Bone Mets Thread
Comments
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Lonnie,
To answer your question: yes. Diagnosed with bone mets while on Arimidex.
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Lonnie,
Well, this is the bone mets thread, so progression to bone is going to be very common here from women on all types of treatments, including tamox and AIs. Hopefully you will not be joining us.
Stefanie
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Chelle - your tree and set up is so beautiful. Straight out of a Christmas magazine! I hope that this holiday is extra special for you and your loved ones.
Momall - Thank you again for your kind words. Not only are a spectacular mother and caregiver for your daughter but you (and others on this thread) are very motherly and supportive towards me as well. Although I'm trying to push for a first mammogram early - I am only starting to read that radiation from the mammogram isn't always the best. I am afraid of what early mammograms can do for my future. I'm also reading all sorts of things about those of us that are petite / dense breasts etc. and what it all means. I am very glad they found Dani's dx early and if she had waited years like recommended, it could have been a worse outcome. I hope that she can get stable and pain free for the holidays and into the future.
Jazzy - I hope that the Faslodex shorts are not too painful and they do the trick. My mom is going through the same treatment and I feel for anyone that needs these shots in their rear! I hope that the side effects are non existent.
Amy - I am so sorry that your father is in rough shape and although it will be hard to say goodbye - I hope you get some quality time with him. I am so sorry to hear. My father likely has prostate cancer given his levels and it is such a terrible disease. My heart goes out to you and your family at this time.
Exbrxgrl - Interesting points on the dental work and cancer treatment. Let's say one does need invasive dental work while in treatment, - what might happen? I ask since my mother and I have terribly soft teeth and she has to have frequent fillings, root canals, etc. I do as well - we both feel like we live in the dentist chair.
50sgrl - thank you for your support. They should develop a drug to counteract with all of the cancer treatments to take away side effects. Treatment giving you migraines or fatigue? Here's a new drug to take it away. I never realized that tamoxifen can lead to memory loss - for the last few years while my mom was on it - it would frustrate our family that she seemed senile and I feel like a terrible daughter calling her out when it was likely all attributable ti side effects. I'm scared as to new side effects to come. I really hope the radiation and zometa and falsodex can heal her hip up so she can walk again. Her limp makes me sad as it came on so sudden.
To everyone I am missing - hugs!! Wishing for no pain.
I finally told the first person in my office yesterday and she was so supportive. Over time, I know I will need to share the news with my boss and other coworkers to be able to take time out to help my mom more, work remotely etc. Hoping it doesn't effect my job but I don't care. Family is too important.
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Yes, I did mean bone mets. Thank you for the information.
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Chelle how beautiful, enjoy!
Lonnie yes, my daughter was on tamoxifen and was dx w bone mets. I think Pet/CT is more accurate for dx, but different docs, different places do diff things. Good luck
DaughterL- glad to be here for you. Just for you not to misunderstand, Dani had a lump, only then did she have a mamo, was not a matter of being dx early. She had a big lesion that was felt and seen. She did have tx for 2 yrs,and then bam she got mets. So it's not that if she would have waited yrs, she had no yrs to wait, she had a tumor. With that in mind, the rule that the Rad Onco used for her sibs, was the age that she was dx that is when they would get 1st mamo, that is why they(the sibs, she is the oldest) did it at that early age also. And yes, dense breasts are almost always found with young ppl, so sono is recommended, as an added modality. I myself always had sonograms after mamos bcs of dense breasts. (not bcs of age). And it has nothing to do with being petite, happens to be, my girls are petite, but denseness has to do more with youth and the type of breast someone has. Big gals, little gals - denseness does not discriminate. And yes mamo has it's negatives, it is radiation of some type, but in different circumstances for different ppl it's looked as more of a godsend. No it's not usually recommended for young women in the general population to have mamos etc... at this young age. Hope you understand now, why the sibs had it early. If you have any questions and I could help, then by all means.
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Hi ladies.
So the newest is my estradiol levels are not low enough so tomorrow I need to get ANOTHER shot in the butt of Lupron to add more estrogen blocking chemicals to my body. My onc will increase my monthly dosage from here on out. I am annoyed I need to go back into the infusion center again just for this. The nurse said it will help my mood swings too. Is this true? I thought more estrogen blocking will make things worse not better but she said it might help.
