , they just Dont decide these things hastily. So I believe that trying a new approach may shake things up for her.
Please keep us posted, I will continue to research and tap my friends in the pharma area, my last six years of employment was working for thermofisher scientific, which deals closely with all of the big named pharmacy companies. The trials are never ending thank goodness and knowing what I know about how they project success with a patient based on findings, makes me think that they believe she may benefit. I'm sure it will be a limited time frame at first to see how well she does and if there is obvious improvement, did they say how long the first course would be? I'm praying for you both so much. Hang in there mom at least they are notbeing idle, I have read some bad stories of oncologists that don't care enough to return phone calls! Keeping you in thoughts ~M~
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good for you Kaption. the carpet is rolled out for you.0 -
Thanks all for the support again. woke up this morning with that "Oh yea" sinking feeling. Luckily I took the day off to pack for our little weekend trip and start perusing my new Tx thread. Going to see John Fogerty in concert while there which a good concert always gives me a boost.
Lita, super nice red carpet look! You are so great about gating out and about with your family.
Mom, yes the bunnies were kind of funny but as I look at my little sanctuary corner I was also sad!!! Need to keep my big lab in the yard from now on to chase those little brats away. Don't know how you keep up with all the stuff going on with Dani but hope this new combo get her on a straight and narrow for a good long time.
babs, That sounds like a lot of fun too. I love theater and with Glenn Close in that role sounds great! Hope you get some answers today!
Linda, Yay to feeling better! Find something fun to do just for yourself. Leave all the "should do's" behind today.
Wow micmil, you are another one like Z, who has a lot of info crammed into that crazy hair head. I learn more here than from my own Onc!
Kaption, good to hear you are feeling better too. Amazing how a little housework can be so enjoyable when we can't do things for awhile. As I said to Linda, if you still feel well today try and do something just for you! Like maybe some new color? LOL!
Ok I'm off to Vegas to win a giant pot of money so I can quit my job and travel.........Whoa! Snap out of it....
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For the record, my head exploded this month and I am taking it easy on all fronts this months.
But still following and praying for all
>Z<
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Z~We're always thinking of you. I know Your results are playing around in your mind, you've mentioned that many times. You have many months under your belt, you're amazing. Your are the example for this medicine ibrance. Stay strong and know we are always here waiting for your next insight and thought. Sending you hugs of strength. Prayers as always ~M~ you are going into the wormhole I just came out of. Don't stay there too long. We need you. ~M~
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