Amy- I am so sorry for what you are going through. I am sending you a prayer for strength, but you are allowed to be a mess! It's a lot to handle and we are all here for you in spirit, even if we can't be here for you in person. ((HUGS)).
Lonnie- welcome. Everyone on this thread has bone mets from breast cancer, hence the title of the thread. Hope you find all the information and support you need here! I am in NJ too, I go to Saint Barnabas in Livingston NJ for my treatment. I had progression while on Tamoxifen AND then while on ARIMIDEX. I'm now on Ibrance, Xgeva, Falsodex, and Lupron with a side of very strong pain meds, oxycontin and Subsys (fentanyl spray).
I hope everyone is having a nice day and pain free day. I'm struggling w anxiety, but I also think it's coupled with withdrawl from the Subsys, since it's such a powerful narcotic.
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Hi Mommal - thank you for the clarification, so sorry I misunderstood from earlier posts about Dani. Good things to know about the young age / dense breasts / etc. I am just starting to do my own research on what it all means for me and options for being young. My doc agrees first step is to do the genetics then to go from there.
At this point, i am wishing for something to hit the market to treat Dani, my mom ,and everyone with this awful MBC for years and years to come. I want everyone to have at least 20-30 years left in them and no side effects. My mom said she's doing great from all of this treatment they are starting to throw at her but she is clearly hiding it to not worry me. My dad says she has been fairly nauseous and extremely tired all week from it all. I'm hoping these feelings subside as this is her first real week of new treatments.
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Sorry to jump in in the middle of things but I wondered if anyone here might have some experience with this.
Was in the ER on Saturday morning because I spiked a 102.5 fever. Seven hours, 3L of fluids, IV anbx, radiograph of my chest and ultimately a chest CT and we had a Dx of pneumonia. However, the ER doctor noted that I had spinal mets. I told him I was aware and he was relieved.
Oncologist was concerned as T10-11 looked more advanced than previous. He ordered a Bone scan to see if anything else turned up since the field was limited to my thorax. Bone scan turned up right 8th rib so definite difference from any previous scans CT/MRI/PET in the last three months. Inconclusive without a PET but ominous. Trying to get permission from insurance for PET, last time it was like pulling teeth. In the meantime, we're forming a plan. Since we can see that THP isn't working just based on the increase in size in T10-11 mets, we're going on the assumption that something different needs to happen.
I was due for chemo today but declined it. Next week I will start Kadcyla. I haven't followed any of the discussion of those who have been on it because I never thought I would need it. Who does? I know it's newly out of trial so experiences and long term effects are probably limited but I would love to hear anything you have to offer about what to expect.
I'm so sad, I lost all my hair for absolutely no gain but I will start growing it back right away! That makes me super happy.0 -
cjanet,
I also go to saint Barnabas. I had all of my treatment there. My oncologist is Dr. Brown. I have the bone scan on Tuesday. Trying to remain positive.
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Hi ladies. So I have some terrible news from my brain scan. I am till trying to process what happened. Got an early phone call from onc's office to come in ASAP. DH and I dressed quickly and drove down. Seems my headaches are being caused by skull bone mets with edema of the dura. There is also a very iffy chance that I have fluid as well. So off and running we are. I was put on Decadron for the headaches and it seems to be working somewhat already and appts start next week. Neuro oncologist and radiation onc next week to get things sorted out and a tx plan in place. My MO is w/o egomania and he has set up all these appts with specialists and then we shall all get together and discuss all my options as a team
That's where we stand right now. I am in absolute shock, but I still have not cried. I don't know what to do. All our wills and trusts are in order. After the new year we will go to Star of David funeral home. I don't want my dear darling DH to handle this alone. He is my love of 40 years. I am so worried about him.
And now my guiding light.......my reason to live........
Much love, Myra.
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Myra: you are in my thoughts and prayers. I'm so sorry you have received such a shock but pleased to see your MO assembled a team and next steps so quickly. You are such a supportive voice on these boards. Please rely on the support of all of us in any way you need it.
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Myra, very sorry for the bad news. You are in my thoughts. Sounds like everything is in order which is good. Hope the team meeting chooses an effective plan for you and the treatment to begin soon. It is still bone mets, right? Hugs and more hugs.
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Myra, Noooooooo !!!!!!!
Your guiding light is a beauty, so power through what you need to do so you can watch her grow some more.
Stefanie
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Myra,
Baruch HaShem, you will have a tx plan in place soon and treatment will kick it back.
Caryn
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Myra im sorry to read this. My heart goes out to you.
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Myra, I'm so so sorry you are having to face this and my heart goes out to you. Sounds like you have a great onc who is taking the reins and will steer you in the right direction. Yes, keep Mallory, your dh and family in your heart as you go forward and start a plan. You are very strong and that will help you get through. We will be strong right along side of you.
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Myra - I am so very sorry. I understand your being in shock, let the tears flow when they come and remember we are here for you all the time and any time. I'm so glad your MO is getting a medical team together to give you the state of the art care you deserve. This will a long week-end for you but know that I'm here for you. I am praying for and with you. Holding your hand with love and hugs.
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Myra, so sorry to hear your news but am very glad to hear that your doctors are quickly getting your treatment started. Hang in there, we are all here for you
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Myra,
I am praying for you. I am glad your MO has a plan for your treatment. We are here for you, holding your hand.
Lynne
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Myra, so sorry to hear this news. As others have said, we are here for you. ((hugs)) Dee
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Oh Myra you sure made me cry, so so sorry you were blasted with such a shock. How lucky you are thou to have a good guy as our Onco and helping you out in such a hard time. And look at your wonderful family, YOU ARE NOT alone. And you know what, they will come up with something. Let's hope to hear next wk that you have your tx in order. Kisses and Hugs. Love the Menorah and the light shining through the kids. Try to think about that.
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Maine agh, but interesting that going to the ER gave you a look into stuff going on. My daughter was on Kadcyla, was not too bad. She was on it a short time, bcs she had progressed on 6mos of H/P/Abraxane then went on to Kadcyla, but still had progression(as if it was even possible!), so she had it for a short time. With progression for you how could they
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how could they refuse you having a Pet? Not right.
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Myra, I am so sorry to hear this news but I know someone at our cancer centre with skull mets and they were treated and never returned. I am hoping for the same for you. Please don't despair, I know easier said than done. I'm praying your team will act quickly and treatment will get rid of them. Sending positive thoughts and extra big healing hugs to you.
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We just walked in tonight from 4 days in Las Vegas, so once again I'm behind on several pages of posts. But I did happen to read yours as we were driving home, Myra, and wanted to respond to it right away. I can only imagine how you feel, but just know that I (and I'm sure everyone else here) is feeling the blow from your news, and we are with you in determination and spirit to get this under control -- and you will. I'm glad the Decadron is already helping, and I'm glad you have a neuro oncologist on your team. Hang in there! I hate that you're facing this, and I pray your medical team will treat you quickly and successfully. I hope you can feel the prayers surrounding you. Deanna
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Myra I'm sorry you are going through this I truly am. However you sound like you are getting the treatment you need and quickly that's the main thing. I know someone up here in Canada that also had brain Mets and has it under control with her treatment. Your grand daughter is so beautiful and her Papa looks so proud family is everything and I truly believe everything is possible where love is present and you have that. Hugs from Canada😊
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Myra,
Along with everyone else, I am very sorry for your shocking news. I also will be praying that your medical team will be able to find just the right treatment for you.
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LindaE - I asked my MO today about the mild increase in my soft tissues I'd asked about. It turns out that it is from the Faslodex injections. Go figure. But glad it's nothing to be concerned about.
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Jazzy - now that's good news!
Deanna - glad to see you here. I was worrying about you - maybe you had mentioned you were going away but I admit I missed a few things around here after my famous episode with dye contrast.
Myra - thinking of you this morning.
Annie - also nice to see you here. I hope you're feeling better from those adverse effects of acupuncture.
Chelle - that pic really belongs in a magazine! How beautiful.
Mommal - how are you holding up?
Wishing all a good day.
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Myra- I am praying for you. I am so sorry you were blasted w this awful news. Let the tears flow when you are ready, we are here for you. I am so glad your onc has set the treatment up so quickly. I know it's awful but what I'm telling myself is, it's still bone mets, right? Not soft tissue, so that's good, right? You have a wonderful husband, family and grandchild to give your days something to look forward to. But we are here when and if you need support or a good cry ((HUGS)).
